Both legs sore during day and spasm during sleep. Muscle twitching.

Posted by dnp2335 @dnp2335, Mar 4, 2023

I’m on 7 weeks of the weirdest symptoms. I’ve been to my primary Dr, sports med Dr, Sleep Dr and Neuro-muscular neurologist. None have seen this before. Sleep Dr ruled out RLS. This issue is only when I sleep so it’s not induced by body position. Once I fall asleep, I wake up every 1.5-2.0 hours every night. I haven’t had one night making it 3 straight hours. When I wake up, my upper legs feel tight deep inside the legs and when I straighten them they spasm and the inner cramp releases and I can go right back to sleep. This pattern continues night after night.
I’ve tried everything, epsom salt baths, quinine, thc, CBD, prescription muscle relaxers, warm baths, stretching, foam roller, heat pad, ice, Gabapentin, every sleeping position possible…you name it and I’ve tried it. Has anyone heard of this before and have any suggestions that I can ask the neurologist about on?

I’ve also had sporadic muscle twitching since last March, 2022 but don’t have any muscle weakness. Thank you for any help. My legs are pretty sore throughout the day and if I sit at my office desk for 1/2 hour, when I stand up the hamstrings are so tight and hurt. Neuro thinking most likely a neurological issue but ordered blood tests and a thoracic spine MRI. They feel the brain, lumbar and cevical spine MRI’s look good and do not point to a physical issue being the cause to this. Thank you for any help.

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@wendyhobbie

Thank you. It is very frustrating at times. I have written down these suggestions and will check my supplements but pretty sure that my acupuncturist started me on both glycinates
My new neurosurgeon is putting me on a series of prednisone pills to help with inflammation throughout my body. Couldn’t hurt…

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I was on prednisone for 12 years for rheumatoid arthritis. Lucky I don't have diabetes from it. Didn't help with leg spasms. Took me from March 2022 to January 2023 to get off and finally a close to normal cortisol reading showing my adrenal glands waking up. Just be aware the steroid carousel is tough to get off if on too long. Also I had an error in my previous post in that I had 90% fewer spasm episodes.

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@bonniethompson1234

Hi, I find that if I wait an hour after taking my evening dose of gabapentin, all I need is one extra strength Tylenol to help me sleep. Two Tylenol is like a sleeping pill and I can actually sleep through the usual bathroom trip during the night.

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@bonniethompson1234 Same here! Tylenol works the same for me.

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@patriciajean

@bonniethompson1234 Same here! Tylenol works the same for me.

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I would take Tylenol for my nighttime pain, but find that I can’t fall asleep without it now. 😊

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@lengel

Have you tried magnesium glycinate? This particular form of magnesium at bedtime has helped me with muscle tightness and also promotes calmness at bedtime.

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I will look into this. Thank you.

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Still searching…my 3rd sleep study showed that if I sleep on my side I don’t have sleep apnea but I have RLS all the time…pramipexole has too many side effects. I’m checking into baclofen because I’m always tired but can only sleep 6 or 7 hours a night. Not very confident in my neurological surgeon but MRI does show that my spine needs decompression…bulging and protruding disc’s and arthritis

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@wendyhobbie

I’m 68, 5’2 and 115 lbs. Taking 600 ml of Gabapentine 3 x a day. And yet have the tightness in calves and neuropathy pain. Sleep test for third time shows RLS. All I can hope for is temporary relief after yoga stretches, positions which are held with deep slow breaths. And a muscle relaxant in the evening then Ambian to sleep. But I’m always looking for better alternatives…

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Do you drink coffee. And enough water Are you dehydrayed

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Magnesium will help some it’s hard to say I would get a full spectrum blood panel done being low on testosterone and b-12 can make you feel I’ll and twitch body aches stomach quezze etc . just very low energy and right down not feel good wether your male or female we all have testosterone and when we get older it’s drops significantly that’s when the aging comes on , weight gain , wrinkles thinner skin the list goes on . The endocrinologist will be able to see what your lacking and recommend a plan best thing that ever happen to me and I have spinal Arachnoiditis I’m 52 male my pain never shuts off a 9 - 10 all the time
and low dose b-12 injections gives you energy a well just go check it out for yourself your mind and soul will thank you for it . Also it’s good to give blood if you can it replenishes … more oxygen etc . I’ve gave blood for decades all these meds we take , foods, giving blood is like a reboot to your system .

