I have been in horrific PAIN for several weeks now. Have read up on things, joint regidity and CNS pain. Mine appears to be more of the latter. Unrelentling, burning, all over the body. The type you just want to escape from. Has lated several weeks, cannot get a call back from my neuro. I am in unrelelelentint pain and he does not give a damn!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! what a comfort!

24 Replies

  • Because of it's complex nature as to origin and how the brain interprets pain it is hard to manage. Your doctor may have no idea what to do and is avoidiing telling you so.

    What changed right before the pain changed?

    If acute new medical problems are not found, you might consider biofeedback because it can teach you how to focus away from the pain to get relief.

  • Jill, finally did get the Dr. office, have an appt. next week...I just hope he will do something!

  • So sorry Susie hope you can get some relief and answers soon x

  • About 4 to 6 weeks ago a young man wrote to tell us that he had found a most useful liquid substance to rub on painful areas. I am the one with PD and tend to ignore ads for things that sound like "snake oil". Well, let me tell you, My husband read this answer for help with pain and he ordered a bottle of it, called Zheng Gu Shui and I began using it especially on my feet, whether it is stinging or itching in my feet. pain across my lower back, joint pain, this works. I've used it everywhere (except on my face) wherever the pain occurs. after using this lotion pain is gone almost instantly. It is Chinese external analgesic distributed by Solstice Medicine Co. in LA 888 221-3496 Good luck and I pray it gives you some relief. When you read the ingredients, you'll say it's the same as we can buy otc, but it smells quite different and it really does work..

  • Hello Jenny,

    Thank you for the information, I will follow up. Last month I dropped a lot of money on cactus juice, to this piont, I do not think it has helped, of course I am suppose to give it 60 days. I have been doing some research. They type of PD pain this seems to be associated with is CNS, mainly thalmus signals thrown off. I have also had hypothalmus S/S with body temps into the 93.4 range, the pain only increases with decreased body temp....

    Isn't PD fun! I will check out the info. Thanks again, Susie

  • Hi Susie 01

    I have also been experiencing unrelenting pain over a long time, both from disc problems and periheral neuroepathy. Pain levels from 1-10 often being about 8. In the last week I was recommended to go to an acupuncturist. The relief has been tremendous - not completely vanished, but 2 or 3 instead of 8 makes life much more bearable. Parkie is still playing up, but the easing of pain is a BIG help.

  • Wow, I am glad you have had such good results from acupuncture, I tried it in the past with great hopes, but it did not work for me...I also had massage therapy and PT which did give some relief but I do not have insurance and it is expensive...

  • what a b******d - i hate it for you

  • I, also have got a lot of pain in my right leg, my tremor side. It moves around a lot, but is in my knee today. I find it difficult to get comfortable in bed so went to see my GP yesterday. I have known her for a number of years, but when I asked her if it could be to do with Parkinsons, she said you don't get pain with Parkinsons! I assured her that most people do suffer with pain. She prescribed me with pain killers and an anti inflammatory tablet as well.

    Going to London on Friday for a relative's birthday, which is about 4/5 hour car journey.Doubt that I could sit for more than hour at a time so will have to take things day by day. Also get numbness in my leg and reflexes are not good. What next, I wonder?

  • Hey Court,

    It is amazing that Drs. can think you don't get pain with PD. Ignorance is bliss with them. There was I time with I could say that I had no pain with it. But as you said, PD symptoms are always changing, atleast mine are! The concerns I had six months ago are not longer the concerns I have today...always makes me wonder what is around the corner!

  • This is exactly how I feel. Things change from day to day. I was not too bad when I saw my Dr yesterday, but boy, have I had pain today. I really don't know whether is from my Parkinsons, posture problems or something else. I don't want to take painkillers for too long in case they prove addictive. Just don't know where to go from here. Never a dull day with Parkinsons!!

  • I know. Any pain you can't diagnose is a PAIN! Mine at least come and go. I got a Pat's Pain Blend oils to rub on. Aspercreme. Advil. Xanax. A good night's sleep. An occasional percoset. I feel like a walking oill!

  • I do use compression gloves and braces on my hands and arms, they help some, but will only let myself take motrin.

  • There are so many doctors out there that just don't have a clue what to do with a PD patient. It has taken me years to find one that is a movement disorder specialist. Yes, you do have pain with PD and I was prescribed Requip XL which helps my pain, mostly in my arms and legs and I can now get a decent nights sleep. My advice is to keep looking for a good neuro and stay away from the pain killers that can become addictive. I am going to check out the cream Jenny recommended. Good luck !

  • I finally was able to get in touch with my Dr. office today, set an appt up for next week. When my disability hearing is over, I plan to find a new Neuro. I talked with a friends who's father had PD and really liked their movement disorder specialist. I found him online, not sure how many patients he sees since he is in his late 60's.

    Yes, there are so many drs. who have no idea of what to do with PD managment. I take Azilect, from what I have read, they recommend levadopa, don't know how I feel about that, will have to do some research.

    No, being a nurse, I would not take anything stronger than motrin for pain. I also have a bulging disc in my back, the dr. tried to get me to use pain meds or even a pump with it and I just had to say no and live with the pain. I refuse to become addicted and have seen so many who do.

    Thanks again, Susie

  • Yes I am also concerned about addiction.

  • I have known so many people who did become addicted, it ruined their lives and the lives of the people around them. A friend of my sister finally ended her life when she could not get off of prescription pain meds. The real problem is the drs. who keep prescribing them instead of looking for other solutions.

    I have another friend who was a manager of a store and was held up at gunpoint not just once but twice. The company he works for is not so employee friendly, he was never even given a day off and was only offered counseling by phone...He has severe PTSD, his dr. just took him to max dosages of xanax and he is addicted....very sad.

    As patients, we have to take a stand when all drs. want to do is throw pills at us!

  • hi so sorry 2 hear ur in pain i have a terrible burning sensation in my arms and an itch cant get 2 c my nuero did u ever have this hope ur pain eases

  • My pain is basically on every skin surface but is much worse below the elbows and in my hands. I need to see if I can copy an article I read to here. It was very insightful on the pain associated with PD. The pain can be unrelenting, mine seems to be CNS and is related to the lack of dapamine. I did get an appt. with the neuro next week.

    Hope we can all find some way of easing it, there was I time when I could say I did not have pain, that is no longer true...

  • I did most of my research online live out in rural area anyway i never saw one site talk about the pain. But there sure is still find that strange. Wish u all well my pain is a #3 today :)

  • Susie,

    Good luck! I hope you find the right remedy to eleviate your pain. I find relief from aquatic exercise, walking with a friend or soaking in a warm bath. One of the best pieces of advice I have ever gotten was from an eldrely lady who told me, "Just keep moving and take your meds."

    WIshing you the very best.

  • Thank you Koko,

    I do find with the regular musculoskeletal pain that I do better to "just keep moving". If I sit down it is all the harder to get back up! Wish the CNS pain was that simple, but movement seems to make it worse...hope to find some answers.

  • I'm always in pain. My son sent me some cream he found n Washington at a medical marajuana(sp) shop.I rubbed it on my elbows and knees and legs , it not only eased that pain but my hands quit hurtng too. No, I did not get high from it and din't smell bad from using it. It smells good softens the skin and eases pain. I'm going to but a few when I go visit.

  • Wow, I have ordered a coujople of things people have recommended, don't think I can get that one!

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