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  • Do you have low back pain not responding to PD medications?

    Posted by Kim on December 29, 2022 at 4:54 pm

    Just wondering if any of you have low back pain that does not ease with your Parkinson’s meds. I have had improvement in most all of my symptoms since being diagnosed and starting medication in 2020, but my back pain has gotten progressively worse. Any kind of bending over sends grabbing pain into my low back area. Anti-inflammatory otc meds do not seem to help and I’ve tried a lidocaine patch and physical therapy. I have always been fit an f still walk quite a bit and do yoga every morning religiously. But it’s getting more painful to do the bending and twisting positions. I’m just dealing with it and trying to stay active. I’m curious if anyone else can relate to this.

    crosene1 replied 1 month ago 28 Members · 32 Replies
  • 32 Replies
  • elise

    Member
    December 29, 2022 at 7:49 pm

    Yes! I also have a tremendous amount of low back pain! I definitely think that it helps to stretch and exercise and I have been doing PT for as long as I can remember! It gets so bad that sometimes I feel like someone has a vice around my middle. It is very painful to bend over or to bend down and pick something up!
    I have just assumed that it is related to the stiffness of Parkinson’s and i am considering DBS to help with it.

    • Kim

      Member
      December 29, 2022 at 11:28 pm

      Thanks for replying. Sometimes I think my symptoms are not the norm, but I do realize this disease can be so different from one individual to the next. I’m curious as to how long you have had symptoms and if your MD has recommended the DBS. I always assumed DBS was mostly done with the goal of eliminating tremors. I thankfully don’t have tremors. I have also wondered if more men than women have tremors. Do you have them? Good luck and thanks again for your response.

    • Kim

      Member
      December 30, 2022 at 3:05 pm

      Hi Elise,
      Thanks for the info and for sharing your symptoms. It’s exactly what I deal with with regard to pain after sitting or standing too long. I’ve had this on and off even before PD was on my radar and just thought I overdid in exercise class. It would get better and not bother me for a decent while. I am now convinced this was the flicker effect leading up to more frequent symptoms. I also had loss of smell and taste but it would seem to come and go. Anyway, Thanks for relaying and responding. Happy New Year!

      • Ray Birk

        Member
        February 6, 2024 at 3:23 pm

        I had bad back pain 20 years before I had PD. So I nevet thought of my pain due to PD. I have been going to an acunpcutst for about 18 months and it has made a big difference in my level of pain.

      • melissa-harrison

        Member
        February 20, 2024 at 8:54 pm

        I occasionally have lower back pain , especially if I am sleeping on a soft mattress. Magnesium Oil relieves the pain.

      • djn

        Member
        March 7, 2024 at 4:15 pm

        To low back pain sufferers, yesterday our PD exercise class worked on core strength and pelvic tipping. While it was difficult to learn, my back pain has diminished significantly today so I am adding it to my “to do” exercise list. It is part of a twice weekly group class led by physical therapists who are focusing on our local PD community.

  • toni-shapiro

    Member
    December 30, 2022 at 1:28 pm

    Hi Kim, I really understand what you are saying about wondering if your symptoms are not the norm.  The more I learn about Parkinson’s the more I realize it impacts pretty much everything in your body.  Apparently low back pain and PD together are common. The stiffness of our trunk muscles doesn’t help and my understanding is that Central Pain changes how the brain feels pain.  Also learning about the Vagus nerve was helpful in helping me to feel I wasn’t crazy thinking many of my issues are PD related. Whatever the reason, like you, my lower back causes me a lot of pain particularly when I bend.  I still exercise and walk but at times the pain gets worse when I am very active or use weights or stand for a more than 10 minutes.  I do notice that just prior to taking my next L/C dose it gets worse.  It doesn’t eliminate the pain but it is better after taking the L/C.

  • garylevens

    Member
    January 3, 2023 at 3:23 pm

    Kim, I would say low back pain is my most consistent discomfort caused by PD. Besides my yoga and stretching which I do every morning, I get on the treadmill for a mile. I bought  a recliner that gets my feet up to chest level. I’ve read somewhere that your back should get lower than 45 degrees. I bought a memory foam mattress. Pricy  but I moved twice last Spring and Summer and had a lot pain. A sales person gave me a valuable tip. If you sleep on your back, use a firmer mattress, and right then and there I made the decision that I was going to try my best to stay on my back when I went to bed. This has been a major improvement in minimizing my back pain. My current meds dosage is eight tabs C/L and a 4 mg Neupro patch. diagnosed November 1, 2019.

