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A Little Poisoning Along the Road to ME/CFS

Anyone else been poisoned along the way? Jody Smith tells part of her horror story …

pixabay-biohazard

Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I’d just been dealing with some heavy-duty menopausal issues.

The sleep abnormalities, the brain fog, digestive issues, astonishing weight gain, I was the right age … I fit the menopause profile.

But then I remember some of toxins I’ve been exposed to over the decades, and I realize that whether menopause had anything to do with my becoming so sick for so long, there was more to it than that.

Until fairly recently, I thought of the pain, inflammation, swelling, and subsequent incapacitation that I would experience a few times every year as being separate from ME/CFS.

The first time I had a serious, agonizing bout of roaring inflammation I called it tendinitis. After a few days of searing pain and functional uselessness in my right arm, I wished for amputation.

Instead I got a prescription from my GP for Voltaren (diclofenac). I took this medication for a few days and the pain began to fade. Didn’t disappear, but it became bearable. Couldn’t actually use my arm.

There was weakness and stiffness such that I had to lift my right hand with my left to take a cup out of my kitchen cupboard. I couldn’t pick up any of my small children with my right arm.

I stayed on Voltaren for five months, and then later that year was on it for three more months after a second bout of inflammation.

I did not make a connection at the time with the excruciating pain that had taken up residence in the pit of my stomach. My husband Alan had been injured at work and there were some scary things going on in our lives at the time. I just chalked up how I felt to being anxious.

But this pain never went away over the following 15 years or so. And I suspect that the leaky gut I’ve been healing may have originated from this scenario. I’ve made dietary changes, identified and eliminated foods I can’t tolerate.

Now I know that if I have inflammation, I can generally get relief from castor oil wraps, acupuncture or chiropractic. I take omega-3 oil to lessen my tendency to inflammation, and try to eat a diet that is low in omega-6 fatty acids. I try to respect my body’s limitations and act with ergonomic responsibility. The less I strain it the less it hits me with inflammation.

We had an oil furnace that we realized was emitting fumes into the house. Alan discovered that the combustion chamber was cracked. We quit using the furnace and started using the wood stove in the living room. Later added one to the family room because replacing the furnace was beyond our means at the time.

Realized later that both wood stoves were installed incorrectly and were unsafe. It’s a wonder neither of them burned our house down. They both also burned broken chairs, cardboard, painted wood from old furniture when we couldn’t afford proper firewood.

The crawl space of the house we lived in 25 years ago got flooded. We found out by accident one evening. As the water drained from the tub after one of my kids had their bath, we heard the water …. drop. It wasn’t going through pipes away from the house to wherever the water goes.

The pipes had been disconnected, maybe by an animal that had gotten into the crawl space. And when the water went down the drain, it fell onto the ground under the house.

There was a pool about six inches by the time we discovered this. It explained the tendency to mold in this house which was so much more than anything I’d ever experienced before.

The floor directly above this mess was soft and punky, and one day my mother’s foot went through the floor. She was okay, just shocked. The floor which was a third of the length of our house, now obviously had to be replaced. But that is another story for another day. Or rather, one you really never want to hear.

We also found out that our neighbours had been re-directing water from their yard into ours via a big plastic pipe, so their runoff would have been ending up … under our house. We politely asked him to stop. He did.

Our next house was in much better shape. But the cement basement would flood after very heavy rains. And then it would flood any time it rained. Alan discovered that the storm sewer line was full of debris from a tree right above it. The rain water couldn’t be carried away, it just … overflowed and soaked down the side of our basement walls and floor.

Almost everything stored in our basement has had to be thrown out, but it all sat there for a number of years before any of us were healthy enough to get it done.

Alan found the source of the problem and we no longer have that kind of flooding. But the house had a strong inclination to mold, on the walls and in the basement for a long time.

We had a waterbed which split open and poured water throughout our bedroom 20 years ago. We mopped things up as best we could. Let the carpet dry, we couldn’t afford to replace it. Whatever bacteria was in that water permeated the particle board platform frame and the rug.

