Medication enquires

[Billyboyx]

I have had lupus for 30+ years, I did have a rheumatologist but he’s now retired. My dr thinks because my main issues are pain management. I’ve tried probably almost everything, but for the last 8 years been on oramorph which helped 75% of the pain but now because scientists are saying it’s not beneficial for chronic illness I’m now reducing it Bhutto I feel I’m back at the beginning and I’m trying antidepressants for pain and none are working and I’m climbing the walls. I have s.l.e and other ailments.

My enquire is what pain/antidepressant can anyone suggest please. I really am struggling physically and mentally now. My rheumatologist was brilliant and I miss his council he help me so much.

Thank you for taking the time to read this.

Joan Manchester

[Spanielmadlady]

Hi Joan.sorry to hear of your struggles.do you have another rheumatologist? If not I'd ask for a referral to one .have you considered asking to be referred to a pain clinic? I have sle and my rheumatologist put me on pregabalin for pain .most of the time that's enough but if I need abit more all I can take is paracetamol with it.do you get your b12 checked? I have b12 deficiency anemia and that also causes nerve pain when b12 is low so now I get b12 injections every 8 wks.stay strong xxx

[Billyboyx in reply to Spanielmadlady]

Thank you for replying. Regarding another rheumatologist I was referred but it was till the original one I saw for 10yrs with no diagnosis other than believe it was in my head where I saw at least 4 phycologists over that period, do I cancelled the referral and went in a depressive state for a while. My g.p’s aren’t very helpful to be honest. Thanks I’ll check the medicine you’ve mentioned and get back in due course

[Spanielmadlady in reply to Billyboyx]

Sadly drs appear to be poorly educated when it comes to lupus i was also told it was in my head.thankfully now I have a good team but it means I have to travel as my kidney specialist is Preston and my rheumatologist is Lancaster.personally I'd persue rheumatology again as I dont think gps know how to handle us lupus sufferers .xx

[CecilyParsley]

Hi Joan, I am so sorry that you are in so much pain. I tried Oramorph but it made me sick. There are pain patches that help if your skin can take them. I was on Butrans patches for a while but sadly they caused significant irritation for me. Garbapentin is good for nerve pain. I take two at night to help with my restless legs. I take morphine sulphate tablets which appears to be the only medication that can make life bearable. I would go to your GP and demand a re referral to Rheumatology. I wish you the very best and hope you can be much more comfortable soon xx