I was diagnosed with Scleroderma last... - Scleroderma & Ray...
I was diagnosed with Scleroderma last year, do other people feel exhausted some days, as I feel as though I have no energy at all some days
Totally wiped out some days. Could sleep the clock round. Often have to have a rest during the day.
Join the club. We all feel exhausted, sometimes more, sometimes less. But I have found that if go through the feeling and do something (not boring) it's better.
Yes, I agree that you can't always give in to it. I am finding grandchildren's holiday childcare particularly wearing this year, but that may be because I am a year older!! However, I just have a nice warm, relaxing bath in the early evening and go to bed early to compensate. If I am going out in the evening I have a rest before I go.
I agree about holiday childcare - as much as I love my grandchildren! At the end of the day, after they have gone, I lean on the closed front door and breath a sigh of relief I am so exhausted! Sometimes I have no choice but to give in to it because my body seems to close down.
Well, nearly four months after developing severe Raynauld's Phenomenon in my left hand and then developing pain and weakness in that arm, after more blood tests than I've been able to keep track of - until my GP believed that I was in the early stages of Scleroderma and ordered yet MORE blood tests, yesterday, I was told that the latest results show that I'm, 'borderline,' for Scleroderma......In other words; I MAY go on to develop Scleroderma - but then I may not. Meanwhile, the pain & weakness continues in my left arm and the Raynauld's continues to render my left hand useless - and there's nought my GP can do...... I have to up the daily dose of the Gabapentin I've been taking for years for my spinal condition. See whether that makes any difference......
I so HATE uncertainty! Been too much a part of my life. Especially these last nine months. Since my elder son was told that he had cancer. Seemed that no-one could agree whether he had Hodgkin's or Non-Hodgkin's Lymphoma - and kept subjecting him to all manner of diagnostic tests. He endured so much pain as they subjected him to all that. And then - just four short weeks after initial diagnosis - he died, suddenly. Massive pulmonary embolism.
His Death Certificate states that he had Hodgkin's - but the doctor who tried to save him, when he was rushed to the ED that awful day, said he wasn't absolutely CERTAIN that it WAS Hodgkin's......
And now no-one can tell me why I have all the manifestations of Scleroderma, while the blood results are inconclusive......
Dear Lord! It's FRUSTRATING!
Dear meggi56, you ARE having a difficult time indeed and it does not help the Raynaud's. My husband my help, is having a coronary by-pass operation on Friday.
My GP wrote me up for Amitriptalin, a small dose. It takes off the edge of the pain, makes it more bearable.
Oh how very very sad to hear your son died. I can imagine all too well how raw you are. It is bad trying to come to terms with losing our parents. It is so unjust to lose a child.
I have probably had scleroderma for over 20 years because this was when raynauds and swallowing difficulties started. The pain in my hands was unbearable. There was little I could do without awful pain. This is now much much better. You will probably find that the a arthritic symptoms will come and go. Also, you can wake up with say, a toe so painful that you cannot walk. It can be symptom free in a day, a week, or a month. The fatigue seems to persist throughout unfortunately. I am 63 and coupled with scleroderma ( mine is Systemic Sclerosis). I find this very limiting in daily living. I live alone so not much help available.
But with regard to your borderline diagnosis; Scleroderma is not proven with certainty until the pieces in the jigsaw so to speak, fit together. As more symptoms appear to fit the criteria that goes towards a definitive diagnosis, you will be deemed to have it without any doubt. As I said, mine started over 20 years ago, but was only diagnosed with certainty 10 years ago.
I hope you stay on this site. None of us get to discuss Sclero' very often. It being rare. And it can be a very lonely place since people do. Not understand the complex nature of the disease and how debilitating it can be.
My very best wishes to you.
Thank you for being understanding.
I had plans for my autumn years: walking the long paths in the wilds. All that sort of thing......Then my spine began to degenerate. And then my son got cancer and died. And, no sooner had we interred his ashes, than my left arm & hand began to go dead!
Now I'm told that I DON'T have scleroderma - but I might develop it......Taking extra Gabapentin - advised by my GP. All he CAN advise.
Been MADNESS here today; had glaziers replacing bathroom windows and engineer trying to replace extractor fan unit -that failed four weeks ago.
Then the phone rang -and it was someone trying to offer my husband a better deal in his bank loan - which he took out in order to pay for our son's funeral......
I can't deal with THAT!
I am SO confused right now! May have scleroderma - but may not......Just keep taking the painkillers......Meanwhile, I feel like SCREAMING! Especially around three in the morning - wide awake and in pain.
