I have SLE and Hyghes syndrome and am having difficulty managing pain. Im currently taking tramadol & co-codamol. Any ideas?

I was diagnosed with SLE, Hughes/Anti-Phospholipid Syndrome and Sjogrens Syndrome, 14 years ago. After a shaky start (2 strokes, PEs and a DVT) things seemed to have settled down. However since the menopause my joints snd muscles are extremely painful and sensitive. What do the rest of you take for pain relief? X

6 Replies

  • I don't know about pain relief because I've not managed to sort my own, but it just occurred to me because you said it's got worse since menopause, could it be hormonal? Have you had your thyroid checked recently? It's very common for thyroid problems to surface at menopause (especially if you've got autoimmune stuff going on already) and that could definitely cause pain, it does for me. I was put on plaquenil for pain and I know it helps lots of people with APS/SLE , but it doesn't seem to help me.

  • Hi, I am similar to you although only diagnosed in 2001. I take the Tramadol but also Gabapentin (600mg 3 times daily) and Fentanyl patches (12mg/ph every 72 hours). Even with all of these the pain is still there but I am sure it would be worse without them. I hope your GP will prescribe something more to help you

    Best wishes, Monica

  • Its funny how you said since menopause the pain got worse. At 28 right after my fourth child I started menopause and was in so much pain I couldn't even nurse my baby. I tried everything. I was told my pain was fibromyalgia and was given lyrica. Lyrica really helps for my muscles but the pain in my joints and what i can only describe as my bones I used vicodin which worked very well. That was until a doctor said there are no studies showing APS patients do not suffer from pain. My pain meds were discontinued and i was labeled a drug seeker.

  • Hi, that sounds awful. I can't understand how different the various rhematologists can be. I started off with a dreadful one when we lived in Essex but then had Prof Hughes at St Thomas' who was incredible. Unfortunately you can only see him privately now and he has a huge waiting list. But I'm thinking of saving up just to have one visit with him....he's great and really understanding. Perhaps a report from him might help your local practitioners understand APS (now renamed Hughes Syndrome after him!). Hope you feel better soon. Xxx

  • I am on naproxen, paracetamol and codeine if painful.

  • I have similar diag and was eventually moved off Codeine phosphate and tramadol to Butrans patches, 30 micrograms per hour, plus paracemtamol. Didn't really work well until something changed about three months ago and now I am not woken up pain nor am I in constant pain now.

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