The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Fibromyalgia a sleep disorder? A recovery story

Discussion in 'Fibromyalgia' started by Vanessa_M, Aug 6, 2016.

  1. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    I am posting here because I want to share my journey of recovery from fibromyalgia.

    There seem to be a lot of theories out there about the causes of fibromyalgia, but I want to share the one that has made the most sense for for me. This is not to say that this would be the answer for everyone, as I believe fibromyalgia could have potentially heterogenous causes and not necessarily explainable by one single causal factor. I am sharing what the cause was for me.

    So I'll start by saying that I was formally diagnosed in 2010 and met all the classic criteria, but got very poor advice initially from a rheumatologist who decided to put me on Lyrica. I was already taking tons of sleeping pills and immune suppressing drugs by this time for chronic insomnia that had developed in tandem with my autoimmune disease. This was a seriously crazy drug cocktail, and it severely impacted my cognitive functioning, among other things. I was pretty much in a drugged out fog most of the time, and seeing very little benefit.

    So what changed everything for me, I will describe here:
    1) First I stopped everything - I was able to take 8 months of recovery time to focus on healing and I could stop pushing myself to work and go to school, which was clearly only making things worse. Relieving myself of this stress burden and allowing myself to function within my own energy envelope was essential.

    2) I did manage to get on disability, as I didn't know how long this recovery was going to take.

    3) Next, I managed to get in to see a sleep disorder specialist, who was VERY experienced with fibromyalgia and had a far more nuanced understanding than any other practitioner I had met.

    His own theory was that fibromyalgia pain results from sleep loss over a long period of time. (Sleep issues seem to be a common denominator in most people with fibro). He explained that if you experience non-restorative sleep or insomnia for a prolonged period of time, your body and muscles don't recover from the wear and tear of daily activities. You accumulate this wear and tear over a longer period, and really start to feel it in your muscles as pain. So he said that for me it was important to recover the SLEEP DEBT that I accumulated over time. **This could have meant anywhere from 6 months, to two years of getting 1-2 hours more sleep each night over and above my norm. It was framed as a long term recovery process, that would not likely be resolved in an overnight fashion.

    4) I was able eventually able to pinpoint one of main causes of my insomnia - something called copper overload. I tested positive using more than one method. http://www.courtneysnydermd.com/blog/copper-overload-too-much-of-a-good-thing3 It's essentially an incredibly stimulating metal, and revs up your adrenal and nervous system activity during the day making it hard to relax and fall into sleep. We also determined I was running off of adrenaline every day, because my energy was so low most of the time (from inflammation and autoimmune condition) that I needed an adrenaline boost just to get me through the day - but this prevented me from being able to fall asleep.

    5) I took Amitryptaline for one year - and this did in fact help me recover the sleep debt. This drug makes it very difficult to wake up in the morning, which in my case was a good thing. In the first few months I was getting 11-12 hours sleep per night, which is ultimately what I would attribute most of my recovery to. The pain gradually began to subside over several months and I was able to do more and more activity. This was not an overnight dramatic recovery, it was gradual and took time and patience. This drug was a short term solution, and it worked, I am no longer taking it now and I am completely off of sleeping pills and immune suppressing drugs.

    6) I changed my diet - no more inflammatory foods (sugars, grains, legumes, soy, dairy, gluten, preservatives). And I can report that I lost about 30 lbs doing so, and did feel a whole hell of a lot better. The other added benefit, was it greatly reduced the severity of my autoimmune condition. Longer remissions, and way less serious flare ups (previously was wheelchair bound, not anymore!).

    7) I went for regular acupuncture treatments at communinty acupuncture clinics, because it is much cheaper and I could go often (up to 2-4 times per week). Acupuncture is amazing - and I can speak highly of the NADA protocol on the ear. This helps with releasing trauma from the system, detoxing etc... and it just puts one into a relaxed bliss state. See http://www.acupuncturetoday.com/abc/nadaprotocol.php

    So that is what I have to report, I am now pain free and I am not wheelchair bound and a much greater degree of normal has been restored to my life. I still have an autoimmune condition and am being treated for copper overload, so that is the next step in my healing process. Plan is probably going to be to take the diet to the next level, and try a Ketogenic Paleo diet.

