#87: Do you have Parkinson's and suffer from shoulder pain?

[@Kerry-xx7gt]

Thank you for the chat both of you. My husband is going to have a DaT scan in January to see if he has Parkinsons and he has suffered with shoulder pain for nearly a year now.

[@davea5794]

Neck and shoulder pain was one of my earliest symptoms but it has lessened over time, possibly due to the medication.

[@kimberlyseiber9257]

Thank you for this information.

[@michaelkeighley7989]

I'm going through elbow pain. Knee pain , ankle pain and also getting pain in my head too. All comes and goes at different times . I got diagnosed in August this year . Thank you for your streams. Keeping me positive

[@thesecretlifeofparkinsons]

You got this!

[@JohnMcCreery]

Interesting topic. I have shoulder pain in my right shoulder. I can do bicep curls with light (3kg) weights, but can’s press above the shoulder. (Almost 80 white male, diagnosed in June 2023).

[@janstie1]

Finally you mention ELBOWS. I thought I was the only one with this pain.

[@Zerobar78.]

I get a lot of elbow pain on my left side from squeezing my arms too tightly when I sleep. My shoulders have been "tight" for years now but exercise is helping immensely with that. Massages are worth their weight in gold, especially for the shoulders, I try to go monthly.

[@lalittl]

Can you guys do a video where you explain your symptoms coming and going? I think Brian has said before that some symptoms remain for a couple of weeks and then subside. Is this common? I always thought parkinsons symptoms stayed the same and then progressed

[@thesecretlifeofparkinsons]

That's a great idea! I'm creating our 2024 list of topics right now and adding this one down! Thanks!

[@jnm.624]

I had Frozen Shoulder after surgery on my hand. I couldn't move my shoulder at all and had to have a cortisone injection. Had masotherapy. I couldn't touch my belly button or anything... it's sometimes mistaken for a torn rotator cuff so I had to get an MRI to rule it out before the cortisone. It's like Elmer's glue was poured into your shoulder

[@kalliroik.8456]

Thank you for your heart warming podcasts! Happy holidays!!

[@JessieTheBeagle]

Stretch bands all the way. Start light get tention and do a motion range of based training. With band resistance. Blood flow and forced motion training helps. Don't forget a massage gun for muscle tension also.

[@kimberlyseiber9257]

Thank you. I will pass this on.

[@johndonaldson5126]

Finally someone else with elbow and shoulder pain. I was recently diagnosed (skin biopsy) but have had symptoms for 10 years. Perhaps 2 to 3 years ago I started having elbow and/or shoulder pain. I mostly have the pain start up, then increase in pain, while walking. When that happens all I have to do is sit down for a couple of minutes after which the pain goes away. It isn't such a strong pain that it really hurts, it's more of an annoyance. One time I did walk from a medical office to a parking garage about 1/4 mile away. On that walk the elbow and shoulder pain increased that I almost couldn't tollerate it. Again within a couple of minutes sitting in the car the pain went away. I've asked many people who have PD if they have elbow and or shoulder pain but nobody said so. Sometimes the pain starts when I'm on the bicycle at the YMCA but I can decrease the pain by lifting both arms and waving them around.

[@kimberlyseiber9257]

This is an awful and ongoing problem for my Husband. He just muttles through the best he can. Takes Naproxen 500 mg pretty regularly now with occasional limited relief.

[@kimberlyseiber9257]

Thank you.

[@simplerelaxation-amindatre2472]

Shoulder pain in the main problem I have. I’m going to ask my MDS Dr Pahwa about it.

[@Cassie66179]

Stretching is essential..I do yoga and Pilates stretches daily and it helps tremendously. It’s been 10 years since my PD diagnosis and I found that stretching is as important as my exercise routine to combat stiffness and pain.

[@thesecretlifeofparkinsons]

You are so right! I need to incorporate this in my daily routine.

[@kimberlyseiber9257]

Thank you.

[@joefw2446]

I am 64 yo diagnosed 15 months ago and symptoms for about 4 years. I had right shoulder and bicep dull pain for about a year until the latest increase in Carb/Levo. Yes its annoying. Glad it stopped.

[@kimberlyseiber9257]

So you really feel that c/l helps the pain? May I ask how much you are taking? Thank you.

