Limited ssc: Hi guys. I have limited... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Limited ssc

vesna37 profile image
12 Replies

Hi guys. I have limited scleroderma and interested to find out which type of exercise is the most suitable for this condition. I was thinking either hatha yoga for beginners or easy yoga. I red a lot of positive comments about thai chi here..Also do you have any experience with hopeopathy or ajurveda in treating this condition? My country is small and in transition,with catastrophical health care. Ssc is quite complex condition to be treated here.. I have to rely upon various sources from abroad.Practically any advise is more than welcome. Ty!

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vesna37 profile image
vesna37
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12 Replies

I do Olympic weightlifting, interval workouts, sprinting and dressage - I guess what I’m saying is do whatever you can and enjoy :)

ilovedancing profile image
ilovedancing

It really depends how bad your symptoms are as to how much you can do. The main problem I have is pain in my feet but it affects everyone differently. Despite my pain I have just joined a local walking club and can manage an hour or so. I also swim and do yoga regularly. Any type of yoga is good. Just do ad much as you can. I cycle too and have just signed up for a 50k charity ride. Not sure how long it will take me to do it but I am giving it my best. I do ballroom and sequence dancing too. The main thing is to keep active doing something you enjoy.

When I was first diagnosed 5 years ago I tried lots of alternative therapies but nothing worked. I am now resigned to taking the medication prescribed by my specialist. I went to India for ayuvexic treatment but it didn't help. I have also tried a upuncture which did nothing for the pain in my feet but helped with a I'd reflux.

vesna37 profile image
vesna37 in reply toilovedancing

Thanks for the detailed response.I also have reflux and pain in feet combined with pain in knees. I used to run but now i have strong heart palpitations and get tired really fast. I will try to do more walking and swimming.

amd21 profile image
amd21

As has been said it depends on your symptoms. I used to run & cycle but have had to stop both due to the raynauds - the wind on my skin or moving from sun into shade even in summer triggers attacks. gym is ok for me though as temperature constant.

vesna37 profile image
vesna37 in reply toamd21

Thanks. My Raynaud's is going crazy too. E.g. swimming helps me a lot psychologicaly and with joints pain but i immediately get issues with R. when I enter and leave the water. I am laying my hopes in yoga and thai chi:)

ilovedancing profile image
ilovedancing

Even yoga causes problems with my raynauds. The temperature in the room at the gym is way too cold for me. I wear several layers which does restrict my movements but I enjoy the class and it keeps me moving.

in reply toilovedancing

Bikram ?

ilovedancing profile image
ilovedancing in reply to

Would be good but no classes near me. I really enjoy yoga when we go to India in the winter. Outdoors with the sun shining.

VanessaJoanne profile image
VanessaJoanne

There are some yoga for Scleroderma

Routines on YouTube. Worth taking a look.

vesna37 profile image
vesna37 in reply toVanessaJoanne

Thank you!

marilynmcl profile image
marilynmcl

Wish I could help but am unable to do much of anything anymore...I have severe osteoarthritis in my joints and movement is very restricted....do try as am aware if you don't use it you lose it...but, my lungs have been damaged by Sys. sclerosis and breathing is really difficult too. Any exertion can cause me to have to lie down for about an hour to recover. Hope no one else has such rubbishy symptoms....just been told I also have severe anaemia and idiopathic pulmonary fibrosis. Am pretty fed up with it all to be honest. But, do hope you get some help and I wish you well xx

vesna37 profile image
vesna37 in reply tomarilynmcl

You are very sweet,thank you. Wish the same to you.

Btw,.maybe we should also try homeopathy as i dont think we loose much and maybe we can get a lot with it? After all,ssc is autoimune condition - which is "ideal" for homeopathy. Maybe worth of trying..i will share my impressions here as i will try it.

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