Am I misdiagnosed?

gain

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Joined
Dec 24, 2020
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DX FIBRO
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11/2020
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FI
Isn’t there pain in fibromyalgia all over the body?

Where do you have pain?

I feel like I have been misdiagnosed.

I have been tired the whole of last year. Then I got an ankle pain from a cycling injury.

I never recovered from this properly but the pain stayed on.

I suffered from a leaking intestine almost ten years.

I only have pain in my body in three or four places.

I was so tired from the beginning of the year that I couldn’t bear to see a doctor anymore.

I started eating iron and the pain started to subside.

I think I have an anemia.

I have no pain changing places. Only same places.

What do you think?
 

JayCS

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Hi - I do understand your doubts, in most fibromites the pain places do seem to change (or you could say: come and go in many various places of the body). On the other hand each body has it's weaknesses where the pain is most likely to be. The only way to - maybe - be surer about this is to sort out using docs and physios what is causing and what apart from iron can alleviate the pain in these 3 or 4 places.
Apart from the pain you are talking about tiredness. Might be partly the iron, perhaps anemia, so it'd be important to get that checked as soon as you're up to it, but perhaps also D3, B12, generally vitamins & minerals or something else. If you can't find / get found anything else, then you might come back to FMS or ME/CFS.
In my first year of my continual flare I had pains changing all over, additionally to Ache all over, exhaustibility & sleep problems etc. Now I've got almost all pains down with analyzing them, osteopathy, acupressure, gentle yoga and stretching, but the rest are still preventing me from being able to stay working more than about 15h/wk. And at the moment I've been dead tired for 2 weeks, have to try to get about 10h sleep, so am having to focus on sleep even more... Which might ring a bell...
And trying to find out what a kind of recurrent tooth ache is from, probably a combination, mouth guard in the daytime helps. That's an example of a pain in the same place which probably is influenced by the fibro tho...
 

sunkacola

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It's hard to say, with fibromyalgia. With some people the pain is always in the same places, with others it changes all the time. some are deeply fatigues, others only have bad days. If you think you may have been misdiagnosed the only thing to do, really, is to go see specialists and get tested for all of the other things that might be causing this, because fibro is a diagnosis made by eliminating the other things it could be. this is a drag, but it's the only way to know.

Meantime, try your best to take good care of yourself, as that is the best defense against all of this. We are here to help.
 

missfoxy69

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ive have fibro since 1990 and at first was said to have M.E. .. back then they didnt know about fibro or much about m.e but then 2001 a doctor who specialises in this and m.e said its fibro .. i get pain every where
 

sunkacola

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Thank you all for your answers. I'll try to find my way to success.

@JayCS, @sunkacola, @missfoxy69

How did your symptoms start?
Gee, it all started so long ago and in so many different ways that I don't think I can answer that accurately. But I think my first trouble was with my back and legs, which are still the areas where I feel the most pain and the most frequent. I didn't even see a doctor, because that's the way I am, and I just struggled through it for many years until finally the pain became intense enough to interfere badly with my life. Then I saw doctors, who didn't help, and started opiate pain medication, which I realized after a while was a very bad idea, and that led me to researching all the other things I could do to help myself, and I started doing those.
 

JayCS

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How did your symptoms start?
I got to terms with the stomach/gut, skin, back, nerve problems & social phobia I had or developed since I was about 20 down really well by the time I was about 45/50, and got really healthy, fit & strong, body, mind & soul. Parallel, praps after swine flu 2011 I periodically got a whole body Ache, flares especially wind induced, which made my GPs and I think of B12, D3 and fibro. When my wife saw it getting worse 2019 we got rheum. appts., the 1st in Nov19 dismissed the fibro-dx, the 2nd in Feb20 acknowledged it. After getting everything else checked with 45 docs, even trying a centre for rare diseases, "fibro" (Ache, exhaustibility & sleep) has remained the main problem, altho reviewing all my old symptoms and new chance findings (harmless spinal tumour, cardiovascular issues, hypothyroid, sicca etc.) have brought the amount of my diagnoses up to over 30.
 

gain

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Joined
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Messages
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Reason
DX FIBRO
Diagnosis
11/2020
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Thank you @JayCS and @sunkacola for your answers.

