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Did you know that exercise increases inflammation in systemic sclerosis?


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New Member with Limited Scleroderma


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#1 dot

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Posted 04 January 2011 - 12:07 AM

Hello, I'm a new member and I have CREST/limited systemic sclerosis, diagnosed in 2006 when I developed chronic fatigue and a blood test showed I had anti-centromere antibodies. I have had Raynauds for about 18 years, and in the last few years I have had oesophageal reflux which has resulted in Barrett's oesophagus. I have had a couple of small calcinosis lumps on my fingers.

I am on omeprazole which controls the heartburn to a large extent. My biggest problem in terms of daily life is the ongoing fatigue. It does fluctuate and it is not as bad as it was back in 2006, but I have not got used to the huge reduction in my quality of life. I was a very active person until 2006 and now I have comparatively little ability to do the active things which gave me pleasure and fulfilment. The specialist I see has told me that fatigue is not typical of CREST, and so I do not know if I have CREST and chronic fatigue as two separate problems, or whether the CREST has been causing the fatigue.

I would be interested to hear whether other people with CREST have had a similar experience of fatigue. If the CREST is causing my fatigue, and CREST is a lifelong condition, does that mean I will never feel any better and never be able to get back to enjoying an active life?

I would like to hear from some of the other members, because I have never actually met anyone else who has CREST. Thanks for reading this.

#2 Joelf

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Posted 04 January 2011 - 03:26 AM

Hi Dot

A very warm welcome to these friendly and informative forums!

I'm so sorry to read that you've been diagnosed with Limited Systemic Scleroderma and Raynaud's but now you've found our forums you will find that you are not alone and you will be able to make many new friends who are suffering with the same condition, one of whom is myself!! :)

We have an interesting link HERE regarding Limited Sclero/CREST which I hope you will find helpful. I think you will find that a lot of us who suffer with Limited Sclero also have a problem with fatigue; before I was diagnosed and on my medication I found that the overall tiredness and joint pains were one of the worst aspects. Like you, I have always been a very active person and I found that even going to the gym (which is one of my main pleasures) was becoming much more difficult. However once I started taking my medication it gave me a new lease of life!

Although I'm not a doctor (I do have a current first aid certificate but that's the limit of my medical training!! ;) ) I would say that it is certainly possible for you to enjoy an active life again; albeit not perhaps to quite the same intensity. I find that I have to pace my exercise a lot more than I did; I'm afraid my half marathon running days are over but that doesn't mean that I can't still run regularly and join in the circuit classes. Unfortunately my lungs have been affected by Sclero, so I'm very careful not to overtax them; making myself heave during exercise is not a good move!! :rolleyes:

Are you seeing a Scleroderma specialist? Sadly many rheumatologists are not experts when it comes to a complex and unusual disease such as Scleroderma, so it is really important to get a referral to a Sclero specialist.

Do please let us know how you are faring; I'm looking forward to reading your future posts and getting to know you.

Jo Frowde
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#3 Jeannie McClelland

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Posted 04 January 2011 - 03:32 AM

Hi Dot,

I'm glad you joined us. Happy New Year and welcome to the Forums.

We have a lot of info on Fatigue because it seems to be a universal symptom of scleroderma. I don't have the CREST variant, so I can't speak from that viewpoint, but I'd be willing to wager, oh, at least a week of warm and sunny weather that the folks here who do have CREST will say they have fatigue too.

If you look at the Fatigue page, you'll see there are many ways to treat it. Many of us have had success with hydroxychloroquine (Plaquenil), for instance. I've found that having a very gentle exercise program has helped me to maintain my overall physical condition and lessen the fatigue. Diet seems to have an effect too and improving my nutritional status by keeping an eye on my protein/carbohydrate ratio has helped. (I'd live on tea and buns if I could!)

I don't think you should accept that your overwhelming fatigue is OK, because it obviously isn't. How about going back to your doctor - as often as it takes - and making him address the issue? And if he/she can't, I'd ask for a referral.

Best wishes,
Jeannie McClelland
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#4 Amanda Thorpe

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Posted 04 January 2011 - 08:59 AM

Hello Dot

Welcome to the forums! As already said fatigue IS a scleroderma symptom and the fact that your doctor said it isn't just shows their lack of scleroderma knowledge. Maybe consider getting referral to a scleroderma expert as Jo has suggested?

It's sad and understandable that you say you feel your quality of life has declined, you may find our resources on emotional adjustment helpful.

I was diagnosed in 2007 with diffuse scleroderma and although my life is forever altered I refuse to see it as a bad thing. I was 39 when diagnosed and forced to use a wheelchair, 40 when given ill health retirement frm a loved 20 year career, 42 when diagnosed with myocardial fibrosis, subsequent heart failure and given a pacemaker. Who knows what turning 43 this year will bring!

