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Topic Back pain? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2017.11.30 17:25
We will see the neuro next Wednesday, but until back pain common? Carl is having excruciating pain and has had it for over a week. Is this normal?

By LOHENGR1N On 2017.11.30 19:59
Jane, yes back pain can be normal esp. if history of back problems. Sounds like dystonia maybe as the disease progresses it can in Some present dystonia a slow contracting of the muscles (cramp or charlie horse ) so if the back muscles contract and twist us it results in pain. Keep an eye on the swaying you mentioned in another post, my swaying increased before I started flopping. Good luck at the Neuro's

By Sheridan On 2017.11.30 21:51
My husband had back pain that we attributed to his PD. He has quite a high tolerance for pain but it was getting worse. Saw MD and he ended needing back surgery with spinal fusion!!! He did incredibly well with it and had immediate relief of pain. I feel really bad that he suffered as long as he did though. I belong to several PD online support groups and it really seems that a lot of PWPS suffer wth various back problems??!!

By jcoff012 On 2017.12.01 13:17
Thank you for the quick responses! I always worry he will not tell this wonderful doctor when he is hurting. I will be in the room, so will let you know what is said.

By mylove On 2017.12.02 08:37
Be vigilant that they don't automatically write everything off to PD. If I were you, I'd make them rule out other things first, like Sheridan mentioned.

Ironically, Ben has been down (literally down) for three weeks now with intolerable, intractable back pain. And we have to "fail" conservative therapy for 6-8 weeks before they can order the MRI to see what's going on, so...facing many more weeks of sleepless nights. But dystonia isn't his issue. He's getting nothing at all out of the muscle relaxers...this is something nerve or bone.

Far more suspicious of that 500-lb generator that he and the neighbor loaded and unloaded out of the back of his pickup the day before the pain started. Because Carl has that same mindset that Ben has, it wouldn't surprise me if something happened while he was working. (Aka the "twinge" he had in his back but didn't mention because I was about to go out of town for a week and he didn't want me to worry....) You, know because they're still bulletproof and 20 years old, right? Lol

Keep me posted. I'm curious to hear the verdict you get. As far as we go, I'm fighting the PCP's dismissal that "oh, it's just sciatica... He's had that before. This is something on a far larger scale, and now he's losing motion and feeling. Pretty dang frustrated. At least I'm getting lots of practice in learning how to dress him, since he can't bend at all now.

By LOHENGR1N On 2017.12.02 14:11
I didn't say or mean write everything off as P.D. however any existing or underlying problems (ex. disc problems, arthritis, compression fractures etc.) will be affected by dystonia's pulling and twisting. Hoping both Ben and Carl find some relief soon.

By mylove On 2017.12.03 09:11
I know you didn't. I'm reacting a bit to the frustration of having that on his chart and having it be the 'easy' answer to everything. Sometimes I feel like those who do not have PD on their diagnosis list get the root cause of their problems looked at a lot faster, particularly by busy PCPs.

Thanks, Al. What a crappy time of year to be down and incapacitated. At this point, the holidays are off pending some kind of positive change in his pain. Hope you're doing better down there.

By jcoff012 On 2017.12.03 11:20
Michelle, I have been reading your posts about Ben on FB. I feel for you. You are right. Knowing Carl, his pain could very well be brought on by his insane building in the back. I just wanted to hear from others about possible PD causes. We all have witnessed how a PWP avoids telling the neuro everything! I like being prepared for Wednesday’s appointment! I hope Ben and Carl get relief soon.

By 839Ellen On 2017.12.04 09:47
My husband had excruciating pain when he would bend over and it would immediately go away when he straightened up. PT didn't help. Last year he fell and broke his hip, had replacement surgery. Ever since he fell, he has had no back pain.... Very bizarre but glad that it resolved somehow.

By jcoff012 On 2017.12.04 21:34
Well, he rescheduled his neuro appointment til January...said between the San Francisco cold this time of year and his back pain he didn’t think he could stand the long drive to and from...we will drive up the day of the Jan appt, then spend the night. I will keep you posted!

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