Misdiagnosis? Fibromyalgia or PA?

[Chickens44]

I was diagnosed with fibromyalgia about 19 years ago, but I wonder whether it was a misdiagnosis. I am still waiting for a PA diagnosis, but have been experiencing many of the symptoms of PA for months. Many of the tests I have done have shown low B12, low folate, low ferritin, all within range but low. So I wonder if perhaps my fibromyalgia was incorrect all those years ago and it was actually PA. I did cope fairly well most of the time, working until 6 years ago, albeit very tired all the time, but since then, I have been very up and down, physically and mentally, more than before. The trouble is once you have been diagnosed with fibro, everything is attributed to that.

[charks]

According to Harvard Medical School Fibromyalgia may be caused by a malfunctioning nervous system. Low levels of B12 cause the nervous system to malfunction. So you might be right thinking you have PA or some sort of B12 deficiency.

[Nackapan]

My daughter had a misdiagnosis of fibromyalgia. It's a real thing but is a name for a collection of dibilitating symptoms .

Cause undiagnosed.

She had many many tests but once given that label investigations stopped as you say.

Her B12 finally tested at 25 yesrs old in hospital.

Also had megobolastic anaemia

Very low ferritin ,folate

You sound as if you coped well for all of those yesrs .

An undiagnosed b12 deficiency 19 years ago perhaps part of the root cause.

I think the levels would've gone down further over that time or fluctuated??

Or perhaps a functional deficiency??

If your diet includes lots of B12 it must be a absorbtion problem.

As we age our stomachs produce less acid so absorbtion of nutrients slow more.

If your IFA test positive there's your answer.

If negative could still be PA or a absorbtion issue

Was b12 never tested when you first became ill?

If new symptoms may be new?? Or got worse

So much is unknown still about the autonomic system and nervous system ect.

Hope you get some answers soon .

Do post again

[Chickens44 in reply to Nackapan]

It could have been low B12 all along, as after taking omeprazole every day for about 19 years, I wouldn’t be surprised if it slowly eroded my gut defences and caused my current problems which have been worse since last May, when I stopped taking pregabalin (another drug that messes with your system). I also stopped the omeprazole at Christmas as I found out about the long term use can cause low stomach acid. No one told me, and I just kept taking it. What annoyed me recently was when I saw my GP, she was happy to give me more antidepressants and painkillers (sertraline and amitriptyline) but wouldn’t consider B12 injections. They don’t look at the whole picture, just a symptom at a time, and try and give you pills for that one symptom, so frustrating.

[Nackapan in reply to Chickens44]

Yes B12 often mis

Slowly absorbing lessB12 over years and years .

And not knowing if b12 deficiency caused reflux or it was the omeptazole depleting your B12 .

Yes treating pain snd other symptoms.

Rather than detecting the cause.

Also alot of drugs to help symptoms but of course muddy the waters .

Sometimes really helpful.

Sometimes make you worse .

It's the trial snd error approach when they simply don't know .

I trialled 3 drugs .

Refused 9.

My daughter tried all sorts.

Was a B12 ever done 19 yesrs ago?

If it was at least one measurement to compare.

It's in 3 generations of my family .

Hope you get some help

[BeachArt]

At the time I became unwell my GP wanted to give me a diagnosis of fibromyalgia. I wouldn't accept the diagnosis as only basic blood tests had been done. There is no diagnostic test for fibromyalgia, it is a diagnosis that should be given once other things have been ruled out. I argued that a basic blood test is not test enough, and also that I didn't have the tender spots. She soon concluded that I was right, but had I not argued my case she would have given me a diagnosis of fibromyalgia and sent me on my merry way. I had to fight for my diagnosis of B12d, but was lucky to find another GP willing to give me the trial of injections that I was requesting. So, in answer to your question, yes I believe that a misdiagnosis does happen. And sadly I believe that it happens all too often. If I were you I would I follow up the low levels, and request a trial of injections. Good luck x

[KhandiBar]

I was diagnosed with fibro and OA before I got a diagnosis of psoriatic arthritis. A lot of these autoimmune diseases hide away and can be difficult to diagnose - I've currently got three and counting...

