Pain and Parkinsons

[Nuthatcher]

I am having severe pain in my right hip. Does anyone else have pain in their muscles and joints from Parkinson’s?

[Gymsack]

Yes, many people report pain due to the Parkinson's. You should be aware however that the official position in text books and therefore that many neurologists and doctors hold is that there is no pain with PD.

There can be a lot of pain. My arms and neck and shoulders, fingers elbows and knees ache from shaking and tremor but my biggest pain is my back. The pain in my back is effected by three things. If I am late taking the Levodopa, or if I have not had a bowel movement in a couple days or if I have not been able to go for a walk. The bowl problem is caused by PD / internal muscle communication ( please dont tell me fibre and water that is all I eat or drink ) and as soon as I have a movement the pain in my lower back stops for a day.

I use five TYlenol and CBD cream and an aspirin type cream ( sparingly)

Good luck , may you find a doctor that helps you

[Wonky-Bride in reply to Gymsack]

I had chronic pain in my left hip and it was osteoarthritis's: I have just had the op, so do get an X-ray to be sure.

[cjCardio53 in reply to Gymsack]

Amen! Worst pain is in my back..the runner ups are my neck and shoulders.

[JohnPepper]

Hi Nuthatcher

Everybody peresents differently. PD is very difficult to diagnose exactly.

Have yo thought of doing FAST WALKING, which has helped me to reverse my PD and now at the age of 89 and having had PD for 31 years, I am still in good health but, when I stop the fast walking, the PD starts to take over again!

[Nuthatcher in reply to JohnPepper]

I do elliptical for 30 mins with elevated heart rate; either weight machines or my new interest TRX. , or VR boxing. Plus walk my Labrador 3x a day. Don’t think I would call walking her FAST WALKING though b/c she likes to sniff too much. LOL. thanks for your response

[JohnPepper in reply to Nuthatcher]

I have nothing negative to say about sports equipment it is all good, BUT, they do not do anything to the brain! WEhen you do fast walking you produce a very important chemical in the brain, called GDNF (Glial Derived Neurotrophic Faactor). Glial cells are brain cells and they produce a chemivcal that repairs damaged brain cells. PD damages brain cells and GDNF repairs them, does that amke sense?

[Esperanto in reply to JohnPepper]

Various activities, not only fast-walking, but also other physical exercise and cognitive challenges, may potentially stimulate the production of GDNF. Research has shown that regular physical exercise, such as aerobics, strength training, and cardio, can increase GDNF levels in the brain. Additionally, studies have suggested that cognitive activities, such as learning new skills, solving puzzles, or engaging in mentally challenging tasks, can also stimulate GDNF production. However, it is important to note that research in this area is still limited, and more studies are needed to gain a clearer understanding of the relationship between these activities and GDNF production. Therefore, it is wise to consult reliable sources and consider scientific evidence before drawing conclusions about the effectiveness and the use of only fast-walking in increasing GDNF levels.

[JohnPepper in reply to Esperanto]

Correct! But, a university in the USA, I can't remeber which one, did a study on all forms of exercise to see which came out on top and it was FAST WALKLING. All strenuous exercise produces GDNF!

John

[Cons10s in reply to JohnPepper]

How much time each day do you commit to fast walking. I read your book long ago and then gave it to a fellow parkie. I couldn't fast walk back then but I can now so I may try again.

[JohnPepper in reply to Cons10s]

Hi. If you have read my book, 'Reverse Parkinson's Disease' you would know trhat I walk for one hour, as fast as I can, every second day!

[jeffmayer]

Yes my neck in between shoulder blades due to posture I believe

[Jannl]

yes, I‘be got cramps in both hips. Magnesium oil with specific daily exercises help, but not definitely, it stays a point of attention

[Racerk]

Try to search youtube for hip pain exercise, the most common stretching is knee to chest. As we get older, I think we would have some kind of body aches w or w/o PD, or PD just make it worse, stretch it out and hope u feel better.

[Nuthatcher in reply to Racerk]

Thank you for your response. This seems to be the major theme of all the posts and it makes sense. I just feel so much better to hear I’m not crazy to think this is at least influenced by my PD.

[Parkie1]

Yes,chronic pain in back, legs, neck. My next dose of cobeneldopa (madopar) eases it. Exercise also seems to have a temporary effect, but it's a default symptom in my case. Keep moving as much as possible.

