Hi. I'm Kym, and new to this site. I've had MS for 32 years, and am now in a wheelchair 80% of the time. I'm not taking any DMD at this time. I was on Gelenya till about 3 months ago. It seams like the nerve pain and cramps have gotten worse. I tried lyrica, but it made me lethargic. Not taking something that make's me more tired than I already am. I have SPMS. Does anybody have any ideas on how to deal with this? I do already take Baclofen and Tramadol.....maybe not enough? I'm trying to save my liver!!
Pain in legs and feet keeping me up at n... - My MSAA Community
My MSAA Community
Hello kymrob91457 and welcome
Welcome. I've read that tizanadine and Valium are both also used for spasticity.
Welcome to the group.
I can’t answer your question, but I do welcome you. I hope you find answers for your symptoms.
Hi kymrob91457. I will have my 30th anniversary with MS this July. I am still ambulatory, however I suffer from cramps, spasms and pain in my legs and feet. I take medication and PT to managed my symptoms. It isn’t perfect but has given me some relief. Medication: I take Neurontin for the pain. Be careful with opiates, I use to take tramadol and needed a stronger opiate. So recently, I have increased my dose on Neurontin from 300mg to 400 mg. It helps but not perfect. For the spams and cramps I take baclofen, tizanidine and sometimes ibuprofen. To sleep at night they give trazadone. It definitely helps me to sleep most nights. For exercise: I go to Neuro-PT. I been taught new ways to stretch for my cramps and spasm and home exercises. They have this machine which stretches me and helps with my posture. It a great for a person who cannot walk or stand. You sit in the machine and they crank it so you are in a standing position and correct your posture. Then you do exercise in that position. They told me to get a Theraband rolling massager to roll on my legs from Amazon. I get massages at home. All of these have helped.
I also take Neurontin. 300 mg. Three times per day. It will definitely make you tired at first but you get used to it. The fatigue from the med pretty much went away after the first week or so. And one starts on a lower dose and builds up. I tried quite a few meds for pain in my feet and this is the only med that helps reduce it.
Thank you. I've never taken Neurontin, I'll have to ask my Dr. about that. I tried Lyrica....once, and I slept all day. I didn't take that ever again! Thank you!
Lyrica made me feel more drunk/sedated that Neurontin. I got used to Neurontin in a few days, I never was able to get to that point with lyrica
Thank you for sharing. I should go back to PT, now that it's warm outside. I'll check into that rolling massage. I have learned that if spasm's start before I go to bed, if I take my thera-band stretchy thing, and exercise the leg that's having the spasm, it gets better, and I can sleep. Thanks again. Kym
I also get Botox injections for my difficulty hamstrings and quads. But yes, I do the stretching at night and yes I go to PT. They will get you other exercises. Without physical, occupational and speech therapist and much prayer and know I wouldn’t be as healthy as I am right now. Also ice is good to numb nerve pain. And some heat on muscles spasm, in particular MS hug. I talk to a psychologist about my anxiety and occasional depression I get. I have a good MS team of doctors that communicate well with each I also have a supportive Pastor that helps me cope spiritually.
And of course the wonderful, loving, caring people on this website are amazing. I am abundantly blessed. No matter when I feel low or happy. Don’t give up; you are special to so many people.
Welcome to the group kymrob91457 I take baclofen 20mg (3-4 times daily) and tizanidine (1mg in the am and 2mg at night) for spams. Though at my next appointment with my new neuro I'm going to see if we can up the dosage of Baclofen as my spams seem to be getting a little more painful. My last neuro wanted to hold off and wait after we changed my migraine meds because he didn't want to change too many meds at once. He did say I would have to have blood work checked if my dosage was upped from the 20mg.