  • johncampbell

    Member
    January 7, 2023 at 12:42 pm

    Hello, good point and question, yes I do I have found sometimes a back brace is beneficial, I also had some spinal fusion surgery and was not sure if it came from that, I also have had benefits from massage therapy

  • malcolm-swift

    Member
    January 10, 2023 at 7:31 pm

    Totally agree that low back pain often associated with neck pain is a common PD issue. I use stretching and other physical exercise designed to make the spine and joints more mobile. It eases but never eliminates the pain. I have an excellent Physiotherapist. I sleep on a memory foam mattress and have a variety of pillows for differing levels of pain in differing postures. I resort to paracetamol sometimes (avoid ibuprofen!). It is manageable at present. I have no idea how to deal with a worsening except by medication. I guess pragmatism is the way forward. I don’t think this helps to answer the question but at least you know that you are not alone in being a PwPaabb (Person with Parkinson’s and a bad back).

  • joyce-isler

    Member
    June 1, 2023 at 8:26 am

    I just found this conversation thread regarding low back pain. I have been having a lot of trouble with this, particularly over the last year. I had DBS surgeries last year, which has helped my Parkinson’s. But I am not getting relief from the low-back pain. I also have a slight scoliosis curve. One of my doctors is suggesting an ablation in my spine. Another has suggested a spinal-cord stimulator.

  • barry-alder

    Member
    August 24, 2023 at 11:41 pm

    Hi Kim, I also suffer from the same symptom & it also began long (at least 5 years) i was diagnosed with PD. I put it down to being tall and having to stoop to be able to work on my workbench/machinery, as I’m a bit of a DIYER, welding, woodwork, painting etc. Nowadays otc meds only relieve the symptom for 2 hours, then the monster comes back with a vengance.

  • alex-ivanosvski

    Member
    February 6, 2024 at 3:11 am

    Started to have it now, so annoying…

  • djn

    Member
    February 6, 2024 at 5:27 pm

    I too have had lower back pain on my right side. I have seen an orthopedic doctor and have had physical therapy without significant improvement. Then again I am 79 and perhaps can expect some physical pain at times. I really do not want surgery unless it becomes absolutely necessary. Blessings to my Parkinson’s cousins. May you find peace and joy on your life’s journey and peace in knowing we do not walk alone. Dave

  • russ-w

    Member
    February 6, 2024 at 8:19 pm

    Yes, I have severe back pain. I’ve been through 7 rounds of physical therapy with no relief. I assumed that my back pain was from a work injury. A couple of weeks ago I saw my pd Doctor. I asked her about back pain associated with parkinson’s. Her response was that it was not generally an issue. I have to get out of bed anywhere from 2:30 in the morning till who knows when because of back pain. I slept on a memory phone mattress for almost a year. I finally got rid of it and my pain seems to be doing a little better. Unfortunately, I am a side sleeper. That might also be adding to the problem. I can only stand for about 5 minutes. I can only walk for about a 1/2 a block before my back tightens up. However, I can go 20 to 30 minutes on a stationary bike or a treadmill by holding on to the handle and getting the weight off my back. I use a Walker around the house, not because of my pd instability, but because of my back. It generally always starts in my lower back but slowly progresses up my spine across my shoulders and up into my neck. I can only handle about 10 minutes in a kitchen chair. To ride in a car I have to recline the seat quite far back. I have multiple painkillers that I use for it. Everything from Ibuprofin and Tylenol to opioids and everything in between, depending on the severity of the pain. I have found that 1 to 1 cannabis helps with my back pain as well as my tremors. I only take a quarter or a 1/2 at the most of a chewy which seems to be plenty. The only problem seems to be that it can take up to 2 hours before it starts working. No, you are not alone. I hope this helps. Good luck.

    BTW. I take 600 mg of gabapentin At Night to help me go to sleep and stay asleep.

    • gaezy

      Member
      February 8, 2024 at 2:21 pm

      Hi, What is 1 to 1 cannabis mean? My husband has terrible back pain. Did you have it e x ray and mri? They told him an arthritic bone at the end of his spine. Surgery won’t help. It only hurts when he stands or walks too far, once he rests it goes away. Unlike muscle spasms. Now I’m wondering if all along it wasn’t just a PD thing.