We kept the platform and stuck two single mattresses on it, and slept that way for about five years. When we could afford to get a new mattress, we also got an unexpected bonus.

I had been waking each morning with searing sore throat, aching sinuses, headache and earaches. After I’d get up and been awake for an hour or so, these discomforts would gradually decrease till they were — not gone, but bearable.

But the first morning after I slept on the new bed, I noticed that I wasn’t in pain. My breathing wasn’t hampered by stuffed sinuses. The change was that dramatic and that immediate.

I can’t say how much any of these things contributed to my becoming, and staying, sick with ME/CFS. I just know what my experience has been. And the timing of these environmental insults when compared with when my symptoms have waxed and waned is all pretty convincing to me.

Have you gotten poisoned along the way?

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{ 30 comments… add one }

  • daisybell November 28, 2014, 1:52 pm

    Thanks Jody.
    I was being poisoned for a while by waste products from methamphetamine production being poured down the outside drains next to my house. Of course I didn't know that was happening until the police turned up and the drains were decontaminated. Three or four days later I woke up feeling completely different….
    I'll never know how much of a part that incident played in my illness.

  • Kina November 28, 2014, 2:05 pm

    The house in which I lived when I first got sick had an extremely damp basement. I was talking to the family that rented it before we bought it and he said that they moved out because they felt the house was 'making them sick'. I have no idea if it was a contributing factor or not.

  • Jody November 28, 2014, 6:02 pm

    Daisybell,

    That sounds awful.

    Something I forgot to mention in my article– I lived for 6 yrs beside a very large farm. I have wondered how much we may have been affected by the chemicals used there and on the fields around us.

  • Jody November 28, 2014, 6:04 pm

    Kina,

    It makes you wonder doesn't it.

    My mother was convinced that the house I live in is a sick house. I don't know if it has been a bigger factor than the house before this one. I'd have said the first house was worse, but that the problems that started there just continued to get worse after we moved here.

  • Sing November 28, 2014, 7:25 pm

    Jody, once again a very important subject. A lot of us being low income and low energy, live in places with low standards. Of course the whole world is increasingly polluted and the stuff just circulates.

    But, coming down from that level of generalization, the places I have rented are old and or not in good repair to begin with. Then the landlord often decides to renovate some parts while I am living there paying full rent. Never has lead paint removal been done right. Have I ever lived anywhere without lead paint? Not sure. Anyway there has been lead dust around definitely.

    This current place had an old propane heater with a hole in it so that it wasn't all getting vented to the outside but coming in. I h ad headaches and felt sick and depressed all the first winter, asking maintenance about this heater. But they said there couldn't possibly be a problem with it. The next fall I insisted on having it checked when all the heating units were being checked and serviced. When it was, the hole was found and they replaced it immediately.

    The other thing which happened in this current place is that the floor was polyurethaned right before I moved in. I was told it was finished but it was still greasy and emiting fumes. The stuff got on my best rugs, my socks, the shower floor etc. This made me feel sad and helpless. It was far beyond what I could do to move here and I am not sure I will have the energy or ability to move anywhere else. But about the floors, I learned afterwards that polyurethane takes two weeks to dry. I would say a month before the fumes die down.

    As for mold, I am very alert about that, keep the bathroom dry and check under the kitchen sink regularly. You can't trust water not to leak. There is currently a small leak under the kitchen sink but I am managing it instead of having workmen come in and tear everything apart. There was an ice jam over my closet on the roof last winter and the water poured down. It finally dried out and I took my clothes back from where I had piled them around my one room and put them back in my one closet. Then when they said they wanted to put a new roof on and redo the closet, I implored them not to, as the leaking had stopped. It will be okay as long as no ice jams build up again this winter, which now they are going to keep after. I dread workmen all over this place making a mess and noise and taking days and weeks often on jobs. And I am not going to leave everything I own unprotected, so I feel I have to stay.

  • Jody November 28, 2014, 8:34 pm

    Sing,

    I can so relate to so much of what you said. I also have a leaky pipe under my kitchen sink right now, which we can't replace until we can afford a lot of work under there.

