Scleroderma & Raynaud's UK (SRUK)

Hi I am Seaside88

Hi everyone I have just realized I have not introduced myself. I am 64 and I suffer with a long list of conditions including Crest, Limited Systemic Sclerosis, my Raynaud's is severe and I also have had ME and Fibromyalgia for over 20 years. I have a number of other chronic conditions and I take a whole load of medication for them.

I had a Total Hip replacement just over 9 months ago and after it dislocated twice in the first two days I had to have a third operation which was for a revision and I had a long stay in Hospital I am still having difficulty with mobility which is not helped by the other hip needing a replacement too.

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Do you know how to manage each of your conditions except for the hip issues.

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Thank you for your reply.

I have regular checks and medication for all my conditions and have a good control over them except for the latest diagnosis of the Systemic Sclerosis.

My Raynaud's got to an unbearable stage and I asked about the Blood test for antinuclear antibodies. It came back positive and I was then seen by a Rheumatologist. I was diagnosed early 2017 and had lung function tests and a Heart scan and then another scan with dye because they said something about the transfer of gases not being right..This year I have had the Lung Function test and the Heart Scan again.

I have read a lot about the condition but still feel lost as to what to expect. Like a lot of chronic conditions it varies how it affects different people.

I have had Iloprost infusion in December 2017 but It hasn't really helped.

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