Saturday, June 6, 2009

Pain and Parkinson's Disease

PD Is No Laughing Matter but Smiles and Laughter Can Help Ease the Pain
My husband has PD and I can tell you that his body aches nearly every day. As a matter of fact it was an odd sensation/pain running up his thumb that took him to the doctor for a diagnosis.

When you think about the variety of PD symptoms it is not surprising that there would be pain associated with increasing muscle stiffness. Although not everyone experiences all of the wide assortment of symptoms, as the disease progresses, probably every PWP will experience stiffness. And with the stiffness, the dystonias - the unwilled muscle contraction - comes twisting and pain, cramping and pain. But there's more.

Of interest is that even though Parkinson's disease usually begins unilaterally, pain can be bilateral. Also of interest is that men with Parkinson's have a higher perception of pain - lower pain threshold. Not by much, however. Steve's massage therapist says that the tension in the chest muscles on his bad side causes a pull and therefore pain on the good side.

The body posture of the Parkinson's shuffle can cause pain in the neck, shoulders, back, hips as the body maligns itself. Headaches are another result of this kind of pain.

PD pain can come from non-motor areas as well. There is neuropathic pain which can cause tingling, burning, numbness, sharp pain. The Parkinson's Disease Foundation breaks the causes of PD pain into five areas: Musculoskeletal, Non-Motor, Dystonia, Akathisia "discomfort due to extreme restlessness" and "a rare pain syndrome known as "primary" or "central" pain, arising from the brain." Depression can also cause and/or heighten sensitivity to pain.

Pain is not a punishment for having a disease. It is a symptom and/or a side effect and it should be addressed by you and your doctor. In some cases pain could be a side effect of medication or medication "off" times but by adjusting the dosage the pain can be lessened.

Lowering stress levels can also reduce pain. Adjusting the body through exercise and massage therapy can make a real difference. To counteract the pain of rigidity, my husband goes to exercise therapy and gets a weekly massage specifically addressing the target points of his stiffness: his bad side shoulder, neck and left leg in the course of the full massage. In between we have small hand held massagers that really do help his neck and shoulder even when only used for a few minutes at a time. At night he uses a heated mattress pad. Electric blankets don't work as well here because dogs have an affinity for chewing them...don't ask.

He does his breathing and voice exercises but not as often as he should. He does those not only to be heard and understood but to avoid the panic of choking and the fear of dying that way. So he is relieving a stress producer as well.

I can't stress the importance of exercise to stretch the muscles, help the body resist the stiffness, punch up the endorphins, resist the pain. Nor can I overstress the need to warm up slowly...not to hyper-extend...because you've already got enough pain. About exercise: ease into it and then persist. You may see some results and then plateau - that doesn't mean it isn't working. Just stay at it. But mean it. Don't just go for the motions. Don't lie to yourself. Don't be an exercise potato. You actually have to work at it. Otherwise you might as well just watch a a cooking show instead of an exercise video.

There are other courses of treatment including Forced Exercise which if done properly can abate symptoms for a couple of weeks: Aqua therapy (swim therapy); Dance therapy - amazing to see PWPs leave their walkers behind to dance - Breathing and Voice therapy, and one of the best, Yoga. Yoga for movement, posture, balance, mind, flexing the right muscles to for relief of constipation, breathing, anxiety-tension relief, depression all of which aid sleeping.

Who would have suspected that the PD associated sleep disorders might actually be a contributory factor to increased pain. A cancer pain study conducted in Tennessee recently demonstrated that lack of sleep/sleep disorders may make pain worse in cancer rather than the other way around which was expected.

Successful Deep Brain Surgery can result in the reduction of both meds and symptoms. This reduction can mean a reduction of pain or the absence of pain. Permanent acupuncture can also result in a reduction of symptoms and consequently... There are other therapies in the pipeline which may seriously impact symptoms with the same pain reduction ensuing.

A few words about TENs machines (transcutaneous electrical nerve stimulation) I can't find anyone who has had success, including Steve, using one. If you have used one, we'd all like to read about your experience in the comments section.

