30 Years of Fibromyalgia Suffering Solved

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Fibromyalgia Pain
Fibromyalgia Pain

Not long ago, I was contacted by a follower on Twitter regarding a troubling case of chronic pain that this individual had been suffering with steadily since the age of 16—for almost 30 years.  She wondered if I might be able to help her diagnose the cause of her ongoing symptoms, since a litany of doctors seemed perplexed as to how to stop her pain beyond prescribing a stream of heavy-duty opioid medication, which only temporarily masked her symptoms.  We scheduled a phone consult and spent almost two hours thoroughly analyzing her case.

Leah, 46, is a stay-at-home single mother of three children: two boys and a girl.  She was formally diagnosed with fibromyalgia in 1998, but had been suffering with full-body pain most of her adult life.  It took us almost 30 minutes of two-way dialogue just to define the full constellation of symptoms she was suffering.  We used the symptom checklist from my Problem Description Worksheets to be careful not to miss anything, and to be as specific as possible. This is the full list of symptoms Leah disclosed:

  • aching
  • bloating (stomach)
  • burning (neck/shoulders)
  • cramping (feet frequently, sometimes in hands)
  • dizzy/lightheaded
  • exhaustion/fatigue
  • itchy (especially after taking gout medication)
  • nausea
  • numbness (mostly in feet, toes, and right leg)
  • pins and needles (arms, neck, shoulders predominantly)
  • pulsing (in back of neck and base of head)
  • shooting pain (in arms and legs)
  • sleepy/drowsy (periodically)
  • swelling (in hands, feet, and face)
  • tender to touch (back/base of neck)
  • itchy/‘crawly’ skin
  • hives (periodically)
  • frequent headaches/migraines
  • popping/snapping in shoulder (started 15 years ago)
  • ‘squiggly worm’ in left eye vision

Where does one start with such a long and varied list of symptoms?  Normally, I like to separate out the seemingly unrelated symptoms and just focus on finding the cause of the most prevalent or serious symptom or closely related set of symptoms, then see if managing the cause helps alleviate the other symptoms.  But in Leah’s case, the constellation of symptoms was so broad and diverse, we decided to group them together and see if we could find any commonalities among them.

The next question involved defining who had the problem and who didn’t.  This ‘IS/IS NOT’ comparison often reveals telling differences which point to possible causes.  The trick is to always look for closely related ‘IS NOTs’.  I asked Leah who else most closely related to her or who shared many common activities does not have any similar symptoms?  She indicated that none of her three sisters, her three children, mother or father, partner, co-workers, nor close friends had chronic symptoms that were anything like the ones she listed.

Next, I asked her to indicate as clearly as possible where on her body she experienced her symptoms, and where she did not.  Oftentimes, when there is clear separation as to the location on the body where the symptoms are experienced and where they are not experienced, this can point to possible causes which can be quickly tested.  In Leah’s case however, she said her symptoms were experienced in one form or another virtually everywhere on her body, with almost no one specific area untouched.  This truly appeared to be an extreme case of fibromyalgia, which usually manifests with full-body pain of indeterminate origin and expression.

Fortunately, we still had two more primary areas to explore that might reveal some possible explanations for her complex and painful symptoms.  I asked Leah to try to remember when she first experienced any of these symptoms.  Even though it was almost thirty years ago, she remembered clearly how old she was and even what she was doing when it first started: at the age of 16, while playing the piano!  She indicated that the frequency and severity of her symptoms came and went periodically, but generally had grown more severe and persistent with every passing year.  Now, her muscle pain and headaches were so extreme it often made her cry, with flares often lasting two to three full days.

The last often revealing category to explore pertained to the geographic location(s) where Leah lived and traveled.  She indicated that she had lived in the Portland/Eugene/Springfield area of Oregon most of her life, recently moving a bit further inland to central Oregon.  When I asked where else she had traveled on vacation or visits, particularly areas where she did not experience her symptoms as severely, she volunteered the first sliver of hope.  She remembered a very specific time almost fifteen years ago when her symptoms suddenly and temporarily cleared up completely for a few weeks, when she visited her sister in Tucson, Arizona in the spring of 1998.

Normally, I like to systematically search for and define the relevant distinctions under all of the problem description categories pertaining to who, when, and where, before formulating and beginning to test the full scope of possible causes.  But in this case we had such a clear and sharp area of immediate contrast, we decided to explore this new distinction immediately.  What was different about the areas she lived in Oregon where she experienced her severe fibromyalgia symptoms compared to the location in Tucson where they suddenly and temporarily disappeared?  A number of differences immediately came to mind: Tucson is much drier than costal Oregon; Tucson is a higher elevation than Portland; the desert climate of Tucson has a completely different type of flora than the wet and cool Portland area; and of course, Tucson is much sunnier than the Portland area.

