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Hello all!

 

I'm new to this forum. I had a stem cell transplant as treatment for a blood cancer) almost three years ago and have Graft versus Host Disease (GvHD) affecting various parts of my body, including scleroderma. As far as I know, it is pretty much the same as scleroderma that is not part of GvHD.

 

So far, it is quite mild and has not affected the external skin or internal organs, only internal soft tissue (tendons and muscles), meaning I find it hard/uncomfortable to flex my limbs - walking fast, taking clothing on and off, sitting on the floor, cross-legged, etc. are all difficult.

 

I am being treated with ECP (extracorporeal photopheresis) and now weaned down to only 7mg Prednisalone a day. I'm at Nottingham City Hospital (Haematology, rather than Rheumatology, due to the blood cancer). 

 

I had noticed some joint aching (elbows and knees) on waking first thing, while still in bed, but usually that disappeared once I was up and moving. But yesterday, I went on my bike for the first time this year, after a long period of not cycling at all. While my legs were fine, I had a lot of aching in my elbows very soon into my ride - less than a couple of miles, maybe even after a few hundred metres - I can't quite recall. It bothered me as I really want to get back into cycling, but if I experience that each time I cycle, I won't want to.

 

I've yet to raise it with my consultant, but just wondered if this is common and what people use to lessen it? I saw somewhere that swimming might help. Any other ideas welcome.

 

Thanks

Jet

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Hi Jet,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Graft-versus-Host Disease and I can sympathise with the problem of aching joints.

 

The link I've included to our Medical page on GVHD does have an interesting article on the relationship between polymyositis and GVHD which you may find helpful. Although telling my various doctors how to do their job is one of my simple pleasures, I have no actual medical training, so I can't advise you from a medical point of view. However, I would imagine that swimming is quite a good non weight bearing exercise for aching joints; I'm not a fan of this form of exercise myself and I would perhaps be a little wary of catching any infections from public swimming baths, particularly with a compromised immune system. I do understand the frustration of wanting to do exercise and the discomfort of aching joints preventing this.

 

I would certainly raise the problem of your aching joints with your consultant at your next appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Jet

 

Welcome and I am sorry that, having thus far survived cancer that you are now having to deal with lots of unwanted repercussions. Like Jo, I have no medical training, only 7 years experience living with scleroderma and that experience would suggest that you get the medical OK before exercising. I caused myself fasciitis by continuing to exercise when my scleroderma was on the rampage, who'd have thought that exercise would actually be harmful?! However, myositis (muscle disease caused by inflammation) can benefit from gentle, low impact exercise as Jo has already said.

 

I hope that you find the support and information you need.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jet,

 

Welcome to Sclero Forums!  I agree with Amanda and Jo entirely, as I am always prone to do. :D  This is an issue to discuss with your medical experts. As Amanda pointed out, there really are times when exercise is contra-indicated (although I know it sounds like heresy!).  Exercise can increase inflammation in systemic scleroderma, and that may be what you are encountering. It might also be that you just jumped in too fast and did too much too soon! 

 

Often our doctors will put us on a graded exercise program under the guidance of a physical therapist.  Lacking that, they should give you some clear guidance on how to proceed. Generally when I'm starting from scratch again to build endurance, I need to begin with just gentle moseys for less than five minutes a day, and then increase from there gradually, as I can tolerate it. So you can imagine, I was very impressed with how far you must have gone on your bike ride, even going a few miles would be a huge achievement for me.

 

One thing that happens when we are sick is that we try to use the same yardsticks as back when we were entirely healthy, and thus are continually perplexed as to why we can't do more. It's important to reset our yardstick and our expectations, so that we are beginning again from scratch and building from there as we can tolerate things. Otherwise, we are likely to send inflammation out of control and set our progress back.

 

It's still often possible for us to improve our endurance, but it is very important for us to seek medical advice before we dive into exercise, especially with conditions such as scleroderma and GVHD, etc. See this (older) abstract, Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress on PubMed.

 

Please keep in touch and let us know how things are going for you.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Jet,

 

I have joint issues and used to do lots of fell walking but can't do that now so I began cycling and find it does help because I'm not putting too much pressure on my joints. My consultant said it was okay and my general practitioner is quite supportive too but then he cycles lots!

 

I did only do a few miles to begin with and took it very steady but regularly do about 10 - 15 miles about 3 or 4 times a week now but I do live in a flat area so have no big hills to negotiate. 

 

Hope things improve for you soon.

 

Take care,

 

Buttons

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Hello Buttons

 

It's great that you've been able to build up to a serious amount of exercise. I have just started small exercises using a resistance band and the best thing about it is that my husband joins me. I never thought that I'd work out again let alone with him. Now it may involve me sitting on the couch or lying on the floor and what I do may be a mere warm up compared to what I once did but hey! Who cares!

 

Keep up the good work one and all!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I think both Buttons and Amanda make very valid points about exercise; I used to be incredibly fit, at the gym six days a week and running, running, running all the time. Ten to fifteen years on and my hip joints are basically shot (have just had one total hip replacement and another is on the cards.) Although my cardio vascular system is second to none, that's not an awful lot of use if I can't move out of a chair!!! -_-  :unsure:

 

Nowadays, although I do still go to the gym, I've toned the whole thing down a lot and like Amanda has said, what I would have considered a light warm up, now becomes my entire programme. So long as I can stay relatively fit and comfortable, I've decided that is more important than being Mrs Superfit! ;)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Jo & Amanda are right, its much better to do a little rather than none. I know it can take time to find the exercise regime that works for you but once you do I believe it makes you feel better.

Buttons

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