I think my symptoms are more indicative of anemia and thyroid.

When I started to take an iron, I feel much better. I still works 9 hours a day. My brain fog also has also lost. When everything started last year, I can't even go to the hot shower because of pain.

Last weekend I went to the sauna without symptoms. Last year I have so bad feeling unwell after the sauna.

I have taken an iron for a month.

I still have some pain but I can ride a bike 40 miles a day.

I think I have central nervous system sensitization.

It's so hard to say, if it's fibromyalgia.

Does anyone know that?
 

sunkacola

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Thank you @JayCS and @sunkacola for your answers.

I think my symptoms are more indicative of anemia and thyroid.

When I started to take an iron, I feel much better. I still works 9 hours a day. My brain fog also has also lost. When everything started last year, I can't even go to the hot shower because of pain.

Last weekend I went to the sauna without symptoms. Last year I have so bad feeling unwell after the sauna.

I have taken an iron for a month.

I still have some pain but I can ride a bike 40 miles a day.

I think I have central nervous system sensitization.

It's so hard to say, if it's fibromyalgia.

Does anyone know that?
If your question is, if any of us know if you have FM or not, we cannot answer that. Not being doctors, and even if we were we couldn't diagnose over the internet. If you can ride a bike 40 miles a day then you are doing great, no matter what else is going on in your body. Few people with FM can manage that, even if they were athletes before.
 

gain

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Messages
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DX FIBRO
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Thank you. But it's true, that FM only appears in the brain?

Fatigue, pain, etc. can be caused by many other things.
 

JayCS

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DX FIBRO
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Hi gain -
"I can ride a bike 40 miles a day."
I pride in saying riding a bike is one of the things I still can do well, but only manage 10-15 miles a day and have to watch out how I do it. I still sometimes manage a 10' stint in full speed, real fun!, but no longer, usually only 2-3'. I also play table tennis every day, losing 3 of 4 games on a bad day, and treading on balls etc., needing breaks, but winning most of 8 on pretty good ones. Most other things is usually in 3-4 min stints... For walks I take my bike with me. But then I'm in a continual full flare... and you may have FMS, but not have had one.

"But it's true, that FM only appears in the brain? Fatigue, pain, etc. can be caused by many other things."
I think you are referring to the CSS-hypothesis, central sensitization syndrome. That might account mainly for hyperalgesia (pain amplification) and allodynia (soft touch hurts). I don't have either. Other parts of the brain may be responsible for other FM-symptoms, but that's as yet very unclear. And there are 4-5 other hypotheses floating around, being researched.
Of course we should all try finding out if our fatigue, pain etc. comes from somewhere else than FMS. I'm doing that once again right now, getting my thyroid checked thoroughly. But all this in my case usually comes back to the fact that there is no other answer.
Also that it doesn't matter what it is - the diagnosis doesn't help me, but I'm using it to check any ideas or treatments which may suit my body. Non-med any more, as they always harm me.
 

Affinity

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FM is kind of a trendy catch all diagnosis of exclusion so a lot of people find themselves diagnosed but what it really means is they don't know what else to tell you is wrong.

I was first diagnosed back in 2014 and even a couple of years ago I could run 10k no problem with the FM. Today I cannot run so far as I have had some complications in the past couple of years but often people can be quite active with fibromyalgia.
 

JayCS

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Messages
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Reason
DX FIBRO
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FM is kind of a trendy catch all diagnosis of exclusion so a lot of people find themselves diagnosed but what it really means is they don't know what else to tell you is wrong.
Hehe, 'trendy' sounds a bit like they can't be bothered, or they are jumping to conclusions. I'd argue the increase in diagnoses is due to more awareness that it is there and not that it is misdiagnosed. (Good) docs (like Andrew Gross in his youtube talk) will also rather argue that it may be a waste of resources to check everything there is, because it can be so much. My centre for rare diseases suggested there is something autoimmune 'behind' (or instead of my fibro), Sjögren's and Hashimoto. But getting that checked it wasn't Sjögren's and is probably only a slight case of Hashimoto, so no explanations of all my symptoms, so after 45+ docs I still have to come back that it is fibro. That said I couldn't rest till I'd followed up all ideas anyone gives me, that's me...
 
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