Is it a real disease?

[PennyBlacksmith]

I recently saw a Rheumatologist after 8-10 years of symptoms, who has said he believes that I have fibromyalgia. (I'm not sure if that counts as a diagnosis) My partner of just over a year, who is a mental health professional, has said that fibromyalgia is just what doctors call it when they don't know what is causing the symptoms. I don't know what to think, but I feel like he's trying to belittle my illness. I don't even know how I feel about what the doc said yet and I'm having to deal with his attitude.
I'm not even really expecting an answer or reply, but I need to vent somewhere.

 

[Swaltr]

Hello PennyBlacksmith,

I was recently diagnosed (with not so much confidence from my GP) with FB. She physically looked me through and never concluded that from the beginning but eventually did a “paper analysis”. It was only through my chiropractor who even suggested it that made me question. Long story short I had one accident (fracturing my tailbone), that led me to the diagnoses of phantoms disease, degenerative nerve damage, FB, de Quervain's tenosynovitis (which I thought was arthritis due to the FB), to maignes syndrome/thoracolumbar dysfunction syndrome. I’ve been through chiro, physio, acupuncture, craniosacral therapy, a psychotherapist, osteopath….tried medications, natural remedies, CBD/THC balms/ointments/oils/pills/smoking, cryotherapy-you name it. Just in less than two years.

Anyways, don’t let your partner discourage you no matter what profession they are in. Before, they thought FB had to do with traumatic events leading to the diagnosis. The only treatment was talking to someone; therapist, psychologist, counsellor, etc. now it’s classified as an auto immune disease which can be managed in different ways-by a lot of people. Some as unfortunate as myself, nothing has helped.

Physio and chiro has always made me feel better because they always stressed that with any chronic pain no specialist (medicine wise/surgeon) will diagnose most of these things because they are so specialized. Especially if they don’t see a lot of findings through imagining.

My GP probably doesn’t believe half the things I say and of course it’s SOOOO discouraging; like you think it’s all in your head, ITS NOT-please try to believe like me (on my positive days) that we can get through it!

I haven’t been back to work since my accident which has been so discouraging, frustrating, sad, depressing. I was always active; played sports, worked out, loved my job as a second family (as intense and physical as it is), NEVER had body issues, especially back problems. Now it has all changed for whatever reason and I’m trying to cope.

I hope some of my words has helped, even if it’s to believe that all your pains are real!!!

 

[Badger]

It seems one of the most difficult parts of life with Fibro is other people's attitudes towards it. We're left with a life long battle of standing our ground and trying to making others understand. It's a real physical problem that has a big impact on sufferers lives and their mental health. I'm sorry to hear about the difficulty you have both had and hope for more understanding in future.

 

[sunkacola]

I recently saw a Rheumatologist after 8-10 years of symptoms, who has said he believes that I have fibromyalgia. (I'm not sure if that counts as a diagnosis) My partner of just over a year, who is a mental health professional, has said that fibromyalgia is just what doctors call it when they don't know what is causing the symptoms. I don't know what to think, but I feel like he's trying to belittle my illness. I don't even know how I feel about what the doc said yet and I'm having to deal with his attitude.
I'm not even really expecting an answer or reply, but I need to vent somewhere.

Hello Penny, and welcome to the forum.

What your partner said is double-edged. One side of it feels to you like a put-down, or minimizing what you are experiencing, and that is not a good thing.

But the other side of it is that it is, basically, true.

FM, or FMS (fibromyalgia, or fibromyalgia syndrome) is a diagnosis that is commonly reached by testing for all of the other things that could be causing the various symptoms that a patient has, and if all of those possibilities are eliminated, the diagnosis is Fibromyalgia. So it actually is what doctors are calling it if they cannot point to something else as the cause. As such, it is kind of an umbrella term.

Of course, that does not mean it is not real!
I personally think that if enough research is ever done, which seems unlikely but is not impossible, they will discover that FM can be broken down into several different things. But right now it is the thing you get diagnosed with if they cannot find any other cause for your symptoms.

Now, if y our partner's attitude is negative toward you with regard to this, that needs to be dealt with for sure. You do not need someone making you feel worse than you already do.
But I might gently suggest to you that you have a talk with him to see if he actually meant it in a dismissive way, or if he was just stating it as a truth. Since you feel it was belittling, it probably had that energy behind it, so having a talk with him about it - explaining that you need support, not belittling - might be beneficial.
And for you, understanding that what he said is true may help you not to take it too hard if someone says that to you again. It may not be intended as a put-down at all. I say it to people here myself, in describing a process that people often go through to reach that diagnosis, and I say it to other people when I am describing FM to them. Naturally I am not saying it as a belittlement of the condition.

