Aches and pains

[jimandsharynp]

My wife who has PSP is now complaining of pain in her elbows. Just started recently and may be PSP related.

Jimbo

[Hidden]

Hi Jimbo

As you know, PSP affects the back (trunk) and neck muscles primarily and spares the arms and legs (unlike those who suffer from Parkinson's). However, my wife has now developed upper arm muscle pain that, according to her physiotherapist, is due to neck problems. I'm not sure if pain in the elbows would be due to PSP, or more likely, an aging process. I think we often see PSP as causing most problems we encounter, but of course most sufferers are in their70's or 80's and natural wearing out of joints is occuring. Such things are exacerbated by our loved ones with PSP having to use their arms to push up from chairs/wheelchairs/walkers/frames etc. (My wife has a bad knee and when in the standing position it can be quite painful sometimes).

All the best to you and your dear wife.

[jimandsharynp in reply to Hidden]

Strelley, Thanks for the input. I think you may be right. The pushing and pulling on the arms to get from chair to wheelchair to bed to potty may be stressing them out.

Jimbo

[marytea13 in reply to Hidden]

Strelley I replied to Jim suggesting Panadol osteo + wheat heat bag have u tried these? I use them occasionally. Best seasons greeting to u. MAry

[Hidden in reply to marytea13]

Thanks Mary

I also use wheatbags for my wife's neck, and she finds some benefit from ibuprofen rather than panadol (she has experimented with both).

Hope you have an enjoyable festive season.

T.

[SharonAB]

Dear Jimbo,

I am left wondering perhaps if the pain your wife is feeling in her elbows may be relating to an issue 'happening' to some other part of her body.

Why... Part of John's story...

Each time John has had pain over several days (and sometimes weeks!) that he has felt is isolated to one part of his body it has turned out there is something going wrong in another. It has (& remains for John) a constant merry-go-around with tests with Xrays, internal & external scans, physios, OTs, Dr's, hospitals looking for what is going wrong where.

For example, on one occasion he had extreme pain in his feet, & this was 'fixed' when it was recognised that he had a tooth which had broken and the nerve exposed was causing the pain. Likewise John was having major headaches and pain around his forehead . However when he rested in the afternoon (and raised his legs well and the fluid in this area was reduced) the pain and head aches went away. I also recall when he was also having exteme pain in one hand & had great difficulty using even a spoon to eat. A few days later when the shoulder and neck was gently massaged on the oposite side of his body the pain subsided.

John now says whenever he is questioned about his body he automatically feels that his body is a lead weight and in extreme pain all over. I've asked how does he dismiss this pain? to which he says that noone really understands how he does it but it is like he forces his thoughts to be where we used to live and his thoughts force the pain to go away.

- I take this to be back to about 15 years ago when we lived in another home & it was a time of no responsibilty for John About 8 years ago we moved to be closer to amentities for John's premature aging (no diagnosis at the time), however John now talks of how this major move (for which he was unhappy to make) is the cause of his illness.

N.B. Before PSP - John would often say he didn't understand what a head ache was because he had never had one. Times have certainly changed...

Regards,

Alana - Western Australia

[jimandsharynp in reply to SharonAB]

Alana, Thanks for the ideas. Hadn't thought about some other cause for the pain.

Jimbo

[JoJo-K]

Hey Jim,

My mum before PSP had pain in her knees which was put down to rheumatism and Co-Codamol prescribed. However the last 18 months she says the pain is from top of her legs right down to her feet, she hasn't been able to walk since before Christmas and yet the pain remains the same. Doctor prescribed gel to rub into knees and legs but it hasn't helped any. Still waiting to see mums neurologist, so was going to ask him about it.

For our family holiday this year we are returning to Cape Coral, Florida, is that close to you at all? Coming over 3rd August, hoping its hot hot hot

As always big hugs to you and Sharyn

Jo xx

[cabbagecottage in reply to JoJo-K]

nothing works for my husbands painful knee even after to ops . Heve u tried Pernaton cream . He does find that a little helpful

[JoJo-K in reply to cabbagecottage]

Thanks for the tip, I've never heard of it. Just googled it and they sell it at my local health shop ! Will give it a try x

[cabbagecottage in reply to JoJo-K]

Let us know of it helps you . It has certainly helped me I have painful shoulders and neck from all the lifting O do for my husband ,. My sister in law came across it in a magazine and tried it , all her friends are buying now .

[JoJo-K in reply to cabbagecottage]

I'm going to try it on me first, as while I was googling one website that supplies supports fibromyalgia (chronic pain condition I have) if I feel any benefit I will definitely then try on mums legs.

[jimandsharynp in reply to JoJo-K]

Jo-Jo, thanks. Coming near Orlando? If so let me know and perhaps we could arrange to meet for lunch. We are North of Orlando and yet only 45 minutes from the attractions area. Cape Coral is not near to us unfortunately.