  • Sing November 28, 2014, 9:26 pm
    Jody

    Sing,

    I can so relate to so much of what you said. I also have a leaky pipe under my kitchen sink right now, which we can't replace until we can afford a lot of work under there.

    Oh, it is great not to be alone!

  • Nico November 29, 2014, 10:12 am

    I went from mild to moderate me/cfs (I didn't know I was sick, actually) to severe after an acute and week -long insecticide poisoning.

    Having MCS, I know when things are not "pure". I have more pain these days, which may be because I'm sleeping on the sofa for the past month. It's not overtly off-gassing at all, but something is different. But, there is no way I am able to determine this for sure. (It could just be that I have more pain because something else. Maybe needing to stand more on and off.)

  • boohealth November 29, 2014, 8:17 pm

    Good piece. Depressing, too.

  • boohealth November 30, 2014, 8:37 am

    I've been thinking more about this story and wonder how common it is. Houses are built badly and renters or owners are not educated in the simple maintenance issues (like storm drains, gutters etc). Pipes leak at the joints–inevitably. People don't think about it until there's an obvious problem. Most homeowners have an experience of leaking pipes leading to algae and mold contamination. Basements and crawlspaces are a dumb invention. I think they may have come from early root cellars, which had a purpose. Soil holds tons of moisture. And water takes the path of least resistance. Very few basements are not moldy–unless they are built well with solid thick concrete walls, wrapped properly in vapor barriers, AND are daylight basements–which essentially means they are first floors. UGH. I wonder how many waterbeds leak, too. Probably a lot.

  • Jody November 30, 2014, 6:46 pm
    Nico

    I went from mild to moderate me/cfs (I didn't know I was sick, actually) to severe after an acute and week -long insecticide poisoning.

    Having MCS, I know when things are not "pure". I have more pain these days, which may be because I'm sleeping on the sofa for the past month. It's not overtly off-gassing at all, but something is different. But, there is no way I am able to determine this for sure. (It could just be that I have more pain because something else. Maybe needing to stand more on and off.)

    Nico

    Always a drag when you can't determine what is causing the new or increased symptoms. We try different theories, change what we are doing because it MIGHT be this, or MIGHT be that … and so often in the end we still don't know what started it.

    Though in the case of the insecticide poisoning, that one was probably pretty stark and clear.

  • Jody November 30, 2014, 6:50 pm
    boohealth

    I've been thinking more about this story and wonder how common it is. Houses are built badly and renters or owners are not educated in the simple maintenance issues (like storm drains, gutters etc). Pipes leak at the joints–inevitably. People don't think about it until there's an obvious problem. Most homeowners have an experience of leaking pipes leading to algae and mold contamination. Basements and crawlspaces are a dumb invention. I think they may have come from early root cellars, which had a purpose. Soil holds tons of moisture. And water takes the path of least resistance. Very few basements are not moldy–unless they are built well with solid thick concrete walls, wrapped properly in vapor barriers, AND are daylight basements–which essentially means they are first floors. UGH. I wonder how many waterbeds leak, too. Probably a lot.

    boohealth,

    Yup, crawl spaces in the day of root cellars served a purpose. The one I had just invited animals under the house apparently and then they busted up plumbing and furnace pipes.

    Our waterbed was old, one that we bought when I was pregnant with our first child so I could sleep better. And I did.:) But it would spring the occasional leak over the years and I suspect that we didn't catch them all. The ones that got us wet we caught:) but there were possibly some on the underside that meant we were laying on a mattress laying in water.

    You're supposed to add this stuff periodically to the water bed to eliminate bacteria — I don't know how effective it was, or even if it was all that safe once it was leaking out of the bed. We couldn't afford to get this stuff, so any bacteria just staying in there proliferating till the final tidal wave that hit our whole bedroom and is still in our carpet.

  • Nico December 1, 2014, 1:15 pm
    Jody

    Though in the case of the insecticide poisoning, that one was probably pretty stark and clear.

