PSP Association
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Leg cramping

Hello. Has anyone else had there loved one suffer from excruciating leg pain that my Dad describes as leg cramps? He takes Baclofen, lyrica and cymbalta and tylenol for pain, but Baclofen seems to be the only one that works. I wonder if lyrica is doing nothing as I can't find mention of it on any other psp site. Thanks you for any imput anyone might have.

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I am sorry My husband does not take any of these meds nor does he have leg cramping.....Have they determined why this is happening?

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Hi. thanks for responding to both of my post. The leg cramps is the main cause of his discomfort and I was just remembering it was the first symptom he had, even before his gait starting altering(in that shuffling way). He took alot of restless leg medication. The neurologist said it was due to muscle contraction. Not sure why exactly, but the doc seemed to say it was part of the PSP. Glad your husband doesn't have this. It is really uncomfortable. We was yelling in pain at the er before he got baclofen.

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Physical therapy would be his best bet....some other alternatives:

chair Tai Chi and or yoga

basic stretching

in pool exercise

chiropractic

acupuncture

Massage

Senior Centers would be great for the first 3 or 4 activities...

You might call centers for schedule etc. If you get your dr to make a prescription, you might get insurance or medicaire to pay for it! :)

Good luck

AVB

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Yep dad used to suffer with this apparently tonic water helps x

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Thanks Satt2015 forgot about that old remedy I think it is the small dose of quinine helps with cramps (rugby playing days). M gets occasional leg cramps massage tends to work but will try a PEG flush of tonic water instead of plain water, to see if that helps.

Tim

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Yes. I take it with gin !!

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Now there's a thought, may replace the red wine.

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Hope it helps Tim x

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Hi, my dad also has PSP, and although he's not had this problem yet, I might have a couple of suggestions that could help your dad, as I'm a nutritionist and see lots of people with restless legs. In my practice, I've found that it's often linked to a need for magnesium. I recommend rubbing magnesium oil in to the legs before sleep, or whenever the pain is present. So many people have found this helpful. Magnesium goes through the skin really well, and may be easier than taking supplements. Lots of medical drugs, and stress, cause magnesium to be used up by the body, so does sugar (sadly)! Dietary forms of magnesium are leafy green vegetables, nuts, seeds, dark chocolate, meat. If you're in the UK, you can get a brand of mag oil by Better You - they do several versions of it, including one for sensitive skin, as some people find it a bit 'prickly' when they apply it. Not sure what's available in US, but most health stores should sell mag oil, or mag flakes that you can make in to oil, or Epsom Salts that can be dissolved for a foot bath for your dad. Cramping in the legs can also be due to other electrolyte mineral deficiencies or imbalances - has you dad had a blood test recently? It can be easy to put a lot of symptoms down to the PSP, but it may be something else alongside that can be eased with the right supplement.

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Thanks for your very helpful response. I ordered the mag oil and I'm going to try it. I new about magnesium, so at one point I was really pushing the supplements until the general doc said to stop because his magnesium blood count is very high. I was just wondering if that still doesn't mean he is getting the magnesium he needs in him muscles. Thanks so much for the help.

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From what I understand, it's only the RBC magnesium test that gives a good idea - the amount of mag actually inside the red blood cells. Other blood tests are not a good way to measure it, and there are some who believe that you can still have a raging deficiency actually inside the cells, even if a standard blood test says normal or even high levels. It's one of the reasons I like putting in on the skin, as the body will take what it needs more naturally than swallowing a supplement. I guess, if you apply the oil and it helps your dad, you've got your answer, and as far as I know, it's completely safe. It could mean other electrolytes are out of balance..maybe ask for sodium and potassium to be checked out?

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Thanks so much. We always watch his potassium carefully, because it tends to me high with heart meds he takes. High potassium can kill you I guess. Sodium, that probably is high, although we did get him to use mrs. dash instead of pouring the salt on his food like he has done for 70 odd years.

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My husband has CBD and in the beginning of his symptoms,2010 he used to get the same excruciating leg cramps.

It has been a long time since he suffered any of the same pains,(touch wood).

I think they just stopped happening , as apposed to any of the doctors/ consultants knowing what actually was causing the cramps and giving any medication for them.

