Just saying Hi

[Madauntie]

Really just wanting to connect with others coping with MSA. I was diagnosed about 18 months ago after a diagnosis of Parkinson's. Was wondering if it's normal to be in constant pain

[FredaE]

It is a frequently repleated truth that all cases of MSA are different because of the number of different partsof the brain affected. This applies topain but it is not pain which responds to simple painkillers but is called neurogenic pain and needs special measure to help with it. Talk to your neurologist.

[Madauntie in reply to FredaE]

Thank you. Thought I was becoming paranoid because no over the counter meds were helping

[Hellebelle]

Hi, I think Freda has pretty much answered your query. My dad has intermittent pain which doesn't respond to paracetamol. He was prescribed nefopam which doesn't give him constipation as many of the pain killers do and seems effective most of the time.

I hope you manage to get some suitable pain relief. Wishing you well. Helen x

[Madauntie in reply to Hellebelle]

Thank you for the tip x

[phamwales]

Hi

FredaE is right .. all the journeys are different but it does help if you can build some idea of the ways this condition can affect you. Gill started with neurogenic pain about 3 years ago. She suffered initially from "coat Hanger" pain which affects the shoulders and neck. As her hands began to be affected the pain levels rose and there was a period of about 12 months where the pain was very high. We used Zomorph, paracetamol, muscle relaxant and break through Oramorph when the pain became high. If I stayed on top of it then Gill's pain was managed. As time has moved on the pain levels have reduced and whilst we maintain a reduced dose of zomorph we don't use anything else and i can't remember the last breakthrough Oramorph dose. It was probably associated with hand massages that might have been too painful.

My message is that these things seem to change and whilst you might have to brace yourself and focus on the pain management it can diminish and go.

[Madauntie]

Thank you that's a great help