Despite much evidence to contrary, the question still keeps being asked: “Is fibromyalgia real?” (Image by Anemone123 from Pixabay)
Doctors sloughing you off? Friends don’t understand what you’re dealing with? Studies finding problems with the pain producing parts of the central nervous system in fibromyalgia (FM) date back well over ten years. They indicate that FM is a biological disease, yet the questions about how real or serious it is still persist in parts of the medical community and the public.
The fact that so many websites still feel compelled to emphasize that yes, fibromyalgia actually is a real condition indicate that the FM field itself and people with this disease still, at times, struggle against outmoded stereotypes.
In its very title, a 2016 scientific Journal article, “Not the Last Word: Fibromyalgia is Real“, made it clear the controversy over FM in the scientific community lingered. In 2017, Medical News Today asserted that the #1 FM myth in the public arena was that somehow it’s not real. The Cleveland Clinic gave its take on the fibromyalgia reality question that year, as well, and just last year, VeryWell Health felt compelled to once again ask: “Is Fibromyalgia Real?“.
It’s frustrating to have to battle ignorance as well as a difficult disease. To help out with that, here are ten reasons, all based on scientific studies, which you can use to convince skeptics in your circle (including your doctor) that FM is not only a real disease but a serious one to boot.
#1. Very Painful!
The third myth that Medical News Today pointed out was that “the pain (in FM) is minimal and does not affect daily life”.
Oh contraire. Studies indicate that fibromyalgia is actually one of the more painful diseases there are. A large North American study which contrasted the pain levels in juvenile FM patients with those of young people with other rheumatic diseases found it was no contest: pain levels were significantly higher, and functioning and well-being levels were significantly lower in the kids with FM.
One person described feeling as if her body had been roasted by a blowtorch.
One website that cites seven distinct kinds of pain found in FM indicates what a pain artist the disease is. It’s not easy, after all, for a single disease to produce seven distinct kinds of pain, but if you really want to know about pain, you have to go to FM patients themselves. Check out some of their descriptions of pain:
- “blood vessels feel like they’re on fire”
- “It feels as if someone is blowing up a balloon in my head and it’s about to explode”
- “pain that’s like fire ants are swarming through my veins and biting, along the way spreading their venom and pure burning inflammation”
- “I feel as if I have been thrown off the Empire State Building with resulting crushed bones and then had my entire body roasted by a blowtorch and then submerged in subarctic water”
- “someone spread finely crushed glass into all my muscles (and then I moved)”
- “it feels like an army of thugs is belting me continuously with baseball bats”
- “like little bugs are taking little tiny bites into my nerves and muscle fibers”.
From “In Their Own Words: Chronic Fatigue Syndrome and Fibromyalgia Patients Describe Their Symptoms“.
That sounds pretty real to me. It’s just the beginning of the story, though.
#2. Central Sensitization Disorder Means Widespread Pain and Trouble
Fibromyalgia has been called the prototypical central sensitization disorder, but what does that mean? It turns out that it means a lot of trouble. The fact that major pain-producing pathways in the nervous system have gone on hyper-alert means the pain for FM patients isn’t confined to their hand or their arm or their leg – it’s widespread. In fact, the 2010 criteria for FM require that people with FM experience widespread pain. The pain pathways in the spinal cords and brains of FM patients can become so hypersensitive to stimuli that even a touch, a bright light, or an innocuous odor can produce pain.
The two neurotransmitters involved in producing pain – glutamate and substance P – have been found overexpressed in FM. It’s no surprise, then, that the MRI studies find the pain processing centers of the brain are activated more quickly than usual. The pain nerves leading to the spinal cord are so twitchy that they’re ready to turn on given the slightest stimuli. Pair that with something called “windup” which occurs when nerves get wound up and then stay wound up and you have a recipe for a real pain problem.
All in all, it’s hard to find parts of the pain production process in fibromyalgia that aren’t messed up.
Unfortunately, it’s not just pain that’s widespread…
#3. Widespread Symptoms Mean Trouble Virtually Everywhere
Interrupted and unrefreshing sleep is also common in FM.
Pain is the just beginning of the many issues that people with FM typically face. FM also produces high rates of fatigue and problems with sleep and cognition. While the physical manifestations of the disease outweigh the psychological ones, depression, and anxiety are not surprisingly common outcomes as well.
So, besides experiencing widespread pain, a typical person with FM feels sleep-deprived, fatigued, experiences difficulty thinking, and may be dealing with depression or anxiety. Still, think FM is a nothing disease?
#4. Quality of Life Often Severely Impacted
Studies indicate that even by the standards of the medical profession, people with FM are having a tough time. A review of dozens of studies found that FM had a similar or greater impact on both the physical and mental health of people with FM, when compared to people with rheumatoid arthritis, osteoarthritis, osteoporosis, systemic lupus erythematosus, myofascial pain syndrome, primary Sjögren’s syndrome, and others.
Another study found lower health-related quality of life scores in FM than in people with rheumatoid arthritis and spondyloarthritis, and a 2018 study found that fibromyalgia impacts a person’s quality of life as severely as does multiple sclerosis. That paper stated: “FM is a disorder that ‘in itself’ can have a devastating impact on an individual’s life.”