  • julianne-schell

    Member
    February 9, 2024 at 10:52 am

    My husband was diagnosed in 2020. He has been experiencing severe lower back pain for 2-3 weeks. Saw his primary doctor and was given a steroid injection with slight improvement for a day or two. We have just come to the conclusion that it is Parkinson’s related. We have rubbed it daily, used heating pad, and ibuprofen and the pain seems to MOVE around up and down the back. He has been doing water exercises 2 days a week, except during the week of extreme pain and was not able to go. He said when he can go he feels more stretched out and loose. I really feel this cold winter has also aggravated the symptoms, but the symptoms you all mention just confirms to us it is the Parkinson’s. One day at a time and prayers for all of us. I’m the caregiver but my heart feels your pain. Prayers for a cure. Very thankful for this forum so we can all share!🙏🥰

  • lakar

    Member
    February 13, 2024 at 5:40 pm

    I’m glad that I’ve found this thread as I have the same issue and it is good to know what other people do. Though of course, I’m sorry you all also suffer from back pain. I’ve already looked for the solutions, and I’m going to address the select physical therapy customer service to find out the details of their services. It seems that this is the only thing that might work for me.

  • DHC

    Member
    February 14, 2024 at 12:11 pm

    Hi there – been living with severe lower back pain for decades before the PD diagnosis. Besides exercise and pain medication, I would say the biggest reliever of pain is an adjustable mattress. I promise I am not promoting any particular brand but the ability to “change it up” in terms of firm / soft has been huge. It makes sense in a way and I know for me, the morning is usually the worst. Won’t say this has ‘cured’ my back pain obviously but have significantly reduced the down time due to back pain. I came to this approach because I noticed that sometimes when on travel, my pain felt better and I attributed it to the “better” hotel mattress. I would write down the brand / model and go out and buy that mattress when I got home. Felt good for a few months then pain back worse than ever. After 3 rounds of this expensive (and painful) perceived solution, I finally figured out that Random Hotel Mattress #10 was simply providing something different that felt great for those few nights. Maybe this is not the solution for everyone but the bed with the number system for moving between degrees of firmness and softness has worked very well to minimize the severity of the pain

  • Jailorsurf

    Member
    February 19, 2024 at 3:37 pm

    Have been suffering from lower back pain to the point where I went to the Stanford Spine clinic. Surprisingly, I was told that I had the spine of a man 26 years younger than myself. I had been going to weekly PT appointments and guessed that perhaps the PT was the cause of my pain. Up until I was diagnosed in September 2022 I had been very active in heavy weightlifting and bicycling 20 miles 3 or 4 times a week.

    Prior to going to Stanford I had been getting trigger point injections in my back every two weeks along with a prescription for Meloxicam and pregabalin. The drugs certainly helped the pain but sometimes made me tired and/or dizzy.

    The Stanford Clinician told me that it was her opinion that my back pain was caused by my “Parkinson’s posture” and the fact that I have a long torso didn’t help. She recommended more PT and yoga.

  • Veronica Hoegler

    Member
    February 20, 2024 at 8:12 pm

    I have had PD two years and was diagnosed at 67. I go to a pain doctor for degenerative disc disease and SI pain. He does radio frequency ablation on my lower back which lasts about a year and has been alleviating 100% of the pain. Original Medicare covers it.

  • ElaineLG

    Member
    March 3, 2024 at 9:16 am

    My husband had suffered from low back pain, and we tried all the usual “remedies”: new mattress, PT, stretching, Advil, Tylenol. Nothing helped. I have chronic pain from an auto accident back in 1978. My internist put me on duloxetine, which is an SNRI antidepressant but used off label for nerve pain, fibromyalgia, arthritis, back pain, and other chronic pain. Since it helped my pain, we talked to my husband’s physician, who prescribed 30mg every night before he goes to bed. Within a week, his pain was gone. He’s been on the duloxetine for 3 years now with no pain and no adverse side effects with his levodopa and rasagiline. I know many people are hesitant to take an SNRI or other psychotropic medication, but it’s been a blessing for my husband. As always, certain meds are not for everyone and should be discussed with your physician.

  • jeffery-hill

    Member
    March 3, 2024 at 10:58 am

    My pain is more in the upper back. It interferes with sleeping (I’m mostly a side sleeper). I get relief within 30 minutes of taking my C/L dose. I can actually feel the back loosening up in real time.

  • julio

    Member
    March 5, 2024 at 11:04 am

    Hi Kim, amongst other things I am a yoga teacher and I have found that it is not stretching that helps with back pain. Instead it makes it worse a lot of the time, especially in the case of bending forward. I have found that the most effective thing is strengthening exercises. I have PD and I suffer from lower back pain, the way I manage it is by doing exercises from “foundation training” by Dr Eric Goodman. You can find a lot of them on YouTube. And you can start with the easiest ones and build up from there. I am not sure there is an actual correlation between lower back pain and people with Parkinson’s, but it seems common sense to believe that if we have a “tighter side”, that one will be more susceptible to back pain. I think one would have to see the incidence of back pain in older adults and compare it to those with Parkinson’s to draw some meaningful conclusions on that topic. I might need to do some digging on this. But what I know for sure is that strengthening your lower back muscles has the effect of activating them and somehow breaking the spasm, at least temporarily. You have to make a habit of exercising them regularly . As I mentioned I am only a yoga teacher I’m not a qualified physician so I am just sharing what I have found to be the case with my body as a Parkinson’s sufferer and the bodies of healthy normal adults that I teach in Yoga, for what it’s worth!

