This information about Fibromyalgia is in letter format at this time.
Sent Sep 18, 2020, 4:25 PM no reply.
Dear Richard Harris,
I read your article,
Newer treatments for fibromyalgia syndrome,
Richard E Harris and Daniel J Clauw, Ther Clin Risk Manag. 2008 Dec; 4(6): 1331–1342
doi: 10.2147/tcrm.s3396
PMCID: PMC2643113
PMID: 19337439
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2643113/#__ffn_sectitle
My fibromyalgia started very suddenly, and as a result I knew the conditions which caused it.
That led me to doing extensive research. These are the highlights of my current results.
This does not include two of the three substances I found which are very effective in treating fibromyalgia of my particular sort, because I believe it is dangerous for some people, explained below. Therefore I am searching for help for supportive treatment, as well as sharing what I have found.
Forgive me for leaving this in a format aimed at mutual sufferers. It contains the links, if not all in citation form, and the pertinent information.
If either yourself could, or you could guide me to someone else who would, listen and collaborate with me to use and share the information I have found, I would be most grateful.
Deborah Barges
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There is more than one cause for fibromialgia, just as there is with Alzheimer's. As long as the doctors are only looking for one cause, they won't find it.
The systems, not the causes, are what is in common in fibromialgia.
The systems involved are copper and iron homeostasis in the body. In my case, there is a chemical complex with copper which my body can perceive but cannot use, and I hypothesize the same is possible for other types with either copper or iron, and possibly zinc or another zinc antagonist might be able to cause these symptoms.
Substantiating and defining the cause of my fibromialgia:
Per Voltammetric determination of copper with proton pump inhibitor drug omeprazole, by three scientists in Cairo who were testing copper in water (without thinking of what this would mean in the human body), in sentence three of the abstract:
"The experimental results show that the reduction of the copper(II)-omeprazole complex is irreversible."[1]
Not only is the bond irreversible, but it also means that it doesn't combine with other chemicals, which makes it difficult to remove from the body.
This complex keeps the body from maintaing a correct balance of usable copper in the body. Copper is necessary to move and use iron correctly in the body, which is why iron levels cannot be properly maintained in the bodies of people with this kind of fibromyalgia, causing a constant iron deficiency or constant fluctuation of iron levels, and thus many of fibromialgia's symptoms. It can affect zinc balance as well, at the higher end of the copper flucations.
I had high copper, hypercupremia, and took 3 omeprazole tablets. Many people who take long term prilosec PPI or omeprazole get fibromyalgia. Knowing the cause, I have found three substances which very slowly remove it from the body. This is the direction for research, to help people actually recover from this type of fibromyalgia.
I also found that people with this type of fibromyalgia either had dips along the length of their fingernails or tipped down (clubbed) fingernails at the end, which my doctor found to be a symptom of either iron or zinc deficiency, and in my case the lab showed that I have low iron. Two other people had been diagnosed, the others had not. Near the bottom is a link and citation to a peer-reviewed document showing a link between low iron and fibromyalgia.
Cancer treatment and cytokine storms can cause fibromialgia, and I have also read about fibromyalgia resulting from injuries, so these systems may be disreulated without a chemical complex which the body can perceive but not use, but it is likely the same systems involved.
Again, the systems, not the causes, are what is in common in fibromialgia.
Also, people with copper overload (and possibly pyrrole syndrome, undermethylation and/or overmethylation) (see The Walsh Institute page on biochemical individuality) may have the fibromialgia pressure pain points without fibromialgia. The points may relate to low zinc or high copper, because high copper usually goes with high copper (which could be used for Covid-19 and other severe illnesses, using Wilson's disease medications to reduce body stress by reducing extra copper, and allowing more zinc to be redirected to the immune system.)
There are other types of fibromialgia, and I know about something that is supposed to help for one of them as well: clinoptilolite, which is described as acting like a sieve or filter in the body, leaving a trace of aluminum behind (so the aluminum antagonist zinc should be taken with it.) One woman used clay, type unknown, for Cu (I I) OM (copper 2 Omeprazole complex) fibromialgia, and said it helped her.
There is no medical specialty that is set up to help with this at this time. All fibromialgia in my health plan is handled by pain management, so I have been unable to share this information with my doctors.
I have copper overload and undermethylation, and recovery is dangerous as my body now has to deal with increased copper levels too quickly, having "forgotten" the coping mechanisms it previously used to handle copper overload. That means an increase in gout, fatty lipomas, psoriasis, etc., but because I don't have enough iron, I do not get back the hypomania psychiatric condition that is the result of extra copper being dumped into the neurotransmitter transitions of the catecholamine family of neurotransmitters, which uses much copper in iron and ends with adrenaline.