Fatigue is one of the most common symptoms of scleroderma. As many other people have said you should listen to your body. Fight it up to a point but not so that it makes you feel ill. The hot weather although a welcome change from the cold has been particularly draining and just saps my energy so that I really don't want to do anything except lie down but then I can't sleep at night!
At our most recent support group meeting, our rheumatologist told us that chronic inflammatory disease creates chronic fatigue. I call it "malignant fatigue," but still, you're not alone.
You are not alone as, there are many of us who have, will or already have experienced these symptoms. With scleroderma we always have some degree of fatigue. We all are special chapters in this big book called, dealing with autoimmune diseases. We all will share many of the same system at one time or another. Then many will experience things other haven't and may never and that is why, we are all special. I have days when I ask, why am I so tired when I haven't done a damn thing...then I laugh at my self and say, your dealing with scleroderma silly. It's your bodies way of saying rest. There is nothing that important in life to make your self any sicker over. You may wake up the next day filling 100% better. With this disease you'll find you can't do things like you use too! Keep your chin up...you will figure things out as, you face each day. Positive thinking and positive people is what you need to surround your self with now!!
Hi Jeano,
Have felt the same as yourself for many years before I was diagnosed. I used to tell my work collegues that my middle name was "Tired". I thought it was because I was a very poor sleeper but that too was as a result of the autoimmune disease. I was relieved to finally be able to put a name to my many problems.
In answer to your question as all the previous responses, yes indeed. We all know how you feel as we feel exactly the same most of the time. Make sure to rest, go with the flow. Sleep when you need to and don't beat yourself up. It's part of the illness and you will soon find ways to cope.
Let friends and family know how you are feeling. They may or may not fully understand but they will support you if they care. Most of all, be kind to yourself.
All the best.
Graygirl1
I was diagnosed with Raynuad's and Scleroderma 12 years ago and whist I received treatment I am truly run down some days. Other days I can cope with all that life throws at you. Visually I look fine so others cannot understand that I am not able to do the things that they think that I should do. It is worth noting that any drug is invasive and that the body with do it's best to reject it, that in itself is tiring for a fit person let alone one with Raynaud's and Scleroderma. There is no simple cure so I take everything day by day and enjoy what I have and try to keep positive. Not alway possible I know, but we must try.
I am exhausted every day. Due to this and heart failure so I am just drained of life constantly. It gets me down loads as U can probably imagine
Thank you for your reply, and I am sorry to hear that you have got heart failure as well, one thing is enough to put up with.
I was diagnosed with scleroderma a couple of years ago after a few years to trying every other avenue. It didn't show up in my blood until this year but lots of other complications did. Tiredness comes with the disease, just need to be sensible with what you can do and when you can do it. Being positive is the best medicine, life is much too short to sit around worrying about it. Not many people understand the uncertainties of this disease and it can be very mind draining. But we can use this forum for a sounding board where we can help each other. As long as we don't all feel down on the same day we will be fine! Sending some positive thoughts to everyone out there.
I get totally wiped out too and some days I do sleep the clock round!! I have to, else I could not carry on - or so it seems. What I do know is that I find it very hard to keep working almost full-time (have recently dropped 1/2 a day per week which I take off as 1 Friday per fortnight) and see to everything at home myself (am not married, it managed to pass me by somehow) without getting exausted. I agree that 'doing something that is 'not boring' helps, but my body will just shut down sometimes and sleeping is all I can manage to do. I also get stressed by it all, which does not help and, in itself, can cause tiredness I believe. I get frustrated as even my GP (female, same age as me, has Raynauds) says that she still feels the tiredness is due to age as she doesn't feel like doing anything at the weekend. Foolishly, I feel undermined by that and I worry that maybe I'm just not strong enough, or resilient enough. But in my heart of hearts - and thank the Lord for this site and the wonderful fellow sufferers on here, I know it's NOT just age and stress. I, by the way, am diagnosed with limited SSc.
maggie56 I am so sorry for your loss and the fact that you are ill too. I cannot imagine what it must be like to outlive your child. I can only hope that your pain and sorrow will lessen with time and hope that you are getting some help for your grief and pain if not for the scleroderma. I am now going to possibly seem rather callous for asking, if I may, when your scleroderma symptoms started please? I ask because it seems that a lot of people can date the onset of their symptoms to a very stressful event. I can, even though the events (2 in my case) occurred when I was 11 and 12 years old. The first rheumatologist I saw thought I'd had it since childhood (and he only knew about one of those events - the sudden death of my father) and, looking back, I think he may well have been right. I am thankful that mine is the slow progression type.
Love and good wishes to you all.
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