Hi all, I’ve been referred to a neurologist to confirm after 29 years that I’ve MS as originally I was told that I had inflammation of the central nervous system, but being treated by my GPS as ms. Unfortunately, there’s a long waiting list, so not going to be seen until November/December. In the meantime, now I’ve had a relapse in my colitis and been told by the gastroenterologist that I need to stop all of my painkillers as I’ve got opoid induced bowel!! Can’t even take my ibuprofen. He wants me to be referred to a pain management clinic. Does anyone have any experience of this. I’m really nervous about coming off my buprenorphine as its been the only pain relief that has worked for me. Ironically, I had made an appointment for my GP to ask for additional pain relief as they’re not as effective as they used to be, but had to relay what the gastroenterologist said. My gp has told me that theres a really an oversubscription of the pain clinic and we may have to start reducing my buprenorphine ourselves. Any help would be grateful.
Oh dear not good then hun but i thought there were lower doses of this you could take to help reduce the OIB? I am sure my friend was put on something different in a patch.
Also MS can cause constipation and gastric problems too.
I was originally diagnosed with Neurological inflammatory disorder. I bought my medical notes and went through ever single letter, and I found 3 letters confirming I had lesions on different areas on my spine over different times. I gathered all my notes and took them with me when i challenged my diagnosis, and was finally told MS but even then it was grudingly, as i am 64. Doesnt matter i had positive VEP tests too etc.
Anyway yes the pain clinics are full to bursting sadly.
Can I ask what pain you have which makes you need buprenorphine?
Hi, Have you thought about taking cannabis or Sativex spray? it can really with pain.
Flippin eck! 29 years and only now you get to the truth!
I spent several years being wrongly diagnosed as PPMS, before being told I have HSP…hereditary spastic paraplegia.
My pain killer for legs and bum cheeks, that is still working well after 15 years is amitriptyine.
But I have heel pain persistently, which is worse in bed and haven`t found a solution to that.
Good luck and i hpe you get what`s needed SOON.
luv Pollx
Hi goldengirl63,
I’m just trying to get some ideas about alternative pain relief as I’ve got a funny feeling that my GP will be trying to find alternatives before long, partly due to the delay in pain clinics. I suffer, mostly with a toothache sensation in my legs. That’s the only way I can describe it as its a constant throbbing, sometimes its bearable or it can get so bad that i’ve got to sit on my legs to numb them. It can be in one or two legs and below or above the knees. I also get very deep pains behind my knees that seems to be in the joints. The only way to ease these is by using my tens machine or by massaging it. Stupid isn’t it. Sounds as if I’m making it up. What’s worse is that I can get both those types of pain in either of my arms and shoulders. Trouble is sometimes it can last hours or minutes, there’s never knowing which. I try not to say anything to anyone now as I must sound like a neurotic and I feel as if I’m just imagining it. Oh, forgot, the electric shocks that are mostly in my shoulders running down my arms, they only last a millisecond though, but excruciating when they happen. Right that’s enough about pain.
I’m still waiting for the appointment for the neurologist, but should be about Nov/Dec. I know they’ve got patches and injections in the buprenorphine, but I’m taking 500mcg x 2 tabs sublingual three times a day which is the Max, but been supplementing these with ibuprofen 600mg three times a day and using my tens machine when it gets bad.
As for cannabis or sativex spray, I think you can only get those from a neurologist. Any help would be brilliant as I’m scared that I’m going to either end up with a colostomy bag if I stay on the buprenorphine or no effective pain relief if I come off them. If I can find details of some alternative at least I could go to the GP armed.
Thanks
Babs