Hi everybody, I am fed up!! Its the aches and pains today, actually these past few days, its my shoulders, neck, hips, knees and ankles. Does anyone else get fed up? It is really frustrating, 5and half years ago I could cycle 18 miles two or three times a week, I could walk anywhere I liked, no problem, run up and down the stairs, chase after my granddaughters, get down and up!!! off the floor, touch my toes and stretch in any direction. It really hit home today that I can no longer do any of those things. Every night I sit on my own and with the greatest will in the world I find it very hard to pick myself up every time. I received my copy of the SRUK yesterday, always an interesting read, looks like there is plenty of research happening, in fact I am taking part in 3 different studies at the moment, hopefully it will help sufferers in the future. Well moaning over, take care everybody, stay warm and my latest pick me up is "smile and wave folks"
ACHES AND PAINS: Hi everybody, I am... - Scleroderma & Ray...
ACHES AND PAINS
Yup. I began a long list of complaining how I was and how I am now. I guess 'Smile and wave' is a good maxim to live by as friends & relatives are powerless sad & frustrated too.
Thanks for taking part in research lets hope you unlock a few clues to our maddening state. 🤗
Morning, still hurting but determined to go out and do some window shopping and perhaps some lunch. I do not like weekends everybody seems to have somebody. But here goes "smile and wave folks, smile and wave.
Yes most definitely. I am only 38 yrs old, I too used to run 5 miles 5 days a wk, gym, swimming, look after my 5 children and work, the only thing I still do is look after my children and my god that takes so much out ofor me. My whole life has completely changed,,I've had to except the new me. I get sick of the pains, the last week my legs and feet have been in terrible pain, I can hardly walk, having to limp around. All I seem to do is moan, I try not too but I just can't help it. Family and friends really don't understand, I don't expect them to but sometimes you just feel alone. Sending you hugs
Morning, still hurting, I am 60 yrs old, and sometimes feel a lot older, but I am going to do some window shopping and perhaps lunch. Don't like weekends everybody has somebody. Thanks for your hugs, I guess that's what I miss most is the physical hugs, but yours are very welcome. So "smile and wave folks, smile and wave"
God those aches and pains!!! You are right they never stop, just keep on. I'm in my late sixties and I still get very frustrated by this disease, added to which its induced Pulmonary Hypertension so I huff and puff most of the time. Family really do not understand I guess because we look okish they think we are??? I am now up to cycling on my Rekumbant byke 2 miles 5 times a week, I am finding this does help. I'm off to the Royal Free once a month for 6 months taking part in a drugs trial as well, and I am also taking part in another trial for Raynauds so let's hope it helps others? I feel it's a way of giving something back, as I can honestly say I have had superb care, and generally I do feel better. As you say Wave and Smile Smile Smile😃😃
Replying to fairy56. Totally understandable about being fed up. Some days you wonder if it will ever end and why it even happened. That's my only real question. Why does this happen and what caused it? Then the last question is why doctors and researchers have not come up with a solution yet.
Again, have taken the Gingko, Garlic and Butcher's Broom pills purchased at Puritan's Pride website after reading from another individual who said it eased the pain a bit. Now taken for three days and it has eased the severity of pain and coldness. Hope and pray it continues.
Blessings to all of you and thank you for any and all comments.
I get you, totally. I fact I'll bet anyone of us sufferers will feel this way, at least part of the time.
I'm lucky as my partner's Mum is a Raynauds/Sjorgens sufferer, so my Raynauds/SSc is barely different. My amazing girly is a patient and loving creature, who puts up with my moaning and quirks as if they're not even there. We're in fact two very lucky women to have found each other, me more so, at least in my mind.
What I was trying to say is that you're not alone, no matter how much that belief seeps into your life. It's only a small thing, but we are always here for you on this forum. So moan, and moan some more as we'll never tire of you.
Much love,
Charlie.
Hi fairy56
I know exactly what you mean - its the silly things like not being able to reach down and get things out of the back of a low cupboard or pick things up off the floor!!!! I have now classed myself as officially 'old' and succumbed to using a walking stick when the pains are particularly bad. You feel as if you are on your own but you really aren't - we are ALL here with you! If you can, find one social group you can join even if its only one day/evening a week. Smile and wave but dont feel you have to 'cope' alone - there are many of us out here so use us. Another week dawning - hope it's a better one for you. Sending you positivity and strength.
Art student and struggling with controlling my raynaud's
This was written by someone on the Lupus Site ::: So Scary = how are we going to cope!!!
Raynaud's and Hives? 
Fed Up