I think we need to keep an open mind on what we have been told, especially since these conditions like to cluster and they can take many years to fully emerge. So, if it were me, I'd park the fibro diagnosis for now and continue to pursue a PA diagnosis.

I'm currently doing this privately because I can't wait for my (NHS) GP to do bloods. She wants to wait until July (sigh!) I'm nearly 70 and have had this stuff going on since childhood. I can't wait any longer and I want some wild living before I pop off.

[wedgewood in reply to KhandiBar]

I like your attitude ! 3 Cheers for you! Hip hip hooray .👍👍👍

[MorningMist in reply to KhandiBar]

I think few doctors really have empathy for their patients and how their decisions (or lack of) affect people’s day to day lives. From my doctor I experienced denial that I had a problem, refusal of treatment, scathing reaction and mockery when I resorted to self treatment and complete disinterest when I explained the improvement to my health and daily life.

As you say I can see know that my issues have been lifelong, I am now 67 and it’s only in the past 7 years that I have had anything approaching a normal life.

[KhandiBar in reply to MorningMist]

Couldn't agree more. My husband happened to mention to our GP that he was supplementing with magnesium. Her reply was, "that's just like throwing money down the toilet"!

He was too polite to say, "just like your PPIs, statins and BP meds that you tell me are keeping me alive".

[MorningMist in reply to KhandiBar]

Yes I’ve been prescribed all sorts -antidepressants, beta blockers, statins. I don’t take any of them.

[Chickens44 in reply to KhandiBar]

My GPs comment when I said I would like to come off antidepressants at some point, was ‘why would you want to do that?’. I should have reacted, but it’s like hitting your head against a brick wall, and it’s a bit like swatting a wasp, it only makes them more angry. 😂

[MorningMist in reply to Chickens44]

I thought that antidepressants were for short term use only. Many years ago I was prescribed them for two weeks and after that the doctor refused any more on the basis that they were dangerous and habit forming

[bookish in reply to KhandiBar]

Good for your husband - magnesium made a vast difference to my overall health and functioning. Not sure I would have managed to stay polite though....

[Suesue246]

Consultant's comment to me recently was that fibromyalgia doesn't exist and that it's actually B12 deficiency.A different consultant a few years ago said that fibromyalgia is a label when they don't know the cause of symptoms.

[MorningMist in reply to Suesue246]

It just means muscular pain. Yet another symptom, not a diagnosis. I would feel insulted if a doctor tried to fob me off with that and I would ask for a detailed explanation.

[Suesue246 in reply to MorningMist]

I agree. It's muscular pain of unknown reason.

[Chickens44]

Thanks for all the helpful and informative posts. It is great being able to bounce thoughts and ideas off people and get some relief that you’re not alone.

[Marymary7]

Have you had tests for Hypothyroidism this is often actually what the problem is…

[Chickens44]

my TSH levels are and always have been low it appears.

TSH levels

[bookish in reply to Chickens44]

Could be low B12 affecting pituitary function, so thyroid not getting the correct instructions. Can sometimes lead to hyper, more commonly hypo - central or secondary. But thyroid dysfunction goes hand in hand with B12 deficiency, they affect each other. I've had fibro pains since childhood, diagnosed years later, and I also have small fibre neuropathy which can be a 'cause' of fibro in some. That said, I have a long family history of B12/folate metabolism problems and having just started B12 injections am making some improvements (had been on oral for many years, which helped to begin with). Fibro may also be connected to methylation polymorphisms and COMT polymorphisms and I have both. You might find these interesting ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/225...

COMT is magnesium dependent.

[Chickens44 in reply to bookish]

Interesting article, thanks