@allisonsnow Hi Allison,

I am so sorry to hear of the cramps and that feeling that things are locking-up. I would encourage you to tell your doc that you want physical therapy. There are certain stretches you can do which will give you some relief from this (won't cure it completely). I also have the tightening of the muscle, tingling and locking-up feeling (from a Parkinson disorder) and I've been told by PTs that the stretches must be held for 30 seconds in order to get relief.

You sometimes have to push for the treatment that you need. I hope that you find some help for this.

Teresa

I used to have severe leg cramps, but when on a medical mission where we ate Avocados daily, I suddenly realized I had none. I now be sure I have calcium with magnesium and potassium supplements as well as avocados and bananas regularly in my diet. the only time I have leg cramps now is if I forget to do any of these. I hope this might be a simple fix for you - at least it is worth a try.

@allisonsnow Hi! I also hot my PN from chemo. I had 12 rounds of 2 kinds of chemo that cause it a d ended up in pretty bad shspe. Poor balance, falling, unable to write decent or play piano, open jars or cans, put pins in my hair etc. That was almost 2 years ago and Im grateful to not have cancer now and its much better but still numb and tingly from knees down and hands. Worse with use, other wise feel kind of dead. Thankful I have not had much pain but have had some stinging in my hands. I also have had cramps in my feet, especially during water aerobics. I love the water aerobics because I dont notice my neuropathy in the water. I take Cymbalta, Alpha Lipoic Acid and B6.

@coloncasurvivoran I was diagnosed with idiopathic peripheral neuropathy. There's some debate from neurologists I've seen that it might be small fiber sensory neuropathy, and that's what I think it is. Mine is primarily in my feet and calves, and I've had it for 24 years. I do have numbness and tingling once in awhile in my hands, something I had in my early thirties. Then, it went away when I stopped practicing the piano so much (I was in school then and playing a lot of Rachmaninoff). Now it's back, but only occasionally. Anyhow, did your doctor tell you that too much B6 can be toxic? I was recently also taking a B supplement, and when my doctor did a blood test, it came back with a very high B6 level. I stopped taking the supplement. I hope the alpha lipoic acid is helping you. I took it for about a year, but it didn't do a thing for me. I've been able to cut my gabapentin dosage in half, primarly due to physical therapy and the exercises I do every day. As long as I pace myself with exercise, walking, etc., so far I've been free of the awful cramping in my feet and legs. My right hand also cramps sometimes, but the pain is nowhere near the level I had in my feet and legs.

I'm sure everyone would like me to be brief..so here goes 25+ yrs or progressively more painful leg cramps toes to buttocks. A great night 5, bad night 30 + and up all night walking, crying ,falling, breaking bones, Have had doctors think it was AlS, Isaacs, fibromyalgia, NMO etc. I have taken antiseizures, anti anxieties, muscle relaxers, lyrica, nueronton, tonic water, pickle juice, drank gallons, taken magnesium, calcium, potassium, ate bananas.(in different combos) Slept with soap shavings under sheets , wore sneakers to sleep so toes wouldn't droop and drank vinegar, as well as spinal steroidal injections and the list goes on. One important other fact is father had them starting in early 30s died of brain cancer in 50s, only sibling a brother also had them but passed at 45 so don't believe theirs got this advanced. I am 57 and female. Are there any others out there like me.?

@debupallnight Have you tried physical therapy? I had awful cramps in my feet and legs and physical therapy helped me tremendously. I still get mild cramps occasionally but I can usually deal with them by massage or just walking them off.

Yes, I did 5 months of PT. Also anodyne electrical therapy. Neither made significant difference. Hot weather always makes neuropathy worse soak feel in cool water while I watch tv. Use lidocaine roll on for bottom of feet. That helps the most.

Hello @debupallnight -- Welcome to Connect. You certainly have a lot on your plate and it sounds like you've tried a lot of different things to treat them. Did you see a neurologist or specialist for a diagnosis? I was just wondering if you had any tests that point to a diagnosis or if it's just what the doctors thought it was due to your symptoms. I have idiopathic small fiber PN but I only have the numbness and no pain.

Keep asking questions. You are definitely your best advocate. I'm a firm believer in there is an answer out there somewhere for all of us but we just have to keep asking questions and trying to find it.

John

Yes, I was diagnosed by a neurologist after other atttempts, RA, lupus, ALS, etc. an intrinsic factor blood test proved PErnicious Anemia. This was done only after I took in material about PA from Mayo websites!! I am currently seeking appointment at Mayo in Minnesota to find about help for symptoms....tachycardia, spinal cord stenosis, physical and mental awkwardness, etc. thanks for asking!!

Yes I've had physical therapy seen chiropractor s.