Leg and Foot Cramping and Pain
Many individuals with Myasthenia gravis report having intensive leg/foot cramps and pain, most specifying this occurring predominately at night.
Do you experience leg pain? Describe the sensation, and if you note the treatments you are on, that would be great. Pyridostigmine is associated with cramping. But from personal experience, I believed this to cause my leg pain until I stopped mestinon, which has continued. I am sure many of you are the same way.
I look forward to seeing any trends we may note with our community here and our lower body cramps experiences.
Feel free to share any advice you have found for relief 😀
- Jodi, Team Member
Recently it started for my, in my left foot going up to my knee.
It goes on for hours of aches, I don't know how to get rid of it, I've tried massaging it, walking, nothing seems to work.Hello there! It's been some time since we've heard from you. I noticed in another post that you mentioned the challenges you've been facing with finding a treatment that works for you. I'm curious about which treatments you have tried so far and if you have seen any improvement while on certain ones or a specific combination. Do you know which MG antibody you have (Acetylcholine receptor [AChR], Muscle-specific tyrosine kinase [MuSK], Low-density lipoprotein receptor-related protein 4 [LRP4]) or if you are seronegative (https://myasthenia-gravis.com/blood-tests)? For advice on foot/leg cramps, I recommend the following article: https://myasthenia-gravis.com/living/leg-cramps-night.
Jodi, Team Member
More of a constant ache, especially when active about 5 to 10 minutes.
Hi
do you find anything provides you with some relief, even temporarily? I hope so. I also see you recently joined our community and wanted to take this opportunity to welcome you! I hope you find our community to be a great support. Please don't hesitate to reach out if we can ever help locate any MG related info or simply provide a listening ear. Kindly, Jessica (Team Member) Hello there! We're thrilled to have you join our community 😀 I would love to learn more about your journey with MG. How long ago were you diagnosed?
Jodi, Team Member
Ugh, yes! Of all the issues associated with MG, at the moment leg cramping is the worst. I had cramps at night before I was diagnosed, but they got crazy worse once I started taking mestinon.
Some nights one or both feet and ankles cramp and others, my thighs, calves and feet are in total spasm mode. Before mestinon, drinking Calm (a magnesium based drink) and rubbing alcohol rubbed on the spasming muscles did the trick. I stopped drinking Calm because my neurologist said magnesium are detrimental to MG. Rubbing alcohol no longer works. Ive tried massaging and stretching my muscles before bed with little results. Last night I used cbd ointment on the spasming muscles and it seemed to have worked.
Out of curiosity, has anyone experienced muscle ripples? Sometimes I'll try and keep my legs and feet in a relaxed position and the calf muscles will ripple without spasming. It doesn't hurt, but it is very bizarre. The ripples are so intense that they seem to punch the blankets on my legs. I'd gladly ripple every day if it means my muscles won't spasm.
There have been nights when I don't have muscle spasms. I'm keeping a journal of anything that was different so maybe I can repeat the no musle spasm nights. I have noticed I experience less cramps on the weekends which is probably because I rest a bit more and am more relaxed. However, short of retiring, that is not practical. A few weekends ago, we spent the day at the mall for my grandson's birthday. I thought for sure my muscles would give me fits after all the walking but they didn't. The differences?: a lot more walking, taking extra mestinon, drinking a B vitamin energy drink and an afternoon coffee, and joy of seeing my grandkids. The only thing I can't repeat daily is seeing my grandkids. May this be the key? I don't know.thank you for all the great information. This seems like a wonderful community and I'm happy to be a part of it. Interesting about Rippling Muscle Disease. I will see a Neuromuscular specialist for the 1st time at the end of this month and I will bring this up.
Interesting about the rubs you mentioned m. My CBD ointment has peppermint, calendula, comfrey, St. John's and wintergreen. It's my own blend that I made for my husband when he was having back pain and I've used for various aches and pains for a few years now. (One of my retirement goals... to get more into making herbal products.)
Also interesting about supportive shoes. My go to shoe has been a flat bootie. My spasms are worse when I wear anything with a heel or flip flops.
I've always loved creating art with bright colors and Happy themes including sons, flowers, pets, etc. I've recently been dabbling in the paint pour technique creating abstract paintings by pouring layers of very thin paint and moving it around bt tipping the canvas, using a hair dryer or other fun experiments. With my lack of energy, this works because it's quick. I've embellished some with stencil images and art markers. I can embellish at my leisure, often while relaxing in my easy chair.
I think what I'm trying to figure out right now us if I should retire. I am 62. My plan was to retire at 67. Prior to diagnosis, I thought my exhaustion was due to a bad working environment so I changed jobs because I want to retire on my own terms and not driven out by an unreasonable disrespectful boss. I'm still of the mind of wanting to retire on my own terms and not let the disease define me. While I am in a great work environment now and on meds that are helping, I'm still exhausted by the end of the week. Maybe this will improve as I figure out what works and what doesn't.
Thank you for this group!As you are considering retirement, I recommend the following article: https://myasthenia-gravis.com/living/offices-for-aging-services.
-Jodi, Team Member
Occasionally.
Hi
how have you been doing with the pain and cramping lately? Do you find anything provides you with relief when it occurs? I hope so. Please know we're here anytime. Kindly, Jessica (Team Member)