Fatigue ranges from annoying to debilitating, it is ever present and persistent. Some days I do very little some days I do more, neither of which I have any control over.

It helps to do some horizon adjusting when scleroderma moves in because let's face it, this unwanted house guest is never going to leave! What do I mean by horizon adjusting? Well trying to focus on what we can still do and what we still have rather than what's lost. There are things lost that we will never get back but there are things gained that we never would have if we hadn't lost. Don't get me wrong I am not suggesting a whitewash in which we pretend all is well, we have to acknowledge and grieve our losses before we can receive and celebrate our gains.

Despite what's happened and what's to come I am determined that there is still good life to be had after scleroderma, it's just that life looks nothing like I thought it would be that's not necessarily a bad thing.

Take care.
Amanda Thorpe
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#5 Shelley Ensz

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Posted 08 January 2011 - 03:27 AM

Hi Dot,

Please bear in mind that I have no medical training at all, not even a current first aid certificate, like Jo. However, it is a proven fact that systemic sclerosis (systemic scleroderma) can cause fatigue. Some people seem to have negligible fatigue, others of us (like me) can have incredible fatigue. At one point, even prior to diagnosis, I was bedridden and in a wheelchair for a year because my fatigue was that completely unrelenting.

I'm with the others, thinking that you need to be dealing with a real scleroderma expert. It's always possible you may have more than one thing going on (I certainly do, as I have multiple autoimmune syndrome, including diffuse scleroderma) and if there is something going on even more than scleroderma, a expert should be able to detect that.

There are outstanding scleroderma experts in the U.K. so there's no reason for you to suffer without the most knowledgeable care.

Something you might want to consider, too, is starting a thread asking people how they cope with fatigue, as it can remain a pesky thing to cope with even with the finest medical care and medications.
Warm Hugs,

Shelley Ensz
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#6 dot

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Posted 08 January 2011 - 09:49 AM

Thank you Jo, Jeannie, Amanda and Shelley for your helpful and supportive replies.
Your comments have increased my belief that my fatigue has been a symptom of scleroderma and not a separate illness. I have been wishing the opposite was true, because I might then have more hope of recovering from the fatigue and getting back to the life I enjoyed a few years ago. I was a keen runner, up to marathon distance, till this hit me in 2006. If it's part of the scleroderma then I probably have no hope of getting back to the physical fitness which was such a major part of my life. I need to find some way of accepting that and adapting to it but I'm finding that process very very hard.
The connective tissue disorders specialist I have attended may have been reluctant to attribute all my symptoms to scleroderma because it is seems to be a disorder which varies a lot from individual to individual, and I realise that fatigue is a fairly non-specific symptom which can have various causes. I will discuss it again at my next review at the hospital.
Thank you for your interest and friendship. You are the only people I "know" who also have scleroderma!
Dot.

#7 Jeannie McClelland

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Posted 08 January 2011 - 10:10 AM

Hi Dot,

You might not run marathons again, but I wouldn't rule out running altogether and maybe even get back to marathons in time. I believe that with a proper exercise plan (agreed to by your doctor), you can regain an amazing level of fitness and stamina. For me it meant doing pulmonary rehabilitation, but it paid off in a big way.

There was an incredible fellow here in the USA who 'ran' a marathon hauling a cart with oxygen on it. His support crew along the way would swap out O2 cylinders as he went. He didn't finish first, but he finished. If I recall correctly, he was also running at altitude. I wish I'd saved the article~

I have both pulmonary fibrosis and pulmonary hypertension. Exercise is increasingly hard for me, but I know that if I don't exercise, I'll be really sorry. It's good for the heart and lungs, fit muscles use O2 more efficiently, and exercise releases those lovely endorphins that make me feel good mentally and minimize the aches and pains.

Coming to grips with the effects of a chronic illness is a good thing. It helps you plan work-arounds, find other activities that are fulfilling, and allows you to make whatever changes to lifestyle and attitude that enable you to be as healthy as possible for as long as possible. But (and a big 'but' as far as I am concerned) lying down in front of the steamroller and waiting for it to flatten you is not a good idea. Fight back and fight for what you want.

It's nice to be getting to know you. Post often!

Warm wishes,
Jeannie McClelland
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#8 chockers

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Posted 14 January 2011 - 02:24 AM

Hello.

Have you got an overlap with it? I have fatigue but I have R.A as well and it's part of that.

I have scleroderma, could be CREST. You might have a little something else as well. Check your CRP (C-reactive protein) and ESR (erythrocyte sedimentation rate) levels and check your iron levels as they will go down if you are flaring with something.

Chris.