Had MS since 2014 and my symptoms are spasms in the back on both side and trigeminal neurolog (tn). Does any one have the back spasms? Right side approx 80% of the time with 4 to6 intensity. Left side 30% with intensity of 7 to 9. Left side feels like a tearing burning sensation. Most movement causes one or the other. Don't know what to do. Very hard to sleep. Anyone experience this?
Back Spasms: Had MS since 2014 and my... - My MSAA Community
My MSAA Community
Hello Booda, this sounds very painful. I personally don't have this issue but I wish you well. Let us know how you doing later.
Booda, I hope your neurologist can help you find relief. I had significant back pain and right hip pain during the last relapse, but not actual spasms. I'm grateful that didn't last long, and I'm sorry yours are being stubborn and affecting your sleep.
I don't have experience with it, but my brother-in-law is a pathologist who suffers from back spasms and arthritis. He recently began looking into cannabis products and has had good results. I don't know if it's legal in your state, and I can hardly believe I'm recommending it(!), but if it helps, that's great!
Keep us posted.
I am in Texas and cannabis is not legal. The issue is it nerves and not muscle
Booda nerve pain tends to be more burning, knife like. Muscle more cramping. But can be both
Oh, the burning, knife like can almost bring a grown man to his knees with tears in the eyes. Try to stay out of the public at times because of the pain.
nerve burning pain may respond better to meds like gabapentin, Lyrica , Cymbalta, Elavil...
Hi Booda Welcome back, it's been awhile. I am sorry your still having such bad back spasms. I only had the spasms in my leg and could barely handle that. So l can't even imagine.
I am going to be asking my Neuro about Botox for treating it, since l had such a bad reaction to Baclafin. Maybe that's something you can ask him about? Although I don't know if they are all doing it yet. Doesn't hurt to ask though.
I hope you find something that works for you very very soon!
Hi Booda, just wondering if they've tried muscle relaxants in those meds you take. I don't have spasms, but am familiar with back issues from arthritis as I've had 2 surgeries in lumbar spine and now the lumbar is fused which was an awesome improvement for me. I have a slight herniation very close to where my back lesion is in my thoracic spine. I get feeling like I've a lump there and it gets uncomfortable, but no spasms. My ortho doc was going to do surgery there but that was changed after the lesion was found there. I am having nerve conduction tests tomorrow in Cervical, Thoracic spine and optical nerves tomorrow! A 5 hr appt. Hope you are able to find some relief.
Yes, I have taken a number of muscle relaxants over the past three years. The only thing the do is drug me. The Pain Magament doc said that the spasms are nerves and not muscle. Nerve spasms are hard to deal with.
Let us know how you get on CalfeeChick. I hope the tests go ok 👌, blessings Jimeka 🦋🌈
I get muscle spasms terribly on the right side of my back b/c of lesions. I was prescribed Tizanidine for them. It normally works but last year the spasms were so severe I went to the ER and got relief from diazepam. I've used it twice since then. It puts me to sleep which is fine with me when I'm in that much pain. Hope you get relief soon!
Thank you for the information. Do you know if your spasms are muscle or nerves? Mine are nereves. I sure will ask abt these two meds. Thanks again
My husband had to get a short course of steriod. Not high dose only 40mg...seemed to help. His was nerve also. MS dr. would not give him ful course of steriod bc of UTI issues. Ask about the steriod...Good luck
So sorry...I also have trigeminal neuralgia but my back issues, I believe, are more likely not MS related.
Meds for spasms that might help: baclofen and zanaflex (tizanidine) likely most often used
Hope you get relief soon!
Yes, they were among some of the first tried. In addition to not working they really made me feel druged
Erash, how do you deal with the TN? I take the trileptal and lyrica. In Aug I had a needle ablation with some success
Tegretol is the only med that's worked for me. I increase or decrease the dose based on pain levels--weaning down very slowly.
Last June I had Gamma knife surgery. It may have helped as I'm able to stay on a lower dose of Tegretol but my entire right face is numb now because of this procedure --better than the pain though.
