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?

Does she have anything like psoriasis? Just wondered too what her inflammation Parker’s are like? Not that it’s a good way to diagnose PsA as it’s often negative, though I always have inflammation. My hands and wrists/forearms suffer with tenosynovitis too.
i also have fibromyalgia …. Thankfully I’ve been approved for ill health retirement at 54, so just finalising the paperwork etc

Thing is there’s nothing medicines really can do about it and it’s not like you’d need potentials of say specialist drugs or extra hospital care like say someone who has cancer or who has had a stroke so it’s good it was free IMO

No inflammation markers at all, in fact no tests revealed anything really apart from low ferritin and B12 which she’s having tablets for.

She does have sensitive skin and sometimes has a rash under her chin but we haven’t found a cause yet. It seems to just appear and then vanish.

The only symptoms she has are pain in hands and wrists with occasional swelling and tiredness.

I just found this thread. Sorry this is long, but I would really appreciate everyone's thoughts. I have been diagnosed originally with myasthenia (double vision, muscle weakness, fatigue), Nothing improved with steroids and immunosuppressants. Just massive weight gain, osteoporosis, falls and fractures, opportunistic infections, gastric bleeds. Every time I mentioned muscle pain neurologist dismissed it as myasthenia doesn't cause pain.
Got a second opinion after 4 years (!) and was told more likely musculoskeletal. Weaned off steroids and immediately had massive swollen, painful joints all over. Diagnosed with RA. Have been on hydroxychloroquine and methotrexate injections for 4 years but still in pain, mostly in my knees.
All through this I have had burning pain in my muscles, everywhere is tender to touch. Still have double vision, very painful dry eyes all this time. Last time I saw Rheumatologist I complained about the burning muscle pain and she said, "Oh yes, that is fibromyalgia pain". This was just as I was being ushered out of the door...
In the middle of all this I had a heart attack. Now on antiplatelet therapy. My Hydroxychloroquine and MXT stopped. Waiting for steroid injections in both knees, can't have them yet because of cardiac meds. Other joints all fine. Started 10mg amitriptyline at night 2 weeks ago for nerve pain. Knee supports on both knees.
I could do with losing a couple of stone (was always slim before being on prednisilone for 4 years). I don't overeat at all, but mobility is poor. Cardiac rehab nearly killed me because of the pain on exercising...
Fibromyalgia is the diagnosis currently being considered.
If anyone has got to the end of this somewhat garbled tale of woe, I would really appreciate your thoughts.
My plan atm is to continue as best I can, take the amitriptyline, use heat packs, wait for the injections. Can't take NSAIDS and paracetamol makes no difference.

I'm recently diagnosed with fibromyalgia and luckily don't seem to have anything else going on as well. I find NSAIDS are a waste of a prescription charge for me as they don't touch the flares I get - lower back pain and hand pain and swelling are my predominant issues.

Can I join please? I was diagnosed this year with Fibro and hypermobility at 51. I also have adhd and crohnic pelvic pain x

I did my MSc dissertation on fibromyalgia facebooks and I really believe that they offer great support in realtime. I have it too. From medication to general everyday niggles and worries. Really it’s a great resource for all because of the sense of community gained!

Hello to all and welcome to 'new' people. I find facebook hit and miss. Sometimes it can really drag me down so I avoid I find Fibromyalgia uk on there ok. I can't cope with all the info around meds/ alternative treatments etc!

That's been my experience too, I have had some really bad attitude on one fibromyalgia group just for being quite positive and I haven't appreciated people telling me ill end up in a wheelchair when that's absolutely not a given. I'm fairly ok now and I luckily don't have other things going as well except bowel disease. I can't get on board with groups that are all about being grave and depressing, the darker mindsets on there that tell me I have a bad future are usually people with a load of other health conditions going on and if I'm being really honest I feel there's a lot of people in some of those groups that got diagnosed and then just wanted to give up and sit around on PIP, being inactive isn't helpful for fibromyalgia.

Hey everyone! Not been on the thread for a while. Nice to see its still going :) ive just had a nap and feel rubbish as my 7 year old wanted to go out. We'd done some craft and baking and I'd done the usual things such as took the dog for a walk, put washing out, so by 4pm I was exhausted.

Do others feel really guilty?

Just diagnosed today after pain in my hands and arms for 16 years and two major whole body flares, one in 2021 and one this year.

I'm disappointed as I don't think enough has been checked to diagnose me, no scans, just bloods. Sent home with a prescription for meds and supplements and come back if you feel you need to in the future.

Surely there are other important tests to rule out other things? Did any one else get ultrasounds or MRIs? A physio even mentioned an MRI but the rheumatologist said everyone has wear and tear so there's no point.

I had several bloods and xrays to rule out arthritis. No MRIs or CTs. Sorry to hear you also have been diagnosed with fibro. What are your symptoms?

Thanks for your reply. I want to rule out other things as the symptoms are so varied. The main symptom is severe pain in my hands and arms but my neck and back regularly hurt too. Joint pain in feet and ankles, exhausted after doing regular things. When my pain is bad I can barely use cutlery or lift a cup to my mouth. Get tired chewing food and I also have migraines and IBS.
Sometimes I feel things on me that aren't there, have muscle twitches in lots of places and my limbs go numb a lot. My balance is getting worse and my legs feel like lead at times. I have to move my feet so they don't fall asleep and I have sprained my ankle twice after jumping up when they've gone numb.
Cognition is not what it used to be either whether it's brain fog or something else. Find it hard to sit or lie on hard surfaces, feel everything in my bones like I don't have enough padding when I do. Also have tremors in both arms and legs and my neck at times.
I feel like some of my symptoms match Fibromyalgia but could also be other conditions.

Hi @Acheyelbows Welcome but sorry you are here( ifykwim). As you have said lots of your symptoms 'fit' with Fibro but I am surprised you have 'only' had blood tests. I have had a few MRI's and CT scans over the last 15 years or so. I have migraines and Vestibular migraines as well as back issues.
Do you think your GP would refer you for those sort of tests?
We know we experience wear and tear as well as Menopause which dosen't always help!
It might not be a bad idea to find out what is going on...even if it is 'just' wear and tear. Not sure that's a good enough reason from GP really!
@sunshineandkindle Yes to the guilt!!

I feel guilty and I'm single with no kids, so I can only imagine how parents with fibromyalgia feel at times and you have my sympathy 💐

Having said that, my guilt partly comes from feeling less and less active and 'presentable' when I'm with my sister's children, whose early/primary school years I had a lot of input into. They're both early teens now and I'm not needed in the same way, which is sort of a blessing because my chronic health conditions have advanced in the last couple of years (although I miss the old days and the old 'me' with them). But often when I do have opportunities to spend time with them now I'm exhausted and/or depressed by the pain, and feel like I have less capacity to really engage with them as I'd like to. And the brain fog makes learning new games they're playing really challenging, for example, which makes me feel sad. I'm less spontaneous, and I have this fear that on days when we have plans together I'll be too unwell to 'show up'. I hate it. But disease progresses, I suppose, and losing bits of yourself along the way is part of the deal, as hard as that is to accept.

Not really sure what I'm trying to say. Having a particularly low phase at the moment, after months of feeling like I'm living in a tropical climate that I never signed up for!