If you haven’t gotten by now that FM is a real and serious disease, I don’t know what it’s going to take, but there’s more.
#5. Fibromyalgia Can Be Quite Disabling
FM affects many parts of the body.
It’s difficult to understand how a “fake” disease could produce disability. A bit of fatigue, some discomfort, worry, and anxiety – yes – but high rates of unemployment and/or disability? No.
Fibromyalgia does, though. A 325-person study found that over 50% of FM patients were either on sick leave or not working and that 23% had some degree of permanent work disability pension. In a study of the costs of chronic pain in the European Union, FM was found to produce the highest unemployment rate the most disability claims, and the most days absent from work of any pain condition.
That’s pretty bad, but we’re not done yet. It turns out that FM is a challenging disease to treat as well.
#6. Not Easy To Treat
If a treatment works, you’re going to keep taking it, right? The fact that three FDA-approved drugs for fibromyalgia exist might seem like a cause for celebration, but no one should think FM patients are now on easy street. Far from it.
The truth is that the drugs approved for FM work well in only a relatively small subset of patients. A large year-long Israeli study (n=@4,000 patients) found that less than 30% of people with FM filled their prescriptions twice and less than 10% were described as very adherent. In a survey, less than half of Canadian rheumatologists agreed that any of the current treatments for FM were effective.
While treatment programs can certainly help fibromyalgia patients, their outcomes tend to be modest. One recent review, “What You Can Do for Your Fibromyalgia Patient“, advocated a “multifaceted, long-term strategy” that was focused not on relieving pain but on simply making a person with FM more functional.
High rates of widespread pain, hypersensitivity to stimuli, fatigue, sleep, and cognition problems, low quality of life, often disabling, difficult to treat: how much worse could it get? How about a tendency to come down with other diseases?
#7. High Comorbid Disease Rate
People with fibromyalgia often have a host of other diseases as well.
It turns out that because FM likes to cluster with other diseases, people with FM often face other health problems as well. Check out the long (but probably not complete) list of other diseases that FM patients have an increased risk of picking up somewhere along the line.
They include chronic fatigue syndrome, migraines and headaches, irritable bowel syndrome, temporomandibular joint syndrome, adult attention deficit hyperactivity disorder (ADHD), vulvodynia, and interstitial cystitis.
#8. Fibromyalgia Makes Other Diseases Worse
Then there’s the flip side of the coin: people with chronic pain conditions have an increased risk of coming down with fibromyalgia. That’s called “secondary fibromyalgia” and when that happens – watch out!
One large study of people with rheumatic disorders found that having FM as well as another rheumatic disorders “had a remarkable impact on the severity of symptoms“. The impact was so large that the authors reported that FM essentially took over, with FM now becoming the patients’ main concern.
The same pattern generally held true even for migraine. Migraine patients with FM had worse headaches, suffered from more disability, had more problems with depression, and and increased risk of suicide compared than people with migraine only.
The economic impact appears to be equally large with the medical costs of rheumatoid arthritis patients with FM nearly double (@ $19,000/year) that of RA patients without FM (@ $10,000/year) – and that brings up another challenge – economics.
#9. High Economic Costs
Given that fibromyalgia is believed to affect from 4-10 million people in the U.S., the economic costs it imposes are, not surprisingly, large.
One review, “The Iceberg Nature of Fibromyalgia Burden: The Clinical and Economic Aspects”, reports that the clinical and economic costs of FM are comparable to such major and well-known diseases as diabetes, hypertension and osteoarthritis. It states that the mean annual direct medical costs of FM range from US $2,274 to $9,573 or more. That doesn’t include costs due to lost productivity and disability which could be 3-4x’s higher.
#10. Ignorant Doctors Make Everything Worse
We’ve established that FM is a bear of a disease, but what makes everything worse, and what can make every visit to the doctor like tiptoeing through a minefield, are doctors who don’t get it, and don’t want to hear about it.
Good and caring doctors are certainly out there, but rheumatologists, in particular, are notorious for their aversion to treating fibromyalgia patients. A recent Canadian survey indicated that many doctors don’t even know how to diagnose FM.
“In general, the results are unsurprising and reflect the lack of knowledge about this common pain condition. Many patients who are referred to me with chronic pain problems are wrongly diagnosed with fibromyalgia or are wrongly diagnosed as not having fibromyalgia.”
Another stated:
“I think most physicians are aware of fibromyalgia, although many still don’t believe in it and communicate this [lack of belief] to their patients.
A survey of Canadian rheumatologists found that 30% believed FM was a psychosocial – not a medical – condition, and only 27% believed FM could get so bad as to stop someone from working. Despite the fact that FM falls under their specialty, half of them stated they would refuse consultations with FM patients. Given that most rheumatologists apparently threw the survey in the trash (42% response rate), this was probably a significant undercount.