I've had trigeminal since the late 1990s.
How are you doing with the TN?
I am very fortunate that I am able to deal with it. I have only had it since 2014. I know I am very lucky but it still is a frustration along wiyh the spasms. At times I am able to eat most things. Live in E Tx so really don't deal with cold. Just nice to communicate with someone that knows what is going on
Hi Booda, sorry about all of your pain. Has your doctor checked your blood potassium, calcium, and magnesium? These are important ions for nerve firing which in turn causes muscle contraction. If they are too low or too high, you will have problems. Need to have that checked. Is the myelin sheath around those certain back nerves damaged from MS?
I also had TN of the right side. 7 years ago my choices were Tegretol, surgery behind the ear and into the brain to clip the nerve or gamma knife radiation. I chose gamma knife because I didn't want anyone poking around in my brain and I didn't want to be on another med especially tegretol which has a side effect called "heart stop." I will not say that GKR is not invasive, the procedure itself is not, but putting the halo on is.
My face is not numb, it's fine. Because of the MS, there is a potential of TN coming back within a few years. Mine hasn't really come back. About 2-3 times/yr it will be there for a day and go away.
I have had MS back spasms which originate from my nervous system firing to the muscle to contract for 'no' reason. Look into increasing your baclofen, I have tried flexeril & zanaflex, too, but didn't really help me too much. My spasm eventually went down my entire left side, but then I have also had the notorious MS HUG, which is darn tough to control with meds. My neuro increased my baclofen and my Neurontin though I would never give up either of these meds, my spasms come and go at their own will. I used to think that I was causing my back spasms by trying to walk using the wrong muscles, but not sure now.
lindance, I've had MS for 22 years, went through 7 years of nursing education and I have never heard of the "MS HUG." What is it, how do you know if you have it. I have tried Baclofen, Neurontin, Flexeril (allergic to it now), Skelaxin (also allergic), Zanaflex (anaphylactic reaction to it), and now trying a really, really old muscle relaxant called Parafon Forte, doesn't really help, but I keep taking it in hopes of it working one day. I live in Oklahoma City, Oklahoma. Oklahoma has the highest prescription rate and abuse of opiates in the nation. Getting a prescription of narcotics is dang near impossible. So I use Thermacare Heat Wraps on my back, however I have been burned by them several times. Not sure what I need to do. Thanks so much for any information you may know about this wretched disease.
The problem is there are not any drugs that I know of that really help the intercostal spasms, which I call the MS HUG. One of my first symptoms was a feeling of a very thin elastic back around my chest like my bra was too tight, but I didn't have on a bra, that was close to 30yrs ago. Mine has continued to increase in size and intensity. It sometimes lasts for weeks and feels like it inhibits my breathing. I try not to panic but sleep is impossible, I have resorted to Xanax (seldom) for the burning pain but that just drugs me to sleep. I have increased my baclofen to 10mg 4xdy though I do not like the feeling (3xdy is better for me), but what are my choices, none. Neurontin works for my MS but not the hug. I do use my bed elevation up and down legs or chest to help, and I use a heating pad which helps a little, I also use dexilant & ranitidine to help with the indigestion caused by the horrible chest tightness which seems to stop my food from being digested. I have found it is best to not eat big meals at all, grazing helps. At my last hospital stay, I was told I have COPD, which my Neurologist disagreed with saying it was my MS. The latest and greatest thing that has helped me is a gentle massage. My PT has included a massage 2 x wk for 6 weeks. I actually cried because it was the first time in 20+ years that I had been without pain-so embarrassing and I am not a crier (at least not in public-I cry out a lot when I am alone, sorry to admit).The MS HUG can be overwhelming but just hang on and it will eventually abate.
