Pain with PSP

[Writingwithcats]

I have read several posts that mention a person with PSP having pain. My husband (Dx 3years ago) never has pain. In fact, pain that he used to have -- his hip from a problem in his lower back and neuropathy in his feet -- has disappeared. Is this common? For people who do have pain, where is it typically located? What causes the pain? How do you cope with it?

[doglington]

My husband didn't have pain either. Occasionally he had pain in his ankles and feet in the morning which was quickly eased with massage. This site helps you to appreciate what doesn't happen so one feels lucky about something !!! xxx

[messier]

I've commented in another thread that I think my mother has a reduced perception of pain. She probably has CBD rather than PSP but there's a lot of overlap. She does get uncomfortable when stuck in position particularly at night in bed but cuts, bruises and swollen ankles with socks or shoes digging in give her no pain. I think this is actually a risk that she won't realise about some problems. Given that others seem to have pain I presume there is a problem in the pain messaging that goes into over drive or switches off.

[Ettavb in reply to messier]

This is the exact same situation for my mother (CBD), but recently she has been complaining of an unspecified pain (and requesting Motrin). She has either stated she hurts all over, or she has pain in her legs when I press, but she can't pin point the leg pain, (and I've specifically asked about the sock line where her ankles swell - but she has said that area doesn't hurt.)

[Writingwithcats in reply to Ettavb]

I've wondered about Chris's pain perception, too. I think it has dulled.

[enjoysalud]

My son had pain on his neck. Any movement of the neck or NO support for the neck was hard on him. In addition, when he had the PEG installed it hurt for a couple of days.

[honjen43]

I believe the pain reception must be reduced, maybe because that part of the brain is compromised.

My hubby spent an hour in a chair asleep, but startling awake. I checked him several times and finally found a wet patch because he was sat on a uridome tube and tension had pulled it right off. Must have been extremely painful yet he was unable to make it known to me or staff.

Hugs

Jen xxx

[Dadshelper]

Dad complained of pain in his neck and shoulders a lot. It was from the muscles contracting so much. As for pain from an injury he didn't seem to really notice it. There were a couple falls prior to wheelchair that had to hurt like crazy but he never complained.

Ron

[AnneandChris in reply to Dadshelper]

Ron

Chris too used to rub his left shoulder and lhs of his neck so showed some signs of discomfort. And, as for pain after falls, he never complained despite sustaining some pretty horrific head injuries. He'd have a couple of paracetamol, nod off and relax.

Oh how life has changed!!

Anne

[Writingwithcats in reply to AnneandChris]

Ron and Anne, that's what I see with my Chris. After a fall, he's bruised and scraped, but he says it doesn't hurt.

Niki

[daddyt]

I have regular soreness than I cope with. There have and continue be dystonic episodes and spasms that are off the chart. We (affected) all experience PSP differently.

Tim

[Writingwithcats in reply to daddyt]

I'm learning that each person with PSP experiences it differently. Before I found this group, I had no way of knowing that. I'm sorry about your pain.

Niki

[Railfan]

I have axial rigidity from head to hip that is exacerbated by also having Ankylosing Spondylitis (AS). I experience pain more when I try to turn my head or body more than the rigidity or AS allow. Like others on this site report, I get cuts and bruising from the falls but do not seem to feel the pain as much as I used to.

Tony

[Writingwithcats in reply to Railfan]

It sounds very frustrating and uncomfortable for you. I'm sorry for your difficulties.

Niki

[Tttp]

Good morning, my brother had some pain in his neck two years before he was diagnosed with PSP, then it went away it is now 9 years later and he has never been in pain, of course now he is on hospice, and the of this dreaded disease is coming to a end

[Writingwithcats in reply to Tttp]

I hope you and your brother have peace in this last stretch.

Niki