Can we make a Fibromyalgia support thread 🙏 ✨️ ❤️

[sunshineandkindle]

Hello I've been recently diagnosed wi4h fibromyalgia and hypermobility and looking for other people in a similar boat.
I'm not on Facebook so can't join a Facebook group.
Anyone else around here with fibromyalgia that would like to start a thread for support?

I hear you about work. I've gone back to work and know that it's made everything worse - my fibro, my chronic back pain etc. However, we need the money, I need the pension contributions, and I absolutely love the job. They are the only reasons I'm sticking with it. I wfh 2 days a week. Without those days I probably would have to give the job up. Some wfh days I have to have a little nap during the day to get through. Those 2 days give me enough rest to try and plough through the days in the office.

Thank you! I tend to agree 😂.

Yes I’m in the UK and apparently it’s a trust-wide thing. I wasn’t actually diagnosed per-se as obviously fibro is a diagnosis of elimination, but I had many, many tests for other things and that’s what came out of it.

@HoneyParsnipSoup the bruised feeling skin is one of the symptoms I find hardest to cope with. Days when even clothes brushing against your skin are excruciating.

@FeelingLessTired not degenerative? HAHAHAHA. Did they ask someone who’d had it long term or just decide for us like most things to do with fibro? 😕

Hello everyone! I'm in lots of pain in my legs as usual and my jaw is stiff, clicking and hurts. Just about to finish a book about fibro. I have a kindle now and i can use it pretty much hands free which has been awesome. Currently lying in bed using those tennis balls to relieve pressure in my buttocks and thighs as that's where I got most pain.
I got a massage gun for my legs for xmas which is quite nice- painful but relief as the muscles are rock solid on my upper legs.
How's everyone doing this last week?

I was diagnosed with psoriatic arthritis about 1.5 years ago, been in a variety of meds, biologics started in Aug and although my joints were feeling a bit less painful, I still had the ‘other’ pains. After speaking to rheumy nurse who got me in to see the consultant in November it seems she has diagnosed me with both fibromyalgia and chronic fatigue syndrome
I’m part way through an appeal for ill health retirement, I can hardly get that dove, let alone my busy full time job (been off sick most of 2025).
any hints and tips of words or sentences to put in my appeal would be grateful received!! They’re essentially asking the to show how I can’t do my job for the foreseeable future 🥺

hi all i'm so sorry there is so many of us in this terrible situation😢i was told mine was caused by the stress and grief of the sudden and very upsetting loss of a close family member and the guilt of not intervening sooner…i had it almost immediately but could cope okay until around a year later then got progressively worse til the point i'm at now where i require a lot of help and really can't cope with it. i was so active always busy and running around helping people and now i'm an agonised mess sitting in a chair, i still do my best to help but it's a real struggle, i use walking aids at home and outside. i have muscle bone joint and nerve pain the nerve pain makes me bang my head off the wall the fatigue and brain fog is awful too when i have a flare i feel like i've been thrown off a high rise apartment building…i also find i fluctuate between roasting and freezing sometimes both at once (like there's fire inside my body and ice outside my body) and the itching is unreal (a thing i've found relieves the itching is tesco own brand baby lotion) i take 8 co-dydramol a day and it doesn't touch the sides it takes the edge off for half an hour or it i'm lucky an hour… i asked my gp for something to take between doses and was told to take ibuprofen😩i keep meaning to buy a tens machine and i'm considering pemf therapy, would love to hear if these are helpful. my mental health was never superb but the feeling of uselessness really affects me. sending strength and solidarity to all.

@baroqueandbluemy nails are like paper especially since i started suffering with this horrible illness i've had success with biab for them though, they are the longest nails i've ever had apart from acrylics, they put the biab on and cure it (it's a translucent colour with the tiniest hint of pink) then you can either leave them like that or get them painted with gel or normal varnish.

And what about complex regional pain syndrome? Similar thing but different cause.

I’ve got that as well as fibro. It’s hell.

I don't think you meant to tag me, I didn't say anything about my nails.

I was diagnosed 30 years ago. I was virtually bedridden at that point but these days I have a full time, active job (vocational FE and HE lecturer). I don't manage much else, but it is doable. And it's not degenerative - only something that will eventually kill you counts as degenerative. Fibro 'just' makes you feel like you're dying.

There is hope. I'm on my lunch break now but will return later.

I don’t actually recall how long ago I was diagnosed - maybe 20 years? 🤷🏼‍♀️ Not a surprise at the time as Mum had it, and my son has awful ME - same family apparently?

The best description that I have read is that it’s the central nervous system turned up too high so lights are too bright, noise is too loud, pain hurts much more than it should etc etc. I find that even being hungry hurts! (Possibly partly why I’m about 3 stone (ish!) overweight (the rest is down to sweet tooth and comfort eating and drinking) which of course doesn’t help.

I do find walking useful when I can but haven’t yet found any other exercise I can tolerate sadly.

