Severe Cramping of Leg Muscles & Feet

[lenora]

I never did reply to you. My apologies. Yes, I used to use Mg. a lot...and it helped. I agree that most of us are low in the this very important mineral and I try to keep it properly balanced with calacium and the others. If it isn't TOO MUCH TROUBLE, yes I would appreciate it if you could go through your old records & let me know what your Dr. had to say. My Dr.'s are all over the place with opiniions, so I don't think it matters. Besides, I'll know immediately if it isn't working. I cramp up immediately and when it's too much or too little of something, my hands and fingers now cramp up. I'll hope for the best.

I do have one of my old doctors who is keeping a pretty close eye on me. Because he cares, no other reason. I do wish I could find another like him....but I'm afraid those days are gone. Either that or that type of doctor works overseas. Nevertheless, I'm staggered at the amount of work, time and effort they put into their patients. How did I get off into that tangent? Sorry.

I was kind of you to offer your help and I do appreciate it. Even now my legs are hurting...at least the l. one. I have medication that works, but I don't want to use it unless near bedtime. Thanks again for your very kind offer. Yours,, Lenora.

Hi @Zebra .....I just wanted to get back to you and let you know that I have found a good brand of mg. that is helping, as well as a few other things that I had been taking.

I do know what's causing it, but at this point I have no way of preventing it. Antihistamines don't seem to agree with my body....I can't say that I like taking them, but have no choice with the allergies I have. One other bothersome thing, and one of the side-effects, apparently a well known one even, is what the side-effects show. I now also take a Parkinson's drug, pramipexole, that is the only one that has ever helped. I only take it when I figure out if it will be needed at night. Thanks for your kindness in offering to do so much. It's appreciated. Yours, Lenora.

 

[lenora]

Hello @Mick.....Thanks for your kind offer and for keeping my condition in mind. My neurologist, after exhausting everything else, finally started me on Prampexole, a drug for Parkinson's, and it works very well. I don't take it on the days I think I don't need it. It works very well....the first thing that has. I also take plenty of MG and the cousins that are closest to it.

How are you doing, and what did you find that worked. I see they ran an article from The People's Pharmacy about mustard (plain old French's) or even dill pickle juice, and now they're finding that things like curcumin and something else (I forgot) also help. Maybe I'm wrong, but the mustard didn't work for me....I wish that it had.

As you know, there isn't much you wouldn't do to get rid of them when they start. I hope you've had similar luck....I just became exhausted and finally asked him about something else. It works, that for certain. l keep falling asleep, but I guess you may have noticed! Thanks again @ Mick. Yours, Lenora.

 

[Mick]

Hello @Mick.....Thanks for your kind offer and for keeping my condition in mind. My neurologist, after exhausting everything else, finally started me on Prampexole, a drug for Parkinson's, and it works very well. I don't take it on the days I think I don't need it. It works very well....the first thing that has. I also take plenty of MG and the cousins that are closest to it.

How are you doing, and what did you find that worked. I see they ran an article from The People's Pharmacy about mustard (plain old French's) or even dill pickle juice, and now they're finding that things like curcumin and something else (I forgot) also help. Maybe I'm wrong, but the mustard didn't work for me....I wish that it had.

As you know, there isn't much you wouldn't do to get rid of them when they start. I hope you've had similar luck....I just became exhausted and finally asked him about something else. It works, that for certain. l keep falling asleep, but I guess you may have noticed! Thanks again @ Mick. Yours, Lenora.

So, I assume your neuro assumes that your cramps are of central origin (ie. caused by the brain and nerves firing too much). But in order to state that, you'd have to have an EMG. Have you had one? I've had one and it confirmed at least that my cramps (or rather myotonia) is not of central origin. Otherwise, it didn't confirm much. Because of different strange coincidences. Now that I found what these coincidences are and how to avoid them during EMG exam - we have a coronavirus and basically the hospital is shut down. That's why I'm actually looking for answers here.

Btw. From wikipedia, Pramipexole:
Several unusual adverse effects of pramipexole (and related D3-preferring dopamine agonist medications such as ropinirole) may include compulsive gambling
Huh? Compulsive gambling? That's something new

Anyway...
My cramps are caused by myotonia or another muscle disease.
Through years of experimentation I figured that the things that work for me best are the things that are used to treat myotonia.
These are: magnesium, calcium, sodium, taurine, decreasing potassium intake.
These work but not every time and so it is easy for my muscles to turn into a painful mess with severe DOMS.
Also, for some time resveratrol used to inhibit all the symptoms but then it stopped...

So, that's the story...
It's good that they found something that works for you... it's like a miracle... considering how long it may take for other people to find a solution...

