For me, it was addressing the root cause of the illness: heavy metal toxicity. I had 8 dental amalgams as well as a couple of root canals. I used to get vaxxed. I ate a lot of fish. I had some imaging with contrast dyes. Nowadays everyone is exposed to multiple heavy metals.
So once I had the amalgams safely removed that was a huge step forward I have been working on getting my body’s detox pathways to work right (liver, kidneys, and gut, for example, are how we do a lot of our detox) as well as boosting natural detox such as glutathione levels.
This has helped tremendously. It is taking some major time but I’ve been being poisoned for decades so not surprised to get the garbage out and to repair the damage is taking time and effort.
I am not “cured” but the fibro is nowhere near as bad as it had been. I do think it is part of why I still have major sleep issues. I fatigue way easier than I should. I DO have chronic pain—but it is not at the level it was. I am still never pain-free but I actually have hopes of getting there.
I saw pain specialists. I had strong pain meds. Only took the edge off. The McKenzie PT has been a real help. I get an “edge off” pain with arnica gel or Penetrex.
I believe it is crucial for fibro folks to stop eating processed foods, give up fake sugars. reduce real ones, eat fermented foods, and do other things that help the gut to improve. Doing that and much more has made this a presence in my life instead of the dominating force.
Going to keep getting better; there is a lot of room for improvement but my docs have been astonished I have come this far. My PT has been great. He told me many years ago I was in the sub-sub-(about ten times)-basement and needed to NOT PUSH myself as it kept leading to flares.
I still drop in on him and he is IMPRESSED. He still offers me tweaks to the routine AND works on me because I still have serious problems but I did not give up; it’s stopped progressing (and contrary to what is claimed, I found it most certainly DID progress and got worse.
Maybe technically it was the OTHER problems that DO come from it, but it got worse and worse without a doubt.) Infections, Lyme, mold, and more can also be caused or exacerbate the condition so it’s not just heavy metals and I had a lot of those factors so had to address those topics as well.
I don’t know what it takes to make a fibromyalgia diagnosis because I don’t trust science’s model to describe and assess what the phenomenon really is.
They do more harm when they label human beings with all kinds of “disorders”. Those assumed disorders become something that human beings wrongly identify with, later on in their lives, which render them unable to truly ever transcend their condition. Simply because they have grown to identify with it.
I also understand, on the other hand, that it is the best we can come up with in terms of organizing humanity efficiently. But in my opinion, it does not serve the individual anymore, really.
And yes, in my view – after observing and experiencing the phenomena quite closely – it is clear to me that fibromyalgia is indeed a throw-away diagnosis. But perhaps, for the medical field – not at all.
I have come to understand that science and the medical field alike, suffer from a disease called compartmentalization.
That is, the label and invent names for anything that has the slightest difference in symptomatology and thus create more confusion than not. Rendering them unable to see the forest for the trees anymore.
Fibromyalgia, Multiple Sclerosis, Rheumatoid Arthritis, Lupus, Lyme Disease, Crohn’s Disease, Huntington Disease, Duchenne muscular dystrophy syndrome, PTSD, Parkinson, Alzheimer, Guillain–Barré syndrome, Autism, ASD, AFM, all other muscle dystrophy diseases and disorders, and I can go on and on filling pages of pages with sophisticated names that describe even the most minute detail indifference, just to justify a new name.
They have lost their ways of being able to look at the human body as a holistic machine. Rendering them unable to see that all of those “disorders” come from a unified place in the body, but as each human body is unique and therefore different, those imbalances – by the time they come out onto the surface – they take a slightly different form in symptomatology.
You will notice that the common denominator for all of these “disorders” has to do with electrical( action-potential) imbalances within our nervous system coupled with autoimmune “activity” that arises and takes place within the body.
In other words, the byproduct of pain, spasms that we feel as a result, (but not only limited to) are a byproduct of locked action-potential electricity within our nervous system: either within the brain, extrapolated within the CNS ( Central Nervous System) – this is where we get the Alzheimer’s and Parkinson’s’ stuff, or within the somatic and peripheral nervous system that is dispersed all around and within the body – where we get the fibromyalgia, multiple sclerosis, etc. All of that ensues as a result of a change deepwithin thebody.
