My WWP experiences intense pain and discomfort that she finds difficult to describe in her legs, several times every day. Mostly accompanied by cramping, both upwards and downwards, of toes, which makes walking very difficult and sometimes impossible.
She had DBS surgery 16 months ago, but this has not proved to be therapeutically beneficial, at least not so far.
Pain killers, like Paracetamol, are of little help. Neither is Co-Codamol which also exacerbates normal Parkinson’s constipation.
I spend a good deal of time massaging her toes, feet and calves and this does offer some, but not lasting, relief. However, this is hardly a practical solution.
Does anyone have any suggestions of how to control the cramps and pain?
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paulalex1313
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I could not link the video but if you search for "Pain and Fatigue in Parkinson Disease - 2019 Parkinson Educational Symposium" then the YouTube video that google finds is worth watching. Its mostly about pain. I would second the comment re Magnesium. I take 2x 250mg tablets every night to keep cramps at bay and have a hot bath with epsom salts nightly.
Thanks. I’ll search for this and we’ll watch it. She’s tried Magnesium in tablet form, as well as in massage oil and gel and magnesium salts in the bath. None seem to deal with her symptoms.
Hi paulalex1313: I experience dystonia (painful cramping) when my levodopa level is low... Is your wife taking any Parkinson's meds?
Just the one half Sinemet each 90 minute dose . It could be insufficient, as DBS is not functioning well. We’ll discuss with her consultant in February, when we next see him.
I've never heard of that dosing schedule before, every 90 minutes, but I know nothing about DBS. I get foot dystonia in my more affected side when my dopamine is low, primarily with walking and always with exercise. I need 1.5 25/100 tablets every 4 hours to keep this under control. Was her pre-DBS dose every 90 minutes? I would agree with those who say she probably needs more dopamine.
Use topical magnesium chloride spray, which is commonly called mag oil to relieve the cramping and much longer lasting and more effective than massage alone. Here is a typical product.
It will also alleviate minor pain from multiple causes. If it feels uncomfortable on the skin, add a little hand and body lotion on top of it. It will also supply some needed magnesium through the skin in this ionic form. This bottle will last quite awhile. It is also useful for sprains and strains as well as minor joint pain. It relieves cramping in about two minutes and lasts through the night or most of the day.
I use a product called Theraworx. I also try to keep myself hydrated. I find that dairy milk seems to be a cramping problem so I drink unsweetened almond milk, vanilla flavor. Cycling as part of the exercise regimen is helping. I have a stationary cycle for that. Thanks for sharing, it’s helpful to all of us as we navigate PD. We need more research for a cure.
Thanks for your ideas. We have a variety of Magnesium products, none of which seem to help much. She is never without a water bottle, so is well hydrated. We only use unsweetened almond drink and never dairy milk. We do have an exercise bike, but she has been reluctant to use it. I’ll get her going on this again to see if it helps.
Might be a long shot for you, but I had nightly lower leg cramps and something like dystonia in my upper back (very painful) which I assumed to be Parkinson's. Both turned out to be caused by food and supplement insensitivities. The back pain for example comes back if I supplement with Mannitol and/or oral B12. Weird.
Seems to be Mannitol yup. I've tried 3 or 4 times starting and stopping Mannitol with a month or two in between, and each time, within a week I begin having worse and worse ache and spasms in my upper back. 2 of these trials with Mannitol I also added B12 so I can't rule out that as contributing, but I doubt it.
Hi there, I am a 74 yr old woman diagnosed with PD in 2016. The toes curling under on the feet and restless legs is something I have suffered with for a long time. As you say massage helps a little but doesn’t last. Concentrating on the toes telling them to relax also can help but again is short lived. Dystonia is very painful, incapacitating and, for me, a constant symptom of my PD. I have recently discovered a way that seems to help alleviate some of this discomfort. It comes in the form of a jelly-like prop which fits under the toes which you wear inside your shoes. A certain tolerance has to be built up but this is no worse than the curling toes. I have done this for 2 - 3 hrs during the day which has had the effect of reducing the curling which is normally at it’s worst in the evenings. These toe supports cost me £6 for 2! I don’t understand why it should work but it seems to help rather than eliminate. I would be interested to know if it works for others.