    Yes. Thanks Jody, for the reply. :)

  • caledonia December 1, 2014, 1:27 pm

    Chronic low level carbon monoxide (CO) poisoning mimics the symptoms of ME/CFS. The treatment is hyperbaric oxygen to drive the CO back out of the bloodstream. The CO replaces the oxygen in the bloodstream and that's how it makes you sick. It has to be forced out under pressure, otherwise it can take years for it to come out naturally.

    One of the best easy things a person can do is to purchase a CO detector. CO is colorless and odorless, so the only way you know if you're being exposed (other than feeling mysteriously sick or actually dying) is to have an alarm. If that thing goes off – get out immediately! Everyone should have one of these along with a smoke alarm.

  • Jody December 1, 2014, 3:58 pm
    caledonia

    Chronic low level carbon monoxide (CO) poisoning mimics the symptoms of ME/CFS. The treatment is hyperbaric oxygen to drive the CO back out of the bloodstream. The CO replaces the oxygen in the bloodstream and that's how it makes you sick. It has to be forced out under pressure, otherwise it can take years for it to come out naturally.

    One of the best easy things a person can do is to purchase a CO detector. CO is colorless and odorless, so the only way you know if you're being exposed (other than feeling mysteriously sick or actually dying) is to have an alarm. If that thing goes off – get out immediately! Everyone should have one of these along with a smoke alarm.

    Caledonia,

    Yes, I agree. We have a CO monitor in our house now.

  • antares4141 December 3, 2014, 10:54 am

    I suspect my ocupationanal exposusure to pesticides set my illness in motion. But my house was very moldy also and the mold drove my day to day symptoms. When I moved out got better moved back in got much worse. Finally moved out for good but never got near 100% and in fact continued to slowly decline over the years. Made a few bad moving choices but never as bad as the original house. I also had a long history of exposures to chemicals ocupationally and with hobies. Billions of people live in less than optimal conditions as far as mold goes without any apparent adverse effects. So I lean hevely on hypothesis mold related illness/chronic fatigue syndrome is much more complicated than simple mold exposure. Take for instance aspergillosis. It's a mold infection but not nessasarly caused by the mold but an underlying immune disorder that predisposes one to it. Aid's, or drugs given to transplant patients, chemo therapy, or TB, or chronic obstructive pulmonary diesease. All make one susceptible to aspergillosis. Could be something as simple as a sexually transmitted disease, or from a tick. Could be a combination of all or any one, or none of the above. That's the $64,000 question. That's why I rip on authorities specifically for there denial of obvious clues like our sensitivity to mold (thousands of families forced out of there homes no help or even recognition from authorities!) gi hallmark symptoms of CFS and a vital clue that it's not phychological. They either have to be totally incompetent or corrupt or some combination of the two. They being goverment officials politicians who ignore us and buerocrats in cdc responsible for public health. Should be thrown in jail for the rest of there lives. There should be a hevey tax & fine burden imposed on all Drs (especially those who ascribe to the psychological explanation as if it is fact but also those complicit) for belonging to such a corrupt institution and supporting it with the credibility they lend to it. You impose those types of risks and penalties on people responsible for public heath and they would have a totally different attitude. It would expose the truth that they are not acting strictly on principles and values and what the scientific methode infers regarding cfs. It's all about the money and a lack of empathy.

  • antares4141 December 3, 2014, 11:05 am

    Get a co detector with digital readout. There cheap now and not only alert you but let you know how much your being exposed to. I suspect co poisoning is more complex than simply tying up your hemoglobin with co. In other words there are toxic compounds in combustion products that might harm you in other ways.

  • u&iraok December 4, 2014, 9:42 am

    Terrible experience, Jody, I'm sorry. Your comment about burning furniture, painted wood, etc. stood out to me because in my neighborhood someone is burning that in their furnace. Every night there's a chemical smell in the air so I can't open my window. Our next door neighbor was doing that until my husband told him about the toxins in the treated wood. We also have several people in the 'hood that burn the treated wood and plastic, wiring, etc. If we're outside when it happens we both get sick. It comes into the house and we're miserable. People don't realize how nasty and dangerous it is to burn toxic materials. The cumulative effect of all these people burning improperly is like a large factory spewing toxins into the air with no filter. The factor would be fined and maybe shut down for that.

