Pain with PD : Why is there so much pain... - Cure Parkinson's

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Pain with PD

Ca1208 profile image

Why is there so much pain associated with Parkinson’s. It’s one of my biggest complaints and I manage it the best I can with a variety of things but some days it’s bad. I’ve had two doctors tell me that there is no pain with Pd but I know that isn’t true! Why is it there to begin with? Any other PWPs have this symptom? Any advice? Thanks all! Blessings

39 Replies

Out of interest, what is your Vit D3 blood level maintained at? And do you take Magnesium?

It is reported that 40 to 80% of people with PD have pain. It was my first symptom I could no longer ignore. Spent about 2 years trying to track it down. X-rays physical therapy different doctors. When a doctor says there is no pain associated with PD I assume this is a doctor who is uneducated in the area of Parkinson's and is not going to be of much use to me because I don't want to have to educate the doctor and would they listen? Probably not.I had dystonia in my toes that was amazingly painful. I had it in my upper right back under the shoulder blade, down my thigh and into my lower leg. They thought it was my sacroiliac. One orthopedic surgeon told me I'd had a broken leg previously. No, I haven't.

It's a shame that at the very time when we are most vulnerable, most weakened we have to be strong advocates for ourselves. But who else knows how we feel?

I googled one time, why is there pain with PD? I can't remember what it said but it was something about dopamine and muscles. You could try that, see if you get any info that helps.

Good luck!

Marimar70 profile image
Marimar70 in reply to Enidah

Could you explain what are your symptoms of dystonia in your toes? I think my mom might have the same issue.

Enidah profile image
Enidah in reply to Marimar70

After working all day and being on my feet especially my toes would feel like they were curling under because they were and would hurt so much that it was hard to use the gas and brake pedal in my vehicle. I went to two different podiatrist trying to solve the problem and finally the second one noticed that when she was giving me a shot, to see if it would help, in my toe area that my foot was shaking and she said under her breath Parkinson's. She was the most helpful of the many doctors I'd been seeing for 2 years at that point. I hope that helps.

Marimar70 profile image
Marimar70 in reply to Enidah

Thanks for your reply. Could you tell me is the pain so bad that it messes up your day?Also is there something you can take for it?

My mother's mood is affected by the pain in her toes. plus she doesn't want to exercise because of it and we need to get her exercise so she can one gain muscle and strength along with increased dopamine and getting outside to get vitamin D.

There is so much I can unpack about the fact that my mom needs exercise but she says that her toes hurt and she's not in the mood.

Shes already dealing with the dementia. And I'm beginning to wonder if she has MSA.

The pain in her toes is setting her back right now. Don't know what to do , I am so frustrated and sad the same time.

Enidah profile image
Enidah in reply to Marimar70

I am very sorry to hear that. That's a tough burden for both of you.I was fortunate because as soon as I got diagnosed and put on carbidopa levodopa the pain in my toes was not a problem unless my meds weren't working properly. You might want to review her meds with her doctor and see if they can come up with something that will help. I can understand her not wanting to exercise. It really is quite painful. Some people have been able to get Botox shots that have helped. That might be worth looking into.

Marimar70 profile image
Marimar70 in reply to Enidah

Thank You very much for your reply

I had a lot of pain in my thighs & hips about 5 yrs ago for at least 6 months that wouldn't go away and a friend recommended Emergen C (Vitamin C). It has a lot of C, magnesium, B vitamins & electrolytes). I drank it every day for about 3 weeks and my pain went away. One day I got up out of my recliner and started marching around & my husband asked what I was doing & I said, no pain! I still drink it nearly everyday. If I miss a couple of days I can feel it coming back.

Keep fighting! 🥊

jeeves19 profile image
jeeves19 in reply to laglag

Debbie. Why is Emergen C different to a multi vitamin?

laglag profile image
laglag in reply to jeeves19

I'm not exactly sure, but my thoughts are the combination of the specific vitamins, along with the magnesium & the electrolytes are a good combination of what your body needs to help pain & stiffness. If you get the immune type then there's also vitamin D and zinc so d it gives you so it gives protection from colds also. Knock on wood, I haven't had a cold for a long time.

jeeves19 profile image
jeeves19 in reply to laglag

Thanks 🙏

cclemonade profile image
cclemonade in reply to laglag

Just added it to the shopping list. Thank you!

GioCas profile image
GioCas in reply to laglag

I have been using them for years too, they are good and strangely they work very well. Maybe it's the right combination of the elements as Laglag says

Marimar70 profile image
Marimar70 in reply to laglag

I think it's because of the vitamin B and magnesium

I’ve had excruciating pain intermittently in my left leg. Your two so called doctors are full of 💩

Perhaps the following link may offer some relief :

Good luck!


I have found that a lot of the pain comes from the tension that the disease itself is building up in the muscles. From the small extra tension you nearly can’t feel over the “invisible handbag “ to the very significant cramps. Like an athlete you will get lactic acid in the muscles with pain as result. How do the athletes do to get rid of the acid? Easygoing movements, stretching and rest.

