My husband's pain seems to be out of control. He says he hurts everywhere all the time, but mostly his whole right side, from his shoulder, arm, wrist all the way to his toes. He uses magnesium and heat, a tens machine as well as massage, CBD and acupuncture. But nothing really helps or lasts long. Even had a cortisone shot in his toe a couple of months ago. But the constant dystonia has taken its toll and he's just hurting all the time. Does anyone have any pain remedies or anything their doctors have suggested that has helped? It's hard to watch him suffer all the time.
Thanks for any help 🙏
Mel
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I wasn't gonna go into his meds cuz they don't seem to help with his chronic pain. He is basically on madopar 250 mg 5x every 2.5 hours. If he gets any on time its only for like an 45mins ea dose if hes lucky, the rest of the time he struggles with dystonia and the pain or PD symptoms. He does mannitol, b1, cinnamon and several vitamins and supplements. Seems like we just can’t get the combo right for pain though. We have lowered his madopar and upped it with the neuros permission to try and find a sweet spot. Still havent found it 😞 He's 64 diagnosed at 57 still works a swing shift full time, very active in that sense. I just would like to see a pain management regime that people swear by, but maybe it doesn't exist?
Dystonia can be a symptom of Parkinson's or of levodopa overmedication. First thing in the morning when he arises is his dystonia at its best or its worst? Versus in the afternoon after he has had several doses of levodopa?
He gets worse as the day goes on, pretty good in the mornings usually. We have told this to his neuro so many times. He just ups the meds, but it makes him worse. We asked for other PD drugs, but he insists he's just under dosed and every time he takes the drs advice, he only lasts 4 days on the higher dose and by then he can't hardly walk his body is in full spasms, twists etc. So now we are just looking for anway to quell the pain, especially in his toes and arm. Even with his current dose at 250mg every 2.5 hours he suffers. But like I mentioned even this doesn't keep him on for long and his pain is a constant no matter what. I'm sure its because his body is in constant motion and the arthritis and muscles are just exasperated. Its taxing for sure!
It seems that doctors do not recognize existence of levodopa induced peak dose dystonia, which is what your husband is suffering from. The 45 minute on time you mention is what he gets before his plasma levodopa level gets too high. I suggest gradually reducing his levodopa dosage until it alleviates this problem. If I am correct, as his levodopa dosage decreases that on time will increase. For more information on this issue see:
Thanks PB. We have been lowering and increasing his regime for a year now, and we cant find an optimal dose. When he takes a lower dose his slowness and stiffness and tremors make him crazy. Then we increase it which will help for a few days, then the dystonia goes crazy. All of this is done with the drs blessing. Its been beyond frustrating and very hard on his body! It's taking a beating! Im thinking we need another medicine, but that hasn't really been entertained by the dr. I fugure if we could get the pain under control maybe he could deal with it all a bit better.
" In an animal study using rats, co‐administration of entacapone with levodopa attenuated all kinds of dyskinesia* when compared to levodopa monotherapy. Stalevo (Orion), a commercially available formulation, combines levodopa, dopa‐decarboxylase inhibitor carbidopa and entacapone in a single tablet."
Another possibility would be adding a low dose of a dopamine agonist. Dopamine agonists can have significant adverse effects but when levodopa longer does the job they have a place. From the same reference:
" A prospective, randomised, double‐blind study, compared the safety and efficacy of the dopamine D2‐receptor agonist ropinirole with that of levodopa over a period of five years in patients with early Parkinson's disease and the primary outcome measure was the occurrence of dyskinesia*. If symptoms were not adequately controlled by ropinirole, patients could receive supplementary levodopa, administered in an open‐label fashion. At 5 years, the cumulative incidence of dyskinesia* regardless of levodopa supplementation was 20% in the ropinirole group and 45% in the levodopa group. Similar results have been reported with pramipexole."
*These papers included dystonia as a kind of dyskinesia.