As a result of that change, other systems such as our immune system, “doesn’t” recognize that said change as a positive change: That is, a change that coming from within the body, and so it thinks that this “change” is a result of an alien attack if I can use that language.
And so, the immune system rises and attacks this change within the infrastructure. And what we get is the onset of the conditions associated with fibromyalgia and all other conditions stated above.
I started with 200 mg once a day. I increased it every other day until I got relief which for me was until I reached the maximum dose of 1600 mg every 24° period (i take 400 mg every 6°). Do not take if you are on an antidepressant without consulting your doctor. Also, avoid if you use sr. John’s wort.
It does much the same thing as SAM-e so don’t take it & SAM-e together without a doctor’s ok. Either or should apply to these 2 supplements. MSM comes in a variety of strengths. The maxi has seen recommended is 1000 mg every 8 hours. No more. I started at the lowest dose once a day, & increased gradually every 48° until I got relief. Again, avoid if you’re using st. John’s wort.
The warnings on these supplements above are because, to a lesser extent, they stimulate serotonin production. It’s very mild, but things like this add up. Often, a pharmacist will know more about them than a doctor, esp. if your doctor doesn’t hold with supplements.
Another Rx pain med that slightly increases the availability of serotonin in the body is Tramadol (Ultram). If you are ever given an Rx for this, make sure the doctor is aware if you are using any or all of those 3 medicines (SAM-e, MSM, & St. John’s Wort). The issue between MSM & SAM-e is also that they work by increasing the availability of sulfur in the body, but too high levels of sulfur are as bad. It may be worse than too low levels.
I have also found Boswellia Serrata to be of some help. 600 mg twice a day is the recommended max dose. It mostly helps with joint pain, which is common in fibro patients (I should know, I’ve had it since 1984).
When we were living in Scotland, a woman who owned a natural food store recommended nettle tea for joint pain. I found it quite helpful. I was very surprised to discover few people in the US thought it was used for joint pain; many here in the US use it only for respiratory illnesses, including COPD, & had no idea it was used for joint pain. I have used it when I had a respiratory illness, & found it helpful for both.
Also, these days, you can purchase 4% lidocaine topical lotion to rub into sore joints. Make sure you don’t strip the skin of its natural oils as that’s the medium through which it absorbs into the skin.
Another thing recommended is DMSO. You’ll usually find it in the veterinary section if you want the cheapest prices, & in states that don’t allow its sale for human use, you won’t see anything but veterinary formulations in any online store. It’s a very common chemical byproduct & nontoxic.
Don’t get a 99% solution, get something diluted & in gel form…. I’ve tried both & diluted 8n gel is more effective. The main issue is it can, for those with sensitive noses, smell like raw garlic…& it can leave a taste of garlic in your mouth – even though there is no common chemical I am aware of that DMSO shares with garlic. I find garlic difficult to deal with in food.
I am very sensitive & large amounts are a huge turn-off to me. If I want to stop myself from eating too much, that’s a heck of an appetite suppressant for me. It’s also not cool with cereal at breakfast…the taste of, say, honey nut Cheerios & garlic just so does not work…but I found it helped with sore joints regardless of the taste.
I have recently found a formulation where DMSO is listed as an inert ingredient, the main ingredients being menthol & camphor…so you smell like linament on a horse or Ben-Gay on an older person. The DMSO can’t be anything but a base ingredient in some areas…areas though have yet to see any mention of its harming anyone. Anyway, it helps but doesn’t take away all the pain. Nothing does.
As for antidepressants, pain & depression share many of the same pathways in the body, so antidepressants are used, with varying degrees of success, to help with the pain.
You must realize that this war on opioids & the false blame opioids receive for the overdose crisis means that we may all, if we’re on pain medication, be forced off it…& those newly diagnosed with pain syndromes like fibromyalgia may never see an Rx for pain medication.
I’ve seen tweets by people who have had major surgeries & their post-OP pain. Options are things like one, maybe 2, acetaminophen, extra strength (500 mg a pill), every 8 hours with 400 mg of ibuprofen every 6 hours for pain unrelieved by acetaminophen.
Most hospitals are so afraid of the DEA raiding them that they won’t prescribe opioids at all for any reason whatsoever. The VA has pulled all veterans off opioids altogether, resulting in a rash of suicides due to being unable to live with severe pain from war injuries.