Conclusion
By all markers – symptom severity, the multiple symptoms the disease produces, quality of life measures, disability, its many comorbid diseases, economic impact, etc. – fibromyalgia is clearly a real and serious disorder that has the ability to impact virtually every area of one’s life.
Many doctors, unfortunately, choose to ignore the evidence before them. It’s not just doctors, however. Everyone – patients, doctors, and researchers – would be helped by a better understanding of this disease. Unfortunately, the largest medical funder in the world, the National Institutes of Health, apparently doesn’t believe FM is a serious disorder either: it spends about $17 million a year on FM research – or just under $2 per patient – one of the lost funding ratios of any disease.
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This article looks like 10 ways that fibromyalgia is a serious problem. BUT . . . I have met lots of doctors who would push away every one of those, and still deny it “exists.”
Which one(s) of those do you think might work to *prove” something to a doctor who is opposed to the very idea?
The real hope would be that a dive deep into the research literature that demonstrate the biological abnormalities found would work. At least, then, they will hopefully agree that it’s real. Whether they will agree to treat it or not is another story. If that doesn’t work I don’t know what would. I could try a blog which focuses only on those research findings.
People everywhere have blinders, of course. Unfortunately, some cannot be reached. I would hope that younger doctors would be more receptive.
I’m thankful that my GP and neurologist both work with me on my fibromyalgia. It is other people on my life that don’t get it. I have been pushing through a flare for over a month. The pain is unbearable. This is the first time that I have really been depressed through the whole flare. The medicine is not touching the pain. It is the first time I have really wanted to be declared disabled, but then I would lose my home. I appreciate this article . It has helped me see that I am not the only one who experiences all of these symptoms.
I printed out info on fibro and gave it to doctors. Finally hit on a doctor who actually knew a lot about it and treated others who have it.
Doctors like to see things like abnormal test results for evidence that something is wrong with the patient. After seeing at least at dozen neurologists to discuss pain/autonomic symptoms, I finally went to see a new one the other day. He ordered a small nerve fiber biopsy which I had a couple of days ago. He believes in FM because approximately 40% (or more) patients have small fiber neuropathy, something that he and other doctors can see on test results. So far all of my lab tests that he ordered (antibody type tests for the nervous system) have come back negative – except for thyroid antibodies. I think doctors lose interest in us (FM/ME) patients if they can’t see abnormalities on test results.
My doctor says re looking for a black/white situation with negative test results to support a diagnosis of CFS/ME/fibromyalgia is where many doctors generally go wrong. The test results to support a diagnosis are usually there but too many doctors don’t know how to read them properly.
Everything changed for me when I was diagnosed with peripheral neuropathy, @5 years into illness onset. I was finally able to get treatment at a pain clinic, which includes prescriptions for methadone and medical marijuana. I keep getting worse anyway, and am now diagnosed with dysautonomia. This has earned me the care of top-notch neurologists who believe in my CFS and FMS but will not use these terms in my medical records. One told me she finds them “unscientific” and not adequately specific. With these doctors, I’ve been able to try IVIg, IV ketamine, and pulse steroids. So far nothing’s worked. But I do get the satisfaction of knowing they’re turning over every stone for me. If there’s a lesson in this, I’m too beat to articulate it—you know, because I have chronic fatigue…
Have you tried Mestinon Laura? Or Ivabradine?
https://www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/
I agree that most doctors don’t know how to deal with patients with FM. I’ve been suffering with it since 2013 but may be earlier as much as 2010/11. I struggle every day, many times thinking of death but my son & grandchildren gives me strength. I am in pain or let’s say feel pain 80% of the time. Restless nights, wake up feeling as if someone beat me with a bat. I struggle to survive every day. Focus is difficult but I try. I have been taking Tramadol for past 8 yrs. Flair ups are the worst times, I don’t have full cognition or brain fog, concentration and focus is difficult. I pray that something happens to help suffers of this debilitating disease, we are dying inside and no one knows.
This story is one of the best I have read. I have had chronic pain for 30 years and it was just last year that I was diagnosed, and only because my doctor was on maternity leave, and her replacement said you sound just like my mother who has fibromyalgia. To have a diagnosis after all these years made me cry and realize I am not crazy. It is a terrible diagnosis but one you have to research on your own. I never knew people suffered with pain, you have a headache you take a Tylenol, but this pain is so much more, it drains you of energy and takes your life away. A doctor once said to me it could be worse you could be diabetic and need to take a needle everyday, Well I would gladly take a needle a day of it took away the pain. Thanks for the information I will keep it handy to read once inawhile.
