Systemic sclerosis and exercise

[Sylviaherring]

How to you guys cope with exercise? I am training for London Marathon and struggling so much. I did 5 half marathons last year before I was diagnosed with systemic sclerosis. However I can't seem to get above 13 miles and getting slower and slower. It tires me out and even the following day i can feel the affects. Any ideas ?

[Hidden]

Creative and d-ribose (see my posts about fatigue for science)

[MilkMaid in reply to Hidden]

Hi Bear, your post was 4 years ago, are you still taking the supplements and has the improvement in fatigue been maintained?

[Hidden in reply to MilkMaid]

Yes, in short

[Fuchia]

Hi Sylviaherring,

I have always done quite a bit of exercise too. Gym, pilates, yoga and charity walks. I was diagnosed about 18months ago. I too can't do what I used to and find it very difficult to accept. On good days I do too much and then boy do I suffer for a pup,e of days after. We can't give In thoughtmy love. Got to beat it and wo k in through. Not any answer I know and doesn't help you. Just wanted to let you know I am in a similar position to you. You will do just fine with the Marathon. The others and crowd will carry you. When you finish what an achievement yiu will feel. 🤗I am doing Thames Path Challenge in September (walking) for SRUK Did Thames bridges last year for them. Suffered big time after both, butt worth it. Will be for you too. Take care Fuchia

[LisaCl]

I have Diffuse. I ran 3 half marathons at age 50. I’m 54 now. I cannot run even a block. Exhaustion. Pain. ILD and lung fibrosis.

[Fuchia in reply to LisaCl]

So sorry to hear this has really taken a grip of you so rapidly. It is so hard to accept. I really struggle with it, I must admit. I am determined to do it and then suffer after. Muscles ache so much with exercise too. We must just keep battling through and forcing ourselves. Take care

[Kingfisherblue]

Do it while you can. I love walking and cannot do hardly any now. SO go for it.

The trouble is this illness just creeps up on you and can really quickly change your lifestyle. I think this is why people do not realise you cant do it anymore. While partners, family and friends still go on their happy life. You feel terrible saying hang on a minute. I cant walk that fast anymore slow down.

[Fuchia in reply to Kingfisherblue]

I totally agree. Also when people say ' you look well.' I do get really frustrated, don't know about you! Little do they know. When you always put on a brace face and smile. They think you are back to normal and we'll again. They don't understand. X

[Ncoff in reply to Fuchia]

This frustrates me so much, smiling behind it all seriously gets me down

[Hidden in reply to Kingfisherblue]

I so agree with you, my SS is advancing rapidly very rapidly, was formerly diagnosed three months ago and now seem to be turning to stone, I feel guilty because I can hardly walk my dogs, live in a mountainous area, every where is up hill and I haven't got the breath for that The worst side effect for me personally is the loss of control and losing my hair but other than my hair I look fine, if I am on the flat or sitting my breathing is fairly normal and people think I am fine, they don't realise how very difficult it is to just pick something up off the floor (I am widowed) have had to invent ways of doing everything differently.

[SherrySanford65]

I find that getting up in the morning and dancing to my favorite music is helping me. I dance all the time. So good for you. (When I feel up to it)

[SherrySanford65]

Sylvia, systemic sclerosis is a disease that causes your organs to harden making it very difficult to do the things you used to with regard to exercise. I would focus on stretching exercises and walking without pushing yourself. I dance, myself, and it’s really helping me. Don’t push yourself too hard. Read up on your condition. I use a cannabis strain for energy and other strains for relaxation and pain relief. I got off fentanyl patches which are stronger than heroin and lyrica for fibromyalgia. Cannabis works well for me with no side effects.

[Littleleni in reply to SherrySanford65]

I get severe muscle spasms and have trouble pushing through exercises. I too am on cannabis instead of harsh meds. Should I keep trying to oush through or is that not good. Been doing this dance of exercise intolerance for 8 -10 years.

[Hidden]

So wish I could get cannabis over here. Although medical cannabis is legalised actually getting hold of it is impossible. Hate putting strong chemicals into my body so atm I am only the tiniest dose of prednisolone that I can get away with