Pain being your biggest feature
I was wondering how many people are in pretty much continual pain from their MS? I have RRMS, onset likely 13years ago but diagnosed for 3. I don't have relapses per se - I had a bout of assumed Labyrinthitis before being diagnosed but that is it. But the majority of my symptoms are sensation and bladder based.
What i'm saying is that i'm in constant pain, daily. It is mainly my back, and I would say it is 90% of the time. I'm on Ocrevus which I do believe is helping with progression, but I find it hard to reconcile the lack of relapses with the daily pain. I am active, still work and drive a car, and appear okay, yet inside, i'm suffering from this awful pain.
I used to take Pregabalin for neuropathic leg pain, and that does come and go in a "flare up". But this is my back, shoulders, hip on occasion.
Sorry if I've been a bit vague. Neurologist seems to think the Hip is orthopaedic, but this begins as soon as I open my eyes in the morning, no exaggeration!
Hi @jochad1 have you spoken to your GP about the pain and explained that your neuro doesn’t think that it is MS related? I go to a chiropractor once a month and although it doesn’t get rid of the pain it helps me a lot. I also use CBD Oil which takes the pain away but doesn’t help with what is causing the pain to begin with. the combination of the two has made a masssive difference to me. Jonny
I do a really active job tbh, and when I had my first MRI it did show "wear and tear" as the Neuro called it in my lumbar region. But what I can't make sense of is the resting for a night's sleep, and then waking and immediately being in pain. When i walk downstairs first thing in the morning i have what I call puppet legs - the movement isn't smooth but jerky. I'm worried it is to do with my spine. I don't have any lesions on it but the jerky legs first thing is new. Today I feel pretty low because i'm really fed up with being in pain all the time. It's super depressing.