I’ve had fibromyalgia for over 30 years I have IBS and bladder issues as well, I started taking BHT in October to see if it would help as I had read somewhere that it might, I didn’t think it was making that big of a difference until stopped taking it. One week later and I’m in terrible pain again. Does anyone have any information as to if it’s ok to keep taking or not? I’m new here and I’m frustrated with the lack of help it seems for BHT. I will not take regular drugs that are offered to me. I try very hard to care for myself and usually only use natural things, but when this helped me so much and my husband through shingles in 2 weeks I knew I had to investigate! Thank you
Cort, “Anonymous” made a good point. I find that NO ONE in my area wants to treat Fibromyalgia PAIN. They say “opioids are bad” so the most they will offer are injections. Injections might last…2wks to 2 months max.
originally I was told I had carple tunnel syndrome. in 1992. had surgery on my hand and sent back to work. but the pain did not go away. only got worse. finally had to won’t my job. was sent to school to get retrained. doctors tried a variety or pills and shots and other treatments. I was still getting worse. finally told I had cfs and cms. still tried to got to school but concentrati was getting worse. asked help from the school. they refused citing would be hardship on teachers. finally kicked out cause I was not passing. would not let me go back unless I was passing again. had borrowed money cause workers comp stop helping me. still a big problem now
Or just tell them to call Mayo AZ. I had two doctors try to convince me that my pain and all the issues that go with it were indeed FMS. At the time, I didn’t believe in it. Felt they were missing something. But they were convinced they had it right. And spent over 30 minutes trying to convince me. And that was 12 years ago. So they DO believe in it as a real condition that they will diagnose.
It was also very nice that the Mayo PT person, they sent me to, was also aware of FMS and his advice was much less aggressive than what it would had been otherwise. I was/am deconditioned. But what caused what? His best advice was to swim. And with my having POTS and that being not only compression from the water, but vertical…..was a great thing for me.
He also RX medicine that turned out to be the best thing for my POTS and took the edge off pain. (I seldom take those now. PEA being almost as good to help for the pain. And if you get lutolin to go with it, both help MCAS. But, does cause a bit more brain fog.)
I did however also get diagnosed with EDS and I’m not sure where one ends and the other starts as they both cause considerable pain.
I also very strongly believe MCAS plays a huge role in FMS pain.
I might add that Ehlers-Danlos is also one of those co-morbidities associated with fibromyalgia–or fibromyalgia is associated with EDS! Some studies have said that up to 50% of EDSers have small fiber neuropathy and I’m sure some large subset of those with fibromyalgia do as well.
@ Francis, I agree, but how does one justify injections all over one’s entire body!!!? Anyway, steroids break down tissue and are really only a very last resort treatment for a specific pain area.
Too bad that the meds used to treat fibromyalgia have so many side effects and that taking the meds is often just trading one set of symptoms for another–and a not very effective treatment at that!
So here I sit in quarantine, waiting for some sort of antibody test as I suspect I have already contracted and recovered from Covid. Frustrating! As far as body wide pain, I am noticing mine has steadily increased from sitting around indoors all day, but mine is myopathic from EDS. I’m also more fatigued than usual and also think it might be from my suspected Covid infection–which makes it a whole new avenue for ME/CFS research!
Whatever is going on, I wish everybody some kind of nice holiday and to stay safe and well!
Alexendra do you have muscle weakness because I have severe muscle weakness no stiffness no cramp just like paralyzed nerve without much pain even though I can walk 8 km daily. But they get weak day by day. Weak palpitations everywhere.
Speak for yourself about the opioid pain medications not being very effective or causing more problems than helping. I was using fentynal and Norco for years and they were what allowed me to live. I was in an electric wheelchair and after I got a decent doctor who didn’t just up on finding a pain medication that worked for me I started being able to go to aqua therapy and after a few years of hard work I was able to walk again and continue aqua therapy right up until the doctors all stopped treating pain and threw all of us who have overwhelming pain under the bus. As I was force tapered off my pain medicine multiple times by outrageous amounts and was sent into withdrawal from the physical dependence to the pain medication. It not only left me suicidal from the increasing pain and not being able to get out of bed again but I then developed 2 more autoimmune diseases to add to the ones I already have along with the fibromyalgia. Unless you have a serious pain problem I don’t suppose that needing to take laxatives to help you poop properly seems like a very poor trade off. As for myself and the millions of other people who have chronic pain and can’t function without them I’d rather stick with a laxative than be bedridden for the rest of my short miserable life and make no mistake about it this will shorten my life on top of destroying any quality because while I’m writhing in pain and being tortured because of ignorance and fear of the only medication that millions rely on my blood pressure shots up so high that I am in danger from stroke, heart attack and kidney damage and the endocrine system is not able to handle this type of ongoing stress! They started taking morphine into the battle field to give to wounded soldiers and their survival rates improved because they stopped dying from shock by reducing their pain levels! So do not be fooled into thinking that just because you don’t have serious pain that needs to be controlled with pain medications that there aren’t a lot of people in this country committing suicide to control their pain! 2 people just committed suicide because they were unfortunately seeing a doctor who had his life turned upside down by the ignorance of the terrorist organization that we call the DEA. They didn’t charge him with any crime but took his license and killed his patients who were supposed to have their prescription refill but couldn’t bear the overwhelming amount of pain any longer! They are doing research into the numbers of people killed by this government’s torture of chronic pain patients whose suffering became so great that their only option was to end their lives!