I do get higher norepinephrin, resulting in lower eye pressure, a sudden drop of four points in both eyes, causing flashes in the left eye which I treated at first unintentionally with cooked onions, now with cayenne pepper. It caused me to have to change my blood pressure medication from amlodipine, because it seems to reduce dopamine by increasing norepinephrine. I was getting blurred vision and double vision while taking amlodipine, especially when I ate honey, which turns out to improve glaucoma by lessening eye pressure. I tried cayenne because it increases eye pressure and is bad for glaucoma. I understand that high norepinephrin is not common in fibromialgia.
The higher norepinephrin seems to be caused by the iron deficiency, per the Journal of Neurochemistry's Iron deficiency alters dopamine uptake and response to L‐DOPA injection in Sprague–Dawley rats[2].
So my fibromialgia is much, much less, but my troubles are far from over. Which is why I don't share what's working for me.
One slow way of getting rid of fibromyalgia that is less dangerous is already known. As long as you're not taking an ACE inhibitor or an ARB, because of the potassium issues (adding magnesium can increase potassium, and with these drugs, and some diuretics - and probably others - high potassium is a risk, to kidneys, liver, and HEART, potentially fatal), multiple Epsom salt baths a day help remove this particular chemical from the body, and possibly others that may be causing the fibromyalgia. If Epsom salt baths help for you and you are not on any medication that is liable to cause high potassium, and I suggest getting lab tests just in case you run the high potassium naturally, this may remove some of what's causing the problem and in the process reduce the amount of fibromyalgia.
For safety's sake, you MUST monitor all conditions you have, and all medications you take, and get regular medical checks. If it doesn't help you, don't do it. If it causes a problem, stop. Even if it's helping you, something else can get worse as a result or something new can happen that has not happened before as a result. Until and unless it is under control, stop epsom baths.
Epsom salts are magnesium, which seems to exchange with toxins through the skin in bathing.
Magnesium can (if you have these) reduce calcification of the arteries, depression, reduce clotting, high blood pressure, diabetes, and various cardiovascular conditions, which can be dangerous if you are taking medication for them and the medications thus becomes too strong. It may affect bone density, in a negative fashion or if you are already taking calcium, possibly in a positive fashion.
Low magnesium will not show in lab tests as being low if it is long term, because the body creates a coping mechanism of putting the deficiency in the cells so that the blood will be correct to take care of the brain, heart, lungs, kidneys, etc. These conditions may improve, dangerously if your medications are not adjusted. Frequent monitoring is required for safety.
Magnesium (epsom salt) links:
Uwe Gröber's Magnesium and Drugs
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6539869/#!po=62.5000
Subclinical magnesium deficiency: a principal driver of cardiovascular disease and a public health crisis, by James J DiNicolantonio, James H O’Keefe, and William Wilson
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5888441
Association between Serum Magnesium Levels and Depression in Stroke Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5198859/
Effect of magnesium on fibrin formation from lower molecular weight (LMW) fibrinogen
https://pubmed.ncbi.nlm.nih.gov/11153893/
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Peer reviewed citation for low iron/low ferritin association with fibromyalgia:
Ortancil O, Sanli A, Eryuksel R, Basaran A, Ankarali H. Association between serum ferritin level and fibromyalgia syndrome. Eur J Clin Nutr. 2010;64(3):308-312. doi:10.1038/ejcn.2009.149
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Everything starts as anecdotal before it is studied, so anecdotal connection between fibromialgia and PPIs:
https://www.verywellhealth.com/anemia-fibromyalgia-hows-your-iron-level-3973037
https://www.fibromyalgiaforums.org/community/threads/prilosec.25043/
Anecdotal connection between injury and stress causing fibromialgia:
https://healthunlocked.com/fibromyalgia-action-uk/posts/141831821/fm-lets-find-out-what-we-all-have-in-common-apart-from-pain
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Footnoted citations:
[1] Ghandour, M.A., Hassan, A. & Ali, H.M. Voltammetric determination of copper with proton pump inhibitor drug omeprazole. J Anal Chem 70, 392–397 (2015). https://doi.org/10.1134/S1061934815030065
https://link.springer.com/article/10.1134/S1061934815030065
[2] Bianco, L.E., Wiesinger, J., Earley, C.J., Jones, B.C. Beard, J.L. Iron deficiency alters dopamine uptake and response to L‐DOPA injection in Sprague–Dawley rats. J of NeurochemistrY 20 March 2008
https://doi.org/10.1111/j.1471-4159.2008.05358.xhttps://onlinelibrary.wiley.com/doi/full/10.1111/j.1471-4159.2008.05358.x
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©Deborah Barges Sept 2020 open access