Thank you PB. I have to go through this again. I am fairly certain he is having this issue! But Dr says its so rare, so not possible. I dunno, it's all very frustrating!
Hi, it seems to me like upping the Madopar gives rise to the dystonia and dyskinesia it’s a very hard balance to get right. My husband didn’t get up to the dosage your husband is on, but even by increasing the dose by a small amount made the side effects worse and the toe curling pretty bad. That was after 5 years of taking up to 5 x125 mgs. He did change Neurologists.
He told the new Neurologist he didn’t want to keep increasing the Madopar as the dyskinesia was awful. He now takes 3x 125 mgs of Madopar spread out during the day but also has Rasagaline once a day and either 2 or 3 Amantadine per day and the dyskinesia and dystonia is still there but much more manageable and nothing like it was.
He has been dx since 2015. the Neuro used to say he was underdosed but he didn’t have to put up with the side effects! He now says if you’re happy without as much Madopar then you decide.
He does take supplements as does your husband and often either paracetamol or Neurofen for back pain and a tens machine as well. He’s not keen on strong pain killers as they send him to sleep.
Thank you for your kind reply. My husband situation is similar like you said. He tells the dr that he's afraid of the madopar now, because the pain and dystonia is so hard on him. The dr says he needs to take 200/50 with a 100/25 quick release every 2.5 hours from waking to bedtime. This dose is the one he is scared of it sends him into a total tailspin. The dr says its because he doesn't stick with it long enough. But we tell the dr after 4 days on this dose he is completely out of control. Like his leg is doing 180° twisting for hours! We show him videos and he will still say he's underdosed. Its just insane! Now he is on a lesser dose, but the pain seldom goes away he still struggles with dystonia dyskinesia, but nothing like that higher dose.
No problems, my husband had similar effects from too higher dose but was improved with reducing Madopar and the additional meds.
I can’t see that taking it any longer would improve the symptoms, when it clearly gives side effects. The trouble is no 2 people are alike on PD meds. The Amantadine gives my husband quite a lot of relief from dyskinesia which can be worse than PD symptoms. Good Luck 🤞
I am def going to ask regarding complementary medications again when we see the neuro. I know my husband is afraid of taking more drugs, and I totally understand his concern. But as you say, no two people are alike, but the drs throw the only drug and combos they have as if everyone IS the same and that's what's so frustrating! Our Dr will let us keep experimenting with the Madapor, but anytime I ask for pain treatment, this is when he claims he's under dosed and that's why he's in pain. I'm sure he's right, but when you up his dose and the pain gets worse as well as symptoms, he doesn't want to hear that. Go figure
Hi PB, I think you are right, but the specialists here are slim pickings! My husband is Australian and I am an American and I am so envious of all the drugs and treatments and specialists available in the States compared to here. I just want us to be heard. We literally have the same conversation with the Dr when we visit. It is insane! I fear if we change Drs, we will have a warning label on our file. I am sure these Drs here all know each other. Australia is a tiny place, people wise.
For what it is worth, I am well served by my primary care physician. If there is any physician with prescribing privileges who is willing to help you that would be an improvement over a dysfunctional specialist.
It seems that levodopa -induced peak dose dystonia is commonplace, judging by the frequency of reports on this site.
yes I couldn't agree more! The GP was willing to help but wouldn't prescribe the gabapentin for some reason. I guess the neuro is the one I have to beg to now, unfortunately.
