Reminder to those that don't know: I have not been diagnosed with PD. I have been diagnosed with REM Sleep Behavior Disorder. But... I have a sore left shoulder.
Okay, so I've been hoping my sore left shoulder is just mouse arm. And I was hoping that the fact that I can practically hear the structural damage in my shoulder meant that it was not PD related. But then I engaged Dr Google and learned YES, frozen shoulder is caused by thickening tendons, adhesions, inflammation, and a lack of lubrication. That sounds about like my shoulder
For the last year to 18 months my left arm and shoulder has hurt. Sometimes I would use my right hand to pull my left arm up to wash my hair.
Here is my question (please be gentle): My shoulder has actually been getting better the last 6 months. I use it to hold things and don't have to pull it with my right hand anymore.
Could that be a sign that something I am doing is helping?
Or... is the frozen should for PD something that only lasts between 1 and 2 years and works itself out on its own?
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Bolt_Upright
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In the three months preceding my pd diagnosis (a few years ago at age 48, with right side tremor being the main symptom ) I felt like I had injured my shoulder. It ached but I hadn’t obviously hurt it. Maybe it was a coincidence. The shoulder pain faded, but in the following months my arm and elbow started to ache and my hand felt a little stiff too. My arm felt similar to “tennis elbow” which I had experienced years earlier after refinishing a hardwood floor by hand. I started an initial low dose trial of carbi-levodopa and while it didn’t quell my tremor, my achy and stiff arm and hand loosened up. Maybe coincidence too. A couple of years on and I revisited c/l now at ”full” dose 25/100mg, 2pills 4 times a day. Eliminates my tremor while on and in general I haven’t had a return of any mysterious achy-ness. Sorry, I can’t be more conclusive or definitive.
Dave, I had what felt like frozen should in my right shoulder and a physical therapist at the VA gave me exercises which I did and it seemed to help in that the frozen shoulder resolved after about 6 mos, but now I have it in my left shoulder so I question if the exercises resolved the problem. I now think the exercises may have helped some, but I am inclined to believe the issue resolved itself -- which I have come to believe is just another trick PD has played on me. Sorry. I am not doing the exercises this time and instead am just going to wait it out.
Thanks Marc, I really appreciate the information [although this is not the answer I was looking for]
I'm waiting for somebody to tell me that with PD frozen shoulder, the shoulder stays frozen until you find the magical combination of supplements to unfreeze the shoulder.
I will hang onto the belief that my sense of smell is still improving (and that this means something good).
My husband has PD and many years ago, before dx he had a frozen shoulder which finally settled after a steroid injection and exercises. It wasn’t one of his PD symptoms when dx in 2015. I however don’t have PD and this year had a knee replacement, and a couple of weeks after the operation I wrenched my arm saving myself from falling off a chair. The physio gave me exercises to help as well as for my knee.!
It grumbled on through the summer and has recently been very painful at night. Somebody on HU mentioned using a TNS machine to help it. We have one used occasionally to help with backache.
The pain relief has been amazing! I’m using it for 30 minutes in the morning and again at night. They aren’t very expensive and might just help you with your shoulder. I can’t take anti inflammatory drugs so I m pleased to find something that helps. I don’t think it’s always related to PD and can just get better on its own. The exercises didn’t help me.
Hard to say. Because frozen shoulder typically resolves spontaneously after 1.5-3 years. Also. those with thyroid disease (as you have told us you have) are at greater risk of frozen shoulder. I have had Hashimoto's and a frozen shoulder that resolved after 2 years. I think a more telling symptom would be improvement in the REM sleep behaviour disorder - I hope your stack is helping with that.
Thank you goldengrove. You might be interested in this post of mine: Myo-inostiol and Selenium for Hashimoto's (2017) healthunlocked.com/thyroidu...
I've been mirroring this protocol (I do 100 mcg of Selenium and 750 mg of Inositol).
The article shows 75 people with sub-clinical HT had their thyroid normalized in 6 months. Obviously my thyroid is not sub-clinical, but it made sense to me that it should lower the antibodies that destroyed my thyroid and those antibodies might be the same thing destroying other things in my body. That's my high school degree take on things.
BTW: My REM sleep is much better. I have not fallen out of bed in months.
Interesting post about selenium and myo-inositol in relation to thyroid antibodies, Bolt. And I'm glad your REM sleep is so much better - do you attribute that to melatonin or to your stack and diet more generally? My own thyroid antibodies have normalised- which I attribute to going gluten-free but could be wrong about. Meanwhile last year I developed another autoimmune disease - giant cell arteritis - and now take a powerful anti-inflammatory biologic called Tocilizumab.
Interesting. I don't know what my thyroid anti-bodies are. My GP says I don't have a thyroid anymore (I think he bases that on my being on Levoxil for 23 years now).
What do I attribute my improvement in RDB to? I jinx myself every time I say things are getting better
My 3 best guesses are:
1: Going to bed at the same time every night and taking Melatonin 30 minutes before bedtime.
2: Broccoli sprout tea.