[STEWBABY]

DITTO!! SEVERE LOWER BACK PAIN AND RIGHT HIP PAIN WHI CH WAKES ME SEVERAL TIMES A NIGHT. FORCES ME TO SLEEP ON MY BACK. THEN AFTER A WHILE I TURN ON MY SIDE AGAIN UNTIL THE PAIN WAKES ME AGAIN. I AM GOING TO HAVE BOWEN THERAPY SOON AND UP MY EXERCISE WHICH I DON'T PRACTICE ANYWHERE NEAR AS I SHOULD.I'M A 78 YEAR OLD MALE DIAGNOSED IN APRIL 2021 WITH PD. TREADMILL HERE I COME!! GOOD LUCK!!!!

[chalnunn]

Pain is how my Parkinson's first presented. I had knee replacement that would not stop hurting. Eventually both legs started hurting and I couldn't stand. Eventually after 3 yrs of not knowing the cause, my motor symptoms reached the point where I was diagnosed with Parkinson's. I take all he meds - Levodopa, Rasagaline, and Pramipexole. With treatment my pain is much less. I have found my disease attenuates all of my musculoskeletal issues. Partly it is related to posture but mostly it is when my Parkinson's is acting up. I recently had a ruptured disc at L2,3 with severe pain and they didn't want to operate. They eventually did minimally invasive discectomy and fusion with rods and screws and the severe pain is gone. I am left with the generalized back discomfort related to my Parkinson's. The black cloud keeps following me as I had an awkward fall off a boat dock 8 weeks ago and fractured my femur just above the knee replacement. It was the most painful experience of my life. I am 8 weeks out and still have lots of pain and can't walk on it. Crutches and walkers don't help the pain and posture issues. Parkinson's makes all of this worse and recovery slow. When I wake up and my meds are low, my pain is worse. Once I get my meds in me and a little dyskinesia kicks in my pain is less. I am 7 years into my diagnosis and 9 years of symptoms. I am 69 and tremors are not my main problem. It is mostly bradykinesia and pain. I am convinced pain is related to Parkinson's.

Chal Nunn MD

[pdpatient in reply to chalnunn]

Your experience with this disease is very sobering and enlightening. I feel for you and empathize with you. I read about experiences such as yours and I try to get inspiration from the matter of fact resilience that you and others in this forum demonstrate while dealing with the issues that challenges you. It reminds me that I too need to get a grip on my experience with the disease which may not be the same as yours, but challenging nevertheless. I am still in my working years and I find the best way to deal with Parkinson's is to get inspiration from others who are willing to fight and persevere despite the pain of living in the moment - metaphorically, physically and emotionally, which quite exhausting.

Thank you for sharing your circumstances in detail and my prayers go out to you.

[Nuthatcher in reply to chalnunn]

Thanks for replying. I have symptoms very similar to yours and I too noticed that my pd meds help with it more than ibuprofen does. That is why I started to think it might be pd related. Hope you get out from under that black cloud and pain and your leg heals fast

[blackbear701]

Yes, I have pain but almost all of it comes after inactivity, the worst of which is in the morning, getting out of bed, and most of which is in my lower back and shoulders. Pain was my first symptom as I have no tremors, even now, 6 years into it. I exercise daily, walk 2 miles every evening, do rock steady boxing, watch exercise videos, etc. I am fine as long as I keep moving. But even after just 5 minutes in a chair, the pain returns when I get up but dissipates after movement. Sometimes I would love to just sit around, but that is the worst thing I could do. Are you able to do any exercises at all that are specific for hip pain? There are lots of Youtube videos you might want to seek out.

[HugoRipanykhazov in reply to blackbear701]

I was at my PD doctor last week and mentioned the pain, which is in my left hip.

As I was leaving I asked for a tylenol for that pain and the doc was reluctant to give me one!

So I left, annoyed and hobbled down the street. BUT within a block or two, I noticed that the pain had mysteriously COMPLETELY GONE!

It DOES occur after periods of inactivity but I have a strong suspicion that exercise is the key.

[dkdc in reply to HugoRipanykhazov]

my pain is always worse with walking and exercise

[Crollo1]

Yes I had the same and ended up with a hip replacement. Much better now

[gomelgo]

I get pain in all the parts that have tremor. It's as if the tremor makes the muscles grip and that causes pain. Shocked that neuros have the nerve to tell people that there is no pain in PD. We need to induce pd in them instead of the poor mice. Maybe then they would have a more empathetic approach to pd. I went through 5 neuros to find the compassionate one I currently have. Exercise does make it better but could also cause injury if not done mindfully. Sorry for your pain, for all our pain.

