The Naive Patient

September 17, 2013

By Jody Smith

pixabay-teddy-bear-windowAbout 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.

Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into language I could understand.

Confusion and growing despair

Most of what I found was written in such complex medical jargon that I couldn’t tell what I was reading. I suspected that there might have been answers if only I could comprehend what I was reading.

But with no background in science or medicine, no knowledge of most of the terminology, and passing all this falteringly through a riddled ME/CFS brain, I would end up so exhausted and so depressed that stumbling off to bed was the only recourse for temporary relief.

Perhaps the only exception to the jumble of facts and conjecture came on the site of Phoenix Rising, written by Cort Johnson, with his smiling face on each article. His online presence was reassuring, but unfortunately he could not tell me what was wrong with me or what to do about it.

I continued plowing through all the material I could find for some months despite the heaviness this search burdened my already taxed mind, body and emotions with. Eventually I decided to give up a seemingly lost cause, as I reached a conclusion which I now realize to have been spectacularly naive.

I remember at one point laughing at myself, saying to my mother, “Who do I think I am, Sherlock Holmes? What makes me think I am going to come up with answers? I have no background or training. I don’t know what I’m looking for. I mean, if there is an answer out there, my doctor will be the one to tell me.”

She didn’t know anymore about it than I did, and so she agreed that asking my doctor would indeed make sense.

Innocence waiting to be crushed

I had great faith in my family doctor back then. I hung on to this trust stubbornly, in the face of growing indications that he was not there for me.

We’d had a congenial relationship for about a decade before I got sick. He was in the avant-garde of young doctors I thought, when our relationship first began. I didn’t go to his office very often in the years before I became this ill, but I was always comfortable with him. I felt like he was on my side.

All that changed with ME/CFS. It was a gradual change, so gradual that at first I thought I was imagining things … being too sensitive, too paranoid. But eventually there was no denying the complete reversal that had taken place.

Seven years ago, I came to see him, thinking I was having a stroke. He smirked and told me I wasn’t. Then he took my blood pressure which was dangerously high, uncharacteristic of me, and the smirk disappeared. He sent me to the hospital for tests immediately.

He sent me for some blood tests and some other tests, which I’ll give him points for, but when they all came back “normal”, he had no suggestions. I guess I was lucky that if I asked for a referral to this specialist or that one, he always sent me.

But he made it clear that he knew nothing about this mystery condition, or where I might find possible treatment; and he was not going to try to learn about it. He was not going to help me.

He asked me one day if there were any things that helped my symptoms. I told him about the only thing that at that time made any difference: I said, “Going to bed.” He said, “Well, do that then.”

I did not say, but felt this reaction strongly – “I am not going to spend the rest of my life in bed!” My passion, of course, stood upon no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed.

The fact that my doctor was perfectly fine with that really stuck in my craw.

Some good treatment but it was a very mixed bag

The neurologists and the ophthalmologist that I asked for referrals to, treated me well. Though all they could do was perform tests whose results showed that I was right as rain.

One neurologist really touched me when he said that he wanted me to understand that just because he couldn’t find anything did not necessarily mean that nothing was wrong. He said that this often happened, because the study of the brain was a relatively new science and they didn’t know enough about it yet.

He also offered the interesting reassurance that the fact that since this thing was already of a long duration, it was probably not going to kill me, because if it were going to it probably would have by now. I was actually comforted by this statement. And comforted by this response from one human being to another, so different from what I’d become used to from my own doctor.

I made an appointment with my family doctor after I’d gotten a letter requiring my participation in jury duty. I was completely crashed at that time.

Just going to my GP was enough to leave me wrung out and bedridden for days afterwards. It would have been impossible for me to drive the hour into the city and sit in a court room all day, even once. Who knew what kind of self-destruction would be awaiting me if I tried?

I took the letter in to my doctor, to get his official endorsement that I be released from this Herculean task.

This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, “And what possible reason is there that you can’t do jury duty?”

I stared back. I said, “Well, for starters, I can’t stay out of bed all day!”

Silence. I could see him back down a little. Saw the aggressive attitude ease just a bit. Saw his mind register — “Oh, right. This is her.”

No apology for being rude. He did explain himself a bit, saying he’d had a number of relatively able-bodied people that morning waving similar letters, trying to shirk their duty. Like he had just implied I was doing.

This, incidentally, is when I got my “official” diagnosis of ME/CFS. Not because he’d been intensively doing the work, but because he had to write something on the form about jury duty, he had to name my condition. I suggested ME/CFS and he wrote it down.

After our tete-a-tete about jury duty, I never went to see him again. And when he retired a few years later, I was grimly delighted to hear he was gone, and this meant I could see the new doctor who would be taking his place.

Teddy, heart and patchI have been in once to meet the new guy, and he seemed like he was alright. He did not scoff, and he was honest about the fact that he didn’t know if he could help me. He was also glad – perhaps relieved – to hear that I was seeing a naturopath who had been helping me to make progress.

My old doctor had been quite put out that I had been seeing a naturopath, and said in a sulky tone that “they use drugs too you know.” I didn’t bother engaging with him about this, I no longer cared what he thought.

I just took a deep breath, put a smile on my face and said, “She has been making me better.” Surprisingly he looked a bit abashed at that, and said, “Well … we don’t know everything.”

I thought but did not say, “You’re not kidding!”

For the most part, I have turned my back on conventional medicine. If I were to be in an accident or need surgery or some other quick intervention, I’d go to a conventional doctor. But my experience over the last decade and then some has been that for anything chronic, I would be wasting my time.

What has your experience been with the conventional medical community?

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69 comments

{ 69 comments… read them below or add one }

Tally September 17, 2013 at 1:13 pm

Doctors have been completely useless. One even asked me how come I'm the only person in the world to have these symptoms, even thought I've told him few appointments earlier that I fit ME ICC perfectly.

I must admit that no doctor has been outright cruel or rude. Just clueless and a bit arrogant.

I've been ill for 4 years and I had a million tests done, but I still fear that I missed something. Should I have done endoscopy? Was tilt table test done properly, or should I repeat it? Should I see yet another doctor?

But all that takes energy and money I don't have.

I read Phoenix Rising and medical papers as much as my concentration and poor knowledge of medicine will allow me. But I am still petrified that I have missed something and if I had only seen it I would be able to get out of bed.

Shell September 17, 2013 at 1:15 pm

Thanks for this Jody. I think the saddest part of this is how generally universal your story is. I will have been ill 11 years this November. For the first 8 years I was treated appallingly and lied to by neurologists- telling me there was nothing really wrong and it would all go away – who would even contradict the findings of other neuros in the same team rather than accept something was up.

My GP is one of the good guys. Thank God I found him.
Once we discussed death and he asked me if I was afraid this would kill me.
"God no!" I responded, perhaps with more feeling than was safe, "It would be done with then. No, what scares me is the thought this thing could put me in bed and I wouldn't be able to get out. THAT truly terrifies me."
He accepted this with surprising understanding.
I am not relieved by the idea this won't kill me. When my son took me to the cardio last week he admitted that he and the other two adult kids think I'll die and they are worried about this. I begged him not to be.
"I can't do another ten years of this," I told him. "Don't wish it on me."
He understands. I know he, his lovely wife and my other two adult kids will be there for the younger three; and I have prayed to make it through the home education until my youngest can learn independently.
But ye gods Jody I don't' want to live another ten or worse still a full lifetime, like this.

These days when I look around the net for info I too often find "oh it'll be ok" attitudes or "it's not that bad." YES it IS that bad. NO it isn't OK. My husband read out the bit in the NHS Fibro leaflet where it says fibro is fine and won't disable you. There I was in my wheelchair in the hospital. LOL!
I admire everyone here who survives each day with this disease.

Jody September 17, 2013 at 1:26 pm
Tally

Doctors have been completely useless. One even asked me how come I'm the only person in the world to have these symptoms, even thought I've told him few appointments earlier that I fit ME ICC perfectly.

I must admit that no doctor has been outright cruel or rude. Just clueless and a bit arrogant.

I've been ill for 4 years and I had a million tests done, but I still fear that I missed something. Should I have done endoscopy? Was tilt table test done properly, or should I repeat it? Should I see yet another doctor?

But all that takes energy and money I don't have.

I read Phoenix Rising and medical papers as much as my concentration and poor knowledge of medicine will allow me. But I am still petrified that I have missed something and if I had only seen it I would be able to get out of bed.