We know that cannabinoids and cannabis components do assist with certain kinds of symptom relief as an anti-spasmodic and muscle relaxant. Parkinson's Disease is on the medical marijuana list in the states which have that understanding. In a 2004 study which involved THC, a cannabis component, demonstrated the possibility that it will help with PD pain as well as ALS spasms. At present Riluzole (the only FDA approved med for ALS) extends life from 2 - 3 months. In mouse studies, THC prolonged life for a human equivalent of 3 years or more. There are several cannabinoid receptors in the human body waiting to help with pain and stress reduction.

Laughter is a great stress reliever. If you've ever laughed with your entire body and soul, you know what I mean. You feel euphoric afterwards. Because that laugh really got your endorphins going. With those natural pain killers aroused everything else disappeared into the background for a few minutes. The smiles can come from whatever, wherever. We need them. For big smiles I go outside to watch the dogs play together. Sometime Rita picks up one of her stuffed toys just to get Harry to chase her or play tug of war...which accounts for the loose heads, limbs and stuffing around the yard. The day she "found" the dead squirrel, I quickly called a halt to that tug of war...but we were laughing anyway.

So when you hear people say that you need a sense of humor to have Parkinson's, they're not kidding around...or maybe they are.

references and additional reading:


  1. Thank you for sharing your story. My husband has similar symptoms with his PD.

  2. This comment has been removed by a blog administrator.

  3. Chest pain is considered a chief symptom of heart related problems.
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    thoracic aortic dissection, oesophageal rupture, tension pneumothorax and cardiac tamponade.

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  4. Although it is rare that we publish comments which solicit for another website, we saw some very helpful information about chest pain at this Indian website.

    Not all symptoms relate to Parkinson's disease. It is important to be aware of other medical conditions which could be developing in the body. What do those symptoms indicate?

    Just hit your back button to return to this site.

  5. alprazolam tablets 2 mg three times a day control my tremors under normal circumstances

    restless leg syndrom is the worse it can be unbearable requip xl does provide relief

    I also take stalevo which shows no effect but Iundestand it helps prevent progression

    all of these with the exception of the alprazolam are high price drugs and thank God are provided to me by my neurologist.

  6. Anonymous,
    You are apparently not levodopa responsive otherwise the Stalevo (levodopa, carbidopa and entacapone (a COMT inhibitor added when L-dopa and carbidopa aren't enough)but if you have RLS and not PD, that makes sense...unless the dose timing is problematic.
    When was your diagnosis? Which symptom appeared first? What kind of tremor do you have?

  7. It's 4a.m. and I was called from the nursing home about my mother's pain she is experiencing. I asked if she had a Toradol order, which was one med I remembered helped her pain when she was in the hospital after she had fallen and torn a major muscle in her hip. There was not a narcotic that helped but made her more comatose and unable to really function. A doctor from Palliative care came to see her and gave her Methadone, twice a day and her pain responded to that treatment.I know she still takes that twice a day. oddly enough as I read your helpful blog, I could see my mom improve and have better days with exercise. However, now we were told that medicare will not pay for her PT because she was not showing improvement! She was at a plateau. I must say this is one of the most horrible diseases to see a fun hard working tough person go through. My brother and I make it over after work every day. We walk short distances with her, bathe her, and get her ready for bed. She is soon to be 84 and is experiencing the rigid tonic pain in her legs, feet, arms, and toes, all of the painful symptoms you wrote about. Her neurologist has her on Requip,she is on an antidepressant and who would not have this condition with this debilitating disease. He said she is on the highest dose he wants to prescribe for her, because of his fear of nightmares she may have.(Which is Cardopa 25/100- qid morning, noon, 4:30,and 1 1/2 tabs at 9pm the nurses are pretty consistent on giving her meds on time. She is having a rough time at night now and feel like her body has to move and it is so hard for her to describe. The pain from her muscle tightness has now become very painful, and the warmth helped and then her arms felt like they were burning up and then so heavy. I massaged her extremities and used Bio freeze, tried to make her do relaxation breathing, she was grimacing from the pain. she receives Tyelonal 1000mg at betime and in the am. after an hour she was resting, I left the nursing home at 10:30pm. I am getting exhausted myself and feel so discouraged that I can't help this woman that has always geen there for me. We've seen my father die of stroke complications,my youngest sister die of breast cancer at the age of 45 and now my mother has this terrible painful death. I can't believe she has to pay for PT and Medicare won't cover it! She now sleeps so
    much during the day,she's exhausted from her poor nights of sleep and now pain. She also seems to be walking on her tip toes more and not as far or as much as she has. I think she is getting worse and more stiff since she quit PT. She had Pneumonia just recently along with a debilitating UTI. I feel like I have been failing her too, I would do anything for her, yet I can't seem to find anything to help her pain or find anyone to help her. I am not a doctor, I'm just a nurse and I am not the brightest one out there.
    I want to thank you for your blog. It helped me to know there are things to keep doing, and i need to try again tomorrow to get her up and call her doctor and show the articles I have read since I have been up. I wish you the best. Staying active is a key. THANKYOU AGAIN, Sincerely, Behmer

