Hi everyone so I’m still trying to get things resolved with Mums meds. So far this week I’ve talked to the MSA nurse, the OH person, her consultant (stroke guy) and I’ve emailed her PD nurses (still no confirmed MSA diagnosis) as they seem to be controlling her medication ‘cocktail’ still but were no further forward so far.... I just wondered if anyone had tried alternative therapies/techniques for pain relief that we could try meantime? She gets some reprieve from using the heated oat things (for muscle spasms) but has anyone found any other things helpful? I saw a previous post about patches? Can’t recall their name... or maybe massage? Her gp prescribed ibuprofen gel which is doing nothing so am willing to try anything that might get her a bit of peace. Tia Sx
Med alternatives for muscle spasms? - Multiple System A...
Med alternatives for muscle spasms?
Hi, my wife has Rotigotine Patches and they are very effective. The downside is they can be itchy and they leave a red mark on the skin which may need an emollient cream. They have stopped the crippling pain my wife used to endure often crying with the pain.
HiWe went through a long period of trying to manage pain
In the end it was a mix of slow release morphine tablets oramorph when there was break through and baclafan was the solution
Hope it helps! I know this is such a tough part of the journey
P
Hello I'm so sorry you're still having not much luck. Ibuprofen also does nothing for Dad nowadays. We tried lignacaine patches but again they got too itchy. If you have access to a palliative pharmacist they might be able to mix up a concentration of aqueous menthol cream ( between 1 and 5% ).it is cold and tingly a bit like Vicks so that it distracts from the pain but it's not medicated as such. Therefore you can put it on as often as the person will tolerate it. We've had some success with a few drops of lavender and black pepper oil mixed into a small bottle of plain base oil like almond to rub on, as it's quite warming. (Do a skin test area first). We currently have a daily regimen of paracetamol 4xday every 4 hours and then quick acting liquid oramorph 1ml on top of that, probably several times a day. I believe the strength of the oramorph could be increased depending on the person's pain. And if it all got worse the palliative team would probably bring over a pain driver. We got a lot of this from our local palliative team coming out and assessing his pain. I really had to shout at the GP to get this so you may need to do the same.We were told that baclofen is the only thing really for relaxing muscle rigidness/ tightness,but we have so far avoided using it - we don't want to add in something else that could produce side effects. I think it comes down to how much it's bothering the person though, or making it difficult to move them etc.
Good luck! Kx
Thank you very much, I’ll definitely look into all of these for Mum. I called to talk to the GP but she bypassed me and called mum instead (though this might be bc I don’t have a mandate to talk with her so I’m told!). I have been trying to contact a local hospice to ask about palliative care and meds so will keep on top of that, it’s something that hadn’t occurred to me to contact them (thanks to folks on this forum!), but it makes a lot of sense that they’d know lots about pain relief! Fingers crossed we get there in the end though I appreciate this illness is going to be a bit of an uphill battle all round 🤞🙏
May the force be with you! 🙂 my memory is a bit hazy on this but I think in the interim period before dad's health power of attorney came into effect, I think the GP accepted a signed letter from him so that I could help discuss his care.
Thanks very much! 🤞🤞 My brother and I have POW but I think I’ll type up a letter and get mum to sign it so I can give them that too just in case. Looks like some practises have specific forms but typically not Mums!
My dearest friend Maggie 💔 09/11/1952 - 13/01/2024 
What is considered the latter stages of MSA?
CHC funding 
MSA Trust for Unites States