    If any wants to share their experiences please do - but please note I am not trying to imply that any of the above would be the answer for others with fibromyalgia. Only that this experience certainly raised questions in my mind about some of the potential underlying causes (plural) of fibromylagia pain. I believe that for me it was about chronic sleep loss.
     
    Last edited: Aug 10, 2016
    pattismith, Techs, ChrisD and 2 others like this.
  2. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,026
    Likes:
    2,841
    Vancouver, British Columbia
    That's great that you were able to find a way to be pain free. I don't know that I agree that Fibro is a sleep disorder. Just changing your diet alone could account for a lot of your improvement. My sister-in-law has Fibro after suffering a work injury. She didn't have sleep issues until a few years after getting Fibro.

    What part of BC are you from? I'm in Metro Vancouver. :)
     
    Valentijn and Vanessa_M like this.
  3. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    @TigerLilea

    Yes, I did list a lot of things there which could have contributed to the improvement. But there was a history for me of chronic long term sleep loss, so recovering the sleep debt made perfect sense to me and absolutely worked. I am referencing that sleep doc because he had A LOT of clinical experience helping people with fibro, and the vast majority of them did have insomnia or non-restorative sleep issues. As I understand it, he is now in the Okanagan - his name was Dr. Cridland.

    Diet was definitely huge too you are right to point that out, it really brought down inflammation levels in my body, but in terms of recovering the enormous sleep debt - the meds definitely did the trick.

    Has your sister ever had a full sleep study done? Injuries or trauma related to injury, I think could certainly provoke this kind of condition. I seem to hear this over and over again, that some people develop fibro after an accident or major trauma.

    I'm on the Island - Victoria :) Nice to meet you and thanks for commenting!
     
    Last edited: Aug 6, 2016
  4. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,026
    Likes:
    2,841
    Vancouver, British Columbia
    She has had so many tests done over the years but I don't know if she had a full sleep study or not.
     
  5. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,123
    I have several sleep disorders and have had so many sleep studies, I've lost count. For the most part, I've had the sleep issues since I was a teenager.

    It wasn't until a complicated broken arm that I developed FM. My neurologist who treats my FM and is also a sleep specialist believes that FM is a neurological disorder usually set off by a bodily injury. The injury heals but your brain starts a feedback loop, so to speak, and the pain continues and spreads to the whole body. For me it's like a deep ache down to the bones, you feel like you have the flu, running a 106 degree temperature AND have been run over by a mack truck that also backed up and ran over you again.. I had never experienced this type of pain.

    However not everyone who has an injury goes on to develop FM. The same thing can be said about sleep disorders. So there's probably a genetic component.

    What's interesting is that studies are showing that some people with RLS will end up with FM. That may, emphasis on may, mean some people who develop RLS may have a neurological condition that may be related to FM.

    But sleep and FM are definitely related. It's theorized that the sleep issues are sometimes caused by a neurological disorder which like RLS may be related to FM. My theory is the symptoms are driven by you're nervous system.

    Believe me, if I only needed rest, I would have been cured a decade ago. I have been known to sleep sixteen hours and it still doesn't help. One of the problems is the issue of restorative sleep and that can only be improved so much even with the best sleep hygiene. Not all sleep disorders can be completely resolved. I have sleep apnea which was resolved with a cpap but it hasn't really improved my fatigue. At least I know my brain isn't being deprived of oxygen.

    With a few exceptions, I'm not a fan of just change your diet, gobble supplements and you will be cured theory. I've always eaten healthy foods. While a balanced diet is very important, this also applies to people who are well. It might make you feel better but it's all relative and not a cure.

    It's always great to hear that someone's feeling better but as you said it can be complicated and quite difficult to pinpoint what is causing what. Something that might help one person won't necessarily help another.