Hello I have FM (without the Syndrom) after a meningitis with 3 (this was 1976) they found out what it is 2012. But with fortune I have a good pain doc and a “housedoc” (sorry bad english) and we found a good “crutch” Ibuprofen with Oxycodon and Dronabinol (as drops) it brings my pain back to 3 and make my muscles a little bit softer so I have “Muscle Spasm” only 3 times a week and not 6 times a day Cramps in the soles of the feet are the worst.
a few years ago my “Mr F” become a friend named “Mr ME” so from last year on I have to say byby to potatos, nudles and all meals with a loot of “energyexpensive using”. So I found out that milk and all from then and flesh (best duck and turkey) are better (ok I can drink 3 lilter milke a day “thanks dna”) but it feels better, if I eat “healty stuff” like a peace of bread I loose power in minutes (its very hard , I love potatos and all kind of vegetables) so I startet my ” goodies backery” and made 8 nuts cubes with a little bit of oats, butter and honey. and so 3 gives inough power for 2 hours (and this is the limit I can stay one or two time a day). Today I sleep 18 to 21 hours (and yeas sleep I need 10 minutex max. to fell asleep so I have no problems with this but there is only a “no rem” sleep. Like I fall down if I go to bed and wake up 2 hours ago (can’t lay longer because more and the new energy is “go away”) like they give me another Kick down. But for all old and new Peoples with Fm don’t call them self FMS because FMS is a psychic chronic pain with Fibro like symptoms. FM is a body agonized illness with killing the small nerves, making the mitochondria crazy and more. (At this point a Muscle biopsy can only bring real results if there are 18 ore more testpoints because yes FM kills the small nerves but there are millions and millions in your body. After more then 40 years 80 % of my small nerves are dead or “on the way”. Wuerzburg / Germany (the uni which found out that the small nerves are go down at FM) sayes that the biopsy test in Fibro is a torture and the chance to find the perfect Part for it to found dead nerves is very small,so in Germany this is no option to found out some had FM or not.
On the End I have a great live with 2 wonderfull kids (today adult) a great husband (the 3.) and friends (in RL and Online) and fun. My grand aunt ever say it is on me to find out what is good and what bad and so I live (till I found my pain doc I have a 24/7 painlevel of 8 till my family ssayed enpugh is enough and heureka (I found a good doc and the best is I found it after I leave the town, move to another (a small village , near a very big wood called franconian jura, very beautyfull) and the nexet surprice the family Doc here is a country doc and he knows about FM and is is ready to learn something about it and about other things he doesn’t know. So I wish all a good laughing it’s important and believe yourselfe. My pain doc sayed to me ” you have to tell me about your pain because it is your pain and not mine, so I can try to help but never I can say your pain is so and so”.
And don’t think you can there are more ways then highways , like footpath and more and if some sayed they don’t believe, maybe its better to save your power and search for other friends (I play online games like ESO in a gilde without voice so I have peoples around me , and then know that I have every time not so long time.And it is ok. Think on which way you can save power (stop talking with ” FM is no Illness” people, because it is your power so use it for you and the one you love)
At this stay cool , stay laughing and if you lay have a soft sleep.
Dear people,
I am trying to describe shortly (yet not succeded) the point of this treatment article. (See end). Everyone knows hydrocortisone (HC) helps with lots of illnesses where there is pain=inflammation whether it can be proved or not.
In our kind of illnesses (FM or CFS or ME or ME/CFS or other “unproved” pain syndromes with all the rest of symptoms),
going untreated for years can mean untreated inflammation maybe autoimmune that has been shown to lead to malignancies and other bad luck.
Chronic HC treatment (as we know of) on the other hand is known to almost with certainty lead to chronic adrenal insufficiency and immunodeficiency.
This article is promising that no suppression of adrenals or immune system will come if dosed this way with HC-Holidays. Really?
Self administered sufficient dose hydrocortisone “when needed” is determined before the long period of treatment, by an initial three week trial period with higher doses and a lowering of these doses each of these weeks. If needed more week(s) of trial period are added. After this initial period the individual low dose treatment period commences where treatment is selfadministered only when a flare of illness is anticipated.
(Not sure of the next bit because article is lacking the details which I guess you can request as a doctor(?). Also the dosing by each patient from the different illness categories is not shown, not even an average if that would be possible to determine and mean anything. In fact, I am not sure they treat whithout any laboratory test proof but the FM and CFS and so on other patients in this study article do not seem to have such proof).
This individually low dose HC, based on need is stopped when you “feel the flare is over” and the “HC-holiday” commences. HC is administered again when the patient feels a flare is coming. And so on.
Patients who find this difficult
can use the formula 5 days with individual HC dosing and 2 days HC-Holiday each week.
This way these treated flares were generally occcuring 3-4 times a month.
The point is that instead of proving that indication for a HC treatment exists by laboratory tests they mean that treatment with HC IS INDICATED IF THE ILLNESS IS RESPONDING TO HC. Because responding to HC means there was inflammation.
THAT SIMPLE.
It just sounds too good to be true that just dosing on how I feel (don’t forget initial high dose treatment) with appropriate HC-holidays in between could do the trick indefinitely whithout a backlash of suppression?