 

[lenora]

Hi @Mick.....No, I haven't had any tests, however I've been seeing this neurologist for about 35 years now, and he knows the other syndromes (heaven forbid anything I have should be out and out called a disease!), and I've had the muscle cramps for many, many years. We've pretty well tried everything even spinal taps (2 recently for something else), and yes the things you're taking are what I am, also. I'm hoping to move over to them instead of the prescription. In the meantime, the one ordered by him is keeping me sane, at the very least.

I do have to be careful of how I balance things like sodium and potassium b/c too little of them can result in something called Autoimmune Encephalitis, resulting in seizures, the latest of which caused me to spend two days of being unconscious in ICU. This was due to restricting my sodium too much (b/c another Dr. told me to due to high blood pressure), so I have to be careful of potassium also. So be watchful of those two things yourself.

Yes, I know, it's a good thing that I'm not compulsive about anything except cleanliness. I would hate to gamble away the family fortune at this age!! Now that they have a name for your problem, I hope there will always be something there to help you. Take care of yourself. Yours Lenora.

 

[Wishful]

Huh? Compulsive gambling? That's something new

No, I expect it's as old as humans. Maybe even older.

 

[Mick]

They allegedly have a name... it's not that easy with them... because I have so many other symptoms they suspect that it must be some kind of dystrophy with myotonia and so th

But something else came up in the meantime, just seconds ago that bothers me really often and there, it struck me again.

Beside cramps I often get severe DOMS. It usually goes like this: exercise, rest, cramps and DOMS.
But I am much more prone to DOMS when I eat something that I am sensitive to. Like peppers - these simply burn my muscles (probably due to gut leakage this burning substance from peppers can be absorbed into the bloodstream and act directly on muscle tissue). So I avoid peppers (paprika) and black pepper as these cause me the same pain. This was confirmed many times. And so it was confirmed that also tomatoes cause this.

So I went to buy groceries and bought me frozen pizza, and of course I see tomato sauce on the ingredient list. Bingo. So this needs to be eliminated. Especially that oregano is also quite suspected of causing issues.
So now the problem is: what am I supposed to eat?

I can't eat potatoes and many vegetables - too much potassium, I can't eat pizza and many other things because there is always something that will make me suffer.

But it's great that I figured it out because today I kind of hit the botton but it seems that it always comes down to the very same thing over and over again but in different flavours (ie. inflammation caused by food).

It is also a funny thing because noone seems to be able to explain what that sensitivity really is. Is it allergy or inflammation or whatever it may be... at first I only felt it clearly in my joints but now it clearly also affects muscles (and I can confirm that by eating small amounts of paprika 3 days in a row - I will suffer at least for a week after that) - that's how profound this inflammation is. I'm beginning to suspect that even my myotonia may be caused by this inflammation (many years of it) as now my muscles are very very fragile and react badly almost to anything.

So, it's another way of treatment for me - getting rid of offending foods.
The problem is that there is no anti-inflammatory that would be able to help.
To support this theory: I tried resveratrol once (high doses) and it completely stopped my symptoms. DOMS as well as myotonia. So that would confirm this theory. But it only took a week before I inadvertently got so inflamed that even resveratrol couldn't help, and since then, even though the pro-inflammatory conditions were removed, resveratrol doesn't work for me anymore.

So, yeah, maybe it's a long shot, but if you want to try something try high-dose resveratrol... of course start with small doses then escalate...

 

[Wishful]

It is also a funny thing because noone seems to be able to explain what that sensitivity really is.

Sensitivities are hard to figure out. Standard type I allergies are fairly simple, and there are tests, treatments, and techniques available. Type IV sensitivities (t-cell) may not be more complex, but there are no tests or treatments for it. Then there are certain chemicals that cause other types of reactions: toxins such as solanine or tomatine, goitrogens, hormone mimics, and all other sorts of things. Foods, or chemicals, can also alter the gut microbiome, which can cause indirect effects. Aside from some simple, well-understood sensitivities, I expect that most doctors will be of no use, because solving such problems can be very time-consuming. It's up to us to identify what is the trigger, and to find some way to counter it if possible, or just add it to our lists of things to avoid.

 

[Mick]

I expect that most doctors will be of no use, because solving such problems can be very time-consuming. It's up to us to identify what is the trigger, and to find some way to counter it if possible, or just add it to our lists of things to avoid.

Well said but easier said than done. Can you recommend some resources that might help with that or maybe a thread here? What to do and maybe what drugs to take?

Speaking of drugs... Tomorrow I will try Diphenhydramine (Benadryl). Will take it before sleep as it is an anti-allergic drug and it's strong and suited for this purpose but it makes me sleep - as all of other antihistamine drugs do. I will take if for a few days and see what happens.

 

[lenora]

Hi Mick....I don't know why our messages aren't getting through but I'll leave that one for the wizards to figure out. First time it has ever happened to me, as far as I can remember.

Let me warn you that antihistamines do work for sleep but can lead to leg cramps...bad ones. That's one of the reasons I severely limit them to when I really need them for allergies only. If not, I don't think I'd get any sleep at all. It's such a pest, it really is.

