Major Pain

does anyone out there suffer with major leg pain.? I'm having such a hard time and my doctor tells me it's not a PD symptom . They burn and ache so badly. Today I'm at a level 9 of pain! Help!!

Other things I suffer from is very weak voice, incontinence, low back ache horrible balance, walking difficulty, I cant stand up for long my legs are so rubbery and jello like I've been dx 18 mo. I'm on Ropinerole 24 mg I x day, Sinamet 25/100 3 x day , Gabapentin 9 mg so far daily

Thanks anyone!


49 Replies

  • Were you having that symptom befote you started taking the PD meds? Are you taking 24 mg of Requip rather than .24 mg.? I just looked up the dosage & 24 Iis the maximum. Maybe the pain is a side effect of the med (s)? Are you seeing a movement disorder specialist? I have pain in my thighs, but it's mostly stiffness. Just some thoughts.

  • Yes 24 mg The maximum dose the maximum dose. Of course I had to work up to that. I was in pain before I staR ted the Ropinerole . My Dr. is a movement disorder specialist, but she's not into anything holistic which I wish she was.

  • Nettiepie, I am so sorry to hear of your pain. I suffer with pain daily. I hurt so badly i am unable to sleep. Lying in bed becomes impossible after a few hours. Back pain, leg pain, neck pain , and across my shoulders where my muscles are as hard as rocks! Mirapex, sinemet , Azilect are my meds. I was given gabapentin for pain also with few results if any. In desperation I am going to try it again . I don't understand why pain is not considered a symptom of PD.

    I hope you will find some help soon, it is debilitating to be in pain every hour of every day! Good luck to you and God Bless!

  • Thank you for your reply how long of you had Parkinson's? I feel like This disease has advanced so quickly for me....some others have said they think I might be overmedicated.. I wonder? Maybe I need a second opinion

  • Try Botox injections. They really help for about 3-4 months.

  • Thanks I will look into Botox

  • Pains is recognized by the movement specialists but they do rule out other causes before hanging the PD diagnosis. I found less pain when I added a small dose Sinnemet to my trials. THE pain improved but the nausea keeps me from experimenting. Seems to always have a side effect with treatment for this disease

  • Hi Nettiepie. Do you have pain in both legs or only one?

    Have you at any time injured your back?

    Many patients I have met and spoken to have had back injuries, from various activities. It does not appear to be Pd related, but probably more age related. As we get older we tend to try to do the things we always have been able to do, like lifting heavy objects in an unhealthy way.

    Kind regards


  • Hi John,

    My burning pain and weakness is in both legs and my feet. Some days it goes up into my thighs, groin and my low MRI showed I have severe arthritis in L3 L4. I'm quite sure that's unrelated to Parkinson's but I can't function very well some days! I've been a seamstress for many yrs, but no injuries tony back.

    My Parkinson's started 18 months ago when I couldn't walk very well and I start wheezing, but it was not asthma. My right hand was paralyzed-I couldn't do my hair in the morning.

    My concerns are that this disease is moving too fast and what can I do to slow it down?

  • I'm so sorry you are in pain. All the symptoms you say I have except the pain. I do get pain in my neck and the left side of my back. Usually the sinemet helps to relieve it. It feels more like a strain, but not severe. I will keep you in my prayers.

  • Thanks Michael I will keep you in my prayers as well

  • Oh I'm so sorry, it wasn't Michael, but Michaela, please forgive me!


  • Hi Nettiepie,

    If I had a pound for every time I've been told that pain is not a symptom of PD I'd be a millionaire (well ....on the way). I experience all-over idiopathic pain most of the time in varying degrees. Idiopathic means that no attritutable cause can be found. Mine moves around from one part of my body to another very much as you describe. I am told that it is not arthritic (mostly) or rheumatic.

    I find that being in a warm dry atmosphere helps (will the NHS pay for monthly trips to Madeira?), as does hydrotherapy & most gentle exercise. 5 Elements acupuncture has been a major breakthrough for me. My therapist happens to be a qualified anaesthetist but any 5E registered practitioner will bring some relief. I also pay for weekly sessions with hypnotherapist which helps me to maintain a degree of control. 10 years after dx my meds are: RequipCR 8mg daily, Sinemet+ 6 daily. I take Tramadol, paracetamol & Amitriptyline as needed for pain.

  • My mum has this pain. I've never seen anyone else describe it before. She's quite advanced with her parkinson's so we assumed it was related somehow, but her consultant says she hasn't heard of it before. She thinks it's probably to do with lower back degeneration. But it's really awful, she screams and cries. The only thing that helps somewhat is very strong pain killers containing oxycodon.

    I hope you manage to find some relief somehow.

  • Thankyou earthdweller,

    I too hope your Mom feels better.


