Neck/shoulder pain, is this MSA-C or ?

[Andrashko]

My husband has rapidly declined in the past month or two as far as being able to ambulate even with his 4 wheel walker. We have gotten him a scooter (which my daughter and I took for a test drive around the house), as my husband refuses to get on it. Says it's a "mental thing". In time, I'm sure he will use it, but he looks at is as 'the end', as he researches far too much and says that once you get in the 'chair', it's a fast decline from there. Our problem now is his right arm from his neck down into his shoulder he says is in severe pain. I don't know if it's strained from using the 4 wheel walker, or something else. After two visits to the doctor, and now finally on pain pills, he says it 'barely' touches the pain as far as relief. We have tried heat, anti inflammatory, massages, nothing seems to bring him relief. Have any of you had this? Is it just an "MSA-C" thing?

[Yanno]

Hello, I’m sorry your husband won’t accept his ‘chair’. Jackie ‘went off her feet’ very early on losing all balance in 2015. Her all terrain ‘chair’ was one of the best things we did. It enabled us to get much of the travelling we planned for retirement into just a few years only being stopped by Covid. We travelled to Myanmar (Burma), Iceland, Russia, etc none if which would have been possible without the 'chair'. Even now we have frequent walks to the river and back. We have a always said it's better to be pushed a mile and then walk 20 metres rather than just walk 20metres. Sadly now Jax can’t walk at all but we still love the liberation the chair has given.

His pain sounds like it could be ‘coat hanger pain’. It’s mentioned in this fact sheet from the MSA Trust. msatrust.org.uk/wp-content/...

Take care, Ian

[Chickenshack70 in reply to Yanno]

Hi. I second the "coat hanger pain" suggestion. Our Parkinson's nurse said it was because the muscles were fighting against each other and tensing up. My partner has this, it was one of the first bad symptoms she had. Eventually she was prescribed Gabapentin which, after a few weeks, managed to start to dull the pain. It's a tricky one to get the dose right. It relaxes the muscles so they don't cause the pain as much, rather than just having pain killers it addresses the problem. Best regards. Liam.

[Crodiet]

Hi,As Yanno says:

The chair is not the end my Sue (sister) has not been walking since 2006 but is still here yes the problems have grown, unfortunately it’s a progressive illness, but we still have good days and a laugh.

Coat hanger pain is a symptom of MSA I am told. Take advice from doctors and nurses and the trust for meds. But some of the ‘old wives’ remedies can be useful for managing pain, hot and cold compresses for example, also Sue has acupuncture and physio to help keep joints moving and pains at bay - they won’t solve anything but can give temporary relief.

Pippa

[Andrashko in reply to Crodiet]

I agree that John's pain could be 'coat hanger pain', except that it has been consistent for the past 4 days. He says on a scale of 1-10, it is a consistent 10. Only getting slight relief from pain meds, heat/ice, creams etc. I know that when John stands or sits up for any length of time, his neck does get this coat hanger pain, but have you ever heard that it is a consistent pain for days upon days? I'm thinking something else is going on, but here in the US anyway, it takes so much to get insurance to pay for any further testing, until they've tried and failed multiple things. When he moved either arm it is excruciating pain into his neck. Monday we see another doctor, so we will ask once again about the symptoms he is having.

[Crodiet in reply to Andrashko]

Good luck, unfortunately not a lot is known, I just once more feel greatful we have the NHS, though the MSA trust is a charity and Sue pays for the physio and acupuncture herself, her basic package comes from our local authority and the NHS. So it’s one thing we don’t need to worry about.

[Crodiet in reply to Crodiet]

Ps Sue says her coat hanger pain sometimes went off with pain killers but sometimes it just kept going and stayed “forever” as a dull ache. When she was having it a lot she ended up on Morphine, which works but puts you “out of it”. Fortunately we managed to get Sue to a point when she manages with out morphine, but I’m afraid it is all individual.

[Andrashko in reply to Crodiet]

That's what I'm afraid of, so wanted others experience. My husband is hard to deal with at times, and this is only adding to his "grumpy" ness. Thank you so much for your replies

[Hidden in reply to Andrashko]

I've read a leaflet from the MSA Trust that talks about emotions of people of ave MSA. May be worth checking out...