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Scleroderma & Raynaud's UK (SRUK)

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Has anyone got PBC, Raynauds, Scleroderma and Fibromyalgia?

Maggs3petts profile image
11 Replies

I have all of the above and I'm just wondering if anyone else out there has the same. Also have, asthma, sciatica, sjorgren's, hiatus hernia, depression, insomnia, think that's all.

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Maggs3petts profile image
Maggs3petts
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11 Replies
lynbw profile image
lynbw

Yes Maggs, i have the same !but i am on anti depression tablets .i have also just been diagnosed with fiber nuropathy . i know what you mean it all seems to much to cope with. do you take the meds for fibromyalgia , they do help with the insomnia. all i can say is keep your chin up ,the summer is coming and life will seem a lot better .at least we can get out a little more ,you can get through this , do your family support you ?mine make my life worth living, take care lots of love to you , hope you feel better soon . lyn

Maggs3petts profile image
Maggs3petts in reply tolynbw

Hi Lyn

I'm on two different anti-depression tablets, plus co-codamol, arcoxia, pizotifen, ursodeoxycholic acid, Lanzoporole, Tramadol 100's, Zolpidiem, Adalat + sumitriptan when Migraines persist and inhalers for asthma. I know there are many in worse situations and I got fed up taking the meds so I stopped for a couple of days. Could hardly move or touch anything or let anything touch me and the pain was terrible. So went back on them and I know not to try that again. I was just so tired taking pills and more pills but they're here to stay. My brother and his wife live across the road and they are very good to me. My brother is in a wheelchair with an aggressive form of arthritis - it moved so fast and that even the Doctors were unprepared. When the nerve traps in his lower back he is paralysed from the waist down. But they still look out for me. Their sons are also very good to me too. The older two are over 6ft so when I need 'a big tall person' to reach something for me, they do it. Love to you to, Lyn. xx

lynbw profile image
lynbw in reply toMaggs3petts

Sorry i am late with a reply , bless you it is so hard to cope at times , it is at times like this when i am sorry i don't live near some people who need support when they really need it , sometimes it is nice to have a coffee and a chat . i am so lucky my husband has now retired to look after me and make sure i keep safe . i love my garden i look like a robot with all my gear on !but i wont give up on it it calms me to see every thing grow . i wish you all the best please take care if you want to e mail for a chat i will send you my e mail address all love and best wishes lyn x

Maggs3petts profile image
Maggs3petts in reply tolynbw

No worries, Lyn. Its just good to be able to 'talk' with people who understand. When people ask me how I am, I just say, "Fine" cos it would take all day to tell them then they'd think I was a hypocondriac . Yes it would be great to have your email address and chat about common illnesses. I live alone but I have a cat called Kitkat and a wee dog called Caiomhe (pronounced Keva) it means gentle which she is. xx

Hi, I have PBC, Scleroderma, Sjogrens and hypothyroidism. Just off to walk in centre with conjunctivitus and ear infection from the flu!

Maggs3petts profile image
Maggs3petts in reply to

I know, I get so many infections because of the auto-immune disorders I have. Its usually my throat or a kidney infection. Hope yours clears up. All the best (:-)

EOLHPC profile image
EOLHPC

I do feel for you bigtime. All sounds kinda like me too: SLE, raynauds, vasculitis, sicca symptoms, chronic fatigue, hypermobility, predisposition to chronic infections etc etc, with SLE diagnosis only in the past year (turns out i've had it all my life - am now 58) following on from a lifetime of multidisciplinary treatment by NHS specialists (+ lifestyle management on advice of later native practitioners re meditation, posture, diet, core stability exercises). Almost a year on plaquenil 400 dily has made all the diff (more diff than all the meds tried on me over the decades inc antidepressants) to the aches & pains and finally knowing my primary condition (SLE) has Los helped my depression: ok, so nothing happy about lupus, but at least now I know I'm not a hypochondriac partly predisposing myself to all this stuff.

We aren't alone, and our solidarity can make all the diff

Take care

Maggs3petts profile image
Maggs3petts in reply toEOLHPC

So true Bamclown. I get all the infections of the day, too. Mostly throat and kidney. Once I had three kidney infections just one after the other but thank goodness haven't had one in a while now. I'm on about 30tablets/day. Adalat, Arcoxia, Co-codamol, Diazepam, Pizotifen, Sumpitriptan, Tramadol, Zolpediem - think thats all. I get fed up taking them but without them I'm in agony so just have to make sure I take them. Apparently I've had some of my illnesses/conditions most of my life, too. Also, I lost a baby when I was 16wks pregant in January 1978 and the Scleroderma has something to do with that too. Plus now they're saying that having Rhesus Negative A while my husband was O positive may have caused antibodies and this could be the outcome of it all. Our solidarity will make all the difference. Knowing someone else feels the same as you, helps. Thank you (:-)

raynaulds profile image
raynaulds

i to have all your problems and more besides i cant goout shopping cant go into chillers and i have deformed bones my heart goes out to anyone asi wouldnt want poeple to sufferlike me i have to wear agloves permanently

Maggs3petts profile image
Maggs3petts

Hiya Raynauds

I too have more problems than Raynauds, Scleroderma, Primary Biliary Cirrhosis and Fibromyalgia. I also have Arthritis, Asthma, Depression, Hiatus Hernia, Insomnia, Migraine, Sciatica, Sjorgren's Syndrome and Telangiectasias - think that's all. Just after Christmas I had problems with my pancreas so I have an appt to see my Consultant on Thursday, 3rd May, so maybe know more then. I keep oven gloves beside the freezer but mostly get my wee nephew to open it and get things for me. Makes me cold just thinking about it. I've had Raynauds for about 25yrs now. Also had Endometriosis right up until two years ago when I finally got through the menopause. I attend four hospitals + my GP and they;re all really kind and I know they are looking after me and really we can't ask for more than that, can we? All the best, M (:-)

sleepytink profile image
sleepytink

yes I have all of those too except thankfully not asthma, but Chronic Fatigue to add and although I often reckon if I saw another three specialists I could add another three diagnoses to the list ! in my world I just have a broken immune system and wish I could find someone to fix it , stay safe and sane.

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