3: Selenium + Inositol.
Those are my guesses. I need to get back to gluten free. I am close but I did have some pumpkin pie and did go off it for a few weeks. I really need to get back to the Specific Carbohydrate Diet. I believe in that.
Good luck with your Giant Cell Arteritis. I see that it is treatable, so that is good.
Thank you Jeff. Nobody is giving the answer I wanted (even though I was very clear in what I wanted to hear). I see you are a musician. I am too (amateur).
Believe me, if you have had a real frozen shoulder you would know it! When it is actually frozen and you jar it or move it past it’s point (which may be no higher than your waist) you could pass out from the intense pain. It is not bothersome and painful like tennis elbow or other painful shoulder injuries. I had a right side frozen shoulder 3 years before diagnosis and a left side frozen shoulder 2 years after that. Injections and physiotherapy were a waste of time and money for me. I gained valuable knowledge from the physiotherapist but it was time and daily stretches that eventually healed both shoulders. It took me almost a year to regain mobility of my shoulder in both cases. I find myofacial release with tune balls is helpful as a go forward. I too have a low thyroid that I am medicated for. On a side note: my father has a low thyroid, also has PD and had a frozen shoulder pre pd diagnosis
Bolt,For me, I had a frozen shoulder few years into my pd journey. I could not move my right arm behind me at all past the side of my body . Ended up seeing my orthopedic guy and getting a cortisone shot followed by PT which cured my shoulder issues. I still do the occasional PT exercise when I remember.
My original symptom was a right shoulder pain and inability to move my arm without assistance. That was after running my first half marathon at age 67. The orthopedist prescribed PT and that helped but then my right hand started giving me pain. Back to the orthopedist and he ordered an MRI of my cervical spine and diagnosis was stenosis and bone spurs at C4-C6. More PT and temporary relief but new symptom of my right arm going to sleep and difficulty writing. At two years into it I was getting really edgy and anxious so the doctor prescribes Buspirone to calm the anxiety. And more PT. The side effects of Buspirone include tremors and sure enough they showed up and my frozen shoulder was frozen arm and hand. The orthopedist orders a nerve conductivity test of my right arm and diagnosis me with cubital tunnel syndrome and refers me to a surgeon. Meanwhile Covid-19 is rampant and surgeries were postponed. Finally in July of 2020 (2 1/2 years in) I have surgery and all goes well. October comes and I can’t write and the tremors and anxiety are getting worse. December I stop the Buspirone and February I’m a mess. I did a telemedicine visit with my GP and she gave me a referral for a neurological evaluation for movement disorder. Problem is the earliest anyone can see me is April 23 . On April 17 I get a letter in the mail that the neurologist retired on March 18 and they have Rescheduled me with one of the other neurologists in the center. The appointment was July 7th. We called all the neurologists in our area with no luck. My GP called and gave me the name of a neurologist in a nearby city who agreed to squeeze me in on May 11. On June 7, after 3 weeks of carbadopa/levodopa and a full evaluation of my other symptoms I was diagnosed with PD. Almost 3 full years of bouncing around doctors and PTs. Not too happy with the medical community in my town. But I’m on an exercise regimen and pramipexole along with C/L. It all helps but we’re still adjusting the meds. Exercise is so important!!!!!! That’s what helps the most fo me. I’m 70 now and want to be able to do things with my family so I try my best. Good luck with your quest fat diagnosis. Everyone has different issues with PD. Keep us updated.
I had a frozen shoulder that lasted two years before my PD diagnosis. I had steroid injections, physical therapy to no avail. I ended up having surgery which took care of it. I hadn’t been able to raise my arm or put it behind me for so long. Doing my hair was a challenge every day so I was relieved.
Have you had an MRI to check for rotator cuff damage? I had shoulder pain and an inability to lift my left arm. My neurologist initially thought it was PD related, but eventually the pain got really severe and I went to the orthopaedic doc. Turned out I had a torn rotator cuff (due to overuse, not a specific injury) and a bone spur. I had surgery in March of 2019, and once I got through the recovery process, everything was fine and back to normal. BTW, partial rotator cuff tears can sometimes heal on their own.
Thank you so much 1LittleWillow! You know, back about 6 years ago I used to drink a lot and would go out in my back yard and try to throw a football. I've never been able to throw a football. There is some chance I injured my shoulder doing that. Maybe just wishful thinking. It has only been in the last 2 years that it really started bothering me.
My brother has been living with a partial tear of his rotator cuff for about 3 or 4 years now (confirmed with MRI). He just never got around to scheduling the surgery because life has been too hectic, and now he's thinking he's not going to bother because it's just not as painful as it was before. He's regained about 75% of the movement over time.
If you can get an MRI, maybe it would answer some questions for you so you would know better how to proceed.
Not that you asked how my brain works, but I am sharing anyway
I base some medical decisions on the theory of Schrödinger's cat. As long as I don't get a test, then at least 2 things are possible. Once I get a test, then the possibilities get narrowed down to 1 thing, and it might be one thing I don't like. This is why I don't want an MRI.
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