Hi I am Seaside88: Hi everyone I have... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Hi I am Seaside88

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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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zenabb profile image
zenabb

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

Seaside88 profile image
Seaside88 in reply tozenabb

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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