What possible causes could we speculate given these intriguing and sharp distinctions?  A number of possible causes came to mind immediately.  Was Leah possibly being exposed to hidden sources of mold in the damp and clammy environment of Oregon?  Might she be allergic to certain airborne pollens or organic material from the dense and leafy fauna found in Oregon?  Or maybe it was a dietary change than she suddenly went on when she visited her sister in Tucson?  We explored each of these possibilities, but one by one each of the hypotheses got ruled out.  Leah had moved from the coastal area of Oregon to inland Oregon where it was far drier, and she had lived in so many different residences in the past thirty years that it was hard to imagine every house would be infested with mold.  Similarly, the high desert environment of central Oregon where she currently lived had far different flora from the wet coastal city of Portland, and her symptoms were just as severe if not worse there.  Also, she said that the meals her sister cooked and the restaurants they frequently during her visit to Tucson weren’t much different from her regular diet back in Oregon.

This left one remaining area of sharp contrast between Oregon vs. Tucson: the duration and intensity of sunshine.  Tucson is not only much drier and thus gets more hours of sunshine, but it is also much further south with stronger and more direct sun at the time of year when Leah visited her sister.  But how did this explain that Leah was still experiencing her fibromyalgia symptoms as bad as ever now that she lived in central Oregon which had almost as much sun as Tucson many times of the year?

This was where Leah revealed the other ‘smoking gun’ in the investigation: she suffered with severe agoraphobia, something none of her siblings, children, partners, co-workers, or friends (that she knew of) also did.  Agoraphobia manifests with a fear of open spaces, particularly public open spaces.  It turned out that because of this condition, which she had suffered with all of her adult life, she rarely ventured outside in the limited sunshine which most of Oregon provided.  On the other hand, Leah said that when she visited her sister in Tucson, the two of them spent quite a bit of time outside in the remote region of Arizona where her sister lived.

So what was it about the extra sunshine that could possibly explain the complete set of Leah’s painful symptoms?  This brought up the possibility of Vitamin D deficiency.  Vitamin D is supplied in plentiful quantities by ultraviolet B rays of natural sunshine (and also certain types of tanning beds), however there are only a few foods that naturally contain Vitamin D, and only in small quantities: mostly from fatty fish, eggs, or fortified milk and fruit juice.  Leah mentioned that she was on a disability pension and consequently also a very limited diet, largely constrained by the use of food stamps.  Vitamin D deficiency has been linked with fibromyalgia and chronic pain symptoms in various studies, and the facts clearly supported this as a strong possible trigger of Leah’s symptoms.

Fortunately, this would be easy to test with a quick blood test.  Ironically, her regular doctor was reluctant to test for Vitamin D deficiency for Leah, arguing that this couldn’t be the cause of all her complex symptoms over such a long history of illness.  Leah had to go to two clinics before she found one willing to run the test, and sure enough it immediately showed a significant deficiency.  Leah began taking Vitamin D supplements, and even though it was not always easy for her to get outside because of her agoraphobia, she tried to get outside for daily sleeveless walks in the sunshine every day.

In the two months since conducting our analysis, Leah reports that her symptoms have done a complete 180° turn.  She has only felt the need to take one pain pill, and has completely stopped taking the 2-3 daily anti-depressants that was a regular staple of her treatment program.  She is happy, upbeat, and feeling stronger and healthier every day.  (Watch for a video interview with Leah discussing her surprising and rapid turnaround on our YouTube channel in the coming weeks!)

If you have a similar health case or situation that you’d like to share with our readers, or additional insights from your own experience with fibromyalgia, please add your thoughts in the comment thread below.  If you believe that you might benefit from a review of your own health problem with a view to identifying the underlying cause and finding a drug-free cure, download the free problem analysis worksheets at pinpointdiagnostics.net.  A free sample of the book Be Your Own Health Detective can be downloaded via the link in the sidebar to the right, which provides additional success stories using the diagnostic technique outlined in this article.

Live long and live naturally!

Reid Jenner

Comments

  1. Alannah saunders

    Oh my god I live in oregon and am used to the sunshine of southern California I noticed my interstitial cystitis progressed where it didn’t bother me so much before could it be so simple as lack of vit d mine is in the (low) normal range and I have to supplement and it’s still not enough I know the lack of it is making my body very upset!!

    1. Alannah,

      This clinical study shows a strong connection between women who have pelvic floor dysfunction and vitamin D deficiency:

      http://journals.lww.com/greenjournal/Fulltext/2010/04000/Vitamin_D_and_Pelvic_Floor_Disorders_in_Women_.19.aspx

      It might be worthwhile investigating tanning beds as an option to ensure you’re getting enough UVB, or make sure you get out in the sunlight whenever it appears in your part of Oregon (sleeveless if possible to maximize absorption).