I have been dosing (with the help of complementary medicine doctors risking their licence because “I have no indication for HC treatment”) 5 mg of HC every other day since 2010 after a “trial period” of raising slowly to 25 mg, keeping at 17.5mg for a month and then tapering down for a month back to 5 mg (every other day) roughly according to Dr Rind(?) (I may be mistaken on who’s “recipe” this was years back). The best effect was at 17.5 mg which others with supposed CFS/ME have also noted.
Here, still, there is no indication for HC treatment even If you should get a ME diagnosis. (I have not yet, because I still suspect also other illnesses.)
But I may now be facing immunosuppression and cortisol deficiency according to how I feel but it may also be that I just need a higher dose.
Can they really tell, the endos with such meagre arsenal of an oldfashioned testing capacity that is supposed to “fit all” if I need HC or not and what way do I need it. It is so easy for them to say “you should taper and stop”.
I will see as of next if it IS possible to
differentiate:
a suppressed body (=HPA SYSTEM) in need of ceasing with HC in the appropriate way –
– from a body (HPA SYSTEM) in fact, because of illness, in need of continuing HC in the best way of dosing.
But what I am sure of is that the endo’s I know of here will not and are not allowed to even breathe the words “HC treatment” without a laboratory proven indication. There are though according to several studies 2019 doctors who acknowledge and treat with cortisone an atypical PMR with normal esr/crp. And also there are as you say doctors who mean they can prove FM with muscle samples or maybe other tests now.
But with my every other day treatment I get 50 % of holidays per month but
they in this article get only roughly 30 % holidays with the 5:2 method?
And the article does not show if the patients are looking at life long treatment with the same formula (of cource it is individual) or if they are supposed to try longer Holidays eventually; or if they really mean lifelong treatment according to same formula and there will be no resulting supression nowhere.
What am I missing here?(given I truly am looking at a HC induced adrenal insufficiency because I never had any “real illness” it was “only just a temporary medicine induced adrenal insufficiency that should not have been treated with every other day dosing since 2010”). That it could have been tapered away long ago….(I have not felt as if that was ever possible.)
Is it maybe just that every -other -day dosing does only give a one day holiday and 5:2 dosing gives one more day holiday EACH TIME.
IS THAT THE SNATCH?
Dear like me sick people:
What do you think of this HC article by the always well meaning Rheuma doctors (IF I have got the article right..):
2019: by Irwin et al
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581742/#__ffn_sectitle
Older article by Clear et al 1999:
https://www.ncbi.nlm.nih.gov/pubmed/9989716
All the best!
Great article! Thank you so much for expressing what those of us who suffer from this horrible illness already know and have to live with on a daily basis…
I am 67 with FM, ME/CFS, RA, degenerative disc disease (and a bunch of other back problems) and osteoporosis. Many years ago I gave up on my family (other than my mother when she was alive) understanding anything about me. Not one member of my family has ever discussed FM with me (and yes, I’ve tried) or even brought up the word FM or asked me how my FM is going. They’ve asked “how are you doing?,” but that’s the extent. If I had a family member with these horrible diseases I would be all over trying to help in some way. My mother was so understanding, but because I have suffered severe depression and anxiety in the past, I know my family chalks up my problems to mental issues only. I just have to live with it. It’s hard and I know it has made me complain more than I would if someone would just say, “I understand that you have problems.” I’ve been forced-tapered off of oxycodone so the family has labeled me a drug addict. I never took more of my pain meds than I should have and never took them early. I didn’t need to — they worked for me! I don’t even think my current doctor knows I have FM. When the COVID-19 pandemic started she told me it was all media hype. I have lost a lot of respect for her. Best wishes to all my fellow FMers.
If there is so many prove that FM -and aslo ME- is a real disease why is it still not accepted then?
Doctors see many variations of the condition and many disagree with diagnostics – they know people suffer with the illness but some do think it is psychogenic (or a form of anxiety/depression). Some believe that patients exaggerate.
there are many problems with “believing” in F.M. disbelief is often reinforced by clinical variation and changing reports from the patient about their illness.
Diagnosis
lack of clinical biomarkers and objective signs – this is true but if one is aware of current research it is obvious that the condition has biomarkers eg
not knowing the current research biomarkers (Or believing that the research markers are just associations, or consequences of anxiety)
eg not knowing that FM is consistent with auto-immune attack of nociceptors and FM symptoms are cyclical. Neuroimmune data including glial cell activation. With an absence of clinical markers the lack of knowledge tends to be filled with opinions.
Symptoms:
symptom variability: symptoms vary considerably partly because FM overlaps with ME/CFS and some people report as much fatigue as pain. Common symptoms are also present in other disorders often thought of as psychological or as a result of anxiety, such as irritable colon, virtigo, heat sensitivity.
Pain as the defining symptom which leads to a complete misunderstanding of the condition and diminutive opinions. This also leads to a lack of research because pain is “treated” with analgesics – leading to an opinion that the illness must be a “managed” one. In addition there are a lot of myths about pain control, eg. it can be significantly reduced using cognitive and attention shifting techniques.