Tally,

I know the feeling. I used to be haunted by that feeling. I have been fortunate to have been getting progressively healthier these last few years and now mostly am able to have a sort of low-level/normal life. The pressing panic of trying to find out what took my life away has been tempered by this. But I do remember clearly what that was like. Not knowing where to turn, so few people interested enough to try to help me in any way … Reading page after page of incomprehensible scientific jargon, so obviously NOT written for someone like me. Who knew whether there was something in some of those pages that might help me? Reading page upon page of terrifying apocalyptic scenarios based on … nothing, and the other extreme, drivel that told me I was really overreacting and if I would just take this pill or follow that regimen, why … I'd realize I was actually fine.

The information out there these days is less than satisfactory, but it is better than it was even a decade ago. It is easier to find, and there are now support groups (like this one here:)) that weren't here not so long ago. Hang in there Tally. Better things may yet be coming.

Jody September 17, 2013 at 1:34 pm
Shell

Thanks for this Jody. I think the saddest part of this is how generally universal your story is. I will have been ill 11 years this November. For the first 8 years I was treated appallingly and lied to by neurologists- telling me there was nothing really wrong and it would all go away – who would even contradict the findings of other neuros in the same team rather than accept something was up.

My GP is one of the good guys. Thank God I found him.
Once we discussed death and he asked me if I was afraid this would kill me.
"God no!" I responded, perhaps with more feeling than was safe, "It would be done with then. No, what scares me is the thought this thing could put me in bed and I wouldn't be able to get out. THAT truly terrifies me."
He accepted this with surprising understanding.
I am not relieved by the idea this won't kill me. When my son took me to the cardio last week he admitted that he and the other two adult kids think I'll die and they are worried about this. I begged him not to be.
"I can't do another ten years of this," I told him. "Don't wish it on me."
He understands. I know he, his lovely wife and my other two adult kids will be there for the younger three; and I have prayed to make it through the home education until my youngest can learn independently.
But ye gods Jody I don't' want to live another ten or worse still a full lifetime, like this.

These days when I look around the net for info I too often find "oh it'll be ok" attitudes or "it's not that bad." YES it IS that bad. NO it isn't OK. My husband read out the bit in the NHS Fibro leaflet where it says fibro is fine and won't disable you. There I was in my wheelchair in the hospital. LOL!
I admire everyone here who survives each day with this disease.

Shell

It is sad indeed how common my story is. Seems to be more the norm and it shouldn't be. And I can totally understand how you feel. But perhaps what is ahead won't be more of the same. Perhaps there will be some improvement, some new piece of information, some headway, that will make life more bearable.

Only five years ago, it was all I could do to hang in there and force myself through the (limited) motions each day. Felt horrific when I woke up, felt horrific all day long, felt horrific when I went to bed. Saw no possible change in my future. Saw no resources, no opportunities, no healing, no way to take care of myself beyond being able to dress and feed myself — and I couldn't even do that for months on end when the joint and muscle pain and inflammation was bad.

I wish I could tell you something better is ahead for you. I can say that while there's life there is hope. If anyone had tried to tell me what things were going to change for me back then five years ago I really would have tuned them out as being pointless and irritating. So I will understand if you do that.:) But even though I didn't think anything decent could ever happen to me again, … some decent things have happened and made life better. I am hoping for this to happen to you.

Valentijn September 17, 2013 at 1:51 pm

I've seen a lot of clueless practitioners, some arrogant, and a couple neurologists that would qualify as "rude and cruel". I completely agree that the standard medical system is unable to handle a chronic disease which is not well understood. If you've got type I diabetes – no problem. Broken limb – easy.

But a patient with something complicated and chronic is generally abandoned as soon as possible. My GP is good at taking new symptoms seriously and referring me to specialists, but none of the specialists know what to do with ME, and there's no way she can handle it in 10 minute appointment blocks. She's also rather relieved that I see a Naturopathic Doctor in another country to try to manage my issues, though it gets complicated in the Netherlands because she's limited in what she should be prescribing without a (local) specialist getting involved.

The health system really needs to change to accommodate chronic illnesses without easy answers. There should be someone in the regular system who we can go to for symptom management.

xchocoholic September 17, 2013 at 2:14 pm

I was shocked to learn that alternative medical professionals are better equipped
to deal with chronic illnesses. My family is still pro traditional medicine
and anti holistic so I came by my naivete naturally. The animosity between some of
these professionals is unprofessional and unfair to patients.

I see an integrative doctor, both md and holistic, so I can take advantage of
the best from both worlds. It's still not been an easy road tho with all the
rabbit holes that even doctors can get caught up in.

Thankfully, one of
my ex gps started me on the food intolerance pathway in 2005 so most of
my severe cognitive problems were gone quickly. Then I could at least try to
nderstand what i read online. Most of my info came from DAN (defeat autism
now). Imho, that was easier than taking on the cfs jungle.

great article Jody. It's sad that so many of us can relate but you summed it
up well. tc .. x

Legendrew September 17, 2013 at 2:44 pm

Good article – it's always hard for doctors to see patients with diseases they don't understand which is likely why most shun those of us with ME/CFS, certainly if the roles were reversed i'd like to think i'd try to be more understanding but I can see the awkward situation it puts doctors in. The best doctors are those who openly admit they don't understand it but offer their personal opinions and advice – neuropaths do this day in and day out which is likely why at this point they seem the most helpful for ME patients. Hopefully with more research conventional medicine can find some answers and provide some conventional healthcare options for us.

Jody September 17, 2013 at 3:30 pm
Valentijn

I've seen a lot of clueless practitioners, some arrogant, and a couple neurologists that would qualify as "rude and cruel". I completely agree that the standard medical system is unable to handle a chronic disease which is not well understood. If you've got type I diabetes – no problem. Broken limb – easy.

But a patient with something complicated and chronic is generally abandoned as soon as possible. My GP is good at taking new symptoms seriously and referring me to specialists, but none of the specialists know what to do with ME, and there's no way she can handle it in 10 minute appointment blocks. She's also rather relieved that I see a Naturopathic Doctor in another country to try to manage my issues, though it gets complicated in the Netherlands because she's limited in what she should be prescribing without a (local) specialist getting involved.

The health system really needs to change to accommodate chronic illnesses without easy answers. There should be someone in the regular system who we can go to for symptom management.

Valentijn

What I've seen has me convinced that if you need quick intervention, after an accident, or you need your appendix out or something, conventional medicine wins hands down. But it has no idea about what to do with chronic conditions. I would no longer allow a "regular" doctor to treat me. I would no longer be willing to try any of their drugs. If I break a bone, or need a transfusion, fine. But I will get my health broken by a chronic condition restored elsewhere. My naturopath and chiropractor have done wonders for me.

Jody September 17, 2013 at 3:32 pm
xchocoholic

I was shocked to learn that alternative medical professionals are better equipped
to deal with chronic illnesses. My family is still pro traditional medicine
and anti holistic so I came by my naivete naturally. The animosity between some of
these professionals is unprofessional and unfair to patients.

I see an integrative doctor, both md and holistic, so I can take advantage of
the best from both worlds. It's still not been an easy road tho with all the
rabbit holes that even doctors can get caught up in.

Thankfully, one of
my ex gps started me on the food intolerance pathway in 2005 so most of
my severe cognitive problems were gone quickly. Then I could at least try to
nderstand what i read online. Most of my info came from DAN (defeat autism
now). Imho, that was easier than taking on the cfs jungle.

great article Jody. It's sad that so many of us can relate but you summed it
up well. tc .. x

Thanks xchocolholic

It seems to me to be the way it is. For a chronic condition seek alternative medicine. There are some conventional doctors out there who seem to have a grip on some of the things that work for us but they are a little unconventional anyway.:)

Jody September 17, 2013 at 3:36 pm
Legendrew

Good article – it's always hard for doctors to see patients with diseases they don't understand which is likely why most shun those of us with ME/CFS, certainly if the roles were reversed i'd like to think i'd try to be more understanding but I can see the awkward situation it puts doctors in. The best doctors are those who openly admit they don't understand it but offer their personal opinions and advice – neuropaths do this day in and day out which is likely why at this point they seem the most helpful for ME patients. Hopefully with more research conventional medicine can find some answers and provide some conventional healthcare options for us.

Legendrew,

I agree. I understand that we don't make their day. I've had some specialists that were highly decent, they scratched their heads and told me they didn't know the answers for me. They talked to me like I was a human being going through something scary. These were decent men.

The others were people I would not have wanted to know in my personal life.

