Been told by 3 professionals 'probably Fibromyalgia' but no diagnosis...

[Gigi_96]

Hi all,

For the past 14 months I've had 'flare ups'. Even before these I was known for losing my words, stuttering and completely forgetting/shutting off during conversation and was just me being me. Christmas 2021 I got covid and my sometimes niggly pains got so much worse.

By the time August 2022 came round I'd had enough of getting in trouble for being off sick with this mystery illness that would have me off bed bound and exhausted every month - I barely ever was ill before this started! So I called the GP and explained what was going on, had been told FM/CFS was likely and had bloods taken which all came back normal. I then had a physio appointment at my surgery and left feeling like a broken woman for a week and in even more pain from all the pressure points that were tested - again "sounds like it's probably fibromyalgia but wait for the referal"

I wait 8 weeks for a phonecall, she says "oh I'm only discussing one issue today your wrist pain I can't talk about anything else but that sounds like fibromyalgia though" I get some crap exercises on an app and no follow up - this was November.

Since then I've started a different job where I'm not doing anything strenuous or overly stressful and have had less flare ups (my last was over a month long and was physically being sick because of the pain).

So my symptoms are:

-Shooting, electric shock/hot acid pains in my back, both lower arms and lower legs.

-Constant back pain.

-Numb feet daily

-Sore and stiff fingers and hands daily

-Extreme fatigue if I try to keep up with 'normal' people.

-shooting pains in my ear drum, jaw and neck.

-high heart rate on the bad days

-average around 1hr deep sleep and multiple wake times during the night - I struggle so much to even get to sleep.

-wake up stiff and takes me a good hour or two to get back to some normal mobility.

These are the general things I can think of, sometimes it's random and sometimes I can't keep my eyes open and I know within a few hours the shooting stabbing pains will start.

Does this sound like 'probably fibromyalgia' or something else?

I'm calling them back tomorrow after 7 months to ask for further tests/who can diagnose. I can't keep being off work because I can't physically get up out of bed and saying to my employer "I can't tell you what's wrong" 😫 this is the sole reason I NEED to know what is wrong with me, so I don't lose my job !

Any insights or tips would be massively appreciated 💫

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

While your symptoms do point towards fibromyalgia, I can appreciate your frustration at not having a health professional give you a definite diagnosis. Your GP can make the diagnosis and it sounds like tests to rule out other conditions have been done. Also, a referral to pain clinic may be useful if gp is not managing pain

[jobananas]

Hi , I'm so sorry that you haven't had a diagnosis yet, my GP referred me to a rheumatologist he examined me and told me I had fibromyalgia , hope this is helpful for you. Good luck!

[JustAnotherOne1]

Hi Gigi really sorry to hear, it does sound ominous but not necessarily FM. The best advice I can give is to find a good RM and get a referral to go private if at all possible. Also, before a confirmed DX.. be very sure that your own occupation is covered in an income protection insurance policy. I was fortunate to have the safeguards in place through emoyment benefits but would encourage anyone to make sure they are covered, prior to diagnosis. Take the time away from work and concentrate on you, really.

[Flowerc]

hi it does sound like fibromyalgia my doctor diagnosed me as not all doctors routinely refer you to a rheumatologist for diagnosis anymore or that’s what my doctor told me I don’t understand why most people on here always say you need a diagnosis from a rheumatologist unless all doctors are not the same I don’t know hope you get help from your doctor soon

[Gigi_96 in reply to Flowerc]

Hi!

Funnily enough I called my GP this morning and was told that physio had diagnosed me but my care plan only says 'arm pain' lol. So I'm chasing them to either correct the paperwork or tell me if they've diagnosed me!

I've had a close friend recently diagnosed and she had to go through a rheumatologist, whereas I've not? It's very strange that people have to jump through different hoops for a diagnosis!

[Flowerc in reply to Gigi_96]

yes agree different for everyone it seems

[Whiteclouds]

hi I totally sympathise your symptoms sound so much like mine except my feet don’t go numb but get pins and needles and a burning sensation on top of them. I had to retire from work earlier than planned because of the pain sat at a desk all day was taking its toll I’d fall asleep as soon as I finished work I used to get on the train at Leeds on a night and fall asleep one day I missed my stop and almost ended up in London. I was diagnosed by a rheumatologist as some type of fybromyalgia ?? The doctor has referred me to physio I’m told I have aches because I haven’t used my muscles and they have become tight and need stretching but this takes time and will hurt, I also need to pace myself with household chores which I do already as the pain is so bad. I haven’t been prescribed pain killer but not sure if that is because I have other health issues I do take over the counter Flarin capsules which help short term. I’m in a bad flare at the moment and will be taking an Epsom bath which helps with pain. I hope that your condition improves soon as I do understand what you are going through.

[Gigi_96 in reply to Whiteclouds]

Hi Whiteclouds,

It does sound like you're going through it at the moment, I do hope you come out of your flare really soon 🤞 I do find an Epsom salt bath helpful too! Thank you for your reply, it's always good to hear someone gets it x

[Cov2020]

Hi Gigi_96 physio is a "for now" solution I have been to several appointments Arranged by consultants and Dr's over the past 10 yrs and for the main part it worked while I was doing it. I have had several setbacks and always reverted back to old ways. But I do walk the dogs every other day from carboot to grass and then from bench to bench because that is the only way I know how. The pain will always be there you just have to learn to manage it and find what best suits. Hope this helps x