Pain as a central sensitization and this is the cardinal pathology of the condition. Central sensitization can be thought of as a sort of exaggeration and a heightened expectation or it can be thought of as a change in neurological function where peripheral nociceptor function is altered. Looking at the brain to find central sensitization can have the disadvantage of seeing cognitive-emotional causation, especially involving the amygdala. As an aside, psychologists and psychiatrists loosely equate areas of the brain with mental and emotional function – with little knowledge of how these sectors of the brain actually function. This loose talk leads to generalized opinions about how pain and fatigue are mental states.
There is now good evidence of peripheral nociceptor pathology and changes to calcium and sodium channel function. Such changes are unlikely to be “mentally” created.
Poor knowledge of the neuro-muscular pathology and the relationship between muscular function and fatigue. Daily continual pain is fatiguing but there is evidence that the fatigue is also independent of the pain. Tightening and shortening of tendons and poor blood flow and oxygen supply causes fatigue. There is clear evidence for arteriolar shunting in FM.
There is poor understanding of what causes flares and cycles and symptom worsening. These are better understood in M.S. because they have been well studied. It is often stated that FM does not worsen over time and this may be true but it is a little trite to say this because some symptoms can worsen. Many people do report cycles of symptoms or symptom worsening. whether these “cycles” are due to events and activities or whether they are an inherent part of the disease is not known but if the illness is mostly a calcium channel dysfunction it could be genetically driven just as MS is. By genetically I mean that protein synthesis cycles are driving some of the symptom variation.
Treatment-lack of it!
the most commonly “officially successful” drugs are antidepressants, further convincing some doctors that FM is a form of depression/anxiety. In the U.S. the most used drug is Cymbalta (duloxetine). There are no drugs which help all symptoms and certainly none which reduce pain without side effects.
People with FM have a significant intolerance of medications and variation in response, which is frustrating for the prescriber. It will only be when we know what the basic underlying pathophysiology is that we get effective drugs but like M.S. they will have to be very advanced medication.
I have heard doctors talk about “treatment bullshit” and people’s beliefs (faulty illness beliefs) dominating their discussions with patients.
While there is value of exercise in pain management – it is touted as a requirement, further reinforcing the belief that FM is a form of depression. They often regard post exertional malaise (also present in FM) as a patients over-doing it.
While there is also value in stress management (and this takes many forms) it is not an effective treatment but is a general health benefit, like exercise.
I’m finding PEA to help pain. It has to build up over time to be effective. It also helps MCAS. But it will cause a bit more brain fog.
Doctors are sometimes the worst medicine.
Over time, I have noticed that a lot of fibromyalgia patients avoid the doctors or if they do go, dread the visit.
I had lost 175lbs through diet and exercise with guidance from my doctor, and yet, I was exhausted and had this strange roaming pain that mostly ached at the time. It was random and unpredictable but I began struggling to maintain my activity level and started gaining weight.
I asked for help. “You’re depressed” was the answer. They said that being depressed makes you tired and you can ache from depression. I was discouraged by the response because I felt that I was desperately motivated to maintain this weight loss and surely someone who was depressed wouldn’t be so driven…?
Over time, I regained almost all the weight I’d lost and was still being told I was depressed. I tried different doctors and got my hopes up when tests were run but no test results explained my symptoms so again, “You’re depressed.”
After years, it becomes a self-fulfilling prophesy. My life had changed a lot and I didn’t understand why. I had trusted a lot of doctors to try to help. I saw a rheumatologist who told me to exercise and take naproxen sodium (little did I know he had written in my chart that I had fibromyalgia and wrote a letter to my PCP that I had fibromyalgia). The next visit with my PCP was horrid. She was unprofessional and just antagonistic, mocking me – asking me if I was done with my “little list” (which I wrote out full sentences because I was tired and didn’t trust my cognitive skills to express my words if I only had short-form reminders in front of me). She was barely in the exam room five minutes… she told me I was depressed and thrust a script for an antidepressant at me.
She got angry when I asked if sleep could be the problem. She closed the exam room door while I was mid-sentence. Later, I asked for copies of those medical records and her staff member disappeared for awhile and returned to give me an obscene price estimate cost per page, refusing to say how many pages.
Honestly, at that point, I was fearful I would lose my job if I didn’t get help with my symptoms. I didn’t want to be a “burden” on my family. I was college-educated and my cognition was failing… I felt like I had early-onset Alzheimer’s and I was dragging my body around when it felt like my limbs were made of lead. And the pain brought tears to my eyes so I often hid in the bathroom during my shift to try to calm down.
I had thoughts of suicide after the doctor appointment.
We got in a car accident at Christmas and my mother insisted I see her doctor when I admitted I had numbness in both hands (rather than just one hand) after the car accident. He diagnosed me with fibromyalgia and he saved my life. Later, I would learn that I also had obstructive sleep apnea (and possibly narcolepsy – my grandfather had it and my father may have it also) widespread osteoarthritis and cervical spondylosis.