Then we get some extra tension from the nervous system. Worrying about what will come, how to manage and the special PD way of wanting to do our best even when we are so tired, so tired.

My advice is to do like the athletes, try to learn some relaxation techniques and be kind to yourself.

I'm new here. That's the second time I've heard the term invisible handbag. Can somebody describe what that means? I can't picture it. And Googling just produced some handbags I could buy!

The invisible handbag means that you arm without any purpose bend i.e. while you are talking to someone or brushing your teeth. It looks like you’re carrying a handbag. Have you experienced this?

So bending to look like you're carrying a handbag...

Nope, I haven't seen myself do something like that. I've hooked the end of my thumb like I'm trying to stop the tremor.

Enidah profile image
Enidah in reply to hopptimisten

Oh, thank you for that! I got a good laugh out of that invisible handbag. I didn't realize that's what I've been carrying around all these years. My right arm does that and then it will go in the opposite direction and hit things so it has a mind of its own and I just try not to hit anybody or break anything. Ha, the adventure continues...

715McGee profile image
715McGee in reply to Enidah

Thank you Enidah, your wonderful sense of humour brings lightness and happiness to my soul !....

Hupd profile image
Hupd in reply to 715McGee

Interesting. It was my first symptom before I was diagnosed about 6 years ago. I would be brushing my teeth with my right hand and my left arm would just turn for no reason. I thought it was very strange and was wondering for months what was going on and sadly found out that it was Parkinson's.

Fantastic analogy!

The quality of your sleep is an important factor. I had terrible back ache for years before I was diagnosed. Eventually I persuaded my gp to put me on amitryptaline and I slept brilliantly. My pain reduced significantly 😊

Oh and lack of dopamine means you’ll feel more pain than normal people. It sort of cushions pain sensations and naturally when it’s gone.......bummer 😕

AmyLindy profile image
AmyLindy in reply to jeeves19

Truth! Even athletic types have chronic soreness (hurt?) routinely and May feel they’re overtraining (even on easy days) - well, we’d be probably be hurting either way given the dopamine depletion explanation. This makes sense, Jeeves. Naturally, we need to train wisely - but you get my drift?

If you are somewhere where you can access THC (and CBD) then that may be a solution too, some of the prior suggestions are also right on the money and worth trying.

Perhaps your pain could be due to muscle stiffness as a result of the locking down that seems to come with PD? When my husband gets a stiff neck from sleeping so rigid he applies a pain-relieving balm which seems to help. And topical cannabis oil.

I am going on 9 years and still have pain but have learned strategies in how to manage it but when I was first diagnosed it was excruciating so I managed it with a CBD/THC tincture with a 4:1 or 2:1 ratio. I used it a couple times a day. And now I use it only on occasion when the Dystonia gets bad. Karen

If in Uk Emergen C is always on offer in Boots the chemist 3 for price of 2 so works out at £9 for 3 boxes

OMG watch this! It's a University of FL movement disorder physician addressing this exact topic.

Wonky-Bride profile image
Wonky-Bride in reply to amykp

This was really impressive - thank you so much for posting the link amykp. If I lived within reach I would be hot footing it to Dr Christopher Hess!

amykp profile image
amykp in reply to Wonky-Bride

i know right? Funny, 'cause I had JUST seen it.

Hupd profile image
Hupd in reply to amykp

This was so good that I cried. Thank you for sharing.

well i have had parkinsons for about say about 7 years and i never had pain problems but what i did have was pain from back problems the pain was a 10 out of ten i was bent over like an old man of 99 having said that im 74 i had to crawl out of bed i could not stand up straight it did not mater what pain killers i took it took a long time for me to have an opp that made a big differents i found out the best thing i could do was to get off my ass and exercise that has made a big differents to my walking about 7 to 8 kl most days now the parkinsons dont really bother me at all.regards john.

Do watch the video that amykp posted further down - enlightening.

I have posted on this before. Google "Serrapeptase The second gift from the silkworm"You have here a natural not habit forming anti inflammatory which is reasonably inexpensive and in my case has removed the need for ibuprofene.. One 2500iu (I know it sounds a lot) in the morning on an empty stomach and at night again on an empty stomach and gradually you will notice the pain has diminished. I have naproxol from the GP in case I need something on top - usually if I have a very busy day and don't want to be languishing in pain. Robert Redfern - the Serrapeptase guy (that is what he calls himself - has his own downloadable ebooks which are free..... Very informative on how to deal with the majority of everyday illnesses which we all have to cope with the best we can.

I have nerve pain in my left shoulder from PD, and the Ambroxol I use to slow its progression manages that pain very well (it has sodium channel blocker properties, channels which transmit pain, also appears to be helpful for those with fibro), in addition to what else it does for me, like clear my PD brain fog, etc. A lot more on this board about it if you search on it.

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