  • jerrymcfadyen December 4, 2014, 2:41 pm

    Thanks for sharing your story. It sounds much like my life story in a lot of ways.
    The difference is that I've spent most of my life using all kinds of pesticides. As a teenager working on a farm we used tons of chemicals and had no idea about the need to protect our selves. Then as an adult working in the Pest Control industry using many different pesticides very day.
    I almost forgot about riding our bikes around following the mosquito fogging trucks as kids.

  • Sing December 4, 2014, 4:27 pm

    That is appalling, Jerry! I am so sorry. Maybe to lesser degrees most of us have innocently been around poisons or used them. We aren't told by officialdom until years afterwards, if then. Usually the poorer, less educated, less mobile people get it the worst. And children!

  • Jody December 4, 2014, 6:35 pm
    u&iraok

    Terrible experience, Jody, I'm sorry. Your comment about burning furniture, painted wood, etc. stood out to me because in my neighborhood someone is burning that in their furnace. Every night there's a chemical smell in the air so I can't open my window. Our next door neighbor was doing that until my husband told him about the toxins in the treated wood. We also have several people in the 'hood that burn the treated wood and plastic, wiring, etc. If we're outside when it happens we both get sick. It comes into the house and we're miserable. People don't realize how nasty and dangerous it is to burn toxic materials. The cumulative effect of all these people burning improperly is like a large factory spewing toxins into the air with no filter. The factor would be fined and maybe shut down for that.

    u&iraok,

    Your post highlights the other side of what happened to us. Not only were we exposed but anyone who was near the smoke coming out of our chimney. Spreading of the ripples.

  • Jody December 4, 2014, 6:36 pm
    jerrymcfadyen

    Thanks for sharing your story. It sounds much like my life story in a lot of ways.
    The difference is that I've spent most of my life using all kinds of pesticides. As a teenager working on a farm we used tons of chemicals and had no idea about the need to protect our selves. Then as an adult working in the Pest Control industry using many different pesticides very day.
    I almost forgot about riding our bikes around following the mosquito fogging trucks as kids.

    Awful. I can relate, I don't know what all chemicals we and our kids were exposed to, living in that farming area. So much for the whole country and fresh air concept.

  • antares4141 December 5, 2014, 12:33 am
    jerrymcfadyen

    Thanks for sharing your story. It sounds much like my life story in a lot of ways.
    The difference is that I've spent most of my life using all kinds of pesticides. As a teenager working on a farm we used tons of chemicals and had no idea about the need to protect our selves. Then as an adult working in the Pest Control industry using many different pesticides very day.
    I almost forgot about riding our bikes around following the mosquito fogging trucks as kids.

    Yikes! And I suspect it's safe to presume you have CFS? I did have a lot of small exposures to pesticides before one particular occupational exposure I think pushed me over the edge. I'll probably never really know.

    What get's me is obviously this has happened to tens of thousands of others. Others who obviously complained like I did on deaf ears. If my CFS was indeed set in motion by this. How is it not recognized by regulators who's job is the safety of these materials? That's rhetorical. I know the answer to this. Most the regulators I complained to sided with the PCO, defended what he did. Even though it's a violation of federal law to apply these materials inconstant with the label. Of which he wasn't just inconsistent he did the opposite. Said to water in, he didn't. The one in charge of filing the report never did. Stonewalled me every single time I asked for a copy of it. After 4 years and much badgering all I finally got was a letter from the dept of entomology saying they lost it.

    MD'S are not trained to recognize poisonings such as this. I even saw one that specialized in occupational types of exposures like these and he gave me a clean bill of health. (he did make sure I wasn't taking drugs though)

    My experience is relatively rare. Yet the symptoms I have mirror that of most others with CFS. So either there are multiple different ways to end up with the syndrome or my pesticide exposures were not the cause? Maybe it was a tick? Maybe it lowered my immunity to bacteria viruses and fungi? Maybe there are multiple other ways to end up with what basically amounts to the same condition.

