I don't know about anyone else but I am in excruciating pain. In bed and when I get off I can't move. Not even diagnosed yet. Only fibromyalgia apparently but the daily pain is a bind. Is anyone else suffering.
Cold Weather and pain: I don't know about anyone... - LUPUS UK
Defo fibro. Pain is unbearable. Just open ur eyes & u can't move. Even the bed hurts. The weather patterns seems to affect me big time. I so know how you feel. Sending u gentle hugs x
Hi tremarel. I know some of how you feel when you say even the bed hurts. I've just bought myself a memory foam topper (3 inch in depth). Still get a little pain on waking, but doesn't hurt like it used to. Took me a couple of days to get used to it, but now don't want to get out of bed. Too comfy! Lol Maybe one would help you? Best wishes, Fiona.x
Yes I have got one but still the same. If I wrapped myself in cotton wool I would still feel the same. I just bruise so easily too. Woke up this morning with a massive black eye. The joys of it all hey ! Lupus & fibro causes so much pain & then all the drugs for the kidney transplant causes added effects .
Thanks for your message great being in touch with so many people with similar problems
God Bless Keep smiling Hayley X
Hi Hayley, sorry I thought it would have helped even just a tiny bit of relief. I think I also have fibro as well, my gp hinted at it although my consultants haven't said so as far as I can remember. How on earth did you get a black eye? Sleepwalking, or did you sock yourself in the eye whilst asleep? The latter I have done, but not got a black eye with it! I guess your kidney transplant is in its early days as you're in so much pain? Plus of course side effects with the amount of medication you have to take. I sympathise as my father had kidney disease for quite a few years and was on a lot too before and after transplants. Try and rest as much as you can, don't overdo things. It is nice to chat to other people on this and other forums who know and understand what each of us are going through to some extent. Also nice to have a good old moan and a chuckle about everything and anything! Family never seem to understand no matter how much you try to explain what is going on. Seems easier talking to someone outside of family somehow don't you think? Best wishes, from Fiona.xx
I always have bruises cause my platelets are low from the long term use of steriods. If I just touch my skin I bruise. The lupus probably got a lot to do with it too. In so much pain last few days with the fibro it's because of high & low pressures over the country . I can tell the forecast before I see. Ridiculous really. Yes defo great to chat, moan & laugh . You are right family just don't understand do they. I've had my kidney 20 years coming up its been great but other things do come along after having a transplant. Anyway Fiona great chatting all the very best God Bless Hayley x
Sorry to hear you're feeling bad, hang in there - I too am affected by cold, and every year I dread it more!! We had snow this week, which explained the days and days of pains 😖 I was diagnosed with fibro first, new dr figures it's all part of the lupus - I just want to be able to function. I wish you more good days than bad ones... i have found once I learned to know my triggers and limitations that it has been a little easier - at least I know when to rest, and it gives me some chance to manage it - meanwhile I suggest heavy blankets, something wool to snuggle up in, warm tea and prayers for a mild winter. Know you're not alone, and it gets almost manageable (fm/lupus) as you start figuring out your new normal. Good luck, stay bundled and toasty.
Never use the term "only fibromyalgia" there is nothing trivial about this debilitating condition and I hate that it seems to be treated as such by the medical profession. My lupus is currently in remission but I feel just as ill with fibro. Apart from blood tests being negative and there being no threat to vital organs it is just as hard to live with. Like you I struggle every day.
Wishing you a better phase very soon once your body adjusts to the Winter.
Hi there thanks for your response. I'm in rebellious mood today with pain.
They tell me I don't have Lupus so yesterday with a little bit of bright sun I put my face to the windows for a few minutes.
Today a raging rash on both cheeks and low blood pressure and pain so staying in bed.
I meant to take 7 tablets by now haven't taken any. Just fed up
Cold is the worst! And once I get cold it's takes hours to get a little worm I have my heat on 72• hubby is sweating dogs are panting I'm in fuzzy socks house slippers long pj bottoms shirt and under a thick blanket and still cold so cold my bones feel like they are breaking an soo stiff! And I always loved the winter
Sounds like my house. I have an electric throw on my easy chair and use it constantly. I even go camping in the trailer with me. My husband bless his heart bought me a pair of electric gloves. They have a rechargeable battery in each so I wear them all the time. By the way I hate winter and cold.
Also I just found a thing that looks like a heating pad but goes across the foot of the bed and has elastic on both ends so it wraps around the foot of the bed and doesn't come off,and also seen what looked like a heating blanket but was in fitted sheet form so it keeps the bed worm! A lot of people have said the got a pregnancy pillow the long one and it helps with back,hips,shoulders pain.
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