Jimbo

[JoJo-K in reply to jimandsharynp]

Oh what a shame, we are flying straight into Fort Myers after a quick change in Atlanta. Would have been lovely to have met you both. Jo xxx

[carolinesimmons in reply to JoJo-K]

I'm not the one with PSP but gabapentin helps with my foot pain (peripheral neuropathy).

[JoJo-K in reply to carolinesimmons]

Thank you for the idea, I too have tried Gabapentin as I have fibromyalgia, I had terrible side effects after a few months and had to come off it. The withdrawal was horrific, it's not something I would advise anyone to try, even other sufferers who like me have chronic pain. Glad it works for you and thanks for helping. Please watch how you go on those meds my lovely. Jo

[Peter3]

Hi Jimbo,

My husband has complained of pain in his shoulder and left arm almost constantly for the last two years, he's had X-rays and scans, they all showed no abnormality. However, the muscles in his arm are constantly in spasm and the use of this arm is now negligible, with his fingers splayed outwards. Physiotherapy worked for a short while, but as time progressed it started to aggravate the condition further. During all this time he was given a variety of analgesia, none of which worked. It was the doctor at the hospice who changed the regime and prescribed paracetamol 4 hourly whether he had pain or not and Baclofen three times a day. Now, most of the time he is pain free. His arm and shoulder are still very stiff. My husband is only 58 and has no obvious signs of arthritis or rheumatism.

There is an awful lot of trial and error with the treatment of the various symptoms PSP produces.

Best wishes to everyone from a very wet West country UK. Peter 3

[jimandsharynp in reply to Peter3]

Peter 3, Thanks for the ideas. Crazy as it may seem I hadn't given thought to some over the counter pain relief meds. I may try that since I have it on hand.

Jimbo

[Hidden]

Hi, Mum got severe pain in her hip when she succumbed to yet another infection last October and it remained until the end. When she got to end stage she could only say 'hip' in a very quiet voice and I got rather fed up with the nurse only being willing to dose mum at the time she did her rounds. I mentioned it to the hospice nurse and she immediately put mum onto pain patches which were a godsend and could be topped up with paracetamol when required. The way I could tell it worked was that mum stopped drawing her leg up into the foetal position as soon as it was started.

[peterjones]

hji jimbo i have the same problem with aches and pains in the arms but its not constant it goes away but unfortunately it does return and my right arm seem to have a mind of its own at different times it seems to wander off course if im drinking a cup of tea it seems to wander then and miss my mouth but again this is not all the time thank goodness \

its good to be back\ peter jones queensland australi8a psp sufferer

[peterjones]

hji jimbo i have the same problem with aches and pains in the arms but its not constant it goes away but unfortunately it does return and my right arm seem to have a mind of its own at different times it seems to wander off course if im drinking a cup of tea it seems to wander then and miss my mouth but again this is not all the time thank goodness \

its good to be back\ peter jones queensland australi8a psp sufferer

[jimandsharynp]

Peter, My frst wife had a rare brain disease CJD and her one arm had a mind of it's own at times. If she was holding something and wanted to give it to you the hand wouldn't let go of it. Fortunately for her the progression of CJD is much, much quicker than PSP. She was diagnosed and roughly a year later she was gone. During that time she went from almost normal, to balance issues, to "sundowner syndrome", to wheelchair bound, to blind, to bed ridden and unable to respond to anything. Terrible disease. We were married 31 years. Now here I am again facing another terrible disease PSP with my current wife of 23 years. However, I refuse to let any of this PSP to define me or distroy me in any way.

Jimbo

[Hidden]

My wife has PSP and she has developed pain in her right leg. Upper and lower leg. Her hamstring is very tight and she suffers from shin splints.

Discussed this with the specialist at the neuroscience department at Addenbrooke's hospital and they think it is not a typical symptom for PSP, at least not directly. What is common though is that sufferers from PSP get stiff muscles, e.g. shoulders and around the pelvis and hips. That is due to the mobility and balance problems as a result falls happen, people start to thighten their neck muscles and lift there arms whilst walking. And they shuffle. All of this at some point can result in pain. Falls are in particular bad. When you fall your muscles spasm and if they do not completely relax afterwards, then you can develop chronic pain as the correct posture fails.

By the way, the PSPA has published a guide called 'Pathway of Care for PSP' which describes very well how PSP starts and develops over time. It is free to download from their website.

The best thing is to get massage and to pay attention to the posture and consciously trying to improve it.

[jimandsharynp in reply to Hidden]

Gerko, Thanks for the help and advice.

Jimbo

[marytea13]

Hi Jim I get these occasionally. I use Panadol osteo + a wheat heat pad - one that u heat in a microwave oven but careful not too hot! Hope these help marytea 13