Misfit Toy September 17, 2013 at 4:09 pm

I have had too many horrible experiences with docs to write about. One that I will never forget was an endocrinologist I was seeing at University of Penn. My hormones were so whacked out. I had high testesterone and DHEA. She said to me, "I see nothing wrong with you. So you have high DHEA. So what? That doesn't make you sick. I am one of the best endocrinologists, as stated in TOP DOCS of Philly. If I can't find something wrong with you, nothing is wrong with you." I was 23 years old. I am now 43. The very next week I went to a regular GYN who looked at my blood work and said, "Okay, this is easy…you have Polycystic Ovarian Syndrome. PCOS." He then did a vaginal ultrasound to prove it. The other doc wrote in my file, that I had more than likely been molested. Can you imagine? I sent her his tests and photos of my ovaries full of cysts. No response. If only I had a voodoo doll that worked.

And, that is just one example. Conventional medicine has failed us, but alternative medicine has, too. I have been to several holistic docs that pass on their supplements that rarely work. If you asked me what has worked more; I would say medicine. Pills from docs. Oregano oil never did anything and glutathione has made me sicker than a dog. And holistic docs can be just like regular doc's. If they don't see you getting better they may want to dismiss you. My last TCM doc let me go because she wasn't seeing results.

Sasha September 17, 2013 at 4:18 pm

Great article, Jody. I often think there should be a book for new patients with all the issues – medical, political, advocacy, etc. – that they need to know about.

Tally September 17, 2013 at 5:25 pm
Jody

Tally,

I know the feeling. I used to be haunted by that feeling. I have been fortunate to have been getting progressively healthier these last few years and now mostly am able to have a sort of low-level/normal life. The pressing panic of trying to find out what took my life away has been tempered by this.

I think my panic comes from the fact that I'm constantly getting worse. That seems to be a rare thing for ME so in a way I feel like I must be doing something wrong.

caledonia September 17, 2013 at 5:54 pm

If you all want a good laugh, I used to imagine, even into adulthood, that doctors had some sort of magic empathic powers where they could feel the symptoms you were feeling if you described it well enough.

Once I got sick and had more exposure to doctors, I soon learned that they didn't have a clue any more than anyone else.

Most docs told me they didn't know what was wrong and they were sorry but they couldn't help me. Those were the more decent ones. On the other hand, my naturopath more or less gave me the boot after many years saying I didn't want to get well. After that, the feeling was certainly mutual, and I haven't been back.

Dreambirdie September 17, 2013 at 6:11 pm

Oh Jody, don't get me started. If I had to list all the cluelessly idiotic, worthless, and/or dangerous advice I've received from the MDs I consulted in the past, I'd be writing for an hour. So glad I steer clear of THOSE PEOPLE at this point. They are not qualified to treat anyone who doesn't fit into a neat category in their doctor manual, and we surely do not.

I stick to TCM–acupuncture and Evergreen herbs, see a naturopath for hormones and consult with the ocean for everything else.

Jody September 17, 2013 at 6:33 pm
Misfit Toy

I have had too many horrible experiences with docs to write about. One that I will never forget was an endocrinologist I was seeing at University of Penn. My hormones were so whacked out. I had high testesterone and DHEA. She said to me, "I see nothing wrong with you. So you have high DHEA. So what? That doesn't make you sick. I am one of the best endocrinologists, as stated in TOP DOCS of Philly. If I can't find something wrong with you, nothing is wrong with you." I was 23 years old. I am not 43. The very next week I went to a regular GYN who looked at my blood work and said, "Okay, this is easy…you have Polycystic Ovarian Syndrome. PCOS." He then did a vaginal ultrasound to prove it. The other doc wrote in my file, that I had more than likely been molested. Can you imagine? I sent her his tests and photos of my ovaries full of cysts. No response. If only I had a voodoo doll that worked.

And, that is just one example. Conventional medicine has failed us, but alternative medicine has, too. I have been to several holistic docs that pass on their supplements that rarely work. If you asked me what has worked more; I would say medicine. Pills from docs. Oregano oil never did anything and glutathione has made me sicker than a dog. And holistic docs can be just like regular doc's. If they don't see you getting better they may want to dismiss you. My last TCM doc let me go because she wasn't seeing results.

Misfit Toy,

Sounds like you've really been through it. I have been fortunate with my naturopath. She was the first one I saw, and her treatment has been working for me.

Jody September 17, 2013 at 6:35 pm
Sasha

Great article, Jody. I often think there should be a book for new patients with all the issues – medical, political, advocacy, etc. – that they need to know about.

Sasha

Such a book would be great. I certainly had no idea what end was up when I first got sick. Had no idea how to get through a day, had no idea just how much rest was needed — took me a couple of years to cut back on all the activity that needed to be jettisoned, and just got sicker as time went on.

Knowing what to watch out for with doctors would have been a huge help. Knowing how to talk to them and how to protect myself would have made a huge difference.

Jody September 17, 2013 at 6:38 pm
caledonia

If you all want a good laugh, I used to imagine, even into adulthood, that doctors had some sort of magic empathic powers where they could feel the symptoms you were feeling if you described it well enough.

Once I got sick and had more exposure to doctors, I soon learned that they didn't have a clue any more than anyone else.

Most docs told me they didn't know what was wrong and they were sorry but they couldn't help me. Those were the more decent ones. On the other hand, my naturopath more or less gave me the boot after many years saying I didn't want to get well. After that, the feeling was certainly mutual, and I haven't been back.

Caledonia,

My mom was a nurse and my dad a pharmacist whose best friend was a doctor. My mom in particular taught me that doctors are just regular people, even the ones who try to act like they are all-knowing. So I was less deluded with the Doctor as God thing that many people are susceptible to. Even with that, I was unprepared for what I ran into with my doctor.

Your naturopath sounds like a real jerk. Telling someone who is sick that they're not getting well because they don't want to is disgusting.

Jody September 17, 2013 at 6:40 pm
Dreambirdie

Oh Jody, don't get me started. If I had to list all the cluelessly idiotic, worthless, and/or dangerous advice I've received from the MDs I consulted in the past, I'd be writing for an hour. So glad I steer clear of THOSE PEOPLE at this point. They are not qualified to treat anyone who doesn't fit into a neat category in their doctor manual, and we surely do not.

I stick to TCM–acupuncture and Evergreen herbs, see a naturopath for hormones and consult with the ocean for everything else.

DB

Sounds very like what works for me, with the addition of some supplements. Acupuncture and chiropractic have been amazing for me.

Dreambirdie September 17, 2013 at 7:38 pm
Jody

DB

Sounds very like what works for me, with the addition of some supplements. Acupuncture and chiropractic have been amazing for me.

Acupuncture is my "energy medicine," and yes I take lots of supps as well.

The thing I still haven't figured is SLEEEEP. Oh how I would love some of that. o_O

Jody September 17, 2013 at 7:39 pm
Dreambirdie

Acupuncture is my "energy medicine," and yes I take lots of supps as well.

The thing I still haven't figured is SLEEEEP. Oh how I would love some of that. o_O

Tried Rescue Remedy, valerian or melatonin?

Dreambirdie September 17, 2013 at 7:50 pm

Jody All of the above, along with about 70 other herbs, supps, and weird brain gadgets, all with little or no benefit. The best I get at this point is 6 hours of interrupted and poor sleep. I know if I could get more, my life would change dramatically.

Jody September 17, 2013 at 8:05 pm
Dreambirdie

Jody All of the above, along with about 70 other herbs, supps, and weird brain gadgets, all with little or no benefit. The best I get at this point is 6 hours of interrupted and poor sleep. I know if I could get more, my life would change dramatically.

Nuts. That's all the ideas I've got.

Victoria September 17, 2013 at 10:05 pm

As you know, Jody, I have been lucky enough to have 'normal' everyday health conditions which show up on tests, so I have faired far better than most people with chronic pain, fatigue & other miscellaneous debilitating symptoms.

But one thing that hasn't been resolved is my lack of deep restorative sleep (despite 8-9 'sleep' hours each night).

Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

In my particular case, lack of deep restful restorative sleep seems to coincide with high blood sugar.

I might suggest that EVERYONE with a sleep problem (who has cut out caffeine and any other stimulant) tries staying off the computer for one whole week (not even email or blogging) and seeing if the over-stimulated mind calms down.

Everyone is unique and responds to different treatments, but in my case, I still believe 'sleep' and 'stress' are my biggest problems. Diet (whatever works for you), exercise (slow walking in fresh, unpolluted air), keeping the body well-hydrated and getting enough deep sleep are paramount as starting blocks to resolving some chronic health issues. (notice I said 'some', not 'all').

