Very Severe Cramps

[mpnatx]

I know this has been discussed many times and I have always had cramping in my legs, feet, hands etc. But just recently, I've had the most severe cramps on the muscle in my left leg on the outside of my shin from my knee into my foot.
My foot locks up and the pain is unbearable. A 10 on the pain scale. Lasts for hours till I can finally stretch it out. Even makes me nauseous. Then it comes back. I usually handle pain better than most, but this is just the worst I've experienced. I actually lay there moaning and that's not me.
I've tried Baclofen and can't tolerate it. Tried quinine and coconut oil. Nothing works.
I have an appointment with my local neurologist tomorrow. Does anyone take pain medication for this? I'm wondering if it would bring relief even temporarily.
I don't like taking pain medication, but for this, I would.
Marty

 

[affected]

Have you noticed anything brings the cramping on - like doing something beforehand?

Do you lay and put up with it or has your CALS tried applying heat or any stretching?

It sounds so awful, Chris had cramping and pain but not quite like this.

Low dose morphine will help the pain and may help relax a little, but I would rather your neurologist has a good look and advises. I would rather find a way to release the cramp than have to take something, but hours of pain that high needs whatever will work!

 

[Nikki J]

I agree with Tillie whatever works! So sorry. Are you having cramps like a charley horse orpainful spasticity?
For the former on top of whatever the neuro offers you did not mention magnesium ( which works for my much milder cramps) and or pickle juice or mustard? There is biochemical evidence for the latter. Cthere is some common chemical in them that thry are trying to make into a medication.
And finally if it is cramps ask about mexilitine. Mexilitine is a heart medication which was trialled for slowing progression and failed that but had a secondary effect of reducing cramps. Is this neuro an ALS doctor? If not you will probably have to educate them on the study. If you are having severe cramps and have no contraindication to it worth a try

 

[Nikki J]

Here is one link. ALS: Mexiletine Helped Muscle Cramps But Did Not Show Other Benefits | MDA/ALS Newsmagazine

 

[hjlindley]

Tizanidine helped my severe muscle spasms. You might tolerate it better than baclofen.. Just be aware that caffeine releases it all at once and will knock you out. Good luck!
Hollister

 

[ShiftKicker]

Hollister, I had no idea Tizanidine was affected by caffeine. Thank you for posting that. In an emergency, I think I would use that to bring immediate relief for severe unexpected spasticity.
Marty, I had terrible cramping before anything else. My issues appear to be UMN only, but I can definitely tell you what worked for me. Baclofen, by the way, seemed to increase the intensity of spasticity and cramping for me.
What helped me:
Quinine and liquid magnesium supplements daily.
An Aleve mid day.
Tizanidine (2-4mg), high CBD cannabis oil orally (start w/a very small amount), Benadryl before bed

My sleep is no longer interruped with cramping and spasticity due to the above. Cannabis is cumulative in effect and, although I feel like a shady pusher, I can not recommend it enough.

 

[ShiftKicker]

Post went to mod- sorry! No idea what word set it off.

 

[Nikki J]

It was the word after magnesium

 

[anderkling]

When you're having breakthrough pain like that, sometimes only a narcotic will bring relief. I take Percocet, and this helps tremendously. Like you, I don't like taking painkillers, have never before, but all the medical professionals in my life are adamant that narcotics to treat severe pain in a terminal illness are appropriate and often necessary. The pain in my left leg and foot is often acute, and a strong painkiller combined with gentle massage brings relief. You shouldn't have to suffer like this for hours on end.
Charlene

 

[mpnatx]

Thank you everyone. I just got home from the neurologist. This is the neurologist that first diagnosed me. I see him every six months and see the specialist at clinic every four months. My next clinic is early January.
This Dr. told me to take potassium and tonic water and see if this helps. If not, he told me to call him in a week.
I can't see this alleviating the severe pain, but I'll give it a try. In the next few days, I'm going to call the specialist and see what she can do about this.
I get the feeling that they try everything before they will give real pain medication. Quality of life is going down. Why wouldn't they want to help make it better with time we have left? Just don't get it.
Marty

 

[Nikki J]

If these are really true cramps and you do not have a medical contraindication ask about mexilitine. Apparently in the trial to slow progression when they were not looking at cramps the patients reported such improvement they analyzed the data for it and are doing another study looking at it. If you are ok to take it it is generic and your insurance will almost certainly fill a prescription with no hassle

 

[affected]

Take charge of it Marty.

Narcotics are great palliative medications, but there are a few really good other solutions here that I would try in the meantime. Sure take what your neuro suggests, but there have been some great other suggestions here.

Document carefully what you decide to try and don't try everything at once. It makes it harder to know what is working, or what is giving you an effect you don't like.

I really hope you get something happening fast, as no one should have this level of pain.

 

[rogeriopaguilar]

I drink a lot of tonic water everyday and the cramp goes away but you have to drink a lot of it.

 

[BK2011]

Marty,

My experience is that the tonic water (the quinine in the tonic water) doesn't help immediately; as in you can't have a cramp, drink tonic water and the cramp goes away. It was more a maintenance thing. At first I was having severe, painful leg cramps several times a night. I started drinking tonic water and built up to a liter per day and the cramps went away for the most part. If I walked a lot or spent most of the day on my feet the cramps would occur again. Once I got them more or less under control I started backing off on the tonic water until I was only drinking 1/2 liter then back to 16 oz. When I would stop drinking it the cramps would show up again with a vengeance. It would take a couple days drinking the stuff to stop the cramps again. Fortunately, my local market sells the stuff for .99 per liter and frequently has a buy-one-get-one-free sale regularly and I stock up. Sorry but the stuff tastes lousy.

Bill

 

[affected]

Add some gin and a squeeze of lemon or lime? OK maybe not gin every time in the middle of the day, but some flavouring may help?