[Nuthatcher in reply to gomelgo]

Yes, my first neurologist was not even interested in how I felt much less compassionate. If I asked a question he would turn his back to me and ask his “fellow “ what he thought about that. It was almost like he was afraid of getting to know me or care because he knew I wouldn’t be around much longer. Anyway I switched doctors. I am fortunate that I got to meet this one first because I was a double blind research participant and sometimes she would check me She is very caring.

I am sorry for your pain. Thank you for your response. It is frustrating to not really know what is Parkinson’s and what is just part of life and aging.

[Kingsdaughter1]

Like many others that have commented, I have much pain & it is my biggest problem with Parkinson’s. It used to be primarily in my neck/ shoulders / upper back but as expanded also into my lower back and left arm/hand and left leg/foot. It infuriates me that I also have had neurologists who claim there is no pain in Parkinson’s 😡.

[PDGal4]

I am sorry for all of you who are having to live with chronic pain. Thank you for sharing your experiences. I have overall stiffness and ache everywhere, a sort of bruised inside feeling. I also have very tight hips and terrible pain in my left groin when I lift or move that leg in certain directions. I had X-rays and MRI of that groin area done with results showing no known cause (which is good because it means no tears, nothing pressing against nerve, no arthritic damage). I have tight muscles and pain in my upper arms and lower buttocks, calves, and hamstrings. Pain comes and goes

I know mine is from Parkinson's as one day I was lying on the couch reading and suddenly felt in pain everywhere. I realized I was 30 minutes late on my Rytary. 45 minutes or so after taking, pain had lessened to that overall achy feeling. I went to a pain doctor who confirmed seeing many people with Parkinson's in pain. I heard a movement disorder specialist confirm pain as a symptom of PD in a presentation. He said we could catch more cases of PD earlier by hanging out in orthopedists' offices.

I find, like some of you noted, feeling at my worst after lying down for a while. Terribly frustrating. I walk/exercise 5-7 X week, plus weight training, yoga, and tai chi. 11 years into my diagnosis, living the best life I can.

[Manypony in reply to PDGal4]

Hip and groin pain is my top symptom these days. I want X-rays and MRI like you had. It’s unimaginable that there’s nothing to see with such strong pain.

[gomelgo in reply to Manypony]

I have had MRI and it's super challenging to stay still for them.

[WinnieThePoo in reply to Manypony]

Do you have the ability to control the "loudness of your gloves? If so, try using them so quietly you are not sure all fingers are working

[Manypony in reply to WinnieThePoo]

The Synergic gloves don’t have a way to control loudness or really any control. Just the programmed protocol

[WinnieThePoo in reply to Manypony]

Ah.

I wondered whether that might be the case. How "loud" would you say they were?

I think you said they were clearly audible. I think you said the placebo was not so loud.

I wonder a bit how much Synergic know what they are doing, and are running "the pattern" full bore.

That might explain both why your results are disappointing, and why the placebo was better - in some ways

[WinnieThePoo in reply to Manypony]

I have found my gloves very effective in managing (completely eliminating) my newly arrived Parkinsons dystonia

[IdaOphelia]

Yes! I had constant pain in my right upper back, just below my shoulder blade. My doc also dismissed it. However, since I’ve had DBS surgery my tremors in my right side are gone and the pain with it. It was also resolved with the help of dry needling which I’ve had done for months. Only after the survey did the relief stick. Now I notice that my hips are aching especially during the night. While the surgery helped with the tremor in my extremities, I’ve been told that the core muscles might not see the same degree of relief. So considering I also have arthritis in my back, my doc attributes that pain to that now. However, when I take a muscle relaxer before bed and sleep with a firm pillow between my knees I have significantly less pain in my hips and lower back. Hope this helps.

[Gallowglass]

This book got my Parker bad hip cured and I am Back to walking! Still do these exercises daily. Treat Your Own Hip (810) amazon.com/dp/1942798202?re...

[Nuthatcher]

thank you.

[dkdc]

My 2 cents. I just got the nerves in my SI joint burnt off due to pain. Most exercise makes pain and coordination worse. It takes a month plus for nerves to die so we shall see. then maybe I can tolerate exercise besides light swimming.