FM lets find out what we all have in common (apart from pain)

[Seamus14]

Is there nothing this site can put up that could start tracking what people post regarding when their fibro started??? I dont believe between everyone that there is no common factors. Dr's tell me they have no idea what causes it?? I dont believe we cannot find common denominators between sufferers. For example - My fibro started when my Wisdom Teeth started to cut through. But I also had a serious leg injury some ten years previous - resulting in compartment syndrome. (Doctors tell me FM is linked to Trauma) 2 key things here, if this site gave us some way of tracking this, I'm certain we can find a common denominator.

[Badbessie]

There are many differing opinions as to the common denominators with links to fibromyalgia. The main difficulty is that at present the causes are theoretical. In my case was it my serious accident whilst caving or my spell in ICU with septicemia? Of course I also have long term osteoarthritis. A young woman I spoke with recently was adamant that it was the trauma of child birth which started her symptoms. Another said it was do to an infection following her tooth being pulled. The list is endless. My pain consultant actually said to me is fibromyalgia one condition or a group of related conditions. I think once we find out exactly what as been damaged we may be a lot nearer to finding out the "Why".

[Sunflower0]

My fibromyalgia started after I had shingles.

[bobbybobb]

You would never be able track a common cause. The reason being is that for some people there might indeed, be something that has triggered the start of their symptoms, such as an accident or other trauma but for other's there will be no evidence of such triggers to explain their onset of Fibromyalgia.

[lillyofthevalley37]

Since there is a link between fibromyalgia and dopermine not working properly I am interested in knowing if members have been on SSRI antidepressants which depletes dopamine

[Hidden in reply to lillyofthevalley37]

Yep over 25 years of them.I have often wondered if antidepressants could have contributed to this.

[lillyofthevalley37 in reply to Hidden]

You might want to read about tyrosine and phenylalanine in relation to fibromyalgia

[Hidden in reply to lillyofthevalley37]

Thanks i stopped taking amino acids few month ago.spent a fortune on all types of supplements and protein even prior to fibromyalgia they go hand in hand with the gym life i lived and loved.I shall have a read up on the two you mentioned and see whats what thank you.every little helps.

[Maya23]

I believe that an as yet undiscovered virus is at the root of FM and other mystery illnesses (I also have Lupus which is also a mystery as to why that starts). I’ve never been right since a glandular illness type virus when I was 13. And the triggers for me have been a traumatic event which left me with PTSD then having twins a couple of years later. That’s when I had the ME label, then it was more new joint pain and a new diagnosis of Lupus, then a few years later Fibromyalgia too. Just a theory though at this point.

[AllthatGlitters in reply to Maya23]

Me too Maya i has glandular fever as a teenager x

[Maya23 in reply to AllthatGlitters]

Well that’s interesting isn’t it?!

[AllthatGlitters in reply to Maya23]

I know and sure this is how mine started x

[skit]

The sad fact(?) is that loads of us have memory issues with Fibro so can't remember how it started for us. Since diagnosis can take years it's nearly impossible for some like me to pin down. Was it that nasty virus, car crash,children's birthing,child with long term condition take your pick!

[hen-house]

Same for me - I can remember being fine and well, not an easy life son with ASD/ADHD, stressful relationships, money worries etc - but i do remember all of a sudden i just didn't feel right, first my eyes/sight went funny and i had the most intense headache things just wouldn't seem to keep still, i had to wear shades indoors to watch TV - hospital didn't have any answers, Then quickly afterwards i had mad stomach pains, GP said maybe too much pepsi max! Then again within about a week from that i seemingly pulled a muscle in my mid back/shoulders - it crippled me for weeks and i feel after that few months it went on from there. Thyroid was found borderline, started then being so tired and i just remember a distinct change to how i felt inside - i dont know what but it was like a bulb went inside me and i haven't managed to ever replace it! I will say though at around that time i gave up smoking after around 30 per day for over 20 years, mad but I've not felt the same since!? that year just as it all started we moved home, my mum got Cancer (shes fine now) my son got assaulted at school, i got Shingles, my Dad died and so on - i have always wondered that all the time i smoked i was pretty crap free apart from sounding like a blocked drain coughing - but i didn't have "illnesses, diagnosis and medication" before i gave up smoking?