    Looking back I suspect a couple of my customers had CFS. One would not let me use roundup and I totally get why she was concerned now. Both just had that subtle unhealthy look or air, lack of muscle tone that comes with the condition. Back than late 80's early 90's there was no internet. You were truly alone with this. As bad as this is could you imagine having no support groups? Nothing but a dr to turn to who thinks you need to see a shrink?

  • jerrymcfadyen December 5, 2014, 10:22 am

    PCO's are well versed in getting around the label requirements. Employers in general are good at covering their own butts not those of the employee. You have to learn to protect your self at all cost.

  • antares4141 December 5, 2014, 11:51 am
    jerrymcfadyen

    PCO's are well versed in getting around the label requirements. Employers in general are good at covering their own butts not those of the employee. You have to learn to protect your self at all cost.

    And as I said regulators encourage they conduct themselves that way. I suspect if I was only exposed to 50lbs or so of the stuf it wouldn't have been so bad. Cause the report never got filed I don't know exactly how much but I suspect it was 7 to 15 tons of fertilizers laced with pesticides. He saved a ton of money not spraying and I suspect didn't warn me cause doing so would be admitting it was dangerous as hell until it's been watered in and allowed to dry. They always say when it's dry it's safe but I suspect that when it's watered in allowed to dry and baked in the sun for a week or so would be a more accurate statement. I suspect another trick he used is when he did spray he would use something like a ten to one ratio of product to water as opposed to something like 100 to 1. To reduce the amount of water he had to lug around and than spray. That arguably was probably much worse for me. And would have been much safer if it actually was watered in and allowed to dry. I remember one time seeing the grass dry but stained with a white material. I suspect that was a fungicide. I stupidly mowed it anyways.

  • 5150 December 10, 2014, 10:09 pm
    daisybell

    Thanks Jody.
    I was being poisoned for a while by waste products from methamphetamine production being poured down the outside drains next to my house. Of course I didn't know that was happening until the police turned up and the drains were decontaminated. Three or four days later I woke up feeling completely different….
    I'll never know how much of a part that incident played in my illness.

    This is a short reply. You didn't have the energy or the money to sue the owners? If ever there was a right time, that was it.
    Take care.

  • daisybell December 11, 2014, 3:06 pm
    5150

    This is a short reply. You didn't have the energy or the money to sue the owners? If ever there was a right time, that was it.
    Take care.

    Unfortunately, I never knew what the chemicals were… The police were not helpful, and once the decontamination had occurred I couldn't gather evidence. The owner of the property was unaware that her tenant was involved in any wrongdoing. The tenant was charged along the others with various offences I believe….

    Bottom line was I had zero proof that any harm had been done to my health, only how I felt. And no doctors would take me seriously.

  • antares4141 December 11, 2014, 3:31 pm

    "Zero proof"
    That's the problem and as I was saying. As sure as I am the pesticides I was exposed to at the very least pushed me over the edge. Without any evidence to this end I have to be honest with myself and admit I don't know this for fact. (As could any jury) Could have been a tick or some type of virus or sexually transmitted disease which isn't understood by science yet. Very annoying and why I focus all my anger at authorities who are responsible for sorting this type of thing out. But take the easy way out. Dismissing it out of hand and instead implying it's psychological. Giving criminally negligent individuals and corporations a blank check to do whatever they want. If I were able to go back and do things different i would have hounded the dept of entomology more until I got them to file a report or be investigated for not filing one. While I couldn't have proven my illness was due to my exposure. I could have presented evidence that it was indeed extensive, atypical and certainly possible of doing such.

  • wastwater February 23, 2015, 8:55 pm

    Altitude sickness and carbon monoxide poisoning maybe me/cfs mimics.I was wondering if something going wrong with metabolic pathways may leave you oxygen starved or with too much carbon monoxide.

  • antares4141 February 23, 2015, 9:35 pm
    wastwater

    Altitude sickness and carbon monoxide poisoning maybe me/cfs mimics.I was wondering if something going wrong with metabolic pathways may leave you oxygen starved or with too much carbon monoxide.

    Not sure who this post is referring too?