Pain management

[Rubylu]

I’m not having a good day today. Pain and stiffness has been overwhelming this afternoon, so I just had to lie down. I’ve called in sick for work tomorrow, which is a decision that I have to make ASAP to give them time to rearrange my work load or get appropriate cover. I hate doing it, and it’s a year since I last took any time off!

Just touching base for some company really. I was wondering how you all manage your pain levels? It’s ridiculous when even lying down hurts. Typing hurts, opening my eyes hurt and standing up and walking takes great effort and resolution.

I take nsaids for general pain management. Gabapentin for neuropathic pain. Oxcarbimaze for TN and I have a small supply of tramadol for bad days. At the moment it would be easy to take too much because max doses right at the moment are barely scratching the surface. Hot baths cause Neuro flare ups. I couldn’t bare massage. I am really , really uncomfortable grrr!

How do you guys manage your bad days?

[Hidden]

Poor you - sounds like a really nasty flare. I can't tolerate any of the pain meds you mention but if I'm really desperate Naproxen is the only one I can go for - add in Lansoparazole to my daily Ranitidine for stomach protection. Last time pain was really terrible I used Biofreeze but presently I feel that my lower half is encased in ice and I have found no remedies for this kind of neuropathy or Vasculitis (or both?) yet. I wouldn't get through my life with rueful grins if I couldn't have a hot bath a day just now. It used to be that I couldn't have hot baths because of the burning that would ensue but I've gone from one extreme to the other now. So I really do feel for you. I think my default position of bed and lots of catch up dramas or good documentaries or radio - or a good book are probably all I can sensibly suggest. X

[Rubylu in reply to Hidden]

At least I can tolerate the meds. It’s so annoying how pain can escalate and simply be intractable. I’m taking two days off work to try and settle things down. Sleep, sleep and more sleep will hopefully sort things out!

[Paul_Howard Partner LUPUS UK]

Hi Rubylu ,

If you haven't yet seen our blog article about pain management you may want to give it a read - lupusuk.org.uk/pain-managem...

I hope there is some information or advice that you find helpful in there.

[Rubylu]

Thank you Paul. A good read. I’m having a depo-medrone injection tomorrow and my AZ dose has been increased.