I suffer from toe dystonia as well and only gets better when my levodopa and mucuna kick in. When I'm home I keep this under the desk it costs about $10 on Amazon and it's helpful for my toes and feet to stretch and have something to do.
11"x 7" wooden Abacus like with shapes that you roll your feet over while sitting.
Like a few others, I suffer of toe curling in my left toes when the levodopa is really low, and they get released instantly when the levodopa kicks in. It is however quite painful and sometimes just waiting half an hour or an hour for the levodopa to kick in is not bearable.
I discovered by accident a method that can help. Don't laugh, it is crawling. As I live alone, one day that I was immobilised by a dystonic episode whilst in my living room, in need to get to the bathroom, I eventually had to crawl. After a few steps on my knees, the dystonia released.
It can however come back, depending if there's ldopa in the system to maintain it. With the years, I feel that "standing on my knees" also helps, and a variant is to do it on my mattress or sofa.
Remember that dystonia can also happen at the pic of blood/ brain concentration of ldopa but I suspect that's not the case of your wife considering her scheme.
Three "warnings": if her dystonia is due to low ldopa, then the trick doesn't come instead of an ldopa extra tablet (though I guess that with a dose every 90 min there's always a dose coming). Just make sure it's coming (this also means understanding why it didn't at the last dose ie a heavy meal). Second, in my case, I can have an inverse cramp with my toes graciously (...) extending and expanding. In that case the knee trick won't help and might even get it worse. These days, I experience first curling toes and then extension and then resolution.
Third it can lead to falls.
I would also suggest to drop an email to the neurologist or specialist nurse if you have one to ask for help, such as a prescription for orodispersible Mardopar. Two months wait with such frequent pain is tough. The medical team should be sensitive to this.
And if they are not, change neurologist. What's the point of a neurologist that leaves you to suffer and doesn't offer solutions?
Thanks for your help but I’m afraid if I did get down on all fours I wouldn’t be able to get up. I could try on my bed though. I am currently looking at the efficacy of the medication I’m prescribed. I do not experience a positive response to taking levadopa nor do I react negatively to not taking it. I would be interested to know if others have this ‘non reaction ‘.
This has been mentioned in the past as a possible solution to the dystonia in her toes. We are due to see her neurologist on Monday and we’ll mention this.
What helps me is kneeling with toes up to stretch plantar fascia and toes. Then with toes down to help front of lower leg tightness.Then I use a percussive massager (like a theragun) and go to work on crampy areas. Whole routine about 7 minutes in am and in pm. Works wonders for me. Start day right, and sleep with minimal painful cramps now. Of course I agree with Mag, as well
I had issues with toe curling (dystonia) before I started taking carbidopa levodopa. Did she have this issue before DBS when her dose was double what it is now? If not, I suspect the reduction in carbidopa levodopa is the cause.
She did have this issue before DBS. After DBS her daytime dosage of Sinemet was reduced by half, from 25/100mg to 12.5/62.5mg, but the frequency needed remained at every 90 minutes. I suspect that as DBS has been ineffective so far, her Sinemet regime is not correct and that a higher dose, less frequently, may help.
I have that problem as well. If I drink a lot of water, stretch and exercise it seems to help quite a bit. Also, like others have said, magnesium. It’s definitely uncomfortable!
She drinks water frequently and is never seen without her water bottle. Two Dance for Parkinson’s classes, one yoga, one Tai Chi, one or two PD Power type classes and a couple of decent walks each week are in her exercise regime, which is a pretty determined effort. She gave up taking magnesium a long time ago, because it didn’t seem to help at all, but we’ll start her again on magnesium and see if it might offer some help now.
I have problems with leg cramps and curling toes. I do much of what everyone has suggested. In addition I use a small ball ( racket ball works well) and roll it under your foot as hard as you can. You can do it standing or sitting but put as much pressure as you can tolerate as you roll your foot up and down the ball. Do that your about 90 seconds on each foot. I also put compression socks on some days. They kind of stimulate your legs like a massage. Of course check with your doctor first. I was diagnosed in 2017 and the cramping has become a problem in the past year. Good luck!
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