  8. To (Behmer) Anonymous whose 84 year old mother has found relief in exercise until Medicare lowered the boom.

    This is tricky because Medicare doesn't recognize that slowing progression or relieving some pain IS PROGRESS for a Parkinson's patient.

    Please talk to someone in the Medicare billing section at the nursing home or her doctors' offices. Someone should know how to advise on the proper MEDICARE CODING to ensure that Medicare understands that there IS Progress.

    Proper coding is tricky and too many billing specialists are not really as knowledgable as a PD patient requires in order to obtain the necessary level of ongoing therapy.

    Please keep up informed.

    By the way, her Sinemet (levodopa/carbidopa) dose is fairly low. We do understand the concern about vivid dreams and illusions or even hallucinations, Steve has had them all. But there are ways to address those issues too and thepain causing stiffness should not be allowed to persist or get worse if it can be reduced. Pain really takes a bite from quality of life.

    You are on the right track and are plenty bright and insightful.

  9. Thanks for talking about what your husband feels. My mother is in a nursing home and has PD. They do NOTHING for her. Her entire care consists of one aspirin, one multi-vitamin and when she is agitated, some med to chill her out. They do not understand the pain associated with it and don't believe me when I say she's in pain. She's poor and on medicaid only; so they don't care. No doctor's visit her, no massage therapists, no physical therapists and she has NO voice now. I hear maybe one or two words and that's it each visit. Mostly "No" and an odd occasional word. She is unable to feed herself, use the restroom, or vocalize pain or anything. She weighs 60 lbs. It's the most horrifying way to end up, as she also has Alzheimer's as well. Half the time she doesn't remember who I am and gets agitated thinking a stranger is in her room. She lays in one position most of the day which I think aggravates the pain. From your post, I am able to know now that she could have a voice therapist and maybe I should demand it. Or a physical therapist/massage therapist or even a heating pad. Surely there's medication for spasms? Surely, they can relieve SOMETHING even if just a little. So thanks for sharing. I am going to print this out and take it with me and hand it to her nurses so they understand what Parkinson's does! They are just very UNEDUCATED.

  10. Unfortunately that is the outcome we all face in supervised care now. In Australia we are causing those we care for to die a painful long death and the carers or whatever they are no more interested in if you eat, wash, lie in your own mess or have clean teeth. Your bed linen and personal clothes are unkempt and dirty and with no air con you are freezing or overheating. Cruelty shows with the bruises and lacerations caused from wrenching your body around when you are given some attention. Lack of equipment, education of the "carers", decent food and lack of a drink leaves you feeling ?animals are given more respect with euthanasia.

  11. A related study on clinical predictors and physical experiences of pain in Parkinson’s disease, which you may find informative.

  12. A related study on clinical predictors and physical experiences of pain in Parkinson’s disease, which you can find helpful.


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