  • Just saw your post and wanted to tell you that my father had Parkinson's Disease for 30 years and yes he suffered terribly from leg pain. And also his doctor's never believed it was from PD. But clearly it was a symptom of PD. He had nothing wrong with his spine, has no arthritis and none to the med helped.

    He was a very strong man and never would complain to me about the pain. But when I asked him he would say "Yes it is terrible pain in my legs especially at night." So I believe you are right. In my experience if doctors do not have a pill or an easy answer they tend to blame the patient. That I know to be true.

    So keep insisting on what you know to be your experience. And try anything and do your own research.

    I know that early in his disease he found some relief in massage and chiropractic manipulation but that seemed to stop helping. Also keep moving.


  • Hello Jill,,


    I will go try actupuncture and massage. Perhaps these modalities will help me. Soory about your Dad.


  • I don't get why the parkinson's doctors don't seem to recognise this or acknowledge it. It's documented well enough for us to know about it. Seems very strange to me.

  • I know I seem to stump all the doctors. I have such weakness in my legs , can barely stand up and walking is so hard. Then there's the pain! I've had MRIs and nerve conduction studies and they're all normal yet they are in terrible pain

  • Hi there, it is very strange to me as well!

  • I will keep going Jill thanks so much for your reply. Sorry about your Dad

  • Sounds like central pain syndrome.... a thalamic phenomena. Check Wikipedia.

  • I will look now...



  • Hi Etterus,

    I checked Wikipedia and that would mean a stroke.-'my MRI shows a 'unremarkable' brain. Meaning nothing of serious nature to report. I have not had a stroke. But thanks so much


  • Hi Nettiepie, Central Pain Syndrome isn't just associated with a stroke, that's just one of the possible causes. On this Wikipedia page it lists Parkinson's amongst the many things that might cause this kind of pain.

  • I think stop the gabapentin it made may legs worse, sounds like that could be part of the problem. Try Lavendar oil on your legs, this worked on my arm cramps like a charm...I was so surprised it worked! Better days ahead p.s Accupture worked good for my back pain.

  • Gabapentin worsened my pain. It has eased up with a very low dose of zonisamide, which in turn has enabled me to begin practicing tai chi, which is also helpful. Ten months ago, my upper right quadrant was just contorted with pain and tension. I must say that acupuncture helped HUGELY with that. Before that only oxycodone helped, and I was taking it regularly and sitting against ice packs. No one should have to live with the kind of pain you are describing. Has your doc referred you to physical therapy? And if she did, would you be able to get yourself there? Sometimes I think we can't get a handle on our pain because we can't get a break from certain tasks, like driving, carrying things, etc. that aggravate it.

  • Thankyou Becky. I'm sorry for your pain too! I will talk to my doc too about another pain med. Gabapentin just isn't doing it for me. I did go to physical therapy but I couldn't see any improvement after abt 10 sessions

  • Q& A with doctor researching pain in PD

    “Why is it that when we survey patients with Parkinson’s disease they

    frequently report pain, yet most neurologists and practitioners fail to address it or

    alternatively sweep it under the carpet? Shockingly, the more that comes to light

    about pain in Parkinson’s disease, the more exposed and embarrassed we as a

    medical profession should be. Blair Ford, a movement disorders neurologist at

    Columbia University in New York city, nailed it precisely by titling his recent

    review of the subject, “Pain in Parkinson’s Disease: The Hidden Epidemic

  • I had severe leg pain in my left leg while I was taking 3 Sinemet a day. I reduced it to 1/4 pill four times a day and eat a banana I am also doing Big and Loud therapy. I do not have the pain now.

  • you could try magnesium

  • Thankyou I do take some daily.. Do you mean like a mega dose?

  • also try a bath with epsom salts

  • I wonder if magnesium oil would help, perhaps rubbed into the bit that hurts? I'm nervous to try this with my mum as it can cause irritation, and she has very thin skin now, and so many different complaints. but I've heard people say it's good for muscles cramps. (If that's what these pains are - not sure exactly).

  • Hello earthdweller, I havn't tried mag. Oil...I have tried many different Doterra essential oils, but not magnesium . I will give it a try. I just think that my doctors could find something... So frustrating!


  • I have been struggling with leg pain but I think it has to do with the extra electricity my DBS provides. Have you had DBS (deep brain stimulaton)? I only have it on my PD (L) side and it goes from severe to mild depending on how high I have the stimulator set. The docs have not seen this before so no one knows what to do so far. The lower the stimulator the worse the PD symptoms and better the pain and visa versa. Alot of trouble sleeping, I'm getting really worn out. I hope you find some answers

  • Thanks for your reply jeebers . I have not had DBS so it's not that. I m not sure if I would be a candidate for it...