I include in this WWII vets who had things like shrapnel buried in areas that precluded the removal of the shrapnel because of the risk of paralysis or even death. This is a jagged foreign object in the body, always tearing at something inside, often close to the spine or a major organ.
Many have been on opioids for decades with no, only a few, increases in dosage over that extensive time frame. What a way to reduce the number of VA patients! What a way to say thanks to the men who were sent from farms & small towns all over the US to make sure the menace of the Axis countries never reached our shores!
Many of these were called back up to active duty in Korea in the early 1950s, to yet another war. What a way to perpetuate the wrongs done to our Vietnam veterans, sent by conscription to fight an unpopular war & blamed for joining an army they didn’t ask to join but were forced to join.
If you want me to write more about this I can continue…
Unfortunately not only is Fibromyalgia comorbid with other conditions, but its symptoms can also mask other issues. There’s no definitive test as it doesn’t show up in blood work so it’s diagnosed by clinical evaluation.
When I was diagnosed with Fibromyalgia, I had been experiencing widespread pain (one of the symptoms/criteria) for years, but due to being a teenager, was told it was “growing pains”. It wasn’t. Other criteria they use are trigger points that, if pressed, cause intense pain.
I ‘scored’ on 14 out of 16 trigger points. The other common symptom is “fibro fog” where concentration is poor and cognition can be affected (especially during a flare–up).
I was relieved to finally have a diagnosis. I also have hypermobility which also causes pain, but a different kind of pain: fibro is more nerve pain and hypermobility is more joint pain (and frequent dislocations).
At the end of the day, you can see why people with certain conditions (such as Ehlers Danlos) refer to themselves as Zebras. Doctors are taught “when you hear hoofbeats, think horses, not zebras”. Aka, don’t go diagnosing ‘rare‘ conditions when it could be a simple thing. Except instead we get fobbed off, being told it’s just back pain and everyone gets that. Oh, you’re only young you’re probably still growing.
Yes, some doctors misdiagnose it. And yes that can have a negative effect on people who do have it. But two people with the same condition can have wildly different experiences. I don’t have to use any mobility aids (i.e. walking stick or wheelchair) but many people with fibro do.
That doesn’t make me not have fibromyalgia anymore or make me better than them. Because I might suffer more with the other fibro symptoms. Plus I have another condition which, when I have flare-ups of both conditions at the same time, can make it impossible to get out of bed.
I’m 18 years old, I don’t want to have these conditions but I will live with them. I had to fight for 7 years to get a diagnosis. I can’t remember what it’s like to wake up and not be in some sort of pain. That doesn’t mean I’ll sit back complacent. It means I’ll go to physio and look after myself because I’ve got (hopefully) another 70-odd year with these conditions at least.
Just think, if someone’s been fighting for doctors to recognize something is actually wrong with them for, in most cases, a decade (average time from onset of symptoms to diagnosis) then maybe once they have an answer that fits, they don’t want to fight anymore.
Besides, it’s not even doctors that diagnose fibro most of the time, it’s rheumatologists (in the UK anyway) who you have to be referred to, which can take up to 6 months in some cases.
Doctors: It’s a difficult condition to diagnose but saying doctors misdiagnose it can be harmful to people who genuinely have it and struggle with it every single day. Sure, it could be an indicator of something else but that’s down to the doctor’s not being informed. Or old school doctor’s thinking they know best.
I know people with Fibromyalgia who are on cocktails of painkillers so strong that they are dependent (not necessarily addicted although that happens too) and cannot come off them without massive withdrawal symptoms – because doctors just keep upping the dosage instead of trying something different.
Misdiagnosis is more often the doctor’s fault than anything else because it can only be diagnosed clinically rather than a definitive blood test.
That being said, blame culture in medicine is detrimental to all involved and should be avoided where possible.
My father drank heavily in the 1960s and both my parents smoked tobacco when I was conceived. As a child, I frequently had strep throat, bronchitis, and even pneumonia. Even at 2 two years old I remember being inside the incubator seeing the outline of my Mom and my uncle who came in to visit.
My teeth are stained from taking the antibiotic, Tetracycline as a young child. As I understand it this particular antibiotic is no longer given to young children because of the dental staining.
