Query Fibromyalgia

[L74]

Hi all
Am aware no one can diagnose here so no expectations though like many am here because i strongly suspect Fibromyalgia and looking to see if it resonates with others. After positive ANA at GP I saw rheumatology around 6/7 years ago for pain but they ruled out both RA and Lupus. I queried Fibromyalgia then but Rheumatologist was pretty dismissive re it. Since then have continued to experience widespread pain - and though GP has checked muscle enzymes / iron / thyroid over the years they have never really got to bottom of it. I have other conditions including T1 diabetes...migraine..epileptic and convince hormones starting to act up. Currently on pregabl for worsening migraines. I have fallen arches so seen podiatry to see if that causing pain in legs.. Seen orthopaedic to check if arm pain is carpal tunnel. Do the usual things re if its posture causing neck pain etc etc.However i continue to get widespread pain- feels like muscles are over exercised/ flu and though sounds daft it just feels ' systemic'. After walking am in agony and sitting down is sore too. I do have rubbish sleep ( wake up a lot) and restless legs . I do wake up stiff and get fatigued as day progresses in particular. I have zero energy and mood is low though i see this as understandable given all that goes on . My hands and fingers are in terrible pain and constantly massaging my knuckles and palms . I do have a responsible job and manage it ok so no cognitive issues. Ironically have managed good few staff off sick with Fibromyalgia and their experiences seem similarly but not identical

Am so tired and sore and fed up ( painkillers don't touch it) and dont know what to do next. Going to contact GP tomorrow after bad couple weekd

Does this journey sound similar to others? Any advice for next steps

Thanks for sticking with the long story!

 

[sunkacola]

Hello, and welcome.
All that you describe could be associated with fibromyalgia. But it could also be a result of one or more of many other disorders and syndromes and diseases that are similar. Fibromyalgia is a diagnosis of exclusion, so the only way to know is to be tested for all of the other things, like MS and Lupus and so on that this could be. , ALS and so on. Also diabetes can create some of the same symptoms. Best thing is to get the tests that are available run for all of the other things in order to be sure, because the treatment for other things can be very different and some of them can be cured. Those tests are your next step.
Best of luck.

 

[L74]

Thanks. Most of that has been considered and ruled out though maybe repeat bloods needing done for some things

If its a diagnosis of exclusion then suppose anm wondering from others experience who are diagnosed if anything strikes a chord

 

[sunkacola]

Many of us have experienced many of the things you mention; they are all part of the syndrome. for instance, I also have widespread pain, muscle fatigue, low energy, general fatigue, poor sleep, wake up stiff and tired, and struggle with depression.

 

[sleepytrex]

Definitely strikes a chord. I think one of the definitive forms of diagnosis is the tender points/sensitivity tests, but as @sunkacola said it's a diagnosis of exclusion. I was first tested for arthritis, which took the form of bloods (I ended up having 3 blood tests in total for this, not sure why so many!) I then had two sets of x-rays on the areas which gave me the most pain (feet, ankles, knees). Finally I had a face to face with the rheumatologist, who did the tender points/sensitivity test. Took about 18 months from start to finish to get the fibro diagnosis, but would probably have been quicker without Covid (plus I received a blank blood test form, and rheumatologist called in sick on the day of my appointment, which added about another 3 months on top). That's in the UK though, might be a little different elsewhere.

Personally I found GPs and specialists to be overwhelmingly pigheaded about both my ME and fibro. After being fobbed off for about a year by different GPs, who put it down to depression and workplace stress, prescribing ever increasing does of sertraline, I eventually asked my mum to come to the GP with me. Initially I was referred to an MS specialist (MRI, electric shock nerve test thingy) who was very dismissive to me and rude to my mother, refused to write me a sick note for work, and wrote in his letter to my GP that I might be better off seeing a psychologist. Next up was cancer, which was was ruled out with an x-ray, before finally I got an ME diagnosis from an endocrinologist, who stated my symptoms were "textbook". So, not in my head then!