      Vitamin D is fat soluble, meaning it can be stored for sometime in your tissues and used as needed. So you might be able to get by with spotty periods between sun exposure. There certainly is nothing to lose from trying this, and everything to gain.

      Please let me know how it goes, and if this approach helps. Thanks for weighing in!

      Reid

      1. Great article, the extensive and in depth research is what most doctors don’t do and that’s why unfortunately many people go misdiagnosed when they really have fibromyalgia. I really love your Problem Description Worksheet this is very helpful

        1. Julie, thank you for your feedback on this article. Please let me know if you use the problem description worksheets how helpful you found them in diagnosing any future health issues. All the best! Reid

  2. Jean Wiensch

    Moving to a sunny, drier climate has helped me. I now live in Nevada, previously in Michigan but it was not a cure. I still have flares, I am still limited because of issues of fatigue. But the change in weather has helped. But, without certain medications, no matter where I live, everything returns, the fog, the pain, the ibs, everything. So, yes as long as I take certain medications and vitamins
    it helped but did not fix me.

    1. Jean,

      Thanks for sharing your experience.

      It might be worthwhile for you to maintain a daily symptom log to see if you can connect your flares with some kind of environmental trigger. This can be a simple spreadsheet (paper or electronic) with the rows representing each day and separate columns for: symptoms observed, time observed, physical location observed, location on body, preceding activities, food consumed that day, environmental exposure, time in monthly cycle, and any other relevant information.

      I would also encourage you to download the free Problem Diagnostic Worksheet at http://www.pinpointdiagnostics.net (click on the Download Worksheets tab in the main menu) to see if you can associate a cause based on your prior history. If you’re having flares, normally these are due to some external trigger such as a dietary deficiency (as in the case cited above), food sensitivity (sugar, gluten, or processed food), or environmental toxin.

      Let me know how things go and if I can help in any other way. Best wishes,

      Reid

  3. Mitzi Diaz

    Thanks for sharing this experience. I have been having migranes since I was a girl (now I’m 31). On Nov 2014 I had a brain surgery to remove an AVM, it was a 22 hour surgery followed by 3 days on sedation, but everything went well (I just have a hole in my brain). On February and March 2015 I had a period of stress and that’s when my fibromyalgia symptoms started. Fortunately on July 2015 my PCP diagnosed fibromyalgia after discarding other possibilities and sent me to see a Rheumatologist.
    I would love to get in touch with doctors or researchers dedicated to study fibro to help in clinical studies or research. If my neurosurgeon saw my brain (literally) then I don’t have anything else to hide hahahahaha. Kisses and keep fighting.

    1. Mitzi,

      Thanks for sharing your experience. May I ask what symptoms or medical test required the AVM surgery? Did it clear up your migraines?

      Unfortunately, a diagnosis of ‘fibromyalgia’ isn’t very helpful by itself, since this is just a medical term for general full-body soft tissue pain. The key as always is to find the cause of the pain.

      Stress is a key enabler, but not generally sufficient by itself to cause most pain. Stress works indirectly to weaken the immune system by creating chronic inflammation. (See my recent article on this subject on this same blog.) The key to solving the fibro puzzle is to find the trigger or cause of the symptoms.

      Sometimes this is a deficiency (as in the case cited above), sometimes it is caused by diet (too much sugar or gluten or processed food), and sometimes it is due to presence of some kind of toxin. See my reply to Jean in the comment above for some ideas to help with your ongoing issue.

      Let me know how it goes, and feel free to reach out at any time for additional help.

      All the best, Reid.

  4. Kristin Gillespie

    Reid,
    If you haven’t already done so then please read “The Body Keeps the Score” by B van der Kolk. I think it will make a lot of sense to you, and there is much synchronicity with the issues you raise here.

  5. carol dewey

    I appreciate your article I also suffer from fibro and its very hard to get family member to realize this is an illness and not all in your mind. and trying to get out of doing things.

    1. Carol,

      I understand your plight. Fibro symptoms are ‘invisible’ to outsiders so it can be frustrating to gain appreciation for what you’re feeling.

      Have you tried applying the process outlined in this case study to see if you can better understand what might be causing your condition? I encourage you to download the free Problem Diagnostic worksheets at my site pinpointdiagnostics.net and spend a few minutes identifying the factors that may be contributing to your illness.

      If you need additional help, my book Be Your Own Health Detective (getbook.at/hd) walks you through the process step-by-step with lots of other successful case studies.

      Let me know how it goes. Best wishes,

      Reid

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