Pain and Weakest on side affected by PD - Cure Parkinson's

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Pain and Weakest on side affected by PD

Darcy3 profile image
49 Replies

Is there anyone who suffers from pain in their arm from PD? It feels like a muscle kink and tightness. My neurologist did not think it was associated with PD, however tests all came up negative. Just wondering.

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Darcy3 profile image
Darcy3
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49 Replies
park_bear profile image
park_bear

Sure - pain from muscle tightness - dystonia - on the affected side - seems like an obvious Parkinson's symptom.

Darcy3 profile image
Darcy3 in reply topark_bear

Is there anything you take to help ease the pain? I am on Eliquis for Afib so my choices are limited. Thank you replying to my query. Much appreciated

HekateMoon profile image
HekateMoon in reply toDarcy3

Normally levodopa would amelliorate it but for me it was gentle exercise that i found online. Mainly feldenkrais

Darcy3 profile image
Darcy3 in reply topark_bear

Thank you for your reply. Knowing why is better than not knowing.

MtTam profile image
MtTam

Of course you can have pain or discomfort in your arm. I have had it for years in my right forearm near the elbow end of my muscle on top. Sorry I don’t know my anatomy. Also pain in my right inner thigh. It improved greatly after DBS, but I still have. Does your neurologist specialize in movement disorders?

Darcy3 profile image
Darcy3 in reply toMtTam

That is exactly where my pain is, R forearm. What if anything do you do for it? My doctor is a neurologist not a movement disorder specialist. The closest movement disorder is in Houston, 65 miles of 6 lane traffic. I just can’t drive it.

MtTam profile image
MtTam in reply toDarcy3

Perhaps a Telemedicine visit. Understand the driving limitation. I mentioned the gabapentin above, and noticed someone else suggested exercise. I ride a stationary bike at a high heart rate regularly and this helps my overall movement a lot.

Darcy3 profile image
Darcy3 in reply toMtTam

Good Idea about Television. Thank you very much. I will definitely check into it. I do treadmill 40 minutes at 3 miles per hour. I don’t have a bike but certainly get one if it would help.

Darcy3 profile image
Darcy3 in reply toMtTam

Thank you for replying to my question. Much appreciated.

Darcy3 profile image
Darcy3 in reply toMtTam

Thank you so much for sharing your symptoms. Now I understand why I hurt. It is easier to live with an issue when you know why.

Kwinholt profile image
Kwinholt

Hi Darcy, my total left side has muscle locking, cramps ect, Dystonia. My neck and face included. Do you take any carbadopa/levodopa? My PD started with the dystonia. . It is very painful. My dr had prescribed muscle relaxers too but I don’t do well with those or pain pills. Make sure to try and exercise and stretch. The cd/ld helps some too. Take care. Karen

Darcy3 profile image
Darcy3 in reply toKwinholt

Thank you so much for taking the time to reply to my query. Now that I think about it, the pain in my FOREMAN, ELBOW AND SHOULDER, started before I was DX with PD. It is more painful as time goes on. I was given muscle relaxers by the orthopedic doctor who looked and couldn’t find any Skelton issues. I will try taking one tonight before going to bed. Thank you again. This site has been so very helpful in so many ways. Also very supportive. I don’t feel as though I am fighting this alone anymore. Thank you all.

MtTam profile image
MtTam in reply toDarcy3

I take gabapentin at night to ease the pain that i have. It seems to work well for nerve pain.

Darcy3 profile image
Darcy3 in reply toMtTam

I, too, am on Gabapentin for neuropathy. I don’t find that it is helping the R arm pain….

MtTam profile image
MtTam in reply toDarcy3

Could be the dose. I take up to 1200 mg ( 4 300mg capsules) at Bedtime and this seems to work.

Darcy3 profile image
Darcy3 in reply toMtTam

I will talk to my GP about increasing it. Thank you.

ddmagee1 profile image
ddmagee1 in reply toDarcy3

Yes, I have pain and cramps in my affected side, arm. My hand cramps up, and ratcheting with my elbow, and my shoulder has pain most of the time. I’ve had a dislocated shoulder several times, fallen on that side, and have curled toes in my affected foot, along with disabling cramps. Much of this is definitely due to my PD diagnosis! I would agree with others, that it might help you, to find a way to see a movement disorders specialist! That, at least, would give you peace of mind!

Darcy3 profile image
Darcy3 in reply toddmagee1

Thank you for sharing your PD issues. It is a most frightening illness as one never knows what to expect from day to day. My prayers for you is that your meds ease your pain.

Smittybear7 profile image
Smittybear7 in reply toDarcy3

I. Have right side weakness. I can't sit for more than 10min without cramping of my quadriceps so I spend most of my day standing or laying down. I'm being checked for hip and back issues. No one has targeted the issues to pd although it is a possibility. It's very painful. My shoulder and hand are weak. The leg issues make it difficult to get in and out of the car,,bed and off the toilet. I hope you get some relief and I hope our issues aren't pd related and can get resolved. I'm not on any meds yet for pd but I may have to start.

Enidah profile image
Enidah

I'm sorry you have to put up with such an ill-informed neurologist. Pain with Parkinson's is one of the most common symptoms affecting up to 80% of the people with PD.C/L has been the only thing that has helped with my pain and it has been very effective.

Since you don't have a movement disorder specialist or a neurologist that is well informed I would encourage you to read everything you can (from reliable sources!} about PD. It's very important for us to be our own doctors.

