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Topic Pain in legs Go to previous topic Go to next topic Go to higher level

By jaxrock On 2012.07.12 08:02
Does PD ever cause extreme pain in knees and legs? My husband has the most intense pain especially in one leg........knee......then all the way through the leg...Now the other leg is also bothering him.
Even after x-rays, and many dr. appts., we still don't have any idea what's causing it...seems to get worse day by day.
He can barely walk now........uses a walker often..........and is in pain even while sitting and laying down.
I can't stand to see him in such misery!
Any ideas?
We've been to a rheumatologist, his neuro, his PC, and today we see the orthopedic doctor. Spent last Saturday in the ER due to the excrutiating pain...and, after 22 x-rays, and needle in knee to withdraw fluid, pain is still there....
Can it be from PD???

By LOHENGR1N On 2012.07.12 08:23
Jaxrock, Yes the pain very well could be from the PD.

By mylove On 2012.07.12 09:27
I am not an expert in any way shape or form, but I'll share something we have been going through. Your statement about seeing every doc in the book and getting no clues really resonates with me, and echoes some of our frustration. It seems like my spouse goes from epic health disaster to disaster. We have these cycles of good and bad. It goes something like this: All of a sudden, out of the blue, something crops up. It's terribly painful, he tolerates it for awhile, then treats it with painkillers, then starts the cycle of PCP, walk in clinic, ER, specialists, etc. We have MRIs, X rays, CTs, blood tests, scopes, trial runs of antibiotics, corticosteroids, etc. Nothing, and I mean NO-THING works. He's forced to live with the pain, take the painkillers, buck up, and endure. This rollercoaster usually lasts about six months, after which it tapers off and we have about four weeks of 'normal', relatively drama free life. Read: just enough time to somewhat recover before the next round of whatever body part decides to go haywire next. He never gets enough rest and recuperation to truly recover.

I firmly believe that it's this cycle, and not PD per se, that has recently cost him the ability to work a full day, and greatly contributes to his fatigue and exhaustion. It's definitely cost us most of our pleasure activities. And it's immensely difficult to watch him go through.

Now here's the rub. After the latest go-round we had alternative medicine recommended to us as a last resort to try. I have IBS, and acupuncture was something that was also recommended to me, so we thought we'd give it a try just to be able to cross one more thing off our list. It was really interesting what the acupuncturist said at our intake appointment after getting my spouse's history. I won't get this exactly right but I'm paraphrasing. He told us that my spouse has a neurological disease, and that we know. So the brain and nervous system is living in this constant state of imbalance, trying to accomodate for something that isn't there anymore. Nerves fire that aren't supposed to, etc. He said that constant state of upheaval keeps the nervous system excited all the time, and it acts in a sort of autoimmune behavior, attacking first one location then the other. He talked about the 'traveling pain phenomena', where it can be arm pain one day, hip pain the next, and a headache the day after. And not just garden variety pain - severe pain.

Of course now our neuro and PCP assure us that none of these things that my spouse has gone through have any connection to PD, but we have to wonder. Because what is the common thread? How else would a person have so many things go wrong just randomly? The odds are against it. For the record, the acupuncture did nothing, but his words still resonate, and I'm wondering if that could be an accurate assessment of the pain phenomena in PD. We here all know PD causes pain, although it's like pulling teeth to get a doc to acknowledge it. But when you have multiple, repeated episodes of severe pain that are untrackable, untreatable and mysterious, there has to be a common cause. The acupuncturist's explanation makes sense in that context. It's something to ponder. And if that's the case, then how do we treat it?

But of course we still go through the rollercoaster of experts, etc because what if you miss something? I have many concerns about this rollercoaster of sicknesses. I wonder when the medical staff will decide that based on his tests that always show nothing that he must just be a 'drug seeker' because every time we show up he's in terrible pain and that's the way they treat it. I'm angry because I always wonder when the pain will be from the cancer he gets from the hundreds of scans he's undergone in the last several years. And I'm tired of all the minimizing that the docs do about the pain he's in.

We hear you.

By parkinit On 2012.07.18 16:15
I just watched a webinar posted by the Parkinson's Disease Foundation yesterday. Part of its content related to pain. The video indicated that aching may be caused by a Vitamin D deficiency and approximately 60% of PWP have a Vitamin D deficiency, so this may be something to check as well.

The video may be viewed at: http://www.pdf.org/en/parkinson_briefing_medications

Here is another webinar focused on pain in PD: http://www.pdf.org/pdf/Pain_in_PD-Jeffrey_Wertheimer.pdf

Hope this info helps!

By jaxrock On 2012.07.23 13:37
Thank you to all of you...............I've just re-read your posts

Hearing that the results of a recent MRI showed "nothing significant" that would be causing my husband's severe leg/ankle pain caused me to have many more questions..............there doesn't seem to be any answer...at least yet.

I truly believe the pain is somehow related to the PD...even though all the docs say no.

All I know is this.............he can't walk without pain......he can't sleep without pain.....it's affecting his entire being.......mentally, emotionally and personality-wise. In face, I think it's wearing him out.............He's napping right now in the middle of the day..............

I want you all to know how much I appreciate what you've written...........it certainly resonates.........and I'll keep re-reading to motivate me to track down whatever is causing this..............

And I really appreciate that there is this place for me to vent!


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