Additionally, I am a “DES Baby”. My Mom had 2 miscarriages before I was born. When my mother got pregnant with me, her OB doc prescribed DES in hopes that she might carry me to full term. Well, I’m here, but I only weighed 4lbs at birth. Back in the 1960s, preemie clothes were unheard of, so I wore baby doll clothes. Being small made me vulnerable.
As a child, I had unexplained aches and pains, migraines, sleep disorders, sensitivity to noise, light, and smells, emotional sensitivity, and restless legs. I thought I was different than other people. I still have these gremlins making life annoying sometimes.
My point is that I can look back and recognize symptoms I had growing up and into adulthood, middle age, and now at 53.
My theory is that one or more of those viruses I had, one or more antibiotics or cough/stomach meds or even a vaccine may have all contributed to fibromyalgia and its buddies. I think our food is filled with all kinds of processed ingredients that aren’t really natural, but rather artificial. The air we breathe is polluted and our water is something that has to be “treated” before it comes thru our faucets in our kitchen.
I believe stress in a developing child can get so extreme that it affects our nerves and the processes of our brains.
I can’t point to one single thing and know for sure if that particular thing caused my fibromyalgia but medical science still doesn’t know the cause. There are some very fundamental shared commonalities we seem to share.
You know this is the craziest thing I am going to talk about now…
I’m not sure what the percentage is, but I can tell you that I spent years taking Adderall for ADHD and then had to stop taking it when I got pregnant. During the hiatus from that medication, I was diagnosed with fibromyalgia.
After unsuccessful attempts at treating it with many of the same methods you mentioned, I decided that I was sick of being a test monkey and asked my doctor to put me back on the Adderall. This time around, not only did it manage my ADHD symptoms, but it also seemingly “cured” my fibro.
Being a stimulant medication, its purpose is to counteract the area of an ADHD patient’s brain that makes them feel restless and unfocused by “tricking” the brain into believing it has produced too much of its own stimulant, therefore making it produce the chemicals that calm.
While it still does this for me, it also cleared up the brain fog and mental sluggishness that accompanies fibro, but the best thing it’s done is make the pain tolerable so I can normally physically function. As you certainly know, with fibro, some days are worse than others, and it’s not as though this medication blocks the pain as an opiate does, rather, it keeps me so focused on the task at hand that it also distracts me from the pain.
Upon realizing this, I started doing things to help further lessen the background pain, such as yoga and taking daily vitamin B12 and folic acid supplements, as they support nerve health.
Adderall is not recognized as a pain management drug, and only a small handful of doctors currently acknowledge it as a treatment for fibromyalgia. It is a controlled substance with a high potential for abuse, so, doctors won’t prescribe it without a perfectly valid reason, and they usually require a clear EKG prior to prescribing because the stimulant property is sometimes hard on the heart muscle.
BUT, Adderall IS recognized as a treatment for chronic fatigue, so, if you approach your doctor after having utilized so many other medications unsuccessfully and specifically address the concern that the fatigue which accompanies your fibro is debilitating in nature, and you propose the idea of trying a stimulant, he or she may agree to prescribe it at a low dose on a trial run.
Be prepared, however, as it is a common practice for doctors to perform drug tests before and during treatment with a controlled substance to ensure a patient is not abusing it or any other drugs.
I’m certain this is a treatment that will not be appropriate for every person with fibro or other chronic pain disorders, but it has worked in this way for me and a decent handful of other people in our shoes. That being said, for how significantly my quality of life has improved, I firmly believe that it is a treatment that deserves consideration by doctors and sufferers alike.
Get your genes mapped. If you have either fibromyalgia or chronic fatigue it is probably most likely due to “Soft Tissue Calcification” which is caused by the body not excreting enough sulfur and phosphorus, which is caused by having genetic mutations like CBS 699 and SUOX mutations.
The treatment for these mutations right now is to eat a diet that is very low in sulfur and phosphorus and calcium and vitamin D because these will all lead to pain or chronicfatigue.
Also, it is important to supplement daily with a well-absorbed brand of magnesium citrate like Solgar magnesium citrate tablets, or CALM magnesium citrate powder by Natural Vitality that you dissolve in water and drink, or CALM magnesium citrate gummies that you just chew up.
Pick one of the three, depending on which would work best for you. They are all very well absorbed.
