Elsternwick

[elsternwick]

I have PSP & am suffering with a painful back & right leg.

Especaly at night or when I ie flat.

Started before I had a bad bachwards fall.

Is this common to PSP suffers?

[Bergenser]

I'm sorry to hear that you have PSP, and that you have pains. Yes I'm afraid that pains (dystonia) in back and legs are "normal" in PSP. It's also normal that sleep is affected for many reasons, including restless legs and muscle cramps.

The backwards fall is almost a trademark of PSP.

I'm sure there are ways to reduce the pains, you might have to experiment to find what works for you. You can find many posts on the topic. Your neurologist and/or specialist nurse could guide you.

If you are able to do exercises and stretches that could be helpful, ideally with help and advice from a neurophysio.

Eventually you may need drugs but meanwhile you might find help in cold spray or heat packs, massage, magnesium rubs etc. Topical painkillers that work through the skin are also good when the pains are stronger, or after the inevitable minor injuries that go with falling over.

For a long time my husband would find a warm bath in the evening very relaxing and helpful, now the risk of falls means he cannot use the walk-in bath anymore. He can still benefit from a footbath - and from soaking his hands in warm water and Epsom salt.

I wish you all the best and would love to hear if you find anything that eases the pain for you. Hope and hugs🌻🫂

[elsternwick in reply to Bergenser]

Afternoon Bergenser,

Thanks for reply.

I sleep very well so no issues there but wake up early with the pain in my right leg, hip & back.

I,ve had a couple of small falls which only shook me up, & no harm done.

But I ended up in hospital for a month after the last one which broke a vertbrae .

I had back pain before this fall & my local pain clinic treated it but with no luck & now I have the discomort from my fall as well.

On pain killers, heat pad & doing exerises but no help, hence my posting.

Various things happening now eye sight, neck stffness & walkings really bad like a slow moving drunk. Some times throw food t myself instead of my mouth

I wanted an op to sort my left knee out but the doctor looking after my knees & my neurologist

are against an operation, so have to have injections, which do help.

Latest thing is they say I have osteopenia,mild thinning of the bones.

But I plod on & get help & advice from a close friend whose mother died from PSP.

Thanks again for replying & I will pass on any helpful advice that comes my way,

With warm regards.

[LuisRodicioRodicio]

Hi elsternwick!

I have similar symptoms. I don't have any discomfort while I'm walking or sitting. However, when I get up in the morning I notice discomfort in the lumbar area of ​​my back.

When I get up I apply a pressure shower, hot but at a temperature that doesn't bother me, as close as possible to the painful area. I apply three applications of about two minutes each, leaving an interval of 3 to 4 minutes between one application and the next.

I don't need more to control the discomfort.

A moderate inclination of the head of the bed (9" -12") can help.

I sleep preferably on my right, sometimes on my left. Never in a supine or prone position.

I hope it can be useful to you.

Hug and luck.

Luis

[elsternwick in reply to LuisRodicioRodicio]

Hello Luis,

Thanks for reply.

Since I find using the key board hard these days. without you thinking me rude could you read the reply I sent to Bergenser..

I dont have a pressure shower but I do have hot shower each morning shower with my partners help because of my balance etc

Warm regards.