Gentle hugs x

[WorldOHurt]

There is a new DNA (genome) study going on at the University of Illinois that found something in their 1st phase of the study. Therefore they are currently doing phase 2 with a lot more people. I sure hope it turns up something in our DNA that causes some of use to get fibro.

[KnackeredKaty]

I think research needs to start with a database of common denominators. The easiest way to do this would be gathering data from GP's or maybe keep info on a Public Health database. Maybe it's genetics. Someone in research must have also considered this, I would hope, but money is always at the root of all research, so governments and/or drug companies need to look into this. I doubt if either are that interested.

[Hidden]

Hi mine started after 8 years of severe stress (divorce and in and out of court to get access to my children) i used the gym as a way to deal with it then i tore a tendon ryt through and it took 2 years from star to finish till i could use my arm relatively pain free basically i never recovered from that have no idea what happened i ended up with fibromyalgia. Through to much stress/ trauma /injury.

I totally agree there must be a link for some of us.

[JudgeMental in reply to Hidden]

Totally get this. Childcare court proceedings made me ill at the time (over 20 years ago) and I never recovered from the loss. Am convinced that fibromyalgia has developed as a result of this chewing away at me every day.

[Hidden in reply to JudgeMental]

Unreal isn't it boils my p@#s to be honest all a wanted to do is be a dad to my kids.and not only has that been taken away 10 year ago now we have to live with this for the pleasure of giving a f@#k.wish a hadnt now.all it did was cause pain and suffering and now a cant even cry if i wanted to due to shutting emotions out.its not right at all.lost my kids, my house my car my personality my sense of humor and to top it all of my job 5 year ago due to this lovely condition...but hey judgemental some would say least your still alive.an on a bad day a would answer a could not care if i am or not.and on a good day i would say to anyone going through the same walk away just walk away for your own health if your just pissing in the wind get as far away from those involved and start again.while your still sane and relatively happy.

[Stimmy]

My fibromyalgia started after a viral infection (viral labyrinthitis- an inner ear infection). My head felt very heavy and then my generalized muscle aches started. 30 years later my body is very stiff and sore all over which causes me difficulty sleeping. I have found no medication that helps- Elavil helps me sleep better but I think it is causing my brain fog. Partial relief from my symptoms comes temporarily from aerobic exercise and yoga. Anyone else have these issues? Is Elavil causing you brain fog? Any help would be much appreciated.

[dJolinar]

There is more than one cause, just like 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. A chemical complex with copper which the body can perceive but cannot use, and I hypothesize the same with iron and there's even a slight chance that zinc or other zinc antagonist might be involved.

Cancer treatment and cytokine storms can cause fibromialgia, and here I read about injuries. So the 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, because low zinc usually means 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, allowing more zinc to be redirected to the immune system.)

Anyway . . .

Per Voltammetric determination of copper with proton pump inhibitor drug omeprazole, by three scientists in Cairo who were testing copper in water, and didn't think 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]

This complex keeps the body from maintaing a correct balance of usable copper in the body. Copper is necessary to move and use iron in the body, which is why iron cannot be maintained in the bodies of people with this kind of fibromyalgia, causing a constant iron deficiency and many of the symptoms. It can affect zinc balance as well.

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. Below is a link and citation to a peer-reviewed document showing a link between low iron and fibromyalgia.

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 piece 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 moles, gout, fatty lipomas, psoriasis, 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.

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 some types 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

ncbi.nlm.nih.gov/pmc/articl...

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

ncbi.nlm.nih.gov/pmc/articl...

Association between Serum Magnesium Levels and Depression in Stroke Patients

ncbi.nlm.nih.gov/pmc/articl...

Effect of magnesium on fibrin formation from lower molecular weight (LMW) fibrinogen

pubmed.ncbi.nlm.nih.gov/111...

---

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

-

Everything starts as anecdotal before it is studied, so anecdotal connection between fibromialgia and PPIs:

verywellhealth.com/anemia-f...

fibromyalgiaforums.org/comm...

Footnoted citation:

[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). doi.org/10.1134/S1061934815...

link.springer.com/article/1...