Diagnosed in 2017, started medication a year later. Over the past couple of years I have had issues with my calves cramping (like a charley horse) without being able to relax the muscle.The toes begin to curl and then my thighs ache.This can continue for hours I have to get up and continue moving. So when I should be sleeping, I am up walking or riding my stationary bike. I have gone to Physical therapy as well as increasing the C/L from 1.5 tablets to 2, the neurologist also put me on one 100mg of Amantadine 2x per day. The past couple of months the cramping has increased and has now reached a point whereI either can’t fall to sleep or stay asleep. Of course this adds additional stress. The cramping is not just at night, it can be any time of the day. The cramping appears when I sit or lay down or even standing. The C/L is wearing off because it’s time for the next dose. Usually, the dose kicks in 30 to 60 minutes, but the past few weeks there are times it does not work. My understanding is that Amantadine is supposed to improve the efficacy of the C/L. Am I correct in this way of thinking? Also, isn’t it true that the more C/L one takes the more tremors/cramping occurs when it wears off?
In an effort to reduce the tremors/cramping my MDS/neurologist increased the Amantadine to a third pill for the day. So now Amantadine is 8 hours apart, 3x per day.
In addition, he added (SSRI)Mirtazapine 7.5 mg to take before bedtime. The side effects take up 3 full pages! I am already on an (SSRI) Sertraline that I take in the am. I have not started taking this one yet, if I ever do. I feel like the doctors are just throwing stuff at the wall to see what sticks and go with it.
I do stretch, walk , stationary bike and participate in Rock Steady 2x a week. I understand that movement is just as valuable as medication.
I know that this is the nature of the disease, but I feel if it wasn’t for communities like Health Unlocked we would know even less. Does anyone have any thoughts as to how I can reduce the cramping? My MDS is a well respected neurologist in the field, although not terribly warm and fuzzy. I notice he is more attentive to me when I bring someone along with me. My apologies if this is confusing, but any thoughts would be greatly appreciated.
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mleec
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Hello there, my heart goes out to you, my PD history is similar to yours, I can only share with you what has worked for me regarding my Restless Leg Syndrome (pain and cramps in my feet most of the day and night) which I attribute entirely to my Parkinson's Disease.
After trying to live with it for over 2 years, I now take (beginning 6 months ago) 3 times a day, Neupro 24 hour 2mg transdermic patches (rotigotine) + Neurontin 50mg (gabapentine) + Tramadol 50mg.
Quite low doses in all. I'm trying to cut the Tramadol to bedtime only because of its addictive risks.
I live in France so I'm sorry but I can only give you the French names of the medications.
Other than that, I only take C/L 12.5/100 3 times a day, each time at least one hour before eating.
And it works for me => little or no more pain or cramps in my feet, thus leading to less anxiety thus leading to less foot pain, and so on.
Sounds very much like my experience , of course you have a lot more of the road still ahead of you. I am not at the end of the road but I can see it from here. I take a lot more CD/LD and my doses are 8 times a day, (every 3 hours).If I miss the 1am or the 4am I wake up to fully cramped legs. I keep a couple doses of CD/LD at my bed.
I can see it from here, reminds me of a joke. We went to an annual church supper in a small country village and the new minister from the city got up from his wheel chair to welcome us to the fund raiser. He said that he had travelled to many cities and towns and had come across big churches and cathedrals where there were signs posted beside the telephone that said "Talk to heaven $50.00 " or similar charge to raise money. When he came to the village he saw a sign that said "Talk to Heaven $1.00" . He asked why they had posted such a low price and the answer was " It is not a long distance call from here" . He remained in that charge raising a family for many years, close to heaven with his affliction .
You will straighten out the cramps and other problems , listen to your Neurologist and make sure he is listening to you. He has many tricks up his sleeve that he has not shown yet but he will when the time is right. Keep him informed . You are slightly under medicated , and he needs to know that. Amantadine counters any dyskinesia caused by the LD what you are looking for is one of many agonists to lengthen the effect of the LD. I take Ropinirol which takes a lot of getting used to but I can not take many of the others. I swore I would never take Ropinirol again until I had tried all the others and then I quickly changed my tune . Side effects , you will get used to them and find what is right for you. It is a long and winding road and it is not easy but it is what it is .
Be Happy
Happyness is a frame of mind and you can be happy if you have a mind to.
Thank you for your encouraging words of wisdom. I do know how fortunate I am, and I constantly remind myself of that, but sometimes...Ugh. Have a beautiful day!
Thank you Boscoejean for your advice. I do take magnesium and B complex. I imagine it might be worse if I did not take it. Thank you for all your advice. I will have to adhere to my healthy diet more consistently.
How much do you take? And which magnesium are you taking? Be careful with Vit b6 as it can cause neuropathic pain in too high a dose. My PWP is taking slow release potassium 600mg and a multi magnesium 505 mg and does not suffer with cramping any more - he suffered badly with hands, feet and legs - most people are deficient in both of these elements these days as our soils our vege etc are grown in are deficient - he sleeps like a baby now but wasn't before these. Personally I am not in favour of SSRI drugs - too many nasty side affects for me.