[@joefw2446]

@@kimberlyseiber9257 I am taking 2x 25/100 C/L 3 times a day plus one slow release 25/200 at bed time. Dont know for a fact that dose stopped the shoulder pain only that it stopped shortly after increasing to that dosage... Now the latest is an occasional tingly nerve feeling in that same area. So you just never know whats next with this disease... I try to take the meds on schedule every five hours but when I fail to seems no noticeable difference in symptoms like tremor (no obvious on/off times). So its trial and error with every patient. A guessing game... Best of luck to you!

[@ricardotorres1130]

Going thru shoulder problems right now. One year after diagnosis. This episode was helpful knowing I'm not alone with this and other problems that just continue to pop up

[@janstie1]

My pain in the elbow is very painful. It's like you hit the funny bone. I can't pull myself up and out of the bed.

[@bevprice6120]

It started with pain all the way down my left arm. At first i thought i had bumped it, i had slept funny, or i had pulled a muscle.... After 3 months of intense pain i finally went to my doctor. He said I'm going to refer uou to a neurologist- but i said the pain is in my arm, not my head !!!

[@someonenew9442]

My shoulder pain is hardly noticeable through the day now that I’m on madopar (UK), but it gets much worse in the evenings and last night was a sleepless night. It feels like my arm is attached to a hammer-drill or a heavy concrete block which I can’t set down or throw off no matter how I try. Lucky I sleep alone! Also feel like there is broken glass scraping my left rib-cage. Doctor mentioned inflammation but didn’t prescribe anything - like you Jessica - I wonder is this another wonderful PD ailment or something else. Other pains come and go. Anyway, Dr Berg recommends beef and cabbage for inflammation, and you both encourage me to exercise more. I force myself to swing my left arm when walking. A warm bath is lovely. Thanks to you both and to others on here as I don’t have any PD friends elsewhere.

[@salgadotrabal]

Thanks for talking about this subject in this episode. I’m going into my third year after diagnosis and this is what one of the symptoms, among all others, that has progressed rapidly. In my case, I can’t raise my left arm above chest level, even after many physical therapy sessions and exercises. As suggested by others, I will work on stretching more.

[@thesecretlifeofparkinsons]

Stretching all the time does help. Has medication helped at all? My MDS increased my C/L and that helped way more than I anticipated.

[@adamrtr71]

My wife has YOPD, 3 years now and is suffering from incredible back pain. Anyone else been through that? She had to come off her Transdermal patch because of very long periods of Dyskinesia. Now she isn’t getting enough Dopamine. So her energy has crashed. Nice to hear of anyone else goes through the same and how they are managing . Australia

[@thesecretlifeofparkinsons]

I know some people who suffer from back pain. What was the transdermal patch used for? I haven't heard of that.

[@adamrtr71]

The transdermal patch provides a slow release of dopamine 24 hours a day, so you don’t get dopamine spikes like you would taking a tablet. It’s available in different dosage sizes depending on how much dopamine you need. It’s kind of like a large nicotine patch.

[@malcolmhiltz94]

I also have shoulder stiffness/discomfort on my tremor side of my body. I do LSVT BIG exercises every day and these help to loosen my shoulder & reduce the discomfort. I would recommend all people with PD go thru 4 weeks of specialized, LSVT BIG physical therapy. I will be doing these exercises I learned in PT for the rest of my life. Hopefully, these (in addition to other exercises) will slow the progression.

[@kimberlyseiber9257]

Thank you. We need to check this out.

[@christileneabrahams6416]

My pain from under my ear down the neck to under my scapula. A nagging burning pain. It bug's me most when walking.

[@rosered9029]

It can be confusing because seasonal aches and pains are very real as well. My rule of thumb is, inflamation? BAD! I don't want to give any sign of inflamation the ability to start building upon itself.

[@WillWorthen]

I just finished phase 2 of dbs and I've never put the two together. I've had shoulder pain for a year plus, it has subsided a little bit but I do still have it.

[@thesecretlifeofparkinsons]

Did you ever tell your MDS about the pain?

[@viproo6302]

Shoulder and lower back pain, feels very arthritic. It’s the holidays 12/16/2023 So too much sugar in diet increasing inflammation. Thank you for your info.

[@thesecretlifeofparkinsons]

Good point! Thanks for sharing.