Treatment has truly improved my quality of life and I’m able to do modest but regular exercise. I’m losing weight and as long as I pay a lot of attention to my sleep needs, I can manage work with some very modest social activity. I do a LOT of self-care – attention to sleep, meditation, self-massage, topical pain creams, a limited number of supplements… any tools at all I can use to chip away at the overall symptom load.
The doctor that destroyed my hope… she almost took my life. I am so thankful to the doctor that diagnosed me. The best thing a doctor can do is to refer someone to a doctor that WILL help them but NEVER be abusive. Ever. Do no harm.
Well done you for your perseverance. I know how bad it can be. You deserve to be well
“(little did I know he had written in my chart that I had fibromyalgia and wrote a letter to my PCP that I had fibromyalgia)”
Disgusting! such communication without telling you directly is malpractice. This old style medical secrecy should have died with hippocrates.
I was diagnosed with fibromyalgia almost 20 years ago.
They told me for 15 years that my IBS was fibro, it wasn’t.
They told me my brain fog was fibro, it wasn’t.
They told me my fatigue was fibro, it wasn’t
They told me my depression and anxiety were fibro, they weren’t.
It wasn’t until I did my own extensive research (including reading a lot here on Health Rising) and explored many test and treatment options that I was able to completely eradicate the above symptoms. I’m vary, vary wary of us over identifying with the fibromyalgia diagnosis because it can mean we don’t look for underlying pathologies that are treatable. I do however completely relate to being ignored by mainstream medical doctors. I have found functional medicine approaches much better suited to our complex situations.
I still have chronic pain but I’m hell bent on figuring out why and not just accepting it’s ‘fibromyalgia’. Without a biomarker, how do we know that we’re all experiencing the same thing? There are multiple reasons we can be in chronic pain and many of them are treatable. As are fatigue, brain fog, IBS etc etc.
Hi again!
I am surprised that noone is commenting the Irwing et al 2019 Journal of Inflammatory Research study I posted.
Or have you discussed it already in one of your eminent blogs Cort J that I have missed?
Their “thesis” that responding to HC hydrocortisone means you have an inflammatory possible autoimmun desease and not treating it may often mean worse outcomes (more autoimmun disease and malignancies) than the risk of suppression.
This study had 25 CFS but many more FM patients who responded around 70-80% to low dose (average 12 mg), individually dosed only when a flare was anticipated with “HC-Holidays” inbetween. (After a few start up weeks with really high HC dosing lowered each week).
A 6 months trial if I remember right.
Would that not be a proof that FM or ME/CFS exists? In all simplicity.
They claim no adrenal or immuno suppression will occur if used thos way.
I am waiting for a longer trial though.
Still even the new pop up clinics in the usa with all sorts of ME/CFS and FM treatments, many of them have HC as a last resort.
Why not use HC but in a new different way that not harms? What if it IS possible? What if doing NOTHING harms us more in the long run? All the years of suffering with no life?
After taking years to diagnose we are thinking “okay you know the condition…now help us”. Sadly I was passed from pillar to post (like many) and continually fobbed off.
Basically you have the dianosis go deal with it yourself.
More information should be shipped out to drs to inform them….not only the conditions we get but how to help and give empathy! If they want more help (drs) ask us patients what the heck it is like on a daily basis!
We didn’t ask for our lives to be like this…suffer daily, no sleep, restless legs, widespread constant nerve pain, no quality of life…depression, hair loss, anxieties not just what does tomorrow hold, but how will we cope when we are worn out in the morning, to rejecting social gatherings with friends and family to avoid “those” looks…the list is endless….
It makes us feel old, rejected, usless, unable to fit in…even didabled!!!
I was diagnosed with fm at about age 30 and life has been a living hell. My symptoms are so severe and widespread that every day I think about euthanasia being the only way out. I get widespread severe muscle pain/stiffness, almost daily migraines, shingles every few months, insomnia, gerd, constant gastro symptoms and hives from almost anything. I’ve been dealing with this over 10 years and drs visits range from being completely traumatic or if I find a “good one” they usually give up on me after a few months. I’ve tried every therapy and medication out there that I can think of and the improvements are minimal and only last a few hours. Why should fibro patients be treated like this?
So sorry to hear this Mon. Please don’t give up. The NIH right now through the HEAL program is pumping a lot of money into understand chronic pain and developing new drugs for it. Since FM is considered “the quintessential pain syndrome” hopefully they will find something that will help – and soon. Health Rising has a blog on the HEAL program coming up.
(If you haven’t tried low dose naltrexone and cannabis be sure to give those a try. Health Rising has blogs on both.)
Hi Cory: I have had Fibromyalgia for years. I have always considered myself fortunate that I did not suffer from migraines and difficulty sleeping, both common to Fibromyalgia.
Three weeks ago, that changed. Week one, I had a four day migraine; week 2 it was a 3 day migraine and week 3 (this week) it was a 3 day-er with 7 episodes of vomiting.
Question 1: Have you seen any research on why those with Fibromyalgia suddenly have the onset of debilitating migraines? I have managed the pain, fatigue & constant rashes of my condition, but the migraines are the most difficult by far!
Question 2: Have members of the HR Forum shared the most effective medications to treat migraines?
Thanks!