Sunshine helps: I was diagnosed with... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Sunshine helps

ilovedancing profile image
6 Replies

I was diagnosed with scleroderma almost 5 years ago. The worst symptom I have is the pain in my feet when walking. I have tried lots of different treatments including a fat transfer which I appreciate needs more than one procedure before it is fully effective so I will have it done again some time in the future. However, I have been on holiday in a Goa for almost a month and yesterday I walked 10 miles, around 22,000 steps. OK, my feet were a hung but I am sure most people's would be after walking that distance but I did it

I am not sure why I have had such an amazing relief to the pain. I am sure the hot weather is a factor, maybe the healthy fresh organic food, no work stress, fantastic massages, yoga classes, although I do yoga at home but there is nothing like doing it here in the cool morning air with the sound of the waves crashing on the beach. Or could it be the for of Old Monk Indian rum we have been having every evening as we watch the sun set over the ocean. Whatever it us I wish I could bottle it and take it home.

Before I came away I was having problems with low blood pressure. My doctor said it wad due to the nefedipine I take for raynauds and suggested I lower the dose. I did but the Raynauds got eirsr. Since I have been here in India I have been taking the lower dose and have not had a single restaura attack. It is just so relaxing here.

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ilovedancing profile image
ilovedancing
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6 Replies
AJOC4 profile image
AJOC4

I suffer with pain when walking in the ball of my foot and the connections/joints between that and my toes no matter how cushioned my shoes and insoles are. I don't have a car and love walking everywhere. I also get aches in my knees and back when walking too. I've reduced my nifedipine to just one a day because I was starting to feel a bit dizzy. It seems to work still. I'm on prednisolone for my scleroderma now but just the one tablet which has partially helped my skin and hand strength. I took an extra tablet today because all my joints were aching. I've tried Hydroxychloroquine hoping it would help with the muscle aches and cramps but the side effects keep putting me off.

positivedaybyday profile image
positivedaybyday

That's great to hear the sunshine has improved your overall being.

I was going to ask my consultant at our next appointment if staying in a warmer climate could help the condition. I have really struggled in the cold here in the UK.

I've not been allowed to fly after having stem cell treatment last year( due to the high infection risk.) I'm hoping to get the go ahead shortly as I miss the blue skies & warmer weather. It might be a short haul first & take it from there.

You have given me more hope, thankyou!

Xxx

It's the weather and the stress involved living in...have you ever lived in Scotland or Northern England? My condition got a lot worse since I moved. I used to live in the South). Sunshine heals as you say, how so true! People go away so often, I used to wonder why, I know now, people hate the weather. The weather is killing me, slowly. I used to pretend that it's silly to say that, even. But I need to be honest. Bad weather can erode your health/QOL little by little. Get out and enjoy life before it's too late.

juliealicegreer profile image
juliealicegreer

Shoe inserts to support your dropped metarseal heads? Works for me. Julie Alice Greer

Chakula profile image
Chakula

That is a v interesting & informative message! It would be v helpful if you would message again when you get back home how long the “Goa effect” lasts whether it wears off quite soon.

ilovedancing profile image
ilovedancing in reply to Chakula

I am back home now. Almost straight away the pain in my feet came back. So didappointing.

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