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My issues are similar, but began suddenly with a collapse and knees and hips would not hold me upright. My initial problems were both legs were spasming or cramping any time I laid down (RLS times 20!) very loose joints, right side of my body is numb from the toes to armpit, left hand was numb, left hand and leg were slightly not as strong as the right side. I can move everything, thank heavens!
I was in the hospital 10 days, full body MRI, repeat (more slices) brain and cervical spine MRI. I received 5 infusions of steroid and 5 IVIG infusions; receiving meds gabapentin, robaxin, tramadol, 6 mg tizanidine, benadryl (for sleep), 10 mg melatonin, 1000 mg NAC. All meds were not given at the same time, but they finally got the meds correct, and I actually slept a couple nights before going to rehab for 5 weeks. Then that medication mess started all over again, till finally I was taking 600 mg gabapentin, 2/day, and then 1200 mg gabapentin at bedtime, along with flexeril, tylenol PM (or benadryl), and doxylamine. Finally got the leg spasms to stop long enough to sleep 6 hours! Yay! My first out-of-hospital neurologist had all the records and said it's transverse myelitis (both sides of the body affected because the myelin around the spinal cord suffered an "attack" of some sort). When I left the hospital the only improvement is that the left hand is not as numb.
I was referred to a neurology specialty group at University of Texas, San Antonio, for a second opinion, met with a doctor who talked about MS, "cousins" of MS like MOG, NOSD. Her diagnosis was transverse myelopathy (both sides of the body, but now there is some condition of the myelin causing a problem, like the immune system mistakenly attacking the myelin and doing some damage resulting in the list of problems I mentioned. She has ordered a brain and cervical spine MRI to be done in May, with an office visit in June. She said she wants to see if there is any difference in the scans, and added that we need to wait 3 months to do them. The next visit is in June, and maybe she'll have an actual diagnosis.
So now I'm taking 600 mg gabapentin 2/day, 1200 mg gabapentin at bedtime, flexeril at bedtime, 1 Tylenol, 1 Benadryl, 2 doxylamine, 10 mg melatonin, all so I can sleep more than 4 hours. If I wake up, I can usually go back to sleep for a couple more hours. I'm using a walker any time I'm upright, since the joints still won't hold me up, just to keep me from collapsing or falling. I'm going to PT 3/week, pool PT 2/week, pool aerobics. Strengthening the legs and arms is the point to all that, and my legs feel better.
I wish you and all these other people suffering these issues better health in the future!

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My husband who had been diagnosed with Parkinson’s disease for 2 years at the age of 75 had all his symptoms reversed with Ayurveda medicine from natural herbs centre. com after undergoing their Parkinson’s natural protocol. God Bless all Parkinson’s Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.

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@karlabgs

My issues are similar, but began suddenly with a collapse and knees and hips would not hold me upright. My initial problems were both legs were spasming or cramping any time I laid down (RLS times 20!) very loose joints, right side of my body is numb from the toes to armpit, left hand was numb, left hand and leg were slightly not as strong as the right side. I can move everything, thank heavens!
I was in the hospital 10 days, full body MRI, repeat (more slices) brain and cervical spine MRI. I received 5 infusions of steroid and 5 IVIG infusions; receiving meds gabapentin, robaxin, tramadol, 6 mg tizanidine, benadryl (for sleep), 10 mg melatonin, 1000 mg NAC. All meds were not given at the same time, but they finally got the meds correct, and I actually slept a couple nights before going to rehab for 5 weeks. Then that medication mess started all over again, till finally I was taking 600 mg gabapentin, 2/day, and then 1200 mg gabapentin at bedtime, along with flexeril, tylenol PM (or benadryl), and doxylamine. Finally got the leg spasms to stop long enough to sleep 6 hours! Yay! My first out-of-hospital neurologist had all the records and said it's transverse myelitis (both sides of the body affected because the myelin around the spinal cord suffered an "attack" of some sort). When I left the hospital the only improvement is that the left hand is not as numb.
I was referred to a neurology specialty group at University of Texas, San Antonio, for a second opinion, met with a doctor who talked about MS, "cousins" of MS like MOG, NOSD. Her diagnosis was transverse myelopathy (both sides of the body, but now there is some condition of the myelin causing a problem, like the immune system mistakenly attacking the myelin and doing some damage resulting in the list of problems I mentioned. She has ordered a brain and cervical spine MRI to be done in May, with an office visit in June. She said she wants to see if there is any difference in the scans, and added that we need to wait 3 months to do them. The next visit is in June, and maybe she'll have an actual diagnosis.
So now I'm taking 600 mg gabapentin 2/day, 1200 mg gabapentin at bedtime, flexeril at bedtime, 1 Tylenol, 1 Benadryl, 2 doxylamine, 10 mg melatonin, all so I can sleep more than 4 hours. If I wake up, I can usually go back to sleep for a couple more hours. I'm using a walker any time I'm upright, since the joints still won't hold me up, just to keep me from collapsing or falling. I'm going to PT 3/week, pool PT 2/week, pool aerobics. Strengthening the legs and arms is the point to all that, and my legs feel better.
I wish you and all these other people suffering these issues better health in the future!

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Good morning! Sorry you are going through this and I hope I may help! I don't know if you have studied the pamphlet that comes with the different medicines, but the one for Gabapentin (Neurontin) is possibly causing most of your symptoms. I was on Gabapentin for a number of years and I was only getting worse. I read that information sheet and discovered just that, so I stopped taking Gabapentin and have had no ill effects! As for the way your body reacts when you are trying to relax and/or go to sleep, my body did that to the point I thought I was going to have to use a bullet in order to get relief but I started taking Ropinirole (Requip) and I can relax, fall asleep and sleep for long periods at a time. I take it about an hour before bedtime (as it takes about that long to kick in) and go right to sleep. When the pill wears off, (in about 10-12 hours and trust me, you will know) time to take another! Hope this helps and take care, be safe! @btsum68

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