People tell me they can't sleep, but when I see them on the internet spending lengthy hours researching, scrolling through lengthy articles and having lengthy conversations on forums, I can't quite believe they haven't tried staying off the computer (tv etc) – I mean literally, not turning the computer on at all.

I am also very lucky in having a supportive GP (who believes me and follows up every request or test I ask for, even though he, personally, can't offer much help).

kisekishiawase September 17, 2013 at 10:59 pm
Valentijn

I've seen a lot of clueless practitioners, some arrogant, and a couple neurologists that would qualify as "rude and cruel". I completely agree that the standard medical system is unable to handle a chronic disease which is not well understood. If you've got type I diabetes – no problem. Broken limb – easy.

But a patient with something complicated and chronic is generally abandoned as soon as possible. My GP is good at taking new symptoms seriously and referring me to specialists, but none of the specialists know what to do with ME, and there's no way she can handle it in 10 minute appointment blocks. She's also rather relieved that I see a Naturopathic Doctor in another country to try to manage my issues, though it gets complicated in the Netherlands because she's limited in what she should be prescribing without a (local) specialist getting involved.

The health system really needs to change to accommodate chronic illnesses without easy answers. There should be someone in the regular system who we can go to for symptom management.

i couldnt agree more. ive came across many doctors who when they know im looking for information about my disease they jump into conclusion judge me a psychosomatic and making up my own disease because of it. they like patient who doesnt know anything at all who just nods their heads and do, take whatever they told to.
like i would suffer myself more to look for medical information that i have no clue and not appealing to me at all if its not because they dont help me when body is crying for help. how i wish i shouldnt have to stress myself more looking for help. id rather do something else thats more interesting if i could get help from them, i swear.

taniaaust1 September 18, 2013 at 12:31 am

"This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, “And what possible reason is there that you can’t do jury duty?” "

I think I must of been seeing your doctors brother, I had a dr who had exactly the same attitude, sadly I had him for 2-3 years and was fooled by him all that time as I kept telling myself that it was me probably being paranoid ,each time I started to think this dr had something against ME/CFS. (He'd so often cancel my appointments on me which I'd book 6 weeks in advance but came up with reasons but he did that so much that I started to wonder).

Then one day I went in very upset as I'd had a severe collapse while trying to get home from his visit quite recently before. No taxis were available in my local town for several hours this day, so I'd had to attempt to walk the very short distance home but couldnt make it. Was staggering up the road then looking drunk, trying to stay on my feet and about to faint and desperately needing to get home fast due to about to pass out (and it was cold and about to rain). I ended up collapsed in the gutter, ringing random businesses in the town close by, begging ANYONE (all these strangers) to come and get me to take me home, horrific nightmarish experience.

Anyway.. I was telling this dr about what had happened and his reply (which came out more like an order) "You arent disabled!!" This was even thou I'd been on a disability pension for several years and was seeing several CFS specialists. Turned out this shockening doctor wasnt even even telling me about my CFS specialists recommendations whenever they contacted him on what they wanted him doing with me (so he left me thinking I'd been abandoned by them too).

"I told him about the only thing that at that time made any difference: I said, “Going to bed.” He said, “Well, do that then.”

I did not say, but felt this reaction strongly – “I am not going to spend the rest of my life in bed!” My passion, of course, stood upon no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed.

The fact that my doctor was perfectly fine with that really stuck in my craw."

Nods.. that truely sucks. I was doing that too and then cause I then wasnt complaining about so many symptoms due to doing nothing at all, one of my CFS specialists somehow came to the conclusion that I'd recovered!!! My activity level thou was something like only 5% of normal.

Another thing which happened is my CFS specialist wasnt listening to me. I told him for years I had orthostatic hypertension but he never took my BP while standing. Then one day he suddenly did it (i'd given up mentioning it by that time) and to his shock he saw my BP go up to 170 with 1 min of standing. He goes something like "oh this is what is wrong with you". I could only stand there is horror as I'd been telling him this was going on all along and he obviously didnt remember me going on about this so many times before in his clinic.

Other doctors have abandoned me, telling me they do not want to see me again as my case is too complex (one did that after ringing an ambulance one time on seeing me, not believing my very obvious symptoms were ME/CFS).

Ive had too many bad doctors experiences to tell. I went throu over 30 GPs (usually with just seeing one once) before I found one truely interested in me thou even she said I had to be under a CFS specialist too (which left other in my town who had been looking for a GP longer then I had for this illness unable to go to her either as this other didnt have a CFS specialist which fortunately I did).

In my own case Naturopathy hasnt at all helped (no luck for me with any herbal meds thou I've tried a heck of a lot). I got sick while studying to be a Naturopath myself, The first year of my illness with me getting sicker and sicker, was spent with me seeing naturopaths to no avail. Prescription meds have helped some of my symptoms (thank God for those) and also treating my MTHFR polymorphism and my insulin issues which GPs who specialise in this areas have done.

Beyond September 18, 2013 at 3:44 am

How curious Victoria I was lately thinking if spending 4 or more hours on average in the Internet daily had something to do with my unrefreshing sleep. Because I was in the past being much more time on the Internet, I know how it leaves you -really wired. This is especially easy to notice if you have been all the freaking day in, at night it feels like you have drank a bit of coffee at least for me. You say nothing of computer? What about going in a couple of times per week, only 2 hours or so each, and in the morning? I need my informatiooonnn :rofl: I am cutting my hours of computer everyday and will soon add the blue-blocker glasses.

Although I think my unrefreshing, fragmented sleep has more to do with methylation (serotonin, melatonin), adrenals, thyroid (have tests proving it actually) etc but less computer will be good no doubt.

kisekishiawase September 18, 2013 at 4:09 am

Beyond "i need my information" lol exactly my thought too. well unless if i already find the oasis that ive been yearning for. :( its not only computer though but cellphone..
to me if someone (including myself) really sleepy (means the hormone, nerve doing their jobs right) eventhough youre doing something youre gonna end up drop it and fall asleep anyway cause it will drag you down. (also from fact and experience from people) but if youre not eventhough youre just staring at the ceiling still cant and even when youre asleep its easy to get awaken also the unrefreshing sleep, etc. :(
but i agree that we need to help induce it by relaxation stay away from things that makes you fall asleep harder, etc.
taniaaust1 most of the doctors ive met was jerks lol. only some that i could say decent but still not good :(
lucky though for people who find the cooperative ones, i still wish i could too :(

MeSci September 18, 2013 at 4:28 am

He also offered the interesting reassurance that the fact that since this thing was already of a long duration, it was probably not going to kill me, because if it were going to it probably would have by now.

'Interesting', indeed! o_O

So if it had been heart disease…?

I did a quick search for how quickly various chronic illnesses kill, as I know that it can take well over a decade for many, and didn't find any clear statements on this in the time I had, but this Australian page gives useful stats.

Great article, by the way. I do hope that some doctors read these pages. The more they realise that we prefer honesty and humility to pomposity and 'reassurance' the better.

Beyond September 18, 2013 at 4:59 am

As I have written in other threads my experience with conventional doctors has been consistently traumatic and disappointing. Alternative healers have been only dissapointing. However, one week ago I met a young neurologist that listened to me, was quite empathic and didnt hesitate to send me a sleep study. Someone reassonable at last! He seemed very ignorant though, but at least he could see I needed help which most of other more wordy and technical doctors werent able to. With these it was like I had to convince them to make me tests or even that I had something. And yeah! Dont mention that you are informed and proactive and you seek for a solution "online" instead of sitting and awaiting for degeneration! Because that triggers a program inside most of them which dumps you into the hypochondriac basket.

Kiseki I agree, no way that using the computer/other screen is the real cause behind our basic sleep dysfunction. Hormones and things like that are at the root of that. When you are sleepy at the day and wired at night or if you wake up three times per night or you dont get restful sleep it cannot be blamed to the computer entirely. But using "the screens" too much is very bad IMO. I once had an online chatting friend and he always told me at midnight that he was getting his eyes droppy and had to go to bed. He said that he couldnt understand how I was still awake and chatting like during the day or more. This guy used the computer maybe 10 hours a day?! That is a very basic and important difference between someone with normal melatonin metabolism/normal cyrcadian rhythm and what not and someone that doesnt feel sleepy at night.

MeSci September 18, 2013 at 6:55 am
xchocoholic

I was shocked to learn that alternative medical professionals are better equipped
to deal with chronic illnesses. My family is still pro traditional medicine
and anti holistic so I came by my naivete naturally. The animosity between some of
these professionals is unprofessional and unfair to patients.

Don't confuse 'traditional medicine' with 'conventional medicine'.