Even my rheumatologist who I was referred to for my fibro pain got me to do a sleep apnoea and narcolepsy questionnaire, which I did out fo good faith. I then got into a heated discussion with him over whether he really thought that the agonising pain I was in, the debilitating effect on my body, and the fact I had lost my job, were all the result of poor sleep, at which point he admitted it was very unlikely. Another rheumatologist suggested I tried CBT and mindfulness. When I asked whether she thought this would help with pain that was so severe it kept me up at night and caused me to burst into tears, she said that no it probably wouldn't, and referred me to a pain clinic.

I say all that to point out that you may very well end up fighting your own corner to get what you want from the medical professionals that you see. As I get a lot of brain fog, particularly when having to immediately respond to questions, I found it really useful to bring someone else in with me. I also found that when it was a 2 on 1 situation, the doctor would act in a very different manner towards me. I'm now at the point where I take absolutely no bs from anyone I see about my fibro or ME. At the end of the day they have no idea what causes it, and any treatments they have are either borrowed from other fields of medicine or have very tenuous evidence to support them (e.g. graduated exercise therapy, which NICE have dropped from their recommended treatments, along with CBT).

Good luck with it all, and I hope my post helps a little

 

[Flexecif]

Its kinda similar but, better seek professional advice just to be sure. Remembering my first time to encounter this, I'm so confused because I thought its just simply muscle pain.

 

[sunkacola]

I think one of the definitive forms of diagnosis is the tender points/sensitivity tests,

Actually that is no longer considered a definitive test by people who know about fibromyalgia. Which is a good thing, as it is completely unreliable. For instance, I have had that test done on me when I just about screamed when those points were touched and other times when it didn't bother me. It really depends on the person and the day, so that test isn't used by people in the know.

Just saying this so that people know that if someone dismisses you based on your reaction to this test, they are doing so out of ignorance.

 

[sleepytrex]

Ah okay. The rheumatologist I saw who gave me my diagnosis informed me that this was the definitive test now that everything else had been ruled out, which is why he had asked for a face to face appointment with me. Might be different in the UK.

 

[sunkacola]

Ah okay. The rheumatologist I saw who gave me my diagnosis informed me that this was the definitive test now that everything else had been ruled out, which is why he had asked for a face to face appointment with me. Might be different in the UK.

Yes, some places still use this test, but be aware that it is not at all definitive. If a doctor thinks that it is, they are not really up to date on the latest about FM. Whish many are not, of course, it doesn't mean he is a bad doctor, just misinformed.

 

[JayCS]

Might be different in the UK.

L74 hasn't been back since Sep 6th, but just want to set it straight that the tender point test is definitely no longer a definitive FM test in the UK either. Nor here in Germany - altho I was tested with it twice too. I think it's a more subjective help for doc & patient: If it hurts in a lot of places when a doc interacts with a patient by pressing them, it may be more likely for it to be a pain illness like FM than if it doesn't. What remains without it is everyone just having to believe us that it hurts "everywhere" (in a lot of places), and that is actually what modern docs & researchers have agreed upon as a main criterion, realizing that it is unfair & unreasonable not to believe us & highly unlikely that we are all simulating or hypochondriacs.

 

[sunkacola]

L74 hasn't been back since Sep 6th, but just want to set it straight that the tender point test is definitely no longer a definitive FM test in the UK either. Nor here in Germany - altho I was tested with it twice too. I think it's a more subjective help for doc & patient: If it hurts in a lot of places when a doc interacts with a patient by pressing them, it may be more likely for it to be a pain illness like FM than if it doesn't. What remains without it is everyone just having to believe us that it hurts "everywhere" (in a lot of places), and that is actually what modern docs & researchers have agreed upon as a main criterion, realizing that it is unfair & unreasonable not to believe us & highly unlikely that we are all simulating or hypochondriacs.

I have had that test done on me three times. Once, I felt nothing. Once, I just about screamed and wouldn't let the doc do any more, it hurt that much. The third time it was painful but only mildly so, just enough to make me wince.

For me and for a lot of others, there are days when even the slightest little bump or pressure is powerfully painful. I cannot believe how painful it can be. Other days, the same thing could happen in the same part of my body and I will hardly register it.

This, I think, is the reason that test is no longer used by anyone in the know.