I wish you the very best. If you have questions or need help with anything, please come here and let us know. And remember we are here to help and to support you any time.

 

[Auriel]

Hello Penny welcome to the forum ️ of course you can vent! I’ve had my annual grumble here now and again and if you can’t vent about fibromyalgia on a fibromyalgia forum you can’t vent anywhere . I am sorry you’ve been sort of diagnosed with it though as it’s really not a nice condition, it’s true that drs don’t know the cause but 100% it’s a genuine condition (it can be managed) I take gabapentin for mine (it has side effects sleepiness) I’ve taken caffeine out so maybe have a look at different foods (gluten, wheat + sugar bothers mine big time) you’ll get sooooo many hints + tips here, yes it is a horrible condition but it’s not the end, I promise

 

[Jemima]

I recently saw a Rheumatologist after 8-10 years of symptoms, who has said he believes that I have fibromyalgia. (I'm not sure if that counts as a diagnosis) My partner of just over a year, who is a mental health professional, has said that fibromyalgia is just what doctors call it when they don't know what is causing the symptoms. I don't know what to think, but I feel like he's trying to belittle my illness. I don't even know how I feel about what the doc said yet and I'm having to deal with his attitude.
I'm not even really expecting an answer or reply, but I need to vent somewhere.

Hi Penny,

I'll just add to everything that the lovely people above said with this! While fibro is an exclusion diagnosis for now, studies on those with the condition have found distinct patterns of anomalies within the bodies of sufferers. Sadly, these are things that they can't test us all for, but physical specifics non the less - things like unusual autoantibody activity and elevated substance P in spinal fluid.

More and more research is being done on fibro, and understanding is progressing. There's a great article that I found really useful - Google "Autoimmunity and Neuroinflammation in Fibromyalgia" and find a page on the Very Well Health website to have a look.

Don't be discouraged by your diagnosis - it might not give you all the answers, but it'll definitely signpost a valuable path!

 

[JayCS]

said that fibromyalgia is just what doctors call it when they don't know what is causing the symptoms. I don't know what to think, but I feel like he's trying to belittle my illness.

Hi Penny - "FM" has unknown causes, may be a trash-can diagnosis, diagnosis of exclusion, and umbrella term.
But I'd put the above in the nutshell: the SYMPTOMS are invisible, but REAL - whatever we may call it
And like Swaltr implies there a lot of studies which show possible causes (however no proof how exactly it works),
and as Jemima said, there are also many indications of it, called "biomarkers", more than 15.
Pictures and memes may help us and others "feel" this reality by visualizing, e.g. search for "Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses". (There are quite a few conditions like that).
Clever doctors know this pain is invisible and are recommended to believe patients. That's a big challenge for them and for us.
Pain researchers are calling this (3rd) type of pain nociplastic, idiopathic or central sensitisation.

now it’s classified as an auto immune disease

Careful: There are studies showing various possible causes, but few which indicate it might be autoimmune, the latest one published August 2021 by Goebel et al. was mainly mouse based. Researchers (like those did) like to claim their approach is the only one and a proof, but to date there is still more evidence that implies it is a central sensitisation syndrome and not autoimmune. Nothing is proven yet at all and the various approaches imply what sunkacola said that they all might be different aspects of the truth, and also that there may be subgroups. Like the old story from India about a group of blind men all claiming to know what the elephant is.

Some as unfortunate as myself, nothing has helped.
been through chiro, physio, acupuncture, craniosacral therapy, a psychotherapist, osteopath….tried medications, natural remedies, CBD/THC balms/ointments/oils/pills/smoking, cryotherapy-you name it. Just in less than two years.
Physio and chiro has always made me feel better because they always stressed that with any chronic pain no specialist (medicine wise/surgeon) will diagnose most of these things because they are so specialized. Especially if they don’t see a lot of findings through imagining

Wow, that's certainly a lot. Mind you, after my first year and a half and then 45 docs I could list all that, and also say nothing helped. Then there did come some help after all - esp. amino acids, acupressure for all local pains (and a 3rd psychotherapist).
So I do hope you keep your search up!

My GP probably doesn’t believe half the things I say

Changing isn't possible or not necessary yet?