[@lizcampbellholroyd3876]

Hear you my parky friends. Diagnosed 14 yrs ago. 🥰. I do get some shoulder pain that comes and goes but Most of my pain and muscle spasms are in my lower back and deep in my hips. Jessica, can you explore voice to type?

[@thesecretlifeofparkinsons]

You mean different technologies that do it (voice to type)?

[@DeboraLeung]

I have had lots of shoulder pain, but I know it started in 2018, after I had a bad fall and broke my humerus/ shoulder. It took me over 8 months to recover, but I also have cervical spine pain, and now (especially when I exercise) both of my shoulders (especially the right). I have Radiculopathy, and have a history of pain and numbness (hand to shoulder). This was far before my PD diagnosis, in 2021. I take a PD exercise class, and currently I have lots of pain. I am being careful, and use a band, instead of weights. I talked with/ my MDS, and he will refer me to more PT in January. My MDS keeps telling me that NOT EVERYTHING IS FROM PD, but I have so many PD related conditions now, but he says “ well, don’t blame it all on PD”. Sometimes now, just sleeping, I am in pain, and it keeps me up, but I take Tylenol, and it can help a bit. Thanks for sharing. It feels good to hear from others experiencing similar things. It does provide encouragement to keep going and to stay positive.

[@thesecretlifeofparkinsons]

I hate when they say don't blame PD. Why not? I blame it for almost everything. To me, it's all connected. Keep moving!

[@Anthony99355]

Have you always taken an anti Dyskinesia pill from the beginning? I’m taking Rytary and mipexole 3x a day but no dyskinesia blocker.

[@thesecretlifeofparkinsons]

My MDS actually started me on Amantadine first before C/L to see if it helped with tremors. But it wasn't enough. She just kept me on it after she put me on C/L. Then I think I got tired of taking Amantadine and decided it doesn't do anything so I stopped taking it (I should have told my MDS). So by my next appointment, I told her this, but then I told her about a few new symptoms and she said that is dyskinesia. I also associated dyskinesia with how Michael J. Fox moves, but it could be other things. I was swaying a lot and felt myself moving even though I knew I didn't need to. IT was weird. But I got back on Amantadine and it's calmed down.

[@newworld6474]

I have had shoulder problems but I think it was caused by calcium building up etc , had back problems caused by bad chairs etc ... have elbow ligament aggravation from holding my arm taunt while sleeping to stop arm shaking so I could sleep ... now weights aggravate the tendon etc etc the joys of getting older ...

[@thesecretlifeofparkinsons]

Back pain on top of shoulder pain....sorry to hear that.

[@auroramatera7555]

Going through shoulder pain every day now. 4. Years after my diagnosis. Which meds are you taking for your regidity Jessica……..you mentioned the name but I missed it ❤❤

[@thesecretlifeofparkinsons]

I just take carbidopa/levedopa and amantadine. My MDS had me increase the C/L and that has helped more than I thought it would.

[@auroramatera7555]

@@thesecretlifeofparkinsons thanks 🙏

[@kirstindalessandro4002]

You would know if it was frozen shoulder, it's more than just not swinging your arm although not swinging your arm could be a cause. Your shoulder is literally frozen. Its a horrible pain and you can't lift your arm over your head or put on a jacket. You can't wash your back and have trouble getting dressed. I had it on both of my shoulders and was seeing a PT to try to regain flexibility.

[@thesecretlifeofparkinsons]

Hey Kirstin! How are you? Did the PT help? Is this new for you?

[@angelakindon9839]

I grind my teeth and have pain like That unless 😅I wear my appliance (looks like a retainer). L

[@thesecretlifeofparkinsons]

Random question, but asking because I have considered a mouth guard...do you also get ear pain at night? If I wake up sometimes and I want to turn over, I sometimes lift my head but my ear is throbbing! I have to give it a few seconds before I can really move because it hurts so bad. Then it goes away.

[@kimberlyseiber9257]

Has anyone had botox injections specifically for shoulder pain that is localized at the top in the muscles next to the PD affected shoulder??

[@thesecretlifeofparkinsons]

I have not. Instead, I went to a physical therapist and because of the targeted pain, they did wonders after 4-5 sessions (and I increased meds). So much better now!