    Take care.
     
    Last edited: Aug 7, 2016
    Techs, Comet, OhShoot and 1 other person like this.
  6. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    @barbc56 Hello :)
    Thanks for sharing your experiences. This is such a brutal condition, I fully sympathize with what you describe. I wanted to share this, because I just want people to know that its not impossible to recover. What I share here may not be the answer for everyone, but it is stuff that I wish I knew from day one of getting my diagnosis.

    I've certainly heard similar stories to what you describe, where people get a major injury and go on to develop FM. But I don't think that is the only way it can happen, and very interesting and suggestive that you had a sleep disorder prior to the injury.

    I'm just sharing the perspective of one specialist, who saw a lot of success stories in his practice that were tied to sleep recovery, but that doesn't mean it is the only cause necessarily. FM may just be the default category that people with widespread pain, sleep issues, fatigue etc... get lumped into, but its possible that the causes could be completely heterogenous (rather than it being a single cause disease entity).

    What I can say with 100% certainty is that prolonged sleep deprivation does cause widespread body pain (and pretty much everything else on the FM list - I had the whole range of symptoms) - this is because the wear and tear in your tissues from day to day activity does not repair like its supposed to. In this kind of explanation, the pain is not just a brain loop issue that tells you you're having pain when its not really there. Though, I certainly believe that those kinds of unhelpful feeback loops can develop - probably why this whole limbic system retraining thing is super effective for some people.

    As for the symptoms being driven by the nervous system - I can fully agree with that point, I definitely experienced some level of hypersensitivity and a tendency to easily get overwhelmed, or feel overstimulated quite easily. Like I was perceiving my world more intensely than everyone else and at the end of the day just could not relax into sleep. Nervous system was just on overdrive all of the time. I never had any kind of injury trigger like you, but definitely a few psychological traumas. But since I discovered that I have high copper / low zinc, that at least partially explains why my nervous system was on crazy overdrive. It is an extremely stimulating metal, and some people just don't regulate/eliminate it from the body efficiently. Hence the focus now on normalizing copper levels and taking other beneficial nutrients to bring things back into balance. There were a few minerals/metals out of whack when I got tested, and all can impact the nervous system functioning.

    As for diets, they may not be the 100% answer on their own, but combined with other things can be a big game changer. I don't think there is one single treatment or intervention that will work for this on its own, but it is going to be a combination of factors that support recovery. At least that is what happened for me.

    Do you sleep for 16 hours consistently, or just sometimes. When you say you have a sleep disorder, is it actually insomnia or something else?
     
  7. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,123
    Oooookay, that's a whole different ballgame. Something about this thread was niggling in the back of my head. These "therapies" mentioned above are pseudoscience at best. The people who run these programs are scammers and prey on the sick. That is NOT the feedback loop I was talking about.

    The meds you mention only provide sympton relief. All the other techniques are geared more towards those who have symptoms from being tired. That is not the same as fm/me/cfs.

    I am not disputing whether you have FM or not as I simply don't know. However 99.9% of patients will not recover by using only the above techniques.
    http://www.ei-resource.org/treatmen...g-amygdala-and-limbic-system-desensitization/

    I am now going to gracefully bow out of this thread.
     
    Last edited: Aug 7, 2016
    Valentijn likes this.
  8. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
     
    Last edited: Aug 7, 2016
    pattismith and Techs like this.
  9. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,026
    Likes:
    2,841
    Vancouver, British Columbia
    This definitely falls under junk science in my book. My personal belief is that anyone who claims to be cured of CFS or FM by limbic retraining probably never had FM or CFS to begin with. If it were as easy as that, we would all have been cured many years ago.
     
    Valentijn, barbc56 and Vanessa_M like this.
  10. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    Ok got it, I was not aware this type of retraining had come under such heavy criticism. But that being said, I am going to see what happens with my close friend. She is trying it, and I may give it a shot too if she gets good results. We both know that we have trauma related patterns/programs running, that could benefit from this kind of approach. She found an affordable 2 day workshop and was raving about it afterwards. I know some programs are charging people thousands, which sounds crazy to me.