The former means the kinds of medicine which were dominant before modern, drug-and-surgery-based 'conventional medicine' took over. It includes things like herbal medicine and acupuncture, i.e. fields that have come to be known (often rather dismissively and arrogantly) as 'alternative' or 'complementary'. Alternative to what? Complementary to what? These terms contain an assumption that the first choice should be drugs or surgery, and that the more natural treatments might just help a little.

I reject all these terms except 'traditional', and I suspect that they may have been introduced and/or popularised by those with a vested interest, e.g. pharmaceutical companies. The use of language can be very powerful in promoting a particular agenda.

So for 'conventional medicine' I prefer 'modern medicine' or sometimes 'pharmaceutical' or 'artificial' medicine, and for 'alternative' or 'complementary' I use 'natural'. 'Holistic' is good too!

MeSci September 18, 2013 at 7:03 am
Sasha

Great article, Jody. I often think there should be a book for new patients with all the issues – medical, political, advocacy, etc. – that they need to know about.

Have you seen this one for the medical aspects? Not perfect, but the best I have seen.

To save people clicking if they already have it, it's Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition by Erica Verrillo.

MeSci September 18, 2013 at 7:12 am
Beyond

Dont mention that you are informed and proactive and you seek for a solution "online" instead of sitting and awaiting for degeneration! Because that triggers a program inside most of them which dumps you into the hypochondriac basket.

I like the way that you put this! Most doctors I have seen have been like this, but my current one does seem to respect the fact that I am scientifically qualified (more than most doctors, in fact).

I found that one of my doctors had written in my notes that I had 'some internet knowledge' about my condition. Does the fact that I read a scientific paper on the internet rather than on paper make it less reliable?!

Even highly-qualified scientists can find themselves reduced to a childlike state by a visit to a doctor, as this excellent article illustrates.

Legendrew September 18, 2013 at 7:19 am
MeSci

So for 'conventional medicine' I prefer 'modern medicine' or sometimes 'pharmaceutical' or 'artificial' medicine, and for 'alternative' or 'complementary' I use 'natural'. 'Holistic' is good too!

I wouldn't use the tern artificial or natural as they have emotional connotations which muddy the water. Certainly pharmaceutical and holistic are better wording but I'm not sure i agree with the opinions of many people here, shunning the modern medical profession.

The trouble here is that there is no understood cause of disease pathology in ME/CFS therefore the modern medical profession should not have any treatment recommendation as they have no idea of what is at the root of the disease. I suspect doctors as a group however don't like to admit they do not know and instead we get lumped with ''treatments'' such as GET and CBT which quite frankly don't have the evidence to support them that drugs would have to receive before administration – I suspect this is likely people thinking they can't do any harm when it appears they in fact do in the ME group. More than anything I feel doctors don't want to have nothing to offer and these treatments appear harmless enough until a better alternative is discovered. From a personal view I make my doctor appointments more of a two way conversation, if they start talking rubbish i'll no doubt try to tell them it's ok that they don't know.

I'm not sure i'd say the holistic approach has anything better to offer other than a person who appears more understanding of a patients situation. In the future, once the disease pathology is better understood, I suspect the majority will return to modern medicine and the new treatments it will provide.

xchocoholic September 18, 2013 at 8:07 am

I didn't mean to say all holistic practitioners were better than conventional or
traditional or whatever you chose to call it.

Like most people I see good and bad in both areas. My statement was a reflection of
my attitude at the moment. I got swept up in the emotional aspect of this article.

As long as we're taking about being naive, what's with the condescending attitudes
from most medical professionals ? It's as if they're members of the mean girl
clique. I know thus isn't based on intelligence because I've worked with more
intelligent people who aren't like that. Is this holier than tho attitude the
reason they decided to get into medicine ? Or do these people have the need to be in control

Beyond September 18, 2013 at 8:29 am

Talking about why a good chunk of allopathic doctors are so assholish IMO is a blend of the type of people that get inside that studies/work field AND the brainwash they receive during it PLUS how people treat them as god-like oracles during their years working. Pick me as an example. I have a scientific mindset and would love to study to heal myself and others but knowing what I know about allopathy is not likely that would work out me studying in one of their universities controlled by the big pharmaceutical companies. They do not go to the root of the diseases and ignore the already published information about the real causes of a lot of things they claim are "not curable" and with "unknown cause" Plus a lot of their meds may supress one symptom but they create others. And dont get me started on vaccines

MeSci September 18, 2013 at 9:28 am
Beyond

Talking about why a good chunk of allopathic doctors are so assholish IMO is a blend of the type of people that get inside that studies/work field AND the brainwash they receive during it PLUS how people treat them as god-like oracles during their years working. Pick me as an example. I have a scientific mindset and would love to study to heal myself and others but knowing what I know about allopathy is not likely that would work out me studying in one of their universities controlled by the big pharmaceutical companies. They do not go to the root of the diseases and ignore the already published information about the real causes of a lot of things they claim are "not curable" and with "unknown cause" Plus a lot of their meds may supress one symptom but they create others. And dont get me started on vaccines

Medical science teaching can tend to be reductionist, preferring to single out individual molecules rather than looking at the effect of, say, a food. In one of my Masters-level papers I wanted to look at the effect of a particular food in relation to a type of cancer, but the tutors would not allow me to. So I had to decide on one of the chemicals in the food instead. I was not happy about that, as evidence in living humans for beneficial effects of the whole food was stronger than the evidence for individual components of it. As well as a reductionist insistence on looking at individual chemicals as candidate drugs, the testing and development of the chemicals/drugs is also reductionist, first screening in silico (using computer technology), then in vitro, then in small animals, then in larger animals, and only after all that do they look at the effects in humans – and often have to abandon the candidate drug then because it is ineffective or unsafe.

It is largely due to the fact that research is profit-driven. If we find from epidemiology that cabbage reduces the risk of something by 50%, who will profit from the discovery…?

This kind of emphasis will be sure to influence those who go on to practise medicine.

MeSci September 18, 2013 at 9:42 am
Legendrew

I wouldn't use the tern artificial or natural as they have emotional connotations which muddy the water. Certainly pharmaceutical and holistic are better wording but I'm not sure i agree with the opinions of many people here, shunning the modern medical profession.

I don't agree with your take on those words. I am a stickler for accuracy, and 'natural' and 'artificial' (or 'synthetic') are simple, literal words. If people have an inappropriate interpretation of the words, then I think the solution is to use the words correctly as much as possible.

As I said, 'complementary', 'alternative' and 'conventional' in relation to medicine are inherently value-laden, intended to convey a message. It's a similar situation with 'alternative energy', which has been replaced to a considerable extent with the more-accurate 'renewable energy'. Those dismissive of natural medicine might find it harder to argue against it coherently and effectively if they had to use that term. 'Holistic' might not include some single natural therapies which have very specific effects and known mechanisms of action.

And of course some types of natural medicine are used in 'conventional' settings, e.g. dieticians and physiotherapists.

Legendrew

From a personal view I make my doctor appointments more of a two way conversation, if they start talking rubbish i'll no doubt try to tell them it's ok that they don't know.

Maybe the problem that many of us face is that many doctors – including female ones – are more respectful of males than of females. Try as we might to make a consultation two-way, it takes two to tango, and if the doctor has a patronising view of women that will prevent him from listening to us. That is the impression I have frequently gained.

Beyond September 18, 2013 at 10:06 am

Yep, there is also the fact that both the individual docs and the companies that give them free holidays and such for selling their drugs are more profit-driven than helping-the-sick-driven.

Shell September 18, 2013 at 10:41 am

I'm reading Dr Maria Montessori's The Montessori Method at the mo.
Here's a quote (she wrote this in 1912) that I think fits with our problems with medics

Thus a young student may become a great doctor if he is spurred to his study by an interest which makes medicine his real vocation. But if he works in the hope of an inheritance, or of making a desirable marriage, or if indeed he is inspired by any material advantage, he will never become a true master or a great doctor, and the world will never make one step forward because of his work

my underlining.
I think (from my experience teaching BSL to medical students) that too many doctors are in it for "world" and not for medicine. And they fail at it because of that.
If only some doctors who get rewarded for their gross mediocrity would notice this.

liverock September 18, 2013 at 11:56 am
Victoria

).
People tell me they can't sleep, but when I see them on the internet spending lengthy hours researching, scrolling through lengthy articles and having lengthy conversations on forums, I can't quite believe they haven't tried staying off the computer (tv etc) – I mean literally, not turning the computer on at all.