Look forward to meeting you,
Thank you Jessie. I take 10mg of Baclofen morning, night, and in the middle of the night. Maybe I should be taking more.? I can only take tizanidine at night because it knocks me out. I take 1/2 of a 4mg tablet before bed. Maybe I'm just not taking enough. I am concerned about my liver. I also take medication for my thyroid, asthma, allergies, depression, and high cholesterol. So, besides MS drugs, I take too many drugs! Thanks for sharing, I'm going to try a whole tizanidine, and 2 baclofen before bed. You reminded me my baclofen are only 10 mg. Thanks again. Kym
Your baclofin may need to be increased if your spams are bad. The next dose up is 20mg. I take 2mg Tizanidine and only can take 1/2 in the morning or I would sleep the day away...have done it when my neuro told me to try and get used to it lol Maybe you need a whole pill of it at night now if you spams are bad? Of course, check with your neuro first as I'm not a doctor.
Sometimes we know more than the Dr. do. I usually end up calling my Nuro. and telling him.....I'm upping my Tramadol, so change the script! He always does it., so I guess it's ok.?
When I took Lyrica, I had the weirdest dreams! The kind that scare you. Normally I can laugh at the strangeness and even tell myself that I’m dreaming. Not with Lyrisc though.
Just my $.02
I will make this very short (for me), you can look up my previous posts. My life was Hxxx. I tried every drug my (2) of the best neuro's in Chicagoland from different practices could throw at me. Nothing worked. I almost cut off my feet many, many times, knowing that would be stupid, I'd still have the pain. I got some relief drinking fast at night when I was already many hours past my comatose point, and if I didn'tI'd have another sleepless night. Yeah, that worked, pass out on 3 - 4 shots of cough medicine liquor? Great for a liver I used to track my SGOT / SGPT from the abnormally high liver counts from the DMT's when I did not drink a drop. One of my Neuro's told me about Medical Cannabis before it became legal here. Waited almost a year for it to become, and was at the dispensary the 1st day out of hope. I was euphoric, not because of any "high", because what I was given had no THC, but it was the first drug that killed the pain, immediately! Vaped as per the doc's recommendation. Immediate relief. Still do. Skip, pain is back. Read this type pain is the worst of any type out there. I believe it, cause I can take pain of all types without even paying attention. Put a nail through my food the other day, stopped for second, need a shot?, nah, forgot about it, kept on with what I was doing. Surgery, prescribed opioids, never touched them. But really, focus on CBD rich flower, vaped. Again, CBD rich flower, vaped. All the edibles, oils, ... help, just not so AMAZINGLY IMMEDIATE, like vaping the flower. And.....and who needs a THC high? Never got so high as when the pain went away! Like magic! Don't tell anyone, but I don't get a "high" from THC, like I did a gazillion years ago when I tried the stuff as a teenager. I've never touched the "wacky weed since" Doc lead me back to it, after feeling sorry for me, as nothing with a script ever worked, and he knew it wouldn't. Tried them all! Neurontin, Gabapentin, ........ had a whole file cabined drawer filled with all the did not work script containers. Always, "only antacids work immediately, give them time. Did, didn't work. CBD cannabis, just like an antacid!
P.S., Kym, I've had MS for decades. Barely walked. Went essentially comatose for a couple years with severe brain fog. Got off all the DMT's per Doc's suggestion. Got on Nutrition, Nutrition, Nutrition. That brought me back from the walking dead. Now I count my steps. With a cane, for balance, I make sure I do at least 10K steps every day! Just got recumbent bikes, and loving it! Most of all, Never Give Up!
Hi MarkUpnorth. I live in WI, and I can't get it here. I didn't know they made it legal in IL. Thank you for the information. I could really use some! I also feel like cutting my feet off!
Wisconsin, used to be my home away from home. I recently sold my get away of 25+ years because I will not cross state lines with cannabis or break the law in any way with the only thing that works for me. Not worth it. Though I used to know Wisconsinites who used street marijuana there recreationally. I never even tried, because it wasn't legal. (My friends think I'm a bit nuts that way.) CBD from hemp is legal there. If not, why is it sold even on the shelves of truck stops... You can mail order it if necessary, and probably get much better hemp CBD that way. But what I bought in Wisconsin really didn't help. There are some mail order hemp CBD's that are supposed to be better. I haven't yet found one I would say works well for me. Cannabis is made up of many chemicals, naturally, and even big Pharma hasn't got a handle on it yet. They are really trying, but it is a complex matter that only nature seems to have gotten right. Sorry, I have to resort to a bottle and do damage to my liver and few remaining healthy brain cells when I visit to get to sleep at night. So I visit seldom anymore. I was never really a drinker. I never had a beer as did just about everyone there it seemed. Sorry but most Cheeseheads I know were born with a beer in their hand. I got migraines every time from even a single beer decades ago, so never touched the stuff. Sorry Brewers!
