Finally an answer from the DR's - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Finally an answer from the DR's

taddy838 profile image
5 Replies

Well after 4 long years of not knowing what was wrong with and see 5 doctors, 4 days ago I was diagnosed with Raynauds.

Apparently I have very little pulse left in my feet which is scarey the shit out of me.

My feet change colour, ache and today I feel like I am coming out in a rash, my arms/legs are red and rather itchy along with both my legs being sore today as well.

Does anyone else get this?

I just need someone to talk to, feeling rather dull at the moment. :( I go back to the dr this week to get autoimmune blood results and other tests.

Whats the go with the medication? Do you have to take it for the rest of your life?

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taddy838 profile image
taddy838
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5 Replies

Yes, likewise it has taken years to be diagnosed. 6 months to see Vascular surgeon, then 8 months to see Dermatologist and Pain Clinic and an 11 month wait (still waiting) to see a Rheumatologist. It was the Dermatologist who diagnosed the Raynaud's and they also took photographs of my feet and called in 4 other specialists to confirm it.

My feet are awful, like walking on glass shards. Started on Nifedipine 3 weeks ago, a killer, I persevered and now there is a slight improvement about 5%. Pain Clinic have provided so many different pain killers, latest one being Codeine Phosphate. My feet are hypersensitive, so I can actually feel seams in socks or insoles inside shoes. Seen the Trauma and Orthopaedics department and have had specialists insoles made for me - which are totally smooth which helps a little (not much).

So likewise it's a waiting game :( and unbearable discomfort in my feet 24/7 and worse still when I walk. So go to bed in pain, wake in pain and live in pain.

taddy838 profile image
taddy838

oh wow. :( I got into the vascular specialist pretty much straight away. Rang up on the friday and got an appt the following wednesday.

I have 3 toes on my right foot that go real numb and can barely feel them.

I have been told that I need to quit smoking, I only started a couple months ago, but they said things will get worse if I keep it up.

zenabb profile image
zenabb

I have no pulse in my right leg, but I have been told that the peripheral circulation takes over and it is all right. I can believe that because I have been like that for years.

lowicklady55 profile image
lowicklady55

My rheummy said that I had hardly any pulse in my left foot, So I had a scan and they said I did have a pulse. That was last March. I have a strange sensation in my foot, feels numb yet tingly. It is generally purple unlike the right skin tone. I am now trying silver socks and I believe they are working. My foot no longer has the "dead" feeling about it. Next stop the gloves.

taddy838 profile image
taddy838

Well i got my results back yesterday and nothing has come back on the autoimmune but the doctor doesn't want to see me for another 2mths, when last week they wanted to get me started on the medication asap as soon as I stopped smoking. :(

Deciding whether I need another opinion.

Plus I have had a rash since Saturday.

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