I was taking about 1000 mg of magnesium. I agree about our soil being depleted of all of these nutrients. I am going to look into the potassium. Thank you. 🙂
just remember that not all magnesium is made the same, do some research on that, my son takes a product called magnesium 7, it has seven different types of magnesium in it and he takes it with other vitamins , like zinc, and k2-d3 to get the full effect of the magnesium , granted he doesn’t have PD, he has some other none related issues but vitamins don’t always work alone
Oh how I kick myself at the number of times I dismissed a post like yours when I was suffering from severe leg cramps. I ended up a complete mess and as a last resort I cut out dairy, eggs, processed & sugary foods, ate smaller portions, went low protein, low gluten, and started eating mostly frut and veg. The transformation within one to two weeks of doing that was unbelievable. It can (for some, maybe many, who knows?) be as simple as that. But do not expect your neurologist to have a Scooby-doo about how incredibly effective a change in diet can be - this week I showed my new neurologist a video of myself from mid 2023 when I was a complete mess and told him about my change in diet and it just didn't compute with him, I think he thought I was bullpooping. Try this kind of diet for just one week and see how you feel.
AGH_1966, I was diagnosed in 2017. I did very well on C/L 25/100 immediate release every 4 hours around the clock. If I didn’t include my after midnight doses, my symptoms disrupted any sleep I attempted.
After five years of this regimen I began to struggle with increased Off time and sometimes complete med failure. My MDS /neurologist Prescribed a number of additional PD associated medications; with no success; and often times those meds exacerbate the PD symptoms. I finally began taking my C/L 25/100 every three hours around the clock. I have been doing well with shortening the time interval between meds; which resulted in an overall increase of C/L from 600 mg per day to 800 mg per day. I continue to hold steady with that med regimen.
I have found reducing sugar and eliminating meat, protein, as well as dairy, from my diet has greatly improved my quality of life. I eat mostly raw vegetables and fruits. Some vegetables, e.g. broccoli and cauliflower I steam for a very brief period of time before putting it into a larger salad of mixed vegetables and fruits. I nearly always use a vinaigrette salad dressing.
Now, if I could get rid of the stress in my life…. 🙂
I asked my HWPs Neurologist of there was any diet better/ worse for PD & he gave me a quick “no” and told me it doesn’t matter what you eat. 🤔. Clearly I know differently but just found it interesting he had nothing to say about diet.
Hello again, I’d like to tag along with Boscoejean’s contribution if I may.
In addition to what I mentioned above, I try to scrupulously adhere to William Curtis’s protocol which also promotes the Ketogenic diet and intermittent fasting therapies.
I believe that those therapies also partly contributes to the lessening of my RLS symptoms.
That's a tough one for me. I eat meat maybe once or twice a week. I do try to avoid the refined sugars and processed foods. I have been making meals from scratch since I was a kid, and processed food never quite lives up to its promise.
Interestingly, I have cut out dairy before but nothing changed, but it’s worth another try. I’m not allergic to anything but maybe I should have a food sensitivity test done. 😊
Hello, sorry to hear about your intense leg cramps. My sister who has PD also has intense leg cramps but mainly during the night. She started taking a serving of an electrolyte before bed and it helped reduced her night time cramp a lot. However, the cramp was still occurring. By coincidence when she started taking HMB (2 grams a day), her cramps were mostly eliminated. She took the HMB for her osteoporosis but it unexpectedly helped her leg cramps. It worked for her. Just sharing this for your information but no guarantee it will work for other people.
Thank you for your advice. Interestingly, my sister-in-law had me try the electrolyte drink that she uses for her leg cramps. Yesterday, I had a pretty good day cramp wise. Slept decently as well, but could be just coincidence or the extra amatandine is doing what it needs to do. Time will tell, but I am going to look into the electrolytes.
Suffered terribly with whole leg severe night cramps despite taking magnesium religiously. Now have an electrolyte drink an hour before bed and works like magic. I suspect it is the potassium/sodium/calcium/magnesium combo that helps.
Also noticed that if I was dehydrated during day by not drinking enough, that made cramps worse.
I don't have PD but in the past year I'm experiencing increased Charlie horses not only in my legs but all over my body! I've never had anything like this before & I'm not taking any drugs at all. I've been as close to 100% natural as possible for decades. The only thing that helps me very quickly almost instantly FOR MY LEG CRAMPING (definite Charlie horses) is to rub magnesium oil on my legs. Since it tends to dry out my skin & even can cause a burning feeling that eventually dissipates , I've found that magnesium oil on the bottoms of my feet before getting into bed has been helping a lot. So now I have rubber shoes that I spray inside with the oil & walk with them to my bed so that the bottoms of my feet are saturated that way. It's just easier for me since I'm quite disabled due to Lyme, arthritis & injury related pain. But this method has definitely been working well for me. And my cramping had been increasing & causing me so much pain & restless legs.