Now the pramipexole is the best thing I've found, but I suppose most neurologists would give it as a last resort drug only. I can generally tell earlier in the afternoon if I'm going to have problems, and will take one then. I try to limit them to 2/day, can go to as many as 4, but I'd really like to hold off as much as possible. I'll definitely be needing antihistamines just to breathe in the upcoming mos. I then get to pay for them over the next few.

Anway, all I can do is suggest that you can try Benadryl. You may be one of the lucky ones...oh, to lessen the load, I take l/2 tablet at a time, so that may be something to try first. Good luck. Yours Lenora.

 

[Mick]

Actually, I don't know what dose would 1/2 tablet be (in your case) but I was advised to take 5 mg the first time in order not to get drowsy. I don't know if I should repeat this many times a day - multiple doses might work better but also could make me more drowsy.

I'll definitely be needing antihistamines just to breathe in the upcoming mos.

If you have allergies you should take quercetin... sometimes it completely inhibits symptoms.

 

[Wishful]

Well said but easier said than done. Can you recommend some resources that might help with that or maybe a thread here? What to do and maybe what drugs to take?

Sorry, I'm not an expert on cramps or joint pains, since I haven't had them. The subforums on symptoms and treatments might have something useful for you. My main suggestion is to keep a good food/activity/symptoms journal and practice paying attention to changes in your symptoms. Human memory is too fallible for this. I've found some things to avoid by searching back in my journal. The journal allows you to verify that when you write down "very brainfoggy", it's usually preceded by "...and potatoes" or some such thing.

I've tried lots of things that, according to some theory, should have reduced my symptoms. Instead, they did nothing or made my symptoms worse. I no longer get all that excited about such theories. The things that worked best for me were usually accidental discoveries, of things that were already in my kitchen. I'd notice that I felt better than expected one day, so I'd check my journal to see what might have been responsible. Sometimes it would remain a mystery, but sometimes I'd find something that would work repeatedly. Of course, with ME, most of those only worked a few times and then stopped working, but a few times I found something that worked reliably for longer.

I'm also less of a fan of actual pharmaceuticals. None are designed for ME, so there's no reason to expect that they will work for ME. LDN did block my neuropathic pain very well, but that's the only pharmaceutical that did work well for me. A couple of commercial supplements (T2 and carnitine) worked well for a while, but others were useless. One herb (cumin) worked really, really well, blocking and then curing my PEM. Some other herbs had minor beneficial effects, but they only worked for a few days or weeks, then stopped working.

Herbs and supplements with claims for being good for cramps or joint pains probably have a slightly higher probability of working for you than herbs and supplements chosen at random from a health products catalogue, but I wouldn't consider them to be high probabilities. Unless you can figure out why you get certain symptoms, you can't know which theories to apply, so there's not much point in trying expensive or high chance of side-effects products first. Some of the cheap herbs, foods, and supplements have a chance of being something that will help you, so you can give them a try. You've learned to avoid certain herbs spices, but there are plenty of others you could try. If your kitchen is a bit sparse, you could ask a friend or neighbour for small amounts to experiment with. Maybe you'll get lucky and find someone who will actively participate, thinking of you when they buy some unusual foodstuff, and offer you a bit. Maybe some uncommon Gualtemalan fruit or Vietnamese condiment will be an amazing treatment for your symptoms. I would never have guessed that cumin would be an amazing treatment for my PEM. I still don't have a theory for why it worked.

Benadryl just made me groggy, but didn't help me fall asleep. Horrid stuff (for me)!

Elderberries were a surprise discovery for making my symptoms worse. It's an immunostimulant, so I suppose it was supercharging my immune system, and since immune system activity seems to cause most of my ME symptoms, it's something to avoid. However, if you really want to test whether immune system stimulation makes your symptoms worse, give it a try. Most of the immunosuppressants I tried had no effect, but I think that's because they didn't work on the brain's immune systems, or my baseline severity is with the body's immune system relatively quiescent, so suppressing it further wouldn't help.

I believe that for most of us, there are are treatments that can be found. The problem is in finding them. Think of those individuals who spend their lives wandering around in tropical rainforests, hoping to find the basis for a new antibiotic or other pharmaceutical. Is it in this leaf, or that tiny patch of mold on that specific species of beetle, or the root of that drab-looking plant?

 

[Judee]

Have you tried quinine water? Some people online swear by it for leg cramps.

We used to use a homeopathic medicine which also contained this ingredient. Those pills were wonderfully relaxing but we had to stop because we figured out they have lactose (milk sugar) in them and we are sensitive.

The amount in the water is not that much but still be careful to check with your doctors and pharmacists before trying. And of course, you'll have to deduct that from your total water intake as well.

If you try it I would look for the sugar free versions. Zevia has one as well as well as a company called Spectacular.