Fatigue and joint and body pain- what helps?

[Horseymum]

Hi everyone. I received my formal diagnosis of limited systemic sclerosis last week and am waiting to have ECHO and PFT to see it has affected my organs yet.

My worst symptoms currently are extreme fatigue and ‘whole body’ aching, my hands are particularly achey and the skin from elbow to fingers feels like it’s constantly burning.

Both are debilitating, I’m still working part time mainly from home and looking after my family but i have nothing left for anything else. Attempting to do anything physical means I am completely overwhelmed and have to go to bed.

Im sure treatment will be influenced by organ involvement but I am wondering if anyone else has noticed an improvement in fatigue or pain on their treatment and if so what regimen are you on?

thank you

[cowhide]

Hello and welcome.

Whilst my fatigue is not permanent, it is awful when it's there and learning to pace yourself is key - very difficult with work and family! When you have a 'better' day do not be tempted to overdo it, save your reserves for the next bad day. I'm sorry I can;t comment on joint pain, but...

... both Vit D and iron deficiency are very common in systemic sclerosis. I was amazed I was severely Vit D deficient as I am a farmer so outdoors a lot. You ought to be blood tested for both of these as both can cause fatigue and my bones were aching due to the low Vit D and it can also contribute to low mood. Both so easily overcome with supplements - many of us are on them.

SRUK have some good factsheets (on their website) and webinars on their youtube channel. This one might be useful youtube.com/watch?v=uryH87H...(Not working as expected?)

[Hidden]

Hi I have the same condition & I find yoga works really well for me plus doing gentle stretching using hand exercises & foam rollers for my arms & legs. I do an on line yoga class with a teacher & use an app so I can do additional sessions at home when ever I want

[LadyTrundle]

hi there. I hope you find lots of support here.

When I was first diagnosed (a bit the same state as you) I was sent a whole list of advised supplements by the team at Royal Free. And because the investigations all started with immobilising back pain and visits to an osteopath, other supplements from them. In the 4 years since, I find that magnesium helps a lot with muscle fatigue and recovery, and boswelia, enhanced turmeric and Gingko Biloba, also fish oil help with pain and fatigue. I’m also taking ginger, garlic for the Raynauds and vitamin D. And Evening Primrose oil for breast pain.

Prof Denton explained that the scleroderma thickening prevents essential nutrients getting through very well into the blood and from the blood into muscles etc. So supplements are to increase the chances of enough getting through.

I also do daily stretching and pilates/yoga at first very gentle, but every day (or a few times every day). This has had a huge benefit in conquering the pain to the extent I am now nearly ‘normal’ again in what I can do.

So - have faith and follow the advice and suggestions already given, allow yourself recovery time and pace yourself. And hopefully you too will stabilise and settle down good luck!

[RosemerryVenet]

Pacing yourself is the most important, as has been said. One day I will listen toy own advice 😀

[MJBeach200]

hi sorry to hear I am much the same, I do find epsoms baths help. Also no gluten and dairy in diet seems to help. Maggie