I'm so sorry to hear about your challenges, but at least you seem to have a good understanding of what's happening, given your PT background. In the year and half since my posting, I've made a couple of changes that have helped with the night spasms. First, no meds after 12:00 pm noon. It seems that taking anti-inflammatory meds in the evening worsened the problem. Second, I've changed from soft-sole shoes to hard-sole shoes. I wore the soft-sole shoes for years because of arthritis in my feet, but found that not only can I wear hard-sole shoes (Mephistos --- very expensive, but worth it), but when I do, my calf muscles are happier. I don't know why, but when I put on a pair of soft-sole shoes, I get minor cramps in my calves when I walk or climb stairs. Together these two changes have tremendously lessened the nighttime discomforts. I still have muscle twitching, but it isn't severe. I've also stopped taking prednisone because it made me confused and I'm still trying to take off the extra weight it causes. Best of luck with your issues and I sincerely hope that you find relief soon.
Hi Max, I was doing a search on Google, and it matched your ongoing saga.
Though I have not had any surgery (i am hoping to evade that as long as possible) I do have spondylolisthesis, which is slightly different than your diagnosis. Mine comes not from arthritic condistion, but a few acute, "ballistic" injuries - car crash, lifting a patient out of bed, etc - and then wear and tear from extreme sports through my 20's and early 30's.
My L4 and L5 "slip" forward pinching the nerves and the beginnings of "some" (osteo) arthritic narrowing is occuring between L5 and S1 according to my physiatrist (spine doc)
As i mentioned above i used to "be" a P.T., but had to change careers because I knew the wear and tear would only get worse. And so I have gone to P.T., a few times (x12 visits) in the last few years each time there is a flare up. These flare ups happen like 1x yr or so.
The interesting thing is that I get almost the same symptoms you are describing... Fasciculations (the sporadic uncontrollable muscle twitches), in the calf, quads, mostly the (lateral) higher calf on the outsides and the mid to lower inner thighs. It begins with the tiny fasciculations, then it builds into tightening and spasms, till then it can only be described as intense grabbing. I describe as if a huge condor has swooped from behind, wrapped itself across my lower back, and has grabbed onto my thighs and calfs with its enormous talons. It "nervy" and jumpy at first, and with each step increasingly worse, almost dropping me to my knees if i dont stop, stretch, (whimper) and then try to move again. Eventually it subsides (like a 1/2 mile of walking painfully) and then it is just "tight" and painfully "sore".
if the intense part is a 9-10/10, the soreness is like a 7-8/10.
It then basically moves to a recovery phase where what is leftover is basically a tightness across my back (no real pain "in" the back itself) and then in the legs and calf where I was feeling the spasms and pain I now feel "as if" I have the recovery day pains after doing squats. When I was younger and played football/etc... I would do power squats w/ heavy weights until exhaustion, and its that "soreness" that you feel the next day, you know?... that is exactly what it feels like after the spasms are gone.
I'm wondering... Is this slightly different than what you are feeling? I dont get them "at night", they can come at any time, like i said usually once or twice a year.
But my real question is in regards to the Prednisone x 5mg you take. Do you find any adverse effects? Do you get "Moonface"? Any worries about long term usage suppressing other symptoms that you may not want to mask - what have you been told to watch for? etc.. etc...
Any info would help.
I have all these symptoms and never had back problems! I injured calf muscle real bad 3 1/2 years ago. After several mris and other tests on every part of my body because of all the neuro symptoms, they finally just said I have RLS and BFS and probalbly a trapped nerve. Still very active at 52(raquetball, walk when I play golf) and coach soccer. But left leg is very weird. When I curl toes, I get a tremor. When I try and flex muscle it just goes into spasm. But all the symptons you people mention is what scares and concerns me and just can't get used to. Refuse to take drugs.
Sorry to hear about your prolonged difficulties! Spinal problems can take a long, long time to diagnose and treat. So, don't give up! There are many other kinds of meds that you can take to deal with the pain besides painkillers. Have you seen a pain specialist or neurologist? I found that the twiching and spasms are made much more severe if I take certain meds at night. I've eliminated all meds in the evening and I'm doing better at night most of the time. For example, I can't take anti-inflammatories before bedtime. I'm on permanent low-dose prenisone (5 mg) and that has been helpful with much of the pain, but have terrible spasms if I take it in the evening. By eliminating all meds in the evening, really bad night spasms are infrequent and ususally associated with my back tightening up. I still have chronic low-grade twitching and mild spasms at night, and I might just have to stand for a minute or so until they pass, but at least I'm not falling over or pacing the floor all night. Good luck!
Update: My leg is still twitching 24/7, but I am doing so much better. I just passed the 4 year anniversary of the back surgery that caused the dreaded twitching. When I look back:
1. It really helped to keep may calf stretched at night. I had less cramping and started to sleep better. My leg was less tight during the day too.
2. Next I very gradually increased my activity. As I have gotten stronger the twitching has decreased, and I can do more before my leg "goes wild".
One exercise in particular seemed to really help. Two years ago a physical therapist had me lay on the floor, on my front side with a pillow under my hips. I stabilized my spine by squeezing my glutes and abs. Next, I bent my knee and raised my lower leg. The first one sent my leg into a spasm. She told me to keep trying. The more I thought about it, the more I realized I couldn't live a normal life with such a weak leg. It took me a few months to be able to do 20 reps. Next I did two set of 20. Then I added a 1 lb weight to my ankle and did as many as I could. It was a balance of increasing reps without aggravating my leg too much. It has taken 2 years and I am up to 9 lbs. I can't believe how long it has taken to build up strength, but it has really helped. This exercise has changed my life. I can ride my bike 10 miles at a time and am taking a reform Pilate's class. Even though I am more active, my leg twitches less.
You are all in my thoughts. I hope this helps.
I’m glad to hear that there are others like me. I thought I was the only one with this twitching issue. I had back surgery over 8 years ago to remove a herniated disk. For fifteen years prior to the surgery, I was in constant pain. The surgery was a God-send and I’m please to say that I don’t have the pain anymore. However, I do have a constant twitching since some time after the surgery. I’m talking 24 hours a day, 7 days a week, 365 days a year. It is nonstop. Sometimes it’s worse than others. Exercising makes it more active. Sometimes at night my leg will cramp. My foot points straight out and it all locks up. I have to jump out of bed to put weight on it to break it loose. The weird thing is that the twitching is in my left calf only. No where else. My family doctor has given me medicines for restless leg syndrome but no help. I’ve tried calcium, potassium, Iron and anything else that I could find that I may be deficient in. I asked my family doctor if it could be related to my back surgery, he said no, it’s just something that happens. Sorry, Doc, wrong answer. I have decided that I’m going to go to a neurologist. With today’s knowledge, technological advancements, there has to be a way to turn it off.
God bless. I hope we all find the answer.