    Also, I just want to say that it is my feeling that both CFS and Fibromylagia could be heterogenous conditions, they are 'catch all' diseases of exclusion that people are lumped into based on symptom similarity. But there may not be one single effective cause or solution that unanimously applies to all people are diagnosed. This is the kind of issue that comes about when there aren't really any biologically based tests (not like going to get bloodwork done, to diagnose diabetes anyway). It is more about the collection of symptoms that one presents rather than testing for the presence of a known disease entity. At least that is my understanding. There were never any biochemical tests done on me to diagnose the Fibromyalgia, it was 100% symptom-based and more than one practitioner arrived at the same conclusion.
     
    pattismith likes this.
  11. Kina

    Kina Admin Support Staff

    Messages:
    10,039
    Likes:
    15,954
    Ontario, Canada
    @Vanessa_M could you please change the pink font, it is having some serious negative effects on me.

    I am with TigerLilea re: limbic retraining being junk science.

    Nobody is "bent on trying to invalidate" your recovery experience. You should expect both questions and feedback. This thread is just another example of why we don't have a forum for "recovery". Somebody posts about their recovery and if a member questions or has any critique whatsoever, it disintegrates into accusations of personal attacks or negativity ... . It is not negativity. It's reality. If a member doesn't regard fibromyalgia as a sleep disorder or thinks that limbic retraining is pseudoscience or knows from experience that dietary changes and taking supplements have done nothing-- are they not allowed to say so? You are relating your own experience and others are relating theirs. There is no right or wrong and negativity vs positivity is a matter of perspective.

    I am glad you feel better but remember there are many here who have done many things that you have mentioned -- why have you recovered and they have not? Think about it and don't consider where they come from as negativity or personal attacks.
     
    Valentijn, barbc56 and Vanessa_M like this.
  12. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,123
    @Vanessa_M

    I see you have just joined. In fairness to you, are you aware of the history of me/cfs/fm and cbt/get? You might want to read about that. There are many threads which address this.

    So many have tried these type of therapies and they do not work as far as a cure. So you may encounter a lot of defensiveness. We have also had people who post they are cured and are really selling something. I am not saying this applies to you. Nor does that mean different opinions are discouraged. But doing a search may give you some insight into this.

    Though I'm too tired to post citations atm, the claims that these therapies don't work, last or generalize is backed up by a lot of science.

    This may put things in context. I wish you well in your journey to good health.
    .
    Edit I crossed posts with @Kina and did not see her response. .These are not peronal attacks on you but on these type of therapies..
     
    Last edited: Aug 7, 2016
    Valentijn and Vanessa_M like this.
  13. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    Ok yes, I hear what you are saying. I genuinely thought I was presenting an angle that maybe some people had not considered before and I am fairly new to this forum, and was curious to see if anyone else had had success with sleep recovery, diet and other methods. The doctor I saw was working with this theory, because he did see people recovering in his practice. I had mentioned that limbic system thing as like a side note, or curiosity anyway.

    I will keep your suggestions in mind about my comments and responses in future. Thanks.
     
  14. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    I certainly was not trying to antagonize anyone or create resentment or defensiveness by my post, but I can see now that it would be frustrating if many people here had already tried some of the things I'm talking about. I was not aware that there could also be posts by internet shills, trying to sell something. I am new here and am not aware of the science for and against different approaches, I only know from my own experience that the protocol I followed did work.

    I've also gone on a lot of other investigative tangents on my own too, and come up with some surprising findings which I wanted to share. For example - the excessively high levels of copper/ low zinc - both me and a friend (who has CFS) tested positive, and we were like WTF?! I know there are other people on the forum that have reported the same thing. It can affect the nervous system functioning in a significant way, and I wanted to share that.
     
    barbc56 likes this.
  15. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    @barbc56 @Kina I want to share too, that a lot of my own research has been focused around autoimmune disease, mental health, the microbiome, and nutrient therapeutics - and not specifically or exclusively on FM/CFS treatments or science.

