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Uncontrollable anxiety as primary PEM symptom?

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I was on a gluten free diet for 6 months, prior to the increasing "mental" symptoms. I am on opiates and want to try to get off of them so I can do low dose naltrexone but the gluten free diet made me feel worse . I did lose 20 pounds but and have had a decrease in appetite and chronic diarrhea despite using probiotics ect. I also have unremitting fibro pain.

SueJohnPat, some of your symptoms (weight loss, decreased appetite, diarrhea) sound like an adrenal problem:

http://www.mayoclinic.org/diseases-conditions/addisons-disease/basics/symptoms/con-20021340

Symptoms
By Mayo Clinic Staff

Addison's disease symptoms usually develop slowly, often over several months, and may include:
  • Muscle weakness and fatigue
  • Weight loss and decreased appetite
  • Darkening of your skin (hyperpigmentation)
  • Low blood pressure, even fainting
  • Salt craving
  • Low blood sugar (hypoglycemia)
  • Nausea, diarrhea or vomiting
  • Muscle or joint pains
  • Irritability
  • Depression
  • Body hair loss or sexual dysfunction in women

Does your endocrinologist know that you've lost 20 pounds, have decreased appetite and diarrhea? They will have the highest index of suspicion and best insight. Auto-immune diseases like Addison's and Hashimoto's may occur together. I don't want to talk to you like you just fell off the hay truck, seeing as how you are a pharmacist, but maybe you'll read something that is new to you.
 
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Messages
3
Location
USA
That's terrible! You have to talk with a specialist about your case -- diagnosis is a case to case basis. It differs from one person to another. Good luck!
 
Messages
236
Location
Medford NJ
That's terrible! You have to talk with a specialist about your case -- diagnosis is a case to case basis. It differs from one person to another. Good luck!

Although I am a pharmacists when you are so ill, brain fogged ect and caring for your kids and driving my son with to a rehearsal 10 minutes away is an ordeal, My "executive function" goes out the window, I am like everyone else, and it took me a long time to realize I dont have to be "smart" all the time. I am having an mri on my whole abdominal area and am being tested for adrenal fatigue by me pain doctor who also practices integrative medicine. I am following up with my new primary doctor on the diarrhea issue.

. My first primary doctor told me after asking her about adrenal fatigue and leaky gut 5 years ago , that " I am a pharmacists and should know better, )that this was allot of nonscientific bunk)" This was from a family Dr. who is a neighbor and at the time was a friend. Needless to say she is extremely conservative and not a free thinker. and treated me like a leper once I developed severe pain and fatigue after getting a cold in September of 2006. .I had known this woman for over 2 years and I ignored "red flags" about her because at the time she was a charming , fun companion. I now choose my friends much more carefully.

I had just moved into a new small town and my mother in law moved in with us. My younger son had been diagnosed with autism and my mother in law and I are not friends. My husband asked her to move out in 2008. She complained about why I was so miserable and basically seemed to have no understanding or sympathy for me when I was in allot of pain and would simply collapse after work even though my thyroid t3, t4 levels were "normal"I had already diagnosed with Hashimoto's and was being treated but my health took a nosedive in Sept 2006>.. She is "old school and does not like discussing anything more deep than what we were having for dinner - I felt like a stranger in my own home. I went to a therapist who helped me realize that in order for my marriage needed to I think people who have allot of fear and hangups judge us the most. I have grown allot and now have compassion for these people , ok maybe not all the time but I try because their fears lock them down and make their worlds very small.

I have been feeling very depressed at times.lately (not at all today) I am going through menopause . The brain fog and mood swings have been greatly amplified over the last 2 months. I am also going to per-sue getting bio identical hormones. It is ironic I was never "depressed" when I was told I was but now I think I am but as a secondary result of the hormone changes and having a major setback in my health.

I just saw my pain management /integrative physician doctor yesterday. He agreed that I may not have full blown Addisons but low adrenal function. I am doing a 24 hour cortisol test. I have had this in the past all with normal results. I also had something similar to this about 8 years ago- lost wieght diarrhea referred to a gi got colonoscopy normal, Dr at that time did not suggest adrenal issues and at the time I was healthy suggested I had some kind of "gastris",It did eventually go away.

I would highly recommend Stacy Robbins book " Your not crazy and your not alone" Although the author is a Hashimoto's patient, there is a great deal of overlap of symptoms and dealing with the disbelief and lack of support I am sure all of us can well relate to. I myself went on ssi in 2010 . I have read Phoenix rising for over 2 years and have found it to be extremely informative.

This journey has led me through allot of desolate deserts, glimpses of sunlight, monsoons, dead ends road blocks, and detours, It is like driving a car with vague maps written in foreign languages which we try to decipher in order to feel just a little better. , the road signs being unclear or nonexistent. Our modern medical system is not so modern. When "bacteria" was discovered many doctors did not believe it because it could not be seen.

I was going to propose that we walk naked for 1 block of a large city. It is hard to believe that an illness this debilitating is being treated so cavalierly .

Sorry for the tangents, thank you to those who responded with very sound suggestions . This may be tmi- but once I got my period I feel like myself again. It feels like I can think, Maybe because of the Hashimoto;s and everything else I am just more sensitive to hormonal shifts. Just putting this out there in case it helps anyone else.
Thank You so much for all of your support.

Sincerely, Sue
 
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CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I just saw my pain management /integrative physician doctor yesterday. He agreed that I may not have full blown Addisons but low adrenal function. I am doing a 24 hour cortisol test.

The 24hr urinary cortisol test is best used as a screen for Cushing's disease - hypercortisolemia. For low cortisol, an ACTH stimulation test is the best screen. If you can't manage or get an ACTH stim test, salivary cortisol with samples taken at four times in a 24hr period might be helpful. The salivary tests can be done at home.