It is also very important to avoid vitamin D and calcium in both supplements and foods, so this also means to avoid multivitamins as they are all very high in calcium and vitamin D and only have unabsorbable magnesium in them (aka they usually contain magnesium oxide, which is only 4% bioavailable)
So ditch the D, calcium, and multi vibes, start taking magnesium citrate daily and avoid all foods high in sulfur, phosphorus, vitamin D, and calcium. And also avoid MSG and MSG chemicals like the plague.
Doing these things will help you to get rid of or lessen any fibromyalgia pain or chronic fatigue that you may have.
If you think I’m crazy, then all you have to do is try what I am saying for a couple of weeks (as it is not dangerous) and you should see your symptoms lessening.
And then to be absolutely sure, get your genes mapped to see if you have the CBS699 or SUOX (SUlfur OXidase) mutations.
See genetic genie dot org and 23andme dot com for more info. (It will cost about $250 to get this done or maybe less if 23andme is having a sale or if you buy more than one gene testing kit)
I had this done and it turns out that I have a lot of these mutations from both parents so my body cannot properly metabolize and excrete sulfur and phosphorus, and this causes excess sulfur and phosphorus in all my cells which causes both pain and fatigue in the cells and calcium and vitamin D make the pain worse.
So as long as I stay away from all foods high in sulfur and phosphorus and avoid calcium and vitamin D and all MSG chemicals, I am pain–free.
If I eat anything that is high in sulfur and phosphorus or high in calcium or vitamin D, I will get bad pain within half an hour of ingestion. Black pepper and foods high in oxalic acid will also cause pain, so I avoid those as well.
And I also avoid zinc supplements since zinc strengthens the glutamate response in the body.
At any rate, this is something for others to try and see if it works. It is cheap and easy and safe. And as they say, the proof is in the pudding.
I no longer have bad fibromyalgia pain and before, I had such bad pain that I couldn’t even sit down. So this just might work for others as well. I can’t be the only one with these mutations. And I know I’m not because both sides of my family carry them and have all sorts of medical issues.
I think a big part of it is that the medical profession doesn’t want to admit how much they still don’t know, both in terms of treating illness or even identifying it in the first place. There is a perception that we are so advanced with science, we have all these amazing tests and treatments now.
So if it doesn’t come up on a test, does it even exist? Or even if we do acknowledge it exists, if we can’t treat it then isn’t it easier to ignore it?
An example – I went to a rheumatologist for joint pain in my hands. After questioning me about other symptoms, he told me I definitely had fibromyalgia, no question about it. He then proceeded to give me no treatment or management options whatsoever and did not want me to come back for a follow-up appointment.
When I next went to my GP, I found out that he hadn’t even mentioned fibromyalgia in his report to her, just a bit of vague stuff about hypermobility. It was like, as soon as he realized I had fibromyalgia, he wanted nothing more to do with me or to even acknowledge my illness because it was inconvenient or embarrassing that he didn’t know what to do about it.
Then with the general public, I think you have two factors at work. Firstly, how are they meant to believe a person has an illness if it’s invisible to them and the medical profession won’t acknowledge it? If the person was really sick, surely it would show up on the fancy tests we have these days, right?
Secondly, there is a very powerful effect where people want to deny that bad things can randomly happen to innocent people. Because if they acknowledge that, they have to acknowledge it could just as easily happen to them. So either it is something the victim did wrong, or it doesn’t exist.
You see this all the time, a person gets a life-threatening disease or has something terrible happen, everyone will say how sad and tragic it is but then immediately start looking for what the person did ‘wrong’ that they don’t/would not do. Eg.
people who get sick didn’t eat organic enough, take the right vitamins, think positive enough
any parent who has something bad happen to their child is negligent, because everyone knows the job of a parent is to never let their child out of their sight for even a second, 24 hours a day until they turn 18.
Given this tendency, what is easier for people to believe? That there are mysterious diseases out there that strike people down for no reason we can determine, for which there is no agreed treatment and that you could be next? Or that people are faking it for welfare benefit and/or have psychological problems?
I saw an answer from a physician, but mine comes from personal experience from fibro (8 years and counting). It’s not a simple answer, unfortunately.
