Pain and rigidity : Hi all, just wondering... - PSP Association

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Pain and rigidity

Helen119
Helen119

Hi all, just wondering if anyone has experience pain in the hands along with rigidity, Colin can’t seem to hold things or he drops them, and telling me his hands and arms really hurt, they are very rigid but he can move them, has anyone had any medication that has worked or is Botox the route to take, and who would I contact for that doctor or neurologist.

I can’t cope with all this at the moment, feel everything is a hassle and everyday things are not working or something else Colin can’t do, he seems to be progressing fast at the moment hoping it will slow down again.

Any advice or even if it the obvious please tell me my brain seems to have disappeared and can’t think of what to do next.

Love and hugs to all

Helen xx

15 Replies
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Dear Helen, I’m sorry you are in the midst of a difficult part of this difficult journey, not that any part of it is easy. I sure get it. My husband has also been declining rapidly. There is something we need to address or change every few days it seems.

Jerry has rigidity in his left hand and arm. One neurologist gave him a muscle relaxant. That was not a good thing for someone with balance and general weakness issues. We discontinued that drug quickly, and she (the neurologist) didn’t have another option. Jerry then had had one injection treatment of Botox that was not effective, but we’ll be trying that again at a higher dose in another month.

Right now, he is taking Tylenol and Advil (ibuprofen) alternately for pain. The Advil works SO much better for him than the Tylenol, but his primary doc prefers Tylenol for him.

Wish I had more to offer.

Blessings to you,

Heidi

Helen119
Helen119 in reply to Heidi-Ann

Thank you I will make a neurologist appointment for try with Botox and will ask the doctor re ibuprofen. Hopefully one or other will help.

Thank you again for replying

Helen xxxx

Hi,

Today I have applied Fenbid gel (ibuprofen) to my hand and wrist....... a prescription from my doctor.

I have pain and a rigid arm and wrist, hopefully this will help.

Cheers,

Patrick.

Helen119
Helen119 in reply to Bargiepat

Brilliant I have some of that so will try that too.

Thank you xxxx

Bargiepat
Bargiepat in reply to Helen119

Maybe better than botox because there is less side effects, I think botox is probably a last resort ?

Helen119
Helen119 in reply to Bargiepat

I’ve just rubbed some on so hopefully feels a bit better soon.

Thank you xx

Bargiepat
Bargiepat in reply to Helen119

It seems to be working, just done a 3rd application.

This from the write up..............

'Specially formulated for external application, the active ingredient penetrates through the skin rapidly and extensively (approximately 22% of a finite dose within 48 hours), achieving high, therapeutically relevant local concentrations in underlying soft tissues, joints and the synovial fluid, whilst producing plasma levels that are unlikely to be sufficient to cause any systemic side-effects, other than in rare individuals who are hypersensitive to ibuprofen.'

Helen119
Helen119 in reply to Bargiepat

Thank you yes Colin has said it feels a bit better,he’s just settling down for the night, let’s hope he sleeps through, then I will.

Thank you for the info

Helen xxx

Hi Helen,

Have you read any historical posts on Clonazepam and Baclofen? There's mixed results but members have had experience with both for rigidity and spasms...might be worth a read. How's the Cannabis Oil working??

Anne G.

Yellowmarlene just posted something that reminded me of the string Pain in Hands 5 months ago by Sasmock. Perhaps more info in there that might be useful....

Good luck! Anne G.

Thank you Anne, I did a search but nothing much came up, I will search again.

CBD Oil going ok helping with pain a little, but you have to gradually raise the dosage, as hopefully Colin going into respite soon , I wanted to get pain under control with something they would give him, not sure they would administer the oil.

Love and hugs

Helen xxx

Helen.

I am so sorry you're struggling, every day seems to bring new challenges and something else to 'deal with' doesn't it?

My dad is very rigid everywhere now. He struggles to bend his legs and at the hips when carers transferring him from chair to wheelchair. His left arm is pretty much useless now, it remains sticking out at the elbow with his clenched left hand tucked into his left side. - resembling a chicken wing! He can no longer open this left hand and when transferring him the carers have to physically stretch his arm and open his fingers one by one - this is painful for him.

The nursing home suggested muscle relaxant but GP refused to administer so we are stuck at the moment.

I fear that using the mechanical stand and is becoming a safety risk - both for staff and my dad and they will have to move to using full hoist - they are reluctant to do so because we all know my dad will hate it 😞

I am sorry I can't offer much by way of suggestions but I will be following this post to see what information arises.

Much love

Hayley x

Thank you, yes everyday a new normal, so hard to watch on a daily basis.

Love and hugs

Helen xxx

Helen,

Thanks for asking that question. Just two days ago my wife indicated that hand hurt, or at least that’s what I thought she was trying to communicate. I thought she may have hit it with one of her jerks or that it had fallen asleep. I will watch out more for this.

I am sorry you are struggleing today. Hoping you are having a better tomorrow.

Bobby

Thanks bobby still feeling low, Colin’s hands jerk aswell, he is getting to the stage he can’t hold things, his legs are jerky aswell as rigid so just standing he is almost bouncing up and down with the jerks.

Horrible desease!

Love and hugs xxx

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