One the biggest dangers for PWC's poor sleep is RF(radio frequency) radiation as you point out Victoria.
Computers and TV's have some RF radiation but mobile phones have much stronger radiation,and in particular cordless phones. The Docking station on a DECT(Direct Elecronic Cordless Telephone) is emitting RF radiation 24/7 even when the phone is not in use . Its acting like mobile phone mast inside your house and it will be affecting you all the time !

A lot of people have these in their bedrooms, which is the worst possible place, and after throwing them out, have recovered from insomnia and other fatigue problems which they have suffered from for years in many cases.

http://www.independent.co.uk/life-s…phone-radiation-wrecks-your-sleep-771262.html

If you definitely,definitely, cant do without a cordless phone Siemens have now brought out an ECODECT range of cordless phones, which shuts down the docking base radiation when the phone is not in use. But dont have any cordless phones in your bedroom, they are bad news, especially for us. I still have the wired phone,Im already tired enough without the addition of this electrosmog from cordless phones.

http://lessradiation.co.uk/low-radiation-eco-dect-digital-cordless-phones/

(Sorry for going off the point of your blog Jody, just felt it was an important point to make)

xchocoholic September 18, 2013 at 12:39 pm

Ok, so I understand that some are in it for the money and some for the recognition
but why are so many health professionals rude to patients ? This includes
those drawing blood, or nurses or those just delivering the meal trays.

Why the hateful attitudes ? Do they hate their jobs and take it out on patients
because we're vulnerable ?

fwiw, I've met some nice ones too. Sadly, I'm always shocked at this.

MeSci September 18, 2013 at 12:47 pm
Shell

I think (from my experience teaching BSL to medical students) that too many doctors are in it for "world" and not for medicine. And they fail at it because of that.
If only some doctors who get rewarded for their gross mediocrity would notice this.

One of the many cases that gives the lie to the oft-repeated defence of high salaries in certain professions:

"We have to pay high salaries to get the best people."

Wrong. High salaries attract the greediest people, not the ones who really care about making a positive contribution. They would do it for much less.

leela September 18, 2013 at 4:17 pm
Dreambirdie

Oh Jody, don't get me started. If I had to list all the cluelessly idiotic, worthless, and/or dangerous advice I've received from the MDs I consulted in the past, I'd be writing for an hour. So glad I steer clear of THOSE PEOPLE at this point. They are not qualified to treat anyone who doesn't fit into a neat category in their doctor manual, and we surely do not.

I stick to TCM–acupuncture and Evergreen herbs, see a naturopath for hormones and consult with the ocean for everything else.

"consult with the ocean for everything else."

DB, right here is why we love you!

Valentijn September 18, 2013 at 4:42 pm
xchocoholic

but why are so many health professionals rude to patients ? This includes
those drawing blood, or nurses or those just delivering the meal trays.

From doctors it seems to arrive from having their pet theories about ME/CFS, and despising us as psychosomatic hypochondriacs who are wasting their extremely valuable time by having neurological or other symptoms. I get the impression they think they could be off curing cancer if they didn't have to deal with us :rolleyes:

Regarding nurses and phlebotomists, etc, I've found that they have vastly better attitudes in the Netherlands than they do in the US. Like, every single one of them :p My best guess is that they get paid better, they aren't over-worked, and they can easily go on benefits if they do get burnt out from being over-worked. Basically they seem very happy and unstressed, and seem to enjoy interacting with patients.

It's a little creepy at first :D

Little Bluestem September 19, 2013 at 7:42 pm
Tally

I think my panic comes from the fact that I'm constantly getting worse. That seems to be a rare thing for ME so in a way I feel like I must be doing something wrong.

I am also slowly, but steadily, getting worse. I don't think we have done anything wrong other than not be able to figure out what to do to stop it. Since the medical community cannot figure that out either, I don't think we can be blamed for that.

Tally September 19, 2013 at 8:07 pm
Little Bluestem

I am also slowly, but steadily, getting worse. I don't think we have done anything wrong other than not be able to figure out what to do to stop it. Since the medical community cannot figure that out either, I don't think we can be blamed for that.

Your words are encouraging. But I gave up my faith in doctors long ago so now everything is resting on my shoulders. At least that's how it feels.

Little Bluestem September 20, 2013 at 2:26 am

I have had some really bad experiences with allopaths.

I was in college when I got the infection that started my ME. I returned to the health center twice to tell them that I was not recovering well. Both times I was told that since my temperature and white blood cell count were low (low, mind you, not normal), I could not be sick. Apparently, the only symptoms produced by any disease known to man are high temperature and high white cell count.

A few years later I was living in another city and developed the itching and burning in the arm pits and 'leg pits'. Since I now had a physical symptom beyond low energy/PEM/cognitive dysfunction, I decided to see another physician. I told him I had not felt well since a viral infection a few years before and wondered if this might be related. He told me that there was no such thing as a chronic viral infection. I wondered how he explained shingles and HIV, but thought it better for my brain not to ask.

I am now seeing an integrative physician who keeps up well on current medical information. (Would it be sexist of me to mention that she is also the first female physician I have seen?) She has or has had at least one other CFS patient, but I am still not sure how well informed she is about it. She was willing to take my word for it that I needed Xanax. She is good for general health issues, which we seem to have a lot of, such as adrenals, thyroid, vitamin D deficiency, liver problems, and sleep. I probably got better thyroid treatment from her than I would have from most endocrinologists.

xchocoholic September 20, 2013 at 12:24 pm

Maybe they just feel better dealing with medical problems they can solve.

Everytime I have to go to the ER for kidney stones I find the nicest most
professional people you could imagine. They follow a standard protocol
and I get what I need. It's a win win for everyone. Ok, I ran into 1 snaffoo once but it's partly because
we didn't know I couldn't handle flouroquinolones.

As a perfectionist I'd be ornery if I had to face failures regularly. I definitely
couldn't work in the health care field because if how much patience is
required.

I like people so I'm trying my best to come up with justifiable reasons for
their behaviour. Honestly I can't say that I wouldn't be a jerk if I had to
do their jobs. More pay and better hours couldn't help me. lol.

Jody September 20, 2013 at 6:05 pm
taniaaust1

"This man who I thought knew me, knew the kind of person I was, knew the ordeal I was grappling with, looked at me with an unfriendly stare, and said, “And what possible reason is there that you can’t do jury duty?” "

I think I must of been seeing your doctors brother, I had a dr who had exactly the same attitude, sadly I had him for 2-3 years and was fooled by him all that time as I kept telling myself that it was me probably being paranoid ,each time I started to think this dr had something against ME/CFS. (He'd so often cancel my appointments on me which I'd book 6 weeks in advance but came up with reasons but he did that so much that I started to wonder).

Then one day I went in very upset as I'd had a severe collapse while trying to get home from his visit quite recently before. No taxis were available in my local town for several hours this day, so I'd had to attempt to walk the very short distance home but couldnt make it. Was staggering up the road then looking drunk, trying to stay on my feet and about to faint and desperately needing to get home fast due to about to pass out (and it was cold and about to rain). I ended up collapsed in the gutter, ringing random businesses in the town close by, begging ANYONE (all these strangers) to come and get me to take me home, horrific nightmarish experience.

Anyway.. I was telling this dr about what had happened and his reply (which came out more like an order) "You arent disabled!!" This was even thou I'd been on a disability pension for several years and was seeing several CFS specialists. Turned out this shockening doctor wasnt even even telling me about my CFS specialists recommendations whenever they contacted him on what they wanted him doing with me (so he left me thinking I'd been abandoned by them too).

"I told him about the only thing that at that time made any difference: I said, “Going to bed.” He said, “Well, do that then.”

I did not say, but felt this reaction strongly – “I am not going to spend the rest of my life in bed!” My passion, of course, stood upon no basis in reality at that time. Every indication was that I would indeed spend the rest of my life in bed.

The fact that my doctor was perfectly fine with that really stuck in my craw."

Nods.. that truely sucks. I was doing that too and then cause I then wasnt complaining about so many symptoms due to doing nothing at all, one of my CFS specialists somehow came to the conclusion that I'd recovered!!! My activity level thou was something like only 5% of normal.

Another thing which happened is my CFS specialist wasnt listening to me. I told him for years I had orthostatic hypertension but he never took my BP while standing. Then one day he suddenly did it (i'd given up mentioning it by that time) and to his shock he saw my BP go up to 170 with 1 min of standing. He goes something like "oh this is what is wrong with you". I could only stand there is horror as I'd been telling him this was going on all along and he obviously didnt remember me going on about this so many times before in his clinic.

