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    • #19718
      Roseanne
      Participant

      Does anyone have pain? And how do you know if the pain is from your parkinson’s or something else? And what do you do for relief? I am  3.5 years now with parkinson’s and I have been having muscle spasms in my right foot. It feels like the muscles in my foot are twisting and pulling.The pain is so bad at times that I can’t walk on that foot. Even when I’m not having a spasm the pain is still there. I’m still working so this has been a big problem for me. I take Rytary ER 48.75-195 mg, rasagiline 1mg daily and amantidine 100 mg 2x a day.

    • #19722
      Lyn Richards
      Participant

      Hi Roseanne,

      I have a few thoughts about your muscle spasms. I was having more muscle cramps and spasms before I started taking magnesium (150mg of magnesium citrate at bedtime). Some people also take calcium supplements. You could also try to increase your walking opportunities if you have a desk job that requires prolonged sitting. However, I am wondering, given your description of twisting and pulling sensations, whether your foot is actually twisting? If so, you might want to ask your neurologist if this could be dystonia, since there are other treatments for that such as anticholinergic drugs (which might not be great if you’re still working since they can have cognitive effects) and Botox injections.

    • #19725
      William R
      Participant

      I too have pain. I have had Parkinson’s for 7 years and the pain I experience in an aching in lower limbs and shoulders. I have found that CBD (20 mg 3 x day) is about as effective as anything else I have but with much fewer side effects. As a retired physician I know full well the dangers of acetominophen, nsaids, and opiate medicines. I feel much better taking the CBD, but it does take about 2 weeks to be effective.

    • #19729
      Daniel Novak
      Participant

      Sounds like dystonia, I think the number is about 30% of PWP also have dystonia. I have my botox appointment this morning. Pain is nonstop

    • #19746
      David Blacker
      Participant

      It does sound dystonia, but there will almost certainly be a musculoskeletal component due to asymmetry of weight bearing ,

      Apparently, James Parkinson mentions pain in his original descriptions, but it doesn’t get a lot of attention by modern doctors, even though up to 80% of PD patients will get some form of pain,

      I too get a lot of pain in my right foot, especially at night when I am “off”, or after exercising , I try to stretch it or do some yin yoga, I’m considering the new PD drug Safibamude, which may help with pain by blocking glutamate pathways

      Best of luck

      David Blacker

      Neurologist with PD

    • #19752
      Jim
      Participant

      I have ongoing pain of varying levels 24/7 in my legs and feet. I experience random severe dystonic episodes that can last anywhere from 15- 90 minutes and include my upper body as well. Medication so far is not helping.

    • #19775
      Barbara Ford
      Participant

      The longer I have Parkinson’s, the more pain I have. My neurologist sent me to a pain doctor and she has done some nerve blocking injections in my leg when the pain gets to a level that the opiates don’t help.

      As bad as the leg pain is, (it is a sharp pain down the side if my left calf), the cramping, feels like flesh is twisting, unbearably intense pain in my feet is the worst pain I experience.  The flesh is not actually moving, and these episodes are only at night.

      The cramping pain comes in short bursts and the episodes are not more than maybe 10 minutes. Then the neuropathy sets in and the burning from that is quite intense.  I take a light dose of Gabapentin, but most nights the pain in my feet keeps me from sleeping.

      Recently, I was given some lidocaine patches to try and these have been helpful. The patch dulls the pain enough that I can fall asleep, or until the opiate goes into affect.

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