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Topic PAIN Go to previous topic Go to next topic Go to higher level

By mylove On 2012.10.30 22:43
I know we've talked about pain here before, but I want to confirm that we're talking about the same kind of pain. Over the past year or two Shakydog has gotten worse. The pain which was tolerable before has now become constant. He describes it as 'hurting from head to toe'. I'm not talking about pain from dystonia or tremor or falls or even from trying to hold himself in any position, because he still gets around fairly normally, but more of a general all over body ache which becomes intolerable at times. He has frequent headaches and joint and muscle pain, and even in his lower gut. He has tinnitus that drives him crazy. No one takes him seriously because they say A) There's no pain with Parkinson's or B) Nobody could hurt all over all at once.

So I'm asking this - has anyone else experienced this kind of pain? How did you deal with it? It's wearing on him. He's becoming progressively more despondent. He's tired of being in pain and tired all the time.

Is this pain PD related? Or should we be looking for something more like neuralgia? I'm desperate. I've even suggested that he get his medical MJ scrip and try that; it's supposed to relieve pain, even for patients with things like bone cancer. If it can help that, maybe it can help us. Any insight or suggestions would be greatly appreciated!

By LOHENGR1N On 2012.10.30 23:56
ML, I can answer some of your questions some I can't. Yes I'm in constant pain also and it's from head to toe all over joints and muscles. I don't have frequent headaches though or tinnitus. We all know Parkinson's Disease is painful and has pain associated with it anyone who doesn't believe that doesn't know their donkey from their elbow! Same with those that don't think anyone can hurt all over all at once!

As to how do I deal with it? I really don't know! I just plog on with it, hoping for a few moments of relief during the day. Yes it sucks being in pain and tired all day every day. But to me it beats the alternative. I'd rather be looking down upon the faces of flowers than looking up at the roots.

Neuralgia? it might be diagnosed as that but the difference of it being PD related or neuralgia? Neuralgia is nerve pain the only difference it might make is other med's for pain might be available as some insurances might take the stand there is no pain from PD and not cover anti pain medication.

Sorry I can't be of more help hang in there you two!

By lurkingforacure On 2012.10.31 18:55
We also have horrible pain, and it is worst at night, early evening usually, when you would think it would not be (full day of meds built up...but no relief). My husband describes it as a raw nerve-type of pain, like when your tooth nerve is exposed and it rockets through the body like a knife. It drives him crazy and the only thing we have found that helps (and sometimes not always, unfortunately), is for me to hold him while he is lying on the bed, very tightly, like you are spooning with a vengeance.

The other PD pain I've read about we have too, and take aspirin for it when it gets really bad. My husband also takes a 5-hour energy drink and for some reason that really helps with many of his symptoms, just not for very long.

We are currently looking at this contraption-anyone know anything or heard anything about it? Lack of good sleep is taking its toll...

http://fisherwallace.com/parkinsons

By mylove On 2012.10.31 20:27
He doesn't sleep well either. I have to admit that's one of the things that's hardest to take - that it's taken him away from me at night too. Most nights I fight sleep for a long time until I absolutely have to go to bed, and he's not ready to even come in out of the garage until midnight or so. I've tried waiting him out, and I just can't do it. But he can't come to bed any earlier either, and I get that. It just stinks.

It does seem that the pain is worst at night.

By jcoff012 On 2012.11.01 00:10
My husband says he is in constant pain, too. He is now, after three years, sleeping in a recliner most nights (he usually sits up in bed til I fall asleep, then he moves to the recliner, then back in the early morning to bed...he usually is very tired most days.

He doesn't take anything for the pain...tried several things and none worked, so he just lives with it...I feel badly for him.

I wish I could help, but I do get angry when people say PWP don't have pain...give me a break...it is constant and often dreadful.


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