Sorry that so many of you are having a horrible time.

@baroqueandblue i'm sorry for the mistake i had taken my nighttime medication when i posted. i meant to tag @HoneyParsnipSoup wrt to biab.

Hello.
I have have had the diagnosis for 20 years.
I am so tired these days and just feeling worse than the "normal days". You know the feeling.
English isn't my first language. We have been in UK for +15 years and are relocating to our Scandinavian country.

Anyone else needed to go part time?

I’ve not been formally diagnosed but a number of clinicians have hinted that I might have fibromyalgia. I had to drop from working 5 days to 4 last year. Despite wfh I just wasn’t coping.

I had to reurn to my former job. I can substitute and have less responsibility. More or less set my own shifts.

It has been the greatest loss not to work in a field I really loved.

I had to reduce my working hours and now work on a very sporadic basis. I am due to work 9 hours this week over 2 days and am really worried about how I will cope with it.

I did go to a nutiritonist though last week and she reviewed the last set of blood tests I had and identified a Vitamin D and magnesium deficiency which had not been mentioned by my rheumatologist. I am now on supplements for both and on Saturday actually woke up feeling reasonably okay. So we will see. I take my Dcs to school each morning, and due to roadworks today it took over 2 hours return - I was shaky and dizzy when I got home.

I’m prescribed Transtec Buprenorphine 4 day slow release patches for fibromyalgia pain and they’re life changing! Been on them 12 years now and I wouldn’t be able to manage without them.

Hi there. I’m so pleased this thread has been created as I couldn’t find one anywhere else. I was diagnosed with Fibromyalgia last year. I had a large pituitary tumour removed in 22 but my health continued to suffer and in the end the docs put it down to fibro.

I’ll admit I’ve been a bit in denial about it, trying to convince myself it was just menopause or age (I’m 54 next week) but after running out of my meds and suffering dreadfully I am having to accept that this is what I’ve got ☹️

I was always a bit of a gym bunny but have already given up anything that is high impact, opting instead for swimming and yoga. Last night I tried a Pilates class which was really tough. This morning I am absolutely wiped. I have slept really badly and just hurt all over.

How have others got on with exercise? Should I stick with Pilates in the hope it gets easier or give up and stay with swimming and yoga (neither of which have the same impact on me)?

I was diagnosed last year. For a while I tried so many different types of excercise and tried to sort of exercise through the pain. But it would put me in bed for days- once 10 days.

For me, my current aim is trying to learn how to pace myself. I was never a gym bunny however! For me right now, it's enough to just get through the day with the school run and gentle housework. I've just come back from the school run (12 mile drive away) and am zonked. I've just called the place I am supposed to do some hours this afternoon and asked if I can park on site because I'm not up to walking the 7 minutes or so from the carpark to the site.

I have given up exercise. I would like to do more exercise in a heated pool but so expensive. I do prefer to walk then I can. It doesn't seem to bother me.
Child, house and work is enough of a challenge.

I was diagnosed 7 years ago. It rules my entire existence. The daily pain is unbearable some days. I’m about to have to give up work due to this and some mental health issues. Great idea to make a support thread.

True, fibromyalgi isn't classed as degenerative but my fibromyalgia has clearly worsened over the years.
No doctor bothers to listen to it because treatment or even understanding is minimal.

CFS since 2014 after a nasty virus,post covid gift was fibro 2020. I don’t know if anyone else can trace the start of symptoms to post virus? I used to run miles,exercise classes/dvds,walk dog for miles. Everything had to change. I cut back on work who were brilliant supporting me,until management changed and then weren’t. I’m fortunate I’ve been able to retire early so I can rest as soon as I can feel a flare coming. The day to day pain level is normal for me now,manageable without medication. All the GP offered was amitriptyline,which drugged me up I was like a zombie so stopped that. I’ve started 10 min workouts to build myself up again. Pacing is a battle when you’ve been so fit and have good days when you still can.DO NOT be fooled,it will bite you in a day or two. Slowly slowly. Yoga for me is good,helps take inflammation down,but I do get bored with it. I take magnesium glycinate to help sleep,still not brilliant but improved. B12 & co enzyme q10 have helped with energy,before the fatigue was debilitating also omega 3,6,9, for several reasons. Brain fog has improved. My skin still hurts some days but I’m very aware of how fabrics feel now and don’t buy anything tight either. I have days when all I can do is rest,bed rest not sofa as sitting up is too exhausting on those days. Those days are less now. The scary episodes where I had to be helped to the bathroom ,the pain was so bad haven’t happened for months now so I must be doing something right.

wrt people having to go part time, i'm totally in awe of all of the fibro warriors on here that are able to work even part time. i can't mop the floor of my grandparents' small kitchen using one of those lightweight mops that spray the cleaner out, without sitting in the recliner for hours before, never mind working. i would be definitely be floored and - without a word of a lie - potentially hospitalised after one shift of 99% of jobs.