Raynaud’s Pain: Has anyone had a... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynaud’s Pain

Dermatray15 profile image
4 Replies

Has anyone had a surgical procedure to relieve Raynaud’s pain? If not what do you do for pain?

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Dermatray15 profile image
Dermatray15
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4 Replies
Jacko37 profile image
Jacko37

I was offered one a few years ago, chemical sympathectomy. I decided against it because it would only have been temporary and for me the risks were not worth it. I have Iloprost infusions every 6 months, at least I'm supposed to have them. It doesn't prevent Raynauds but things are a lot worse without the infusions. Oral meds never did anything for me.

Dermatray15 profile image
Dermatray15 in reply toJacko37

I was offered the same procedure. I decided not to have it. I am receiving Rituxan infusions. The spasms are still there from time to time. I find it more painful during cold weather. Do you take oral medication for the pain?

Jacko37 profile image
Jacko37 in reply toDermatray15

No, nothing for the pain. I can handle it until the sores and ulcers come and then it becomes totally unbearable. Work is just practically impossible, even the air going over my hands is agony. Iloprost does help with the ulcers but doesn't stop them.

OldTed60 profile image
OldTed60

The pain is just terrible isn’t it? I have had this daily while out over the past week since it got colder. It’s so bad I want to cry when it’s happening. It seems to make no difference which type of gloves I wear. In fact I was given very expensive new gloves for Xmas sold as the best possible non battery ones for Raynaud’s but they made no difference at all. So I’m back to mittens because at least then my fingers have each other for company - which seems to help a bit. I’m on losartan 100mg and monthly 1 day iloprost infusions. I don’t get ulcers since starting this regime but still get Raynauds with the excruciating pain. I’ve heard good things about Botox for Raynauds but otherwise I just have rechargeable heat pads which I take in my pockets.

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