Other doctors have abandoned me, telling me they do not want to see me again as my case is too complex (one did that after ringing an ambulance one time on seeing me, not believing my very obvious symptoms were ME/CFS).

Ive had too many bad doctors experiences to tell. I went throu over 30 GPs (usually with just seeing one once) before I found one truely interested in me thou even she said I had to be under a CFS specialist too (which left other in my town who had been looking for a GP longer then I had for this illness unable to go to her either as this other didnt have a CFS specialist which fortunately I did).

In my own case Naturopathy hasnt at all helped (no luck for me with any herbal meds thou I've tried a heck of a lot). I got sick while studying to be a Naturopath myself, The first year of my illness with me getting sicker and sicker, was spent with me seeing naturopaths to no avail. Prescription meds have helped some of my symptoms (thank God for those) and also treating my MTHFR polymorphism and my insulin issues which GPs who specialise in this areas have done.

taniaaust

Sorry to hear you ran into a doctor of the same disdainful ilk as my former doc. Or, rather, a number of them. I'm particularly sorry to hear that naturopathy has not been any help either.

Jody September 20, 2013 at 6:06 pm
MeSci

'Interesting', indeed! o_O

So if it had been heart disease…?

I did a quick search for how quickly various chronic illnesses kill, as I know that it can take well over a decade for many, and didn't find any clear statements on this in the time I had, but this Australian page gives useful stats.

Great article, by the way. I do hope that some doctors read these pages. The more they realise that we prefer honesty and humility to pomposity and 'reassurance' the better.

MeSci,

It would be great if doctors would read our reports of what we go through. I think many of them would find it quite eye-opening if they spent a little time.

Snowdrop September 21, 2013 at 1:25 pm
Victoria

As you know, Jody, I have been lucky enough to have 'normal' everyday health conditions which show up on tests, so I have faired far better than most people with chronic pain, fatigue & other miscellaneous debilitating symptoms.

But one thing that hasn't been resolved is my lack of deep restorative sleep (despite 8-9 'sleep' hours each night).

Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

In my particular case, lack of deep restful restorative sleep seems to coincide with high blood sugar.

I might suggest that EVERYONE with a sleep problem (who has cut out caffeine and any other stimulant) tries staying off the computer for one whole week (not even email or blogging) and seeing if the over-stimulated mind calms down.

Everyone is unique and responds to different treatments, but in my case, I still believe 'sleep' and 'stress' are my biggest problems. Diet (whatever works for you), exercise (slow walking in fresh, unpolluted air), keeping the body well-hydrated and getting enough deep sleep are paramount as starting blocks to resolving some chronic health issues. (notice I said 'some', not 'all').

People tell me they can't sleep, but when I see them on the internet spending lengthy hours researching, scrolling through lengthy articles and having lengthy conversations on forums, I can't quite believe they haven't tried staying off the computer (tv etc) – I mean literally, not turning the computer on at all.

I am also very lucky in having a supportive GP (who believes me and follows up every request or test I ask for, even though he, personally, can't offer much help).

Hello Victoria

I understand your confusion with regard to PWME and lengthly computer time. I have no real knowledge of your specific level of functioning but from my housebound and cognitively compromised position I might be able to help you with your confusion regarding lengthly computer use.
As I'm sure you know, most people want to be engaged with the world outside themselves.
There is a level of functioning among us where one is too mentally and physically sick to engage normally but not so sick that they can rest quietly for lengthly periods because their mind is wired up and wanting release. If you can't do more than be on the computer the alternative is to lay there doing nothing at all, which I have discovered is a lot harder than it sounds.
There is a problem with going too long but some of us have discovered that the alternative doesn't really bring relief either. I've tried. I don't sleep more or better, I find it more depressing because of the lack of distraction.
Hope that helps explain.

xchocoholic September 21, 2013 at 2:22 pm

Well said Snowdrop. Some of us are here too because we feel best when supine.

And some of us find staying up on the latest health info soothing. Once you get familiar with the medical
terminology it's not overwhelming or stressful.

We have a lot of incredibly intelligent, kind and well versed people here so hanging out here is
comforting. tc … x

rosie26 September 21, 2013 at 2:56 pm

I agree Snowdrop, PR provides a necessary and positive distraction from the intensities of ME. I now have arranged a set up where I can lay in bed with laptop on my lap. I can close my eyes for awhile if I want to.

I don't feel so crazy alone in my illness, others here are going through the same thing. I miss work and all the day to day interactions with others. I did deteriorate when I first bought my laptop 18 months ago, the reading and using the keyboard inflamed my ME terribly. Fortunately I discovered D Ribose and that has helped eased some inflammation.

For me it's a toss up, computer or insanity. I choose computer. x Interestingly I have been sleeping better since having the computer, along with my melatonin tablet. I feel more positive in dealing with my ME symptoms and connected to the world from my bedroom.

Firestormm September 21, 2013 at 7:48 pm

When I was worse than I am now, but had emerged from the very worst stage and could again tolerate a computer – and [shiver :eek: ] forum interactions – I found them preferable/more tolerable than face-to-face conversations or even telephone calls: which I found to be very demanding and very draining.

I still think that personal interactions of that nature – quick-fire thinking etc. – are the most draining and demanding. Of course now it is all about balance – though I guess it always was really, but in different ways.

There does come a point – reached sooner for some than for others perhaps – where the stimulation (whatever the source and with varying (I think) predictability) becomes too much and if we persevere it can indeed result in less chance of a good sleep – or even a period of relaxation and some better chance of recharging.

We are all different but all rather sensitive to stimuli in whatever form from light to heat to mental input etc.

What a very strange but beautiful bunch we all are :)

xxRinxx September 22, 2013 at 8:08 am

My doctor was quite similar except that he did feel genuinely bad he could do squat to help me. He threw everything but the kitchen sink at me, and nothing..had every test done and somethings would be off or strange and he'd be scratching his head. His PAs were royal asses though..everytime my main doctor was busy and I had to see them, they would say '..Well you're probably just depressed, heres some anti depressants' or 'I can't find anything wrong with you' and stare at me like I was making it up! They did everything in their power to hurry me through the office and shove me the heck out. They figured if antibiotics didn't help, I was just a big fat liar.
It wasn't until we saw something on freaking Oprah that we thought '..hey..this might be what I have!' and presented it to the doctor..and he went 'Oh..You know that sounds about right'. I just thought..'WHY DIDN'T YOU COME TO THAT CONCLUSION BEFORE!?' and he sent me to get a tilt-table test and FINALLY had a 'good'(meaning I failed the hell out of that test) result that sealed the deal.
I dislike conventional medicine with all that's in me. I don't even take Ibuprofen for headaches. I take the three medications I /have/ to, and the rest are holistic. I take natural cures for colds and viruses, and I refuse to have another anti-biotic get anywhere near me. I will forever dislike Doctors with everything in me!

Valentijn September 22, 2013 at 12:26 pm

Being online gives me a way to regularly interact with people in a manner which I can handle. If I get too exhausted, I can simply say "bye!" and disappear for a while.

It also gives me a way to do something constructive. For a while I was a moderator here, which I stopped when my OI was too bad and unpredictable for me to continue. It felt very good to be doing something to help others, while others were also helping me.

When I got my OI treated, my ability to engage in intellectual pursuits increased dramatically. Instead of going back to moderating, I've spent my time reading reams of research, working on letters to be published in scientific journals regarding ME/CFS, writing articles for this forum, and designing a program to analyze 23andMe results to show rare genetic results or results regarding the functioning of specific genes.

I still have trouble with novels. I can manage them once in a while but am usually a bit wiped out afterwards. Same with most TV programs that aren't very simple or something I've seen before. On good days I can sit in the garden for 10-15 minutes and pull weeds or pick strawberries.

If I weren't online, what would I do all day? Lay there and try to sleep? Watch the birds? Think about all the things I can't do? The internet is what we do because we can't do the things we'd rather be doing. It might not be ideal, but it's the best alternative that many of us have available.

MeSci September 22, 2013 at 1:00 pm
Valentijn

Being online gives me a way to regularly interact with people in a manner which I can handle. If I get too exhausted, I can simply say "bye!" and disappear for a while.

It also gives me a way to do something constructive. For a while I was a moderator here, which I stopped when my OI was too bad and unpredictable for me to continue. It felt very good to be doing something to help others, while others were also helping me.

When I got my OI treated, my ability to engage in intellectual pursuits increased dramatically. Instead of going back to moderating, I've spent my time reading reams of research, working on letters to be published in scientific journals regarding ME/CFS, writing articles for this forum, and designing a program to analyze 23andMe results to show rare genetic results or results regarding the functioning of specific genes.