(Retired medical technologist here; I just went through screening for Cushing's and now I know more than I ever wanted to know!)
 
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Messages
236
Location
Medford NJ
The 24hr urinary cortisol test is best used as a screen for Cushing's disease - hypercortisolemia. For low cortisol, an ACTH stimulation test is the best screen. If you can't manage or get an ACTH stim test, salivary cortisol with samples taken at four times in a 24hr period might be helpful. The salivary tests can be done at home.

(Retired medical technologist here; I just went through screening for Cushing's and now I know more than I ever wanted to know!)
Thanks for the information. I was not specific enough it is a saliva test. My doctor told me it was to test my adrenals.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Thanks for the information. I was not specific enough it is a saliva test. My doctor told me it was to test my adrenals.

I apologize - for some reason I thought I read 24hr urine, but I just imagined it. Brain farts! :confused:

Sounds like you're doing the right thing! I hope you get some answers.
 
Messages
236
Location
Medford NJ
Update on " emotional " outbursts.
We found mold in our home. It was remediated.
I spent 3 weeks in the Death Valley area.
I had a mini recovery with absolutely no emotional outbursts , tears ect and I got my mind back. I had begun cholestyramine Prior to leaving . Our house was not that bad just had mold in the basement . I simply shut the basement door. Moved the cat box upstairs this was enough to begin improving.

Went back to Nj good for a month. Started up with " CFS" again.

I now attribute these emotional breakdowns to "mold" " neurotoxin " exposure. It took me a few years feeling better physically but still have emotional lability which I can stop if I decontaminate myself. Or I will go outside or get in the sun.
The other day I got crazy . I bought a new shirt at a store and put my old one in a plastic bag. I was calm in 10 minutes.

This sounds pretty weird not saying it will work for anyone else . The incident with the shirt convinced me. It took me about a year to get better at detection. I keep spring water bottles in my car. So I can do a quick rinse if I start to feel jittery.
It is working no longer need alka seltzer gold.

For me it was a very very subtle effect and I did not think it was affecting me at all.
 
Messages
93
Location
PA/NJ
Yeah I get this too during PEM. Sometimes I feel sooooo awful I almost want to bang my head against the wall. It's truly a disgusting feeling. I know benzos help make the sensation less awful but you can't just go popping them every time you get that feeling. For me this is the WORST symptom of my M.E. by far. It genuinely hurts my brain in an indescribable way.
 
Messages
236
Location
Medford NJ
Mesurfer. I used to bang my head on my kitchen countertops and scratch myself. Thank God it does not happen anymore. If you get this way try Alka Seltzer gold or just a teaspoonful of baking soda in an 8 oz glass of water. This worked miracles for me.

I was afraid to tell my doctor about this because CFS is considered a borderline psyche illness by a lot of doctors . By all means if you have a problem with self harm get help but for me these were isolated episodes which I also attributed to a type of PEM. This is an absolutely horrible feeling but I no longer have this symptom. This would come from out of the blue no stressful event would trigger it.

I had this symptom for 2-3 years. It eventually passed. I am slowly slowly recovering a bit.

I keep water in my car and " decontaminate, this is what I do now ( mold avoidance). The " emotional " issues without any provocation led me to consider mold avoidance and put me on a path towards remission. ( not there yet but avoiding " mold" is really having a huge impact.

It can get better.
 

Jemima37

Senior Member
Messages
407
Location
UK
I suffer from an anxiety disorder. General anxiety and agoraphobia as I've ptsd but it's not severe like it used to be. I've noticed since having major fatigue issues the last 18 months I've had serious anxiety on the days I have bad crashes. It seems to come along with the crashes for sure.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I suffer from an anxiety disorder. General anxiety and agoraphobia as I've ptsd but it's not severe like it used to be. I've noticed since having major fatigue issues the last 18 months I've had serious anxiety on the days I have bad crashes. It seems to come along with the crashes for sure.

This is quite common with us. Its tough to manage at times... but if you can reduce your crashes... it will help with the anxiety.
 

flitza

Senior Member
Messages
145
I guess this is "get to know the disease" day for me, I am asking a few questions like this lately...

I generally get lactic acid buildup and sometimes pain for days if I overdo it physically, but I don't think I've had a severe bedbound type crash. It's more like "I need a recovery day or 2." My exercise tolerance is crap, but still, I can move around enough to get basic stuff done...

On the other hand, if I overdo it mentally or emotionally, I have a week or more where my brain just goes out of control with terrible anxiety bordering on psychosis for no reason. It lasts hours at a time 2 - 3 times a day. Like I will try to tear my own head off, weep, scream crazy things at everybody around me, try to figure out how to kill myself, that sort of pleasant thing. Then I experience something that feels a lot like hypoxia (I used to be a swimmer so I know what that feels like) and get kind of giddy and relaxed, though I am pretty sure brain cells are dying off. During these periods I often can almost forget how to talk. I also tend to run hot (99-100 vs 97 usual) during this. Sometimes cold water dumped on the head can snap me out of it temporarily.

I have learned that panic attacks are related to lactic acid buildup in the brain, maybe it's related? I haven't had such a problem since I started treating with sodium and potassium bicarbonate twice a day. But who knows if that will last, it's only been a couple weeks.

Does this click with anybody? Or are most people's crashes straight up crashes?
Maybe you'd like to check Hipp's post on things that help with anxiety.
I often get quite anxious in the early AM, a time when my dysautonomia and IBS are at their worst and I've been using Turmeric, Magnesium glycinate, sodium cromolyn, COQ10 for this. It helps me. I usually feel better after an hour to an hour and a half.