I'm still coming to terms with fibro as a condition I have, along with ME. Still trying to figure out what can be explained by fibro and what can't, and whether ME/CFS is a separate thing for me.
So, do others get a horribly sore throat when a flare is starting up? And are others do sore at night that every time you move/twitch the pain wakes you up? My joints are very sore and in the morning my hands are more like two paddles - I have so little control over their movement and fingers. Sorry for tmi but when i go to the toilet in the night I don't wash my hands because i can't use the taps. My body feels like something I drag along with me...
So tired today ...
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Pollymolly
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I have dual diagnosis of fibromyalgia and chronic fatigue. I have sore throat too, also itchy ears, dry eyes, I have swollen stiff and painful hands all the time, but worse first thing in the morning. GP says its all fibromyalgia.
Milly do your hands also feel pretty weak lots of the time, like you have to work harder to hold things, pick things up etc? I had an ultrasound which picked up synovitis (fluid), but that didn't seem to be relevant to anyone unless i had inflammatory markers in my blood (which I don't). But I didn't used to have sore joints. This is a new thing. Hooray.
Yes my hands are weak, i drop my knife n fork spoons, all sorts of things, i have tendonitis and went through a trigger finger op, it went wrong, so had to have it done again, thats my right hand buggered for life, my left hand is doing the same, needless to say i am not getting that one done. So if minor procedure offered think first. Its very painful
on my medical notes they keep referring to my reluctance to have surgeries on both of my shoulders as if my shoulder problems are my fault .and would be fixed if i had the surgery but i have met people in hospital who it was claimed to of had successful ops and have then ended up at pain clinics taking morphine to get through their day. surgeons do not have to live with adverse reactions .so any op where you leave the operating theatre alive is a success to them.
I had synovitis picked up in my joints last year with nothing showing in my blood and was treated with strong drugs by Rheumy for sero neg RD. This year they decided without explanation I havent got this at all and discharged me back to GP. I feel like a guinea pig. I am waiting for re-referral as my pain and joint stiffness are still the same (if not worse). Gentle hugs Joolz.x
itchy ears/ dry eyes-yes- the burning and itching all over really is bothering me! My orthopedic surgeon said my symptoms can't be explained by the nerve compression in my spine so he thinks fibro and has recommended a particular neurologist he has worked with. He thinks a certain medication might help. However, I often have bad reactions to meds- one med a dr promised would do wonders for me had me end up in a doctor's office 3000 miles away -on vacation(no emergency room near by). I have a vacation in 2 weeks and an important event a week after that. I would rather continue to deal with this as best I can until that time . I will make the neuro appt(can't say when I'll get seen anyway), at least if I start the meds here at home- if I have a reaction or scary side effects(soaring blood pressure, uncontrolled vomiting) I am close to a great hospital(we would drive but I can walk there!) and any number of walk in places- plus my own doctors.
I am aware that fibromyalgia can cause swelling of the hands which causes synovitis i have the inflammation markers.. but they're ignored! Sorry to go off on one!
Hi Milliepeede,
Have you got an OT, you should be entitled to proper taps to make your life a little easier in both your bathroom and kitchen, wether you home is rented or private. Pls get in touch with the Social work department and ask to be assessed.
Hi Ryanbone.. I am in touch with OT, however its the darned social worker I have problems with. He has not kept appointments, I complain about him, but nothing happens, and now theyre strapped for cash, I doubt anything will happen, I can't fault OT or my local council, they've been wonderful
My mother has no social worker, she only has an OT, the OT has been brilliant, adapting the house for my mum's needs. You don't need a social worker, not one that keeps letting you down anyway. Make a complaint by letter, that way you will have evidence which you keep.
Pls get back in touch with your OT and asked to be reassessed. They have a duty of care to you. Don't be fogged off with them saying that they have no money, your needs are priority.
Go and see the CAB, they will give you good advice. Fight for your rights and what you are entitled to.
I am so genuinely sorry to read that, and I also get a tickly, dry sensation in my throat and my eyes get very sore and weepy. I want to genuinely and sincerely wish you all the best of luck.
Thanks all. I did wonder if I could use the throat pain as a warning sign to stop doing things and rest, but it's usually too late by the time it starts. It's strange. And if it's an immune system thing, why isn't fibro considered an autoimmune issue?
Arymretep they seemed to be thinking arthritis but after clear blood tests they've put it back in the fibro basket. My daughter (20yo) has just been diagnosed with osteoarthritis, but I've just had a clear knee xray so she didn't get that from me!
Interesting you got the RA drugs Joolz - were they helping at all? And why on earth have they suddenly changed their mind? Money?
I have more to say but major work stuff to do today (the prep caused this flare and I'm terrified I won't get through it ). So more later x
hi polly commissurations im the same its soooo debilitating
i had too take aging mog to the vets today 40 mile round trip and im cream crackered . they are sleeping it off== im shaking with the stress emmee mious loudly every 3 seconds there and back poor puss .
i dont know how much longer i can do all this .
i took the cats capsules for her bladder stress instead of my stress relief ones lol .
one suggestion is to have lever taps put in both upstairs and in your kitchen if your in a house with other people they can close taps too tightly. in the really bad months all over pain sore throats and finding it difficult to get to sleep and stay asleep for any meaningful amount off time was impossible. i think i have started a milder period at the moment but still having interrupted sleep. until you can get your taps sorted you could use wet wipes or a self drying alcohol based cleaning product both come in easy to dispense form. to prevent picking up more infections which no one with m e needs
Empathic sympathy to all of you. I am typing this with one hand coz am waiting to see hand surgeon tomorrow for yet another steroid injection for my writing hand. Over the past 10-15 years have had 3 carpal tunnel ops and many injections. The right hand is starting to go the same way too.
Re the sore throat and pain on waking....yes, this does happen and seems to be common for lots of us. It is so frustrating when medics do not take us seriously and treat us like "guinea pigs" with questionable cocktails of drugs. Through tough experience, I would advise keeping these to a minimum, because side effects often add to the physical and mental pain we have to live with.
Usually, I am a really positive person with a wicked sense of humour. However, with several weeks of broken sleep and constant pain , relieved occasionally with Tramadol - I now have "The Black Dog" on my shoulder, and having to take a higher dose of Citalopram (one of the safer anti-depressants) - still quite weepy though.
Heaven knows how anyone copes with these symptoms on their own...I really feel for you. My partner is such a kind person and although he does not really understand how bad this is, he is a great help.
Really hope that life improves for you all - and that your Doctors do not pass it all off as Fibromyalgia.
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xxx
). So more later x
Pain and fatigue
night pain
Knees, calf and leg pain
In pain
on the night shift again