I still have trouble with novels. I can manage them once in a while but am usually a bit wiped out afterwards. Same with most TV programs that aren't very simple or something I've seen before. On good days I can sit in the garden for 10-15 minutes and pull weeds or pick strawberries.

If I weren't online, what would I do all day? Lay there and try to sleep? Watch the birds? Think about all the things I can't do? The internet is what we do because we can't do the things we'd rather be doing. It might not be ideal, but it's the best alternative that many of us have available.

I so agree. I would be bored out of my mind if I couldn't use the computer. In any case, my business involves selling things online, I buy a lot of essentials online, and I moderate/co-moderate 3 forums as well as participating in others. I get lots of campaigning emails and forward them to relevant email groups.

I have a great thirst for knowledge, and learn a huge amount online – things that help me and others. If I want to identify an animal or plant, I look online, and sometimes post photos on ispot to check the identity for my nature diary.

I take photos and videos and edit them on my computer. I'm trying to develop a business making nature videos, and the internet has been vital for learning how to do things, getting video and audio software and using it.

I have copied all my favourite vinyl music onto the computer and created mp3s.

Computers are a huge part of many people's lives, and thank goodness for them!

xchocoholic October 2, 2013 at 5:36 am

I Googled why are doctors jerks and found some interesting
articles. One by a doctor caught my attention. He suggested
we thank our doctors for taking care of us. That really
opened my eyes as far as how I looked at the doctor
patient relationship. I had been looking at this completely
from a job angle, not human interaction. I thanked
my doctor yesterday. : )

fwiw, the more I learn about our bodies and
how different we are, I appreciate how complicated
working in health care must be.

MeSci October 2, 2013 at 6:40 am
xchocoholic

I Googled why are doctors jerks and found some interesting
articles. One by a doctor caught my attention. He suggested
we thank our doctors for taking care of us. That really
opened my eyes as far as how I looked at the doctor
patient relationship. I had been looking at this completely
from a job angle, not human interaction. I thanked
my doctor yesterday. : )

fwiw, the more I learn about our bodies and
how different we are, I appreciate how complicated
working in health care must be.

I'm a bit puzzled. Maybe it's a national thing, but I always thank service providers, shop assistants, etc., when they provide a service, unless they have already started serving someone else.

What do you say when you leave the doctor's office (which we call a surgery in the UK, rather irrationally, I think!)? Just 'goodbye'?

xchocoholic October 2, 2013 at 7:36 am

lol. MeSci

I see you're a very literal person and I can appreciate
where you're coming from. I used to write tech info
as part of my programmer analyst job. Every letter
had to be exact. I look at
what everyone writes on a message board as informal
communication. Imho, that's a big part of what makes interacting
interesting.

I do normally thank my doctors, etc etc etc. I was just keeping
my post short since I'm using one finger and saw
no need to elaborate.

I thought the doctors point of view was interesting.
I've been looking for more positive comments by
healthcare professionals to try to understand their
perspectives on how they do their jobs. I learned it's
not a job.

tc … x

Astrid13 October 14, 2013 at 9:10 pm

Please watch "Under Our Skin" a documentary about Lyme Disease. It may help you find all the answers you've been seeking for so long. Best of luck!
Love, Astrid

Banksy October 24, 2013 at 7:04 am

im moderate affected. i can put my self in shape to work with people hour, two and sometimes more. my friends dont understand, some are even doctors(13 bloody years i have cfs) but when get back home i have wife that understand. only thing i regret is i cant take her out to see the world. made the money meanwhile but still dont have strength. i still consider my self lucky. my message is: dont forget to live because u aint gonna get rid of this shit. u will have better or worst days but that's it.

Wayne November 8, 2013 at 12:07 am
Victoria

Unable to type or do much last week with my broken arm in plaster, I stayed off the computer 99% and you would not believe how well I slept for 3-4 nights. Even my high blood sugar with my recently diagnosed Diabetes II was almost normal (despite poor diet & little exercise over the winter months with flu & then an ongoing ankle prob).

Hi Victoria, so nice to see your post here; it's been a while! — I purchased an "Earthing Pad" for about $50-$60 or so, and have found it invaluable in keeping me from burning out so badly on the computer. Helped the burnout by as much as 90%.

Take care! :thumbsup:

Wayne

dannybex November 25, 2013 at 4:46 pm
Wayne

Hi Victoria, so nice to see your post here; it's been a while! — I purchased an "Earthing Pad" for about $50-$60 or so, and have found it invaluable in keeping me from burning out so badly on the computer. Helped the burnout by as much as 90%.

Take care! :thumbsup:

Wayne

Hi Wayne,

I remember you getting one of these awhile back. I was interested too, but the place I lived in had NO grounded outlets…not one! :) But I moved since then, so now I can reconsider one, if I can round up the pennies.

Anyway, I was wondering if you could describe the 'burning out' in a little more detail? Would being on the computer tense you up, increase stress levels, etc.? Or something different?

Also, do you know if it makes a difference if one is using a flat screen (I have a used Mac), or one of the older PC-monitor type computers?

Thanks Wayne!

Dan

alex3619 November 25, 2013 at 8:02 pm

All power outlets are three plug outlets in Australia, with grounding. I have seen this in at least two other countries as well. Two plug outlets went out with the arc in most of the world.

Wayne November 25, 2013 at 9:48 pm
dannybex

I was wondering if you could describe the 'burning out' in a little more detail? Would being on the computer tense you up, increase stress levels, etc.? Or something different? ……… do you know if it makes a difference if one is using a flat screen (I have a used Mac), or one of the older PC-monitor type computers?

Hey Dan,

Prior to getting an earthing pad, I would often start feeling my energy draining within seconds of getting on the computer. If I was having a better day, I wouldn't notice it quite so quickly. On bad days, I would feel quite nauseous and it would literally feel like a vacuum cleaner sucking the energy out of my solar plexus area. Headaches were another common problem, flaring up within minutes of getting on the computer. Again, this depended on what kind of day I was having.

On days where I was doing better and did more, I could easily end up with a computer related PEM, or hangover as I would refer to it (spacey and disconnected). Part of it was likely a part of mental PEM, but the computer hangover was definitely identifiable. I experience similar things when driving from some intense EMFs coming off of the dashboard. I want to learn how to ground myself while driving, as my driveable distances have dwindled down to about 20-30 minutes or so.

I ran across a video once on how to ground a vehicle, but haven't been able to find it. If you run across anything like this as you do your own research, please let me know. — Thanks. :)

Wayne

dannybex November 25, 2013 at 10:53 pm

@Wayne — thanks for your speedy reply — I appreciate it, and of course always good to hear from you.

I was doing a little reading (or probably too much reading) on the subject this afternoon, and am not sure what to think, as it seems like we're being bombarded my increasing levels of EMF's from everywhere — especially 'smart meters' (?), and the increasing numbers of cell phone towers. There was a site I saw earlier where you could find the number of towers in your area (within a 4 mile radius) and there were over 340 in my 'hood'.Kind of overwhelming, but I suppose there could be a dozen other reasons I've been doing worse since moving here. Nevertheless, I appreciate your input, and will consider a small mat, and maybe some bands…but am trying to find a cheap voltmeter (a guy mentions a radio shack model for $20 on amazon) but I haven't found it yet.Gotta get off the 'puter for now! :)

Creamcheese February 15, 2014 at 11:56 am
Firestormm

When I was worse than I am now, but had emerged from the very worst stage and could again tolerate a computer – and [shiver :eek: ] forum interactions – I found them preferable/more tolerable than face-to-face conversations or even telephone calls: which I found to be very demanding and very draining.

I still think that personal interactions of that nature – quick-fire thinking etc. – are the most draining and demanding. Of course now it is all about balance – though I guess it always was really, but in different ways.

There does come a point – reached sooner for some than for others perhaps – where the stimulation (whatever the source and with varying (I think) predictability) becomes too much and if we persevere it can indeed result in less chance of a good sleep – or even a period of relaxation and some better chance of recharging.

We are all different but all rather sensitive to stimuli in whatever form from light to heat to mental input etc.

What a very strange but beautiful bunch we all are :)

Yes! A beautiful bunch which I have sorely missed the past few years during my absence. It has been a slow motion return to internet activity for me. It is a comfort to know that others do know and try to understand what I express, whether clear or through a foggy mist. Can avoid what may upset me and pay attention to what is supportive and/or interesting. Is good to see that this PRF site is still in motion. _Susan (Creamcheese)

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