Thank you for your advice. I do have magnesium oil and have been trying that as well. You can see how desperate I am, lol. I'm willing to try almost anything. Have a great day!
I get a similar pain in my calves as you described, although less frequently: about 1-2 times per month. The entire calf muscle cramps up, sometimes so intensely that I can’t walk. When it happens, it is usually in the evening or at night, and typically when earlier in the day I’ve played a particularly competitive game of tennis or have gone on a long bike ride. I’ve found that slathering on the muscle a lot of topical NSAID, like Voltaren (sp?) works. I also drink a lot of water at that time. Also, in the evening of days in which I’ve had vigorous exercise I try to remember to not have wine with dinner and to do some stretching exercises before bed. It seems to be working— I haven’t had one of these “Charley horses” in a few months now.
Hallo, spijt me dit te horen, maar begrijp het! Ik heb hetzelfde verhaal; diagnose 2017, medicatie 8x daags 2 stuks C/L 25 100. Dus elke 3 uur. Ben sinds 5 weken geleden begonnen met; 8x daags 1 stuks C/L 25 100 en 120 mg natuurlijke L-dopa uit slijm (99%), dus dit betekent de helft minder Carbidopa. Ook geen, van zo weinig mogelijke geraffineerde suiker. 5x per week 1/2 uur wandelen op 80% vermogen. Veel groenten en fruit. Resultaat tot nu toe; Vreselijke krampen in benen en tienerkrullen zijn voor 80% verdwenen. Ook merk ik dat ik steeds minder medicatie nodig heb, al gaat dat langzaam en subtiel. Ik ben er zeker van, dat wanneer je alles in de handen van God onze Schepper en Verlosser legt en het 🙏 van Hem verwacht, Hij je de weg zal aangeven en Hij je rust zal geven, echte roest, die alle verstand te boven gaat. God zegene op je reis!
Thank goodness for translators! I am intrigued by what you are taking. I am going to look into the mucuna. I do eat a lot of veggies and fruit. Try to avoid sugar. I make a point to avoid processed foods as well. I am relatively active every day with walking, stationary bike and Rock Steady (Boxing program for people with Parkinson's.) Thank you for your advice and blessings. Blessings to you as well. Have a wonderful day!
Have your magnesium levels checked. I had calf cramps that were tearing my knee joint apart. Went away when I had my magnesium checked and it was very low. Now I take 3 different doses a day. My magnesium levels are ok. No more cramps.
I had an issue with leg cramps not too long ago and searched online for answers. I tried the recommendation that I eat lentils. Perhaps it was a coincidence, but the leg cramps disappeared.… At least this cure shouldn't have any negative side effects. Might be worth a try.
When I was diagnosed in 2018 neurologist told me that no medication would help me because my tremors were only head and neck. He said I was a candidate for DBS but I didn't feel I was that bad off. Since then I managed on my own. Two things I've done for leg cramps - 1. rub with lavender essential oil mixed with a carrier oil (this was pretty effective) 2. Take taurine 500mg before bed. This is very effective. When I ran out a couple months ago I began having leg cramps again after about three days off the taurine. Once I started again the cramps stopped.
I struggle With it too. I only take amantadine 1/2 tablet 3 x daily. I do alot of massage with a gun before bed or when it happens. Trying some Rsl tincture not sure it works. Can try tonic water with quinine in. That helped but took a1/2 hour to an hour. Still searching for a better cure for that symptom.
I agree with evenshoshan… my husband suffered with this too. He’s had PD for almost 15 years, with many of the same symptoms. Do be sure to drink plenty of water each day. Toe curling was corrected by a simple surgery ( this surgery has a name I can’t recall right now)which cut the tendons in his toes, with no complications at all. No more toe curling or pain when wearing shoes. We were given the same Neupro 2mg 10 years ago, but only 1x a day evening. He take a max dosage of C\L among a few other meds. My husband has had only 2 episodes of cramping since then. He does get Parkinson’s related pain in his legs occasionally now, for which he takes a mild muscle relaxer , on an as needed basis. He does have trouble sleeping, but not from cramps, he takes a sleeping pill when needed for that.
I hope you get some helpful advice and information from these comments.
Leg cramps are miserable. I use magnesium oil, from the health food store. Massage it in, I do it on my calves. After 15 minutes or so I massage a moisturizing lotion over it, which makes it more comfortable
No PD medication has been proven to reverse PD Movement symptoms.
The only proven way is to start walking as fast as you can, preferably on a grass surface, for a maximum of one hour, every second day. After two years, you will be PD-MOVEMENT-SYMPTOM-FREE.
Thank you for your advice. I do push myself pretty hard and there is always room for improvement. However, as you know, everyone is different. Have a great day!
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