Could I have it?

vosadrian

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I realise the title is the same as all the others here, but thought it would be more helpfult to start my own thread.

I am new here and a 48yo male. Fit and atheletic and managing to continue to do so with recent challenges. I did the diagnostic test on this forum and it says I don't have FM. I score highly on the widespread pain, but zero on the fatigue/cognitive side of things. But after reading a few posts here I felt similar to some other people posing a similar question to me, but I thought I would describle my symptoms here in more detail rather than crash someone else's thread.

I was fit and healty in 2014 with no chronic injuries or issues. I cycled about 12,000kms that year but mid way through the year I went on a charity ride that did 1000kms in 6 days and develped an ankle injury that seemed like achilles tendonitis. I did recommended treatments (PT, rest etc.) for several months but was unable to get on top of it. The rest away from cycling got me pretty down and anxious about the injury... but I am not normally a stressful person. Really the only thing that causes me significant stress is the chronic pain I now have.

After about a year of trying to get through the ankle issue, I had an accute episode of severe lower back pain when I twisted to pick something up off the ground when seated at work. Somehow I managed to drive home but I was stuck laying on the lounge for days, and I have never been pain free in the back since then. I did see specialists and get scans and a couple of injections but there was nothing outside normal wear and tear showing in the scans and no reason for surgery. Since that time, I have developed wide spread pain in my body. Worst is around pelvis and lumbar spine followed by neck and shoulders. Worst in the evening after a busy day. The pain is not shooting, but constant and aching. It feels like the skin around those areas is sunburnt and itchy and inflamed. The muscles feel severely fatigued in the evenings especially. I lay on the lounge in the evening and want to crunch up my shoulder/neck/pelvis in a feotal position and I donlt want to stretch out. I have seen rheumatologists and tried teatments for related disorders without success having tried some DMARDs, biologics, Pred and all without any impact. FM has been mentioned by some doctors, but I was unaccepting at the time. I am starting to think it is possible given the absence of anything else. But I am not even close to meeting the criteria in the questionaire except for the area of widespread pain. It is the widespread pain which is confusing. I can't have all these parts of my body having seperate injury related issues... so it must be some sort of systematic problem, but specialists say it is not Rheumatological. Maybe nervous system... maybe Psychosomatic?

I should say that I maintain a reasonable of fitness through aerobic activity such as cycling/swimming/running. None of that is pain free and I often feel pretty bad in the evenings after activity... but I am still pretty fit and surprisingly perform athletically at close to pre pain levels. I do have to do things differently, and train smart rather than hard. I spread different activities rather than just cycling, and I mix up on different days... so normally only do any activity at most twice a week with a couple days recovery of that activity before doing again. I feel this makes it even harder to get doctors to take me seriously since I look fit and do more than most healthy people do. But I would say I fit but not healthy as I feel bad almost all the time, and only OK sometimes and never good.

I have dipped my toes in the water of pain science following the work of Lorimer Moseley and trying his book about reducing factors in life that increase pain stressors and increasing things that are good.... but if you aske me to list things in my life that cause me to feel streesed or unhappy, there is not much exept the chronic pain... other aspects of my life are great. I do spend a lot of time thinking about the pain though since it is so distracting since I pretty much cannot find any position where the pain is not noticable except I can get to sleep OK in bed.

Anyway... could I have FM? Should I change the way I handle pain and stop looking for physical reasons for my pain and see if I can get some relief by handling it in a different way?

Thanks for any advice you can give me.

Cheers!
 

sunkacola

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Hi vosadrian, You could have fibromyalgia. So I can answer that question as such, but I don't know how much that helps you because of course I cannot say for sure if you do or not.

What I can say, though, is that from what you way it sounds as though you are going about handling this is some really good ways. You are maintaining your physical activity, adjusting appropriately for your pain condition, and you seem to have a good attitude toward this, all of which is very helpful.