Darcy3 profile image
Darcy3 in reply toEnidah

I totally with your statement. We have to be our own advocate. I read everything and mull it over and digest it before trying it. I have learned so much since reading the statements on this website. Thank you all.

park_bear profile image
park_bear in reply toDarcy3

I second Enidah's recommendation for C/L. Are you taking any levodopa medications?

Darcy3 profile image
Darcy3 in reply topark_bear

I am on Rytary 61.25 mg carbidopa / 245 mg levodopa 3 times a day and Nourianz 20 mg once a day.

park_bear profile image
park_bear in reply toDarcy3

Levodopa medication was what helped me. I will defer to others as to what additional measures are appropriate.

Darcy3 profile image
Darcy3 in reply toEnidah

I have an appointment with a movement disorder doctor in Houston September 1st…….thank you for your reply. It prompted me to call and make an appointment. I have a friend who will drive me to Houston.

Enidah profile image
Enidah in reply toDarcy3

Good news! Best of luck to you!

Astra7 profile image
Astra7

Try magnesium as well.

Darcy3 profile image
Darcy3 in reply toAstra7

Thank you. Will do.

LAJ12345 profile image
LAJ12345

My husband has this and finally started on c/l as the nurse said it would help but actually he thinks it made it worse.

MarciAC4 profile image
MarciAC4

I use a spray or roll on called stop pain. I get it at cvs. It helps.

gregorio profile image
gregorio

I have had a pain in my right shoulder and arm for years with PD until recently when I started red light therapy .. I have a post with a lot of comments about it on here. Could not get a nights sleep without the paiin waking me.. pain is almost a thing of the past now

Darcy3 profile image
Darcy3 in reply togregorio

Great. I am glad for you. I will look up Red light therapy..never heard of it. Thank you for responding.

Smittybear7 profile image
Smittybear7 in reply togregorio

How do you get red light therapy? Does it have to be prescribed? Is it available in Pittsburgh. Any recommendations for dr in Pittsburgh PA. Not happy with my neurologist. What other drs should I have? Thanks

gregorio profile image
gregorio in reply toSmittybear7

There is a huge amount of informtion on here about red light therapy.

RBan profile image
RBan

Besides levodopa carbidopa magnesium hydroxide is very helpful for muscle cramping. As a spray and oral.

Darcy3 profile image
Darcy3 in reply toRBan

Thank you I will try it.

Amytink profile image
Amytink

Hi,

My main symptom is a painful left neck snd shoulder. That’s been there for at least 4 years before my diagnosis and has been getting slowly but solidly worse since Pd diagnosis 5 years ago.

Lately however I’ve been getting muscle pains in my right arm. Just as if you’ve been working hard the day before and get stiff muscles the day after.

I’m sure it is down to PD.

Best wishes

Darcy3 profile image
Darcy3 in reply toAmytink

Are you taking any Thing for the pain?

yes, I have shoulder nerve pain (or did) on my weakest tremor (left) side. Ambroxol has entirely resolved that for me, no more nerve pain (it's an extremely potent sodium channel (pain) blocker, 12x more potent than lidocaine, and not habit forming), not to mention its greater PD benefits for me with regard to maintaining my mental clarity and slowing progression. Just search on Ambroxol here for a lot more info on those latter benefits.

Pain science:

"The compound is an approximately 12-fold stronger inhibitor of Nav1.8 than lidocaine and 40-fold stronger if neuronal sodium channels in general are considered."

pdfs.semanticscholar.org/90...

FawnLily profile image
FawnLily

I used to have a lot of pain in my right arm. I take 400mg gabapentin at night, get medical massage every 2 weeks, use one of those pulsating massage guns, and do physical therapy. I was dx with PD in February and been taking c/l since then. I also take B1 thiamine hcl and mannitol

FawnLily profile image
FawnLily in reply toFawnLily

I also take PEA which is supposed to help with nerve pain. Over time my pain has resolved.

Darcy3 profile image
Darcy3 in reply toFawnLily

What is PEA please?

FawnLily profile image
FawnLily in reply toDarcy3

PEA is palmitoylethanolamide. I am currently taking the Life Extension Comfort Max version of it.

For B1, I started off low dose and increased slowly every week. I just increased to 900mg twice a day. My symptoms are mild right now so not too sure what I am looking for. I still slight walking gait issues with my right leg and slightly decreased dexterity in my right hand. I started c/l, mannitol and B1 all at the same time plus a bunch of other supplements plus diet changes so hard to know which things work best. I feel a thousand times better than I did in February. I have more energy, more strength and better balance.

Darcy3 profile image
Darcy3 in reply toFawnLily

How much B1 do you take? I take Mannitol 1 Tbsp. Each day…..

1LittleWillow profile image
1LittleWillow

Yes, I have pain in my affected (left) hand and forearm and occasionally in my shoulder. It is definitely PD-related, but I don't have a solution. It's a bit better when I exercise it.

Darcy3 profile image
Darcy3 in reply to1LittleWillow

Yes exercise definitely helps me as well. Good luck.

koshca profile image
koshca

Yes, I have it too.

Darcy3 profile image
Darcy3 in reply tokoshca

Do you take anything? I am going to try muscle relaxers.

HekateMoon profile image
HekateMoon

It is a very common symptom.one of my first. A frozen shoulder. It responded to very gentle exercise and levodopa. Its dystonia probably

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