    Hope you feel better!

    Julio

    • Kim

      Member
      March 5, 2024 at 6:21 pm

      Hi Julio, thanks for your reply. I agree with everything you stated. I was a part time fitness instructor for over 30 years until I had to stop because of Parkinson’s symptoms. I have a strong core and still do abdominal and strength exercises. I started yoga during Covid and still do a 10 minute yoga stretch every morning. But I’ve had to abandon the forward folds and other twists because it makes my pain worse. I have added riding my stationary bike for 15 or 20 minutes and then stretch my leg muscles (I use a strap for hamstrings and hold for a full minute). I still have pain and I am still exploring other treatments but I’ve concluded that exercise and conditioning so that you can stay strong is key. I wish you well in the future.

  • kevinon

    Member
    March 5, 2024 at 2:50 pm

    I’ve had back trouble since high school football 50 years ago. I’ve been on Rytary for 3 years.

  • Fred1975

    Member
    March 5, 2024 at 4:53 pm

    Hi Kim, and everyone else talking about back pain. I will put money on it that the majority of low back pain and Parkinson’s is caused by tight hamstrings, next is pour posture and the other is weak core muscles. I had it before diagnosis and still get it occasionally if I have neglected my daily stretching and exercises. Majority of the time for me is tight hamstrings. I guess it’s caused by the reduced mobility increased stiffness and pour posture that comes with PD but the hamstrings always seem to tighten up first. More recently I have found tendons getting inflamed and sore in other joints due to tight muscles, most often hips and elbows. I’m 49 now and due to making a exercising and stretching a priority since I was diagnosed I’m more flexible than when I was 30 but it doesn’t keep those hammy’s loose when have PD unless you are stretching and exercising and working on range of motion every day.

    • Kim

      Member
      March 5, 2024 at 6:33 pm

      Hi Fred, thanks for responding. I agree that exercising and a strong core should help with back pain. Unfortunately for me it hasn’t really helped. I taught fitness classes for years before I had to stop because of Parkinson’s. That’s what is so frustrating. Also my neurologists seem convinced my back issues are not Parkinson’s related but I disagree. At the very least the Parkinson’s is contributing to my pain. Anyway, all I can do is to keep moving! Good luck to you!

  • Rick Tabakin

    Member
    March 6, 2024 at 8:04 am

    Kim: I have lower back pain which orthopedist attributes mostly to arthritis, but I am convinced also relates to Parkinson’s which I was previously diagnosed with. I take Advil to help alleviate the pain. Some days it helps, and other days, not so much.

  • Jolly

    Member
    March 6, 2024 at 9:28 am

    Hi Kim-Just about everything that the other commentators said -I also share, but I never connected the back pain that I have with PD. I am a very tall man and I spent about forty five years building homes. A great job but it took its toll on my back! I believe that I have had PD. for ten years and where it came from -who can say. I also have degenerate disc disease- which was a recent arrival in my life! Does anyone wake up at night with leg muscles in crippling spasms- so severe it will knock me off of my feet? My only relief is from a heating pad ! Any suggestions?

  • Susan Schlager

    Member
    March 7, 2024 at 4:26 pm

    My husband has low back pain-not on Parkinson meds yet, but I think it has a lot to do with the Parkinson posture which his PT has been working on with him. He has also gone through the BIG program for Parkinson’s which I think may be helping some. Unfortunately he got a lumbar disc herniation which isn’t helping. With this he has to be careful with certain back movements. He is learning about his limitations.

  • crosene1

    Member
    March 12, 2024 at 11:57 am

    So glad to read this thread and to know people have had similar problems to what I have. I have read that low back pain is related to Parkinson’s and that a lot of people with Parkinson’s also have low back pain. The PD elements have to do with stiffness. After 5 years of treating my PD symptoms with exercise and Levo/Carbidopa I feel my tremor and body-shaking have been reduced — but the low back pain continues, worse than it was when I was first diagnosed with PD. I am doing stretches every day, along with inflammatory drugs which is keeping my pain mostly moderate rather than severe, but it goes up and down and I don’t know why. I wish I had a better solution!

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