pain?

[ottercat]

Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it hurts again. Taking 2 ibuprofen fixes it for the day, allows me to go to the gym, get housework done. Just curious. Was diagnosed in 2016, had DBS in December, med regime is mucuna and amino acids (currently tapering down).

[Sherry1960]

Yes. I figured it was from muscles tensing at night. Once I get up and moving, drink some water it is alleviated.

[ottercat in reply to Sherry1960]

Hmm. Once I get up and moving, it really kicks in, surprising me so that I yelp. Thanks for your reply, though. I'm glad yours is different from mine.

[Sherry1960 in reply to ottercat]

Sometimes under medication can cause issues.

[ottercat in reply to Sherry1960]

The current regime has freed me from frequent violent vomiting, which I'm less willing to tolerate than muscle pain. I'll mention it to the doc, next time.

[GermanShepherd79 in reply to ottercat]

I agree with the person who said look for reasons other than PD. My husband had bad knees and bad hearing long before he had PD. He still has these problems. When someone has a global problem like PD, they tend to assume each new sx is PD, but having PD does not make us immune to other things. Let your neurologist look at the PD, but see a regular doctor who may be more objective and consider arthritis, osteoporosis, spinal stenosis etc. which could cause such problems. Good luck.

[ottercat in reply to GermanShepherd79]

Thanks for your thoughtfulness. Those things have been ruled out, though.

[ottercat in reply to GermanShepherd79]

Dear GermanShepherd79, You were right! I was wrong. Went back to my sports medicine doc. The things that I had ruled out weren't causing the pain. Found spondylolysthesis (in the old days they called it a slipped disc) and suspected lumbar spinal stenosis in the early stages. PT for me--and ibuprofen. Neurologist prescribed gabapentin which changes the experience in a weird way, does relieve some aspects of the pain. Thanks for your suggestion! Best wishes.

[Psalmody]

Yes I do every morning. Not fun.

[ottercat in reply to Psalmody]

What's your strategy for carrying on?

[Gallowglass]

Yes. I always have pain during c/l OFF periods. I’m On for one hour OFF for 3. If I exercise or get busy on a task I can ignore it.. But sleep is tough. I’ve. Been told I have peripheral neuropathy and vagal (vagus nerve) neuropathy.

[ottercat in reply to Gallowglass]

Hmm. Things I have to look forward to, I guess. Thanks for reporting!

[Agnes1234]

Consider non-PD origins...could be a rheumatological disorder like polymyalgia rheumatica. You need some blood work to look at inflammatory markers in the body...perhaps this can rule out some things.

[ottercat in reply to Agnes1234]

Thanks! Am in process of getting bloodwork done. My neurologist thinks it's PD though. We'll see. Meanwhile, will keep on researching.

[Furch]

Actually I have no experience related to DBS, other than we are going to neurosurgeon today to talk about options R/T DBS or perhaps getting a consult with UNC Chapel Hill team of Neuro-modulation, which may include Focus Ultrasound..