    That is my personal bias and area of interest anyway. The camp that I see myself falling into is this: that my primary underlying condition is RA (autoimmune condition) and the fibromyalgia was the secondary condition that I developed as a result of a combination of factors. The main sources I have been following for information are Dr. Amy Myers, Dr. Terry Wahls, The Institute for Functional Medicine, Dr. William Walsh, The Microbiome Medicine Summit etc...

    So its not that I haven't done a ton of reading and research, I am just not necessarily familiar with the all source material that circulates in this forum. I did read a few threads on CBT, it sounds like there has been some controversy surrounding that. Another member shared with me some interesting perspectives though, and provided me with a more realistic way to think about what aspects it can help with - for any person suffering from a chronic illness (which avoids constructing CFS/FM as in somehow 'purely psychological')
     
  16. Mij

    Mij Senior Member

    Messages:
    2,206
    Likes:
    4,478
    It's absolutely not the answer for anyone with M.E/CFS. :)
     
    TigerLilea, Valentijn and barbc56 like this.
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,242
    Likes:
    4,128
    London
    I think it is great Vanessa that you managed to find a way of becoming pain free. You did do a lot of different things so it would be hard to tell if one was the big difference or if you needed to do all of them. It also sounds as if it took years to hit on the right combo.

    My personal experience was of being left in pain after a serious road traffic accident. The pain started straight away for me. There was no previous insomnia . I did have ME before the accident but was able to sleep (as long as it was from 12 midnight to 12 noon approx).

    I was also able to drug myself into long sleeps after the accident but this didn't make any difference to the pain or stiffness. Also had a accupuncture - there was some little help but not much. Anti-inflam diet did nothing for me. I felt trapped in a pain amplifier and did many different things over years as I was desperate.

    What finally helped me was a combo of Celebrex and antiviral drugs. No extra sleep needed.

    It may be that for those if us with Fibromyagia after serious injuries there is a different path or it could just be me.
     
    Last edited: Aug 8, 2016
  18. JES

    JES Senior Member

    Messages:
    416
    Likes:
    657
    Copper overload can be a real issue, but many tests are unreliable, so I'm interested in what kind of lab tests you went through. Hair mineral testing for example is not reliable. I have had myself done both intracellular and RBC copper tests, those two are fairly reliable and they showed I was deficient in both copper and zinc.
     
    pattismith and Vanessa_M like this.
  19. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    No, it didnt take several years. I was a mess and non functional up until the point that I did that 8 month intensive healing period, which I described above. I took a few months to start noticing the pain dissipating. More sleep really made a difference for me but yes, I also attribute the other interventions as being helpful. I dont necessarily believe that healing from a complex chronic disease is going to happen from doing just one single thing.

    As I've mentioned in other posts, I think FM could have heterogenous causes. A lot of people who've had accidents trigger it, are reporting that sleep recovery doesn't help them.

    The camp I fall into is autoimmune disease first, then developed secondary fibromyalgia.
     
    ukxmrv likes this.
  20. Vanessa_M

    Vanessa_M

    Messages:
    71
    Likes:
    32
    British Columbia
    Hi there,
    Havent heard of those tests, but I think you were wise to do more than one to be sure. Reliability of any given test is always up for debate. I hear people say hair mineral testing is not reliable, but I also hear standard bloodwork or urine is not either - because it doesn't accurately reflect what's happening in the tissues, and supposedly copper tends to accumulate in the liver.

    If you don't mind, could you reference your sources for claiming hair tests are unreliable? - I am genuinely curious what main sources people are refering to on this, I'd like to read them myself. I could only find one dated study from like the 1980's on PubMed, and another member pointed out the problems with that one to me.

    I did a hair mineral test to initially screen, and followed up with the metabolic panel at Direct Healthcare Access II labs. In future I may be trying a urine challenge (with chelation agent) as I've heard those ones are good.
     

See more popular forum discussions.

Share This Page