I know how awfully painful they seemed and other than rubbing the leg until the pains stopped,there didn't seem much else I could do at the time.

I hope your dad, doesn't have to suffer too long with the cramps.

There is one thing,and that is, that my husband started taking Baclofen but stopped, as it didn't seem to give any help to him with CBD.

What have any of the doctors said to you about what may be causing the cramps?

Best wishes

DenB

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The neurologist seems to believe is is psp related and a contraction of the muscle cause by the brain something. We tried a very expensive botox injection that really didn't work at all. Neuro said botox and baclofen are the protocol and you can even go to a baclofen pump, but that requires a surgery and my Dad is totally against it. I guess this is used quite a bit for spinal injuries and ms. He does actually get relief from the baclofen. It is just so hard to dose, because too much will make him not know where he is and the cramps are not even during the day. More at night. My next move is to just give the baclofen regularly every 5 hours and see it that helps.

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Hi. My husband also has pain in his right leg which comes on after he has been in bed for a short time. I had thought it was connected with a fall he had a while ago but it is going on too long for that. He takes ibuprofen followed by paracetamol 2 hrs later and this lets him get off to sleep. I am hoping it is not yet another symptom connected with this dreadful CBD. Hope you get an answer.

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My dad takes Trazadone for sleep. Is Paracetamol similar?

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I use an eletronic circulation booster when the cramping gets bad this machne gives small electric currents to your legs thus disguising the electric currenrts that give you the cramps in the first place. I am not sure why it works but it d oes for me.

It was the best £60 i ever spent.

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My husband has had severe leg cramps for years. Long before PSP. Usually walking around resolves it, but that is getting increasingly impossible. So I am thrilled to hear about the magnesium oil, and will look for that. I would love to find the little machine that gives electric currents. Do you know what it is called or who makes it?

Thanks!

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It is called a circulation max just type it into your search engine and all the infocomes up . As I said befoe it actuually works for me.

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That's very interesting! My guy's cramps just stopped after about a year of intermittent trouble - don't know why - but I always fear their return and will keep this in mind. Thanks!

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My husband gets this too. When he does he takes a Tramadol but you have to be careful with them. Not even sure he should be on them?!

Marie_14

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Hi - my dad had terrible leg cramps - it was because his dosage of Sinemet (carbidopa/levadopa) was too high - if your patient is already on Sinemet I CANNOT STRESS THIS ENOUGH - DO NOT stop the medicine - my dad's neuro stopped it and he could not communicate or eat or drink anymore and became completely vegetative - we thought it was another stage of the disease - but when it was resumed (in very small doses) he started eating and drinking again - but he did not have the terrible leg cramps - please check with your neurologist - and again - BE VERY VERY CAREFUL with reducing the strength of Sinemet

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I have heard from other people that these cramps at some point go away? He has had them so long it is hard to believe. If the pain goes away does this mean that any walking is also gone?

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My husband had alot of leg pain to one leg and we tried cymbalta, lyrica and finally baclofen and gabapentin seemed to work best. We also did massages two and three times a week and that gave him alot of relief.

Good luck.

Nikkie

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Thanks Nikkie, I am doubtful weather the lyrica works at all. He takes it and not until be has the baclofen does he get relief. I worry about the side effects with this lyrica as well. Did it make your dad more depressed?

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The lyrica made my husband feel so dizzy and he didn't find relief. I never really saw my husband get depressed. I just saw him slow down and tired. We also did stem cell injections and I think that helped give him some relief but unfortunately my husband passed in his sleep in August (almost three months ago). The pain in the leg was probably the most difficult part of this whole disease. We could just not get to the root of what was causing the pain because all his test showed no injury. He would describe it as if it was a constant cramp pain. Good luck with your dad. This is an awful disease and no one should have to suffer like this. I know how tough it is to see your loved one suffer through this disease so hang in there and I will keep you all in my prayers.

Huge hug,

Nikkie

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Thanks for posting back. Very sorry about your husband's passing. At least he is out of pain now. It is no way to live. How long did he suffer with psp?

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We were told it was PD November 2011 and then PSP November 2015. Now that I look back, he probably had the disease before 2011. The mask face, long stares and the shuffling of the feet where noticed earlier. We always focused on the pain and figured the shuffling was linked to the leg/hip pain.

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