Fibromyalgia, for me, is a reactive condition. What that means for me is that I have a constant level of pain that is my day-to-day pain level. It’s usually somewhere about a 4 or a 5. If it’s a little lower, that’s a fantastic day, but I can survive with a 4 or a 5. However, when I hit certain triggers, that pain level spikes up.
My biggest spike at the moment is stress – I have quite a stressful job – and it will trigger my fibromyalgia and cause it to flare. This may mean that my pain level shoots up to a 7 or an 8 or even a 9. I usually lose my weekends to self-care and recovery, to try to get back to my 4 or 5 levels.
My other trigger is over-exertion, which unfortunately at the moment, is pretty much any sustained activity for over 30 minutes. The physical effort pushes me into a flare. These again are probably about the 7 or 8 levels.
In pain, I’ll notice that my blood pressure and heart rate rise and my resting heart rate will be at least 10 bpm higher than it usually is. My BP will be on the worryingly high side. I can take my painkillers, and rest and relax as much as I can, but I have difficulty doing things like holding my body upright, and everything takes so much more effort.
I also get more emotional during flares because I’m beating myself up for being useless, relying on my partner for everything including helping me to take off my bra. Pain has an effect on the body that people don’t appreciate until they experience it and it goes away. It’s tiring. It’s depressing.
It’s horrible. And because of that, it’s easier to overexert yourself because you have less energy to do the things you would regularly do, which puts you in a flare, which further depresses you… It’s a vicious circle.
I wish that there were more research on fibromyalgia, on the cause and treatments that aren’t huge doses of painkillers. I wish that the opioid epidemic wasn’t making it difficult for people who have a genuine need to get their medications. But it all adds up, unfortunately.
There are theories out there – and I’m basing this on some “opinions” that I’ve had from medical and alternate therapy practitioners, so your mileage may vary – to say that fibromyalgia is a reaction to trauma at some point in your life; physical or psychological.
I once attended a lecture where a woman claimed that it traced back in her life to her parent’s divorce at age 4 and the excessive shouting that took place then. I got told that it’s my body locking up and locking me in, and the only way to combat it was to spend £75 a week for a professional massage, by a doctor whose wife was a professional masseuse and would I like a card and a referral? I’ve been told it just happens.
I don’t have a truth to share on that. I don’t recall a specific trigger for myself. I know that the diagnostic pressure points have always hurt. I remember being surprised when I was told that normally, they don’t hurt people – it’s just pressure for normal people. It’s never been that way for me. I don’t remember a time when I wasn’t in some sort of pain, but it definitely got worse after the age of 25.
I thought I was broken until I got my diagnosis, but when we moved surgeries, I lost the doctor who was actively helping me to deal with it and started having to fight for my condition to be recognized and treated.
I have so far found one medication that helps, but my last doctor would not prescribe it because one of the side effects was weight gain. Lady, I’m already fat, but my fat a$$ can’t do anything about it if I cannot move because I am in levels of pain that you’ve never had to deal with.
So, for fibromyalgia, we live, we survive, we rest, we fight and we do what we can in a body that seems some days to actually hate us.
I am ridiculously picky about my clothes, since mild to moderate Allodynia is one of my Fibromyalgia symptoms. No sleeves of any fabric, soft fleece if I need a jacket. No bra. Between allodynia and costochondritis?
Let them tiddies sag. I like breathing with less pain and not getting rashes. Screw the rules. No wool, cashmere, or other animal fibers. When they are cut, they often have sharp bits. And I’m allergic to wool, soo…
Poly/cotton blends are my go-to. When I was healthy, I tried to wear only cotton, linen, hemp, or the like. But now a blend is the best I can do. That said, each and every item has to be assessed individually. Tags, seams, tight elastics are all bad.
Frightening fashion that it is, rayon is cool, smooth, and usually comfortable. Seams can sometimes be reinforced with plastic thread, though, so watch for that. I buy 90% of my clothes second-hand. They’re cheap, pre-shrunk, and already “broke in”
Never wear new clothes without washing. Chemicals used in the dyes and cleaners are often irritants. I am “fortunate” that my allodynia usually manifests as intense itching. Cool temps help me the most.
Shoes are the minions of satan, and I refer to them as foot prisons. NOTHING helps. I wear sandals year-round and when sneakers or trainers are required, I wear one brand.