I understand that having chronic pain causes stress, and this is unavoidable for all of us. I recommend that you read my post pinned at the top of the General forum, because there are many different suggestions there for things you can do to help yourself. Managing stress, no matter from where it comes, is a key element.

there are many things you can do to manage a chronic pain condition whether it is fibromyalgia or something else, and I recommend trying some or all of them and doing your own experimenting to find out what works best for you on all the different levels of this.

I wouldn't want to suggest you stop looking for physical causes for your condition until you have exhausted all of the tests you can get, because if you stop short you might not be tested for the very thing that it is, and miss out on that knowledge and potential treatment.

If you exhaust all of the tests you may very well get a diagnosis of fibro. Whether or not you do, you are welcome here and we are all here to help and support each other as best we can.
 

vosadrian

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Thanks for your advice sunlacola,

Is there a list somewhere on this forum (or elsewhere) of cross diagnosis that could me mistaken for FM that I could be tested for? I have seen a few different GPs and a number of specialists (Neurologist, Rheumatologist, Neurosurgeon etc.) and not found anything. I am not sure if I have exhausted every possible thing to rule out. My GP has run out of ideas... so for me next step would be a pain management direction (which is more at my direction than the GPs), but perhaps I have missed something first? It really feels in things like this that you have to manage things yourself. I wish I could find a GP that could manage this better so I didn't have to. Perhaps I expect too much?
 

sunkacola

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Thanks for your advice sunlacola,

Is there a list somewhere on this forum (or elsewhere) of cross diagnosis that could me mistaken for FM that I could be tested for? I have seen a few different GPs and a number of specialists (Neurologist, Rheumatologist, Neurosurgeon etc.) and not found anything. I am not sure if I have exhausted every possible thing to rule out. My GP has run out of ideas... so for me next step would be a pain management direction (which is more at my direction than the GPs), but perhaps I have missed something first? It really feels in things like this that you have to manage things yourself. I wish I could find a GP that could manage this better so I didn't have to. Perhaps I expect too much?
You are right........you have to take charge and manage things yourself.
GPs are not trained to manage diagnoses for their patients, unfortunately.

You may be able to find a comprehensive list of all the various things to test for on the internet. I would Google it and go to every site that has a list, because not all the lists will be comprehensive.
 

JayCS

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Sep 5, 2020
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DX FIBRO
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Is there a list somewhere on this forum (or elsewhere) of cross diagnosis that could me mistaken for FM that I could be tested for? I have seen a few different GPs and a number of specialists (Neurologist, Rheumatologist, Neurosurgeon etc.) and not found anything.
I'm all for lists of these kind of things, and am building up reference stuff. But I'd say everything could be something else...

Some docs (e.g. the rheum. Andrew Gross) suggest giving a diagnosis quicker to save time, energy and money. I wasn't quite satisfied with the fibro-diagnosis, altho it came fairly early on along after the begin of my full flare (the 2nd rheum., after nerves/muscles & hormones having been checked) and I had so many small diagnoses & symptoms already, that I did the whole lot, 25 specialist areas, 45+ docs altogether, so double & sometimes treble checked, which was good, with quite a few chance findings.

From each doc I learnt a tit-bit about my body and continue to use about 6 of them to keep learning more as I test out treatments further (75+). My sleep lab psychiatrist is helping me with sleep, suggested L-dopa, which seems a good idea up to now (he thinks I might have several small sleep disorders along with the fibro). But I learnt more by reading up each symptom and treatment on the web and the forums (that'd be what lead me to GABA), trying everything that wdnt seem to hurt me too much (a lot of things did, however, several doc treatments most). Suggestions from my friends believe it or not helped most for the first year (cryotherapy, WHM cold showering & breath-holding, 'yoga').

My suggestion for your next step'd be an endocrinologist. Orthopedists you've probably done enough too.
But far more important than the diagnosis I'd say is to find good gentle, understanding, listening physiotherapists: osteopathy and TCM/acupressure help me most....
 
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