 

[MikkiD]

Hi PB - Here is my take on doctors, which generalizes to a degree but it's my experience ... primary care doctors are largely uniformed about FM. I had a doctor a few years ago who told me not to say I had it because doctors knew that was codeword for someone looking for drugs. Huh. Then another recently who asked if perhaps I was a hypochondriac. Again, huh! BUT, I found a good Neurologist who understands the nervous system and has many FM patients. He once told me that he would rather have MS than Fibromyalgia. That's a big statement and one that made me realize that some higher-educated doctors do, indeed, understand. Find a good Neurologist. That will help when others question you.

 

[sunkacola]

Hi MikkiD,
I am surprised anyone would say they'd rather have MS than fibro, since MS is typically a degenerative disease and fibro typically is not. So I sort of question that doctor's assessment. But at least, as you say, it indicated than he had an understanding of what people with fibro go through.
I found that the best thing is to find someone who has experience in dealing with fibromyalgia patients, and that is not always easy to find. I always suggest calling various doctors that your insurance will work with and simply asking the person who answers the phone (since you won't get to talk with the doctor). Usually someone will be there who knows and can tell you.

now it’s classified as an auto immune disease

I agree with JayCS that it's very important to be careful with statements like this. It actually has not been classified as an autoimmune disease, that is just one of the things that they are currently investigating. We need to keep in mind that it is really not yet known how to classify fibro, and it's good that researchers are looking into the various things that it may be.

 

[KrisWark]

I actually have felt that way myself - after seeing various doctors and specialists for years, when I was finally "diagnosed" (I also wasn't sure if it counted as a diagnosis), I was quite strongly convinced they just hadn't looked hard enough for the root cause of my symptoms. For me, at the time, the diagnosis felt dismissive of my concerns. I imagine everyone reacts differently to this kind of diagnosis. I've heard for many, having a name for it is hugely helpful and I can see how having someone tell you it isn't "real" would feel really deflating.

Was your partner dismissive of your experience, or questioning the medical establishment's treatment of symptoms it can't easily explain?

 

[Badger]

It's such an emotive question and close to the heart of our struggle. Crazy to think a large part of the battle is fighting expectations and bias. We could do without it considering the symptoms and their impact. I've learnt the hard way that I'm not good communicator and been reminded of it lately. Tough pill to swallow, thick? sure, brain fog? yes, medication complicating things? why not? Still, we either win or we learn

 

[JayCS]

It's such an emotive question and close to the heart of our struggle. Crazy to think a large part of the battle is fighting expectations and bias. We could do without it considering the symptoms and their impact. I've learnt the hard way that I'm not good communicator and been reminded of it lately. Tough pill to swallow, thick? sure, brain fog? yes, medication complicating things? why not? Still, we either win or we learn

Well Badger, you sure communicate well and wisely here, however your current condition!

Combined with the thread post I just wrote and added to, about believing it ourselves, here,
I'm starting to think that "believing" is a potent way of "fighting expectations and bias",
which however pre-supposes getting informed, making plans, etc. which requires self-advocacy and can then increase this.

On forums, mods and admins have to keep people/us from going off at a tangent, as it is possible to believe some very strange things, and so they/we have to continually refer to the docs as experts. And I do think doc's are an important corrective, just a much as reaching out to others with similar conditions and paths: this for the more practical, emotional parts, the docs for the theoretical, empirical parts. On the other hand docs are only humans, with a very narrow focus, so it's better not to rely on only one of them, but to get a bigger picture. My medical and other self-confidence now hasn't just grown (from negligible as a child) from my personal development, therapy & mindfulness, but also because I've been to 50 docs in 2 years, have read 1000s of their abstracts, 100s of their articles, and all contact is (now) mutual respect and agreement. So I know unfitting "expectations and bias" when I see them, altho I always also ponder where there is truth in what is being said and where there isn't.

Not quite sure where that last paragraph is going, but to get back on topic in case I'm not:

We "need" to believe in ourselves, in our symptoms, the conditions we may have,
and pursue them & that by comparing with ideas of others, tests, developed criteria.

taking into psychological factors in ourselves into account like symptoms possibly being psychosomatic or somatopsychic, placebo and nocebo effects, as well as psychological factors of our docs who have been pre-selected and trained in a certain way of thinking, are much too often expected to give perfect answers and develop their own strategies how to cope with that, so have very simplistic ways of of seeing the influence of the psyche, of the way the body and pharmaceuticals work, etc....

Not sure if I'm making myself understood or making sense...

 

[Badger]

Yes fair play, interesting food for thought, you are well read and give topics a lot of consideration. It is helpful for others who find it difficult collecting their thoughts or studying articles. Information retention is a problem for me. I applaud sufferers who are able to explain in detail, it is inspiring.