Hi all, I’ve been dealing with chronic pain for a really long time, like 35 yrs at least and I’ve tried nearly every medication and other tools to remove my pain and I’ve never found that silver bullet and have just have had to manage it the best I can and just accept it, it is what it is. Recently though I’ve discovered CBG, a cannabinol in cannabis that is showing some promising results with pain and neurological disorders and I’m trying it to see if it helps me and so far I’ve been pretty impressed. It’s not cheap but doable. I’ve actually been able to reduce the Vicodin I’ve been taking for years which is very encouraging. You should look into this. I think it may be helpful. Best to you and I hope you get relief soon. I ditto another comment about walking/exercise which I do every day and I understand walking may be difficult but I use a stationary peddler that give my legs a great workout without having to walk. Also, if you can get in a jacuzzi or warm bathtub with Epsom salts, that really helps me. Blessings
Thank you for your kind reply. I am sorry to hear how you have suffered. The pain is the worse I think! My husband takes a cbd oil, but it has a more calming effect than a pain relief. I will def try to look into the one you suggested. He does not like taking strong pain killers, but with that said he will take an occasional 1/2 valium if gets too out of control. He says he feels like a wound up spring on those days. I wish you great success with your new cbd oil. Please keep us posted if it continues to help.
Hi 1950ryder, I don't think so. He has had panadol forte, but we worry about taking that excessively. I will see if we can get the nurofen plus. Does it help you?
Do these meds interfere with the PD meds at all? I have asked for gabapentin, but dr says no. He just needs more madopar. It's not helping thats for sure!
Gabapentin is very good for PD patients. Neurologist prescribed it to me.You can Google it. I have very strong severe pain, mostly on the second part of day , after 1 pm. In the morning I am ok. I take gabapentin, but not so much, doctor said I need more for good result.
What helps is walking - I do it every day, 7-10 km. At first, it hurts, but then pain goes away.
Yesterday I took Norco with gabapentin and was vomiting. Pain was unbearable. II understand that I allergic to it, so I need more exercise. That's just my experience,
Doctors don't want to prescribe opioids, that is a problem.
Thanks Koshca, I am going to ask the GP instead of the neuro to prescribe the Gabapentin. Sounds like it might be a huge help. Can you take it frequently, or is it something you use only when you can't stand the pain any longer? My husband will take half a valium when he feels his arm is so tense it might just break! I feel for everyone suffering this disease!
Yes, this is what the GP said, I have to ask the neuro. It's just so hard to watch him suffer, esp if there's something that may help him. We will just keep asking, squeaky wheel and all.
I can’t add anything. I’m sorry. Other than sympathy for him. And sympathy for you too.
But I was curious if it’s dystonia, is the pain from the muscles kind of drawing or tensing? I have that, which is very uncomfortable and it’s usually in the afternoon or evening. Anyway, I have Xanax for anxiety just to take as needed. And I don’t really need it too much now because I never do anything LOL. But I did take one when all this was happening one afternoon. I was in pain before I did that and I was just lying in the bedroom not doing anything, Just gritting my teeth. But soon as the Xanax hit my system all was good. And you don’t want him on Xanax of course. But you’ve tried to adjust the main medicine so I wondered if the doctor could add some thing that would be relaxing.
I see gabapentin popped up. I don’t know if he could take this safely, but sometimes I take Ashawaganda. But it’s not as dramatic and relieving as a prescription medicine might be.
I hope you can help him find some relief. Especially if he’s working wow. My other note is I wish the doctors wouldn’t argue with us. They have to guide us and keep us safe, but sometimes… we’re discouraged from being our own best advocate.
Thank you for your reply. Your words are very kind. My husband says the pain is def tension and he gets dystonia or dyskinesia in arm foot and leg, usually in the evenings as well, but even in the middle of the day. Seems like he just suffers the whole time. Wonders what's the point of the PD meds and all. He just figures hes one of those people that will get minimal relief. He hasn't tried xanax only thing is a half valium once in a blue moon. Says it helps, but not perfect. I was hoping there was a way to ease the pain. He is moving all the time and i think thats why he hurts all the time. I am grateful he sleeps for the most part. Its def his best time of the day.
I wish the drs would just think outside the box. Seems like they have one formula and if that doesn't work it's your fault. This just makes my husband even more stressed out sadly. You are so right about us being discouraged from being our own best advocate, its spot on, wish there was a way to get the message through.
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he still struggles with dystonia dyskinesia, but nothing like that higher dose.
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