Thank you so much for sharing your story with me. I guess I have the hug as well. I haven't discussed it with my neurologist as I don't have one until November. Gotta love having to use a teaching hospital due to insurance. I seem to have a neurologist for a year or two and then they move on to private practice with a hospital I can't go to. I then get a new neurologist and the process of building a working relationship with them starts all over again. Totally blows!! I also have horrible indigestion, it never occurred to me it might be MS related. Many nights I wake up throwing up. I'm terrified I'll get aspiration pneumonia. I've changed my diet to bland and stop any eating long before bedtime, which has helped somewhat. Honey, don't ever be embarrassed about crying. It is an emotion that a lot of us should do more often. Doesn't mean you are weak! Those were tears of joy and you should wear them like a banner!! You have been successful at finding a great treatment which helps you!! Celebrate it!! Prayers and hugs to you my new friend!!
Well, thank you for your support. I am sure you already raise the top of your bed to help. One very scary and serious symptomatic result of the HUG, at the beginning, caused several trips to ER thinking I was having a heart attack. These panic attacks were shocking to me as the pain would radiate down my left arm and up the side of my neck into my jaw and loose bowels. Something I learned after several years is that with the HUG I would not breathe regularly due to the chest tightness so in essence I would hyper ventilate without even knowing it, even getting a little dizzy. After many years when I would have this feeling, I learned to quietly (I was not scared) cup my hands and exhale/breath into them, it helped a lot. After I discovered that my symptoms caused the 'panic attacks' and were not psychological, I was so relieved and could help myself at least a little.
I understand Baclofen did not work for you. How about trying yoga? I take Baclofen and practice Yoga three times a week for the same symptoms you are experiencing. My back spasms/pain became unnoticeable. I also get acupuncture once a week which helps big time!
Dear Booda, I am in Uk and just battling with Dr to get assessed for MS. 12 years ago or so I used to have pretty constant lower back pain and every so often there was a flare and I would get intense painful spasms. Valium was for me the most effective drug but the most effective treatment I had was acupuncture. I had 4 or5 sessions about various issues and the pain just vanished. I have been through 2 pregnancys and I have not had a days back pain or a spasm since.
I have tried acupuncture in the past but I may need to give it another try.
How long did it take for the acupuncture to work? I may not have given it a fair shot. I believe 6 treatments
I only had about 6 treatments. So many health issues at the time I only mentioned the back pain once and he stuck a few needles in for it and it was gone. Didnt do anything for other health issues though. I have found some homepathic remedys great for my fatigue as well but chatting to a freind the other day who used to practice it he said that being a homeopath was frustrating as you got really miraculous cures sometimes but often no effect. I wonder if its like that with a lot of alternative stuff.
I have TN , Lyrica 300 mg keeps it under control most of the time, occasionally I have to increase. It's usually right side. Most of the time feels like a toothache but when irate does feels like someone using a whip inside my gums. I have muscle cramping on right arm only, I think it may be that my right side is my better side, I always use a walker and cane. I have drop foot on left side. I think because right side is dominant, I am causing some of this because I use right side to help me balance the left side Lyrica. My pain doctor started me on 12 mcg fentanyl patches and it has been a miracle. I itch with most of the pain pills. I really didn't realize how much pain I was living with until I got patches. I take tramadol for break threw pain.
No get up in my legs I have to sleep on my back I can't turn over cuz it hurts I can walk on a walker or a little bit.
Had the disease for 29 years, all the medication I take my kidneys are not functioning right, I'm ready to throw in the towel I hate this disease I falll all the time.
Lala88, I was just chatting with a friend here about how this disease can really knock you down. You fight hard, but get weary of doing so, and sometimes just feel like throwing in the towel. But we don't give up or give in, do we? We somehow muster the strength to get back up and keep on fighting. I'm really sorry you've had a rough bout. It's at times like these I wish I could do more than send a heartfelt hug and pray that you wake up tomorrow feeling stronger and more hopeful...💕🌷
My face neck and entire left side does this, with sporadic flutters every where else. I get to where I can't even sit in a chair or lay down on my back because the compression is to much to bear! Any deal with this?
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