    Still searching thanks

  • Hi Nettiepie your post certainly got a lot of comments on PD and pain I also have been suffering terrible pain in both legs sort of came out of the blue about six mths ago asked my neurologist he said no nothing to do with PD. After reading some of you r replies I can see that it could be related but I never considered that my meds could be the cause of my pain DX11 years ago meds are Comtan Madapar Amantadine and Azilect Iwould also take more magnesium and highly recommend a bath with Epsom salts( that's just magnesium any way) goes straight into your system through your skin Hope you get some relief Hope you find some answers that help in the mean time be Posiitive our cure can't be that far away they are making huge progress in finding answers just wish they could test more people rather then animals regards Sunnysky

  • Hi sunny sky,

    Thanks for your comments. I have tried baths with Epsom salts, and they're great, but I can't get the water very warm at all, because that really gets my legs extremely hot! Last time I tried that I had to get back into a cold bath to get some relief, and cool down!. I love a hot bath-but I cannot tolerate them. I do take magnesium tablets everyday.

    I wish the cure would hurry up, I know great things are going to happen when it does! . Thanks again,


  • Have other diseases like cellulitis been eliminated?

    Is the degree of your pain linked to your position in your drug cycle? As you go from dose to dose the amount of dopamine in the brain varies, leading to a variation of symptoms, some occurring when you're "off" and some when you're "on". I would measure my PD by doing an on-line tap test [1] every 15 minutes starting a hour before your first levodopa of the day until a hour after your second dose. At the same time measure your pain. Graph the results and see if any conclusions can be drawn.




  • HI john,

    Thanks for your concern. I don't have cellulitis. I checked the symptoms and they do not match mine. My symptoms are: my legs are on FIRE! They burn and ache all the time! Just so everyone can understand my problem, let me share with you this... I soaked my burning legs in a bucket of very cold water, Yet, I felt no relief from the burning pain. My legs were in cold water, yet to me they were still burning up!

    The pain can however move from my legs ( where it initially started) down to my feet or up to my hips, groin, stomach, or lower back. Mostly stays in my lower legs.

    Also, it really affects my standing and walking! As the day progresses, I hurt more and more! I have to get off my legs often, and sit down, but it's best when I can lie down. That used to take the pain away very quickly, but now the pain will linger a long time, and it drives me nuts! It really hurts-my pain level is probably at a 8. I can't get anything done. I have difficulty excercising , and I need to! When I've complained of the weakness and difficulty I have standing for very long at all to my neurologist, she doesn't understand.( my legs feel like they are made of wet noodles, and they could give out at any time) She says that my legs are very strong, and that I am stronger than she is! That I must have a perceived pain! Well, it's not perceived to me! It's very real. I also have lost so much of my sense of balance. I cannot walk a strait line.

    I will look into tis tap test... Thanks John

    Kind regards


  • Hi Nettiepie, I too get pain in my PD side leg. I also get a lot of pain in my PD arm. I sometimes take Ibuprofin but I don't want to take too much. Mine just comes & goes.

    I did get your post on Patientslikeme. Sorry I didn't answer yet. I will do that right now. Thanks for your info. LLWWD

  • Nettiepie, I posted my experience on Patientslikeme & I know you follow that. Please see my reply on that site. Thanks.

  • I have to experiment with cannabis. I have a high CBD low THC tincture they gave me for pain ( designed for cancer patient pain). That helps the restless leg and pain in foot. Arms come and go now.

  • Hi nettirpie,

    I,wonder if you love in a state where medical,marihuana is,legal.,,,my daughter lives in Wa state & says it really helps,her with pain. I,live in NC & it's not legal,here or else I would,try it. I can no longer travel so no way to,see if it works.

  • Well we could have had it legal here, but it was just stuck down in the Senate. So, until

    The next sessions meets again for a vote, I will have to be patient. But thankyou! I'm glad it works for you!

  • ha s your dxs changed at all

    youR symptoms are v like mine and i have PSP

    can you look up or sown iwht out difficulty? that is 1 of thje ways in which PSP can be different from parkinsons and has the sinamet helped you at all = i tried it & later amantadine to no benefit at all

    ,my b a lance is a loft owrso enow 4+ yrs after dxs and ia ma in a wheelchair for my own and others saety inside and out

    mntoa glowign pictur e i kwnoo but it could eb a lot worse

    LOl jIll


  • Hi Jillian

    Thanks for your reply. So far it remains the same. I can't get in to see my neurologist until end of June so I am a bit frustrated. She's excellent and impossible to get to . Another doctor I recently saw for my paralyzed vocal chords seems to think I have MSA. That scares the crud right out of me. I have so many of those symptoms. I do not however get dizzy upon standing. I hope to heavens that I don't have that fatal disease. I am not familiar with PSP. I will check it out. I can look up and down without any problem. Hope you are well !

  • One more thing.. My medications ropinerole and sinamet just don't seem to work for me.

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