Hah Hah! Yup born with a beer in our hands. I think you've got something there. I never smoked pot back in the day either. I was a teenager of the 70's.....everybody smoked. I didn't, and my friends never gave me any crap about it. So....do you take it in pill form, or vape it? I need to know where I can get some that will actually work. Any suggestions? Thanks. Kym
My Neuro recommended vaping, not smoking. (I'm sure he was simply keeping me safe from all the carcinogens relate to burning anything.) But I've since learned it is well recognized that it is the fasted way to effect your body. Edibles take longer to take effect, however last longer. The majority of states now have medical cannabis. However, since the Feds really aren't keen on this, (too much big money influencing our leaders not to allow this, as it hurts their financial interests, kills opioid and many other drug sales, safely, unlike their drugs). Sorry, I think you're stuck, as I was for almost a year since I heard of the possibility from my neurologist. And now that I finally found something that works, if IL decided to stop (don't think they will, as they are considering recreational now - my CBD stains will be of little interest to recreational users), I would move to where I could still get it. Try looking up CBD on-line. Read reviews. You don't think you will find hemp flower, so it would have to be an oil, pill, or edible. Honestly, I haven't really tried. I have on-line CBD pills (from hemp). Yeah, they're move like a vitamin (which I'm a firm believer in), but, do you notice anything? Not the fast acting kill the pain like a sledge hammer effect.
Definitely not like vaping cannabis CBD rich flower. Doubt the pills, just like the prescription big pharma products like Marinol,..etc. didn't quite get it exactly right either. Try and synthesize an apple tree. Yeah, not so easy. Far easier to send a man to the moon! From an engineer.
I want to definitely try.
Every MS patient is different, but again for me, A CBD RICH STRAIN is what you want to try. (For neurological pain at least). Spasticity...may be different? Nah, it was the same, but there were more specific strains for spasticity, as there are for pain. There are sites on-line where you can hear from users of your ailment. Leafly is one. You may have to weed through (sorry for the pun), but search their or any other on-line, I did research for a neighbor of mine with MS and spasticity as her #1. If you PM me, it will remind me, and I can dig out the research I did for her and forward it to you.
Hi you could try Gabapentin it did not work for me. I’m on 150 mg of Lyrica just started taking last Tuesday it’s really helping with my nerve pain I just feel a little stoned hoping that goes away when I get use to it. I also use a massage lotion called TEI-FU I buy it on amazon and it helps my legs a lot. I hope you find some relief
Thank you for the information. I'll check out the TEI-FU Thanks again!
Good idea. Thank you lois52
WOW I'M SORRY I TOO TAKE SO MANY PILL FOR MY LEG PAIN FEET, ALSO DIABETES, BUT I DON,T GIVE UP AM 53 YEARS YOUNG AND HAVE HAD M,S SINCE I WAS 14 YOURS OLD, PEOPLE KEPT TELLING TO TAKE CBD WELL FOR 6 YEARS I SAID NO, SO NOW AS OF 3 WEEKS AGO I STARTED TAKING THE CBD DROP 2 TIMES A DAY MY PAIN IS LOWER NOW AND I DON;T HAVE THE SAID EFFECTS I STILL TAKE MY MEDS TOO SORRY FOR CAPS EVERYONE NOT YELLING VISION LOVE HUGS AND SMILE POSITIVE THINKING
Hi Kym - nice to meet you!
I tried Baclofen for my Spaticity, actually took a week off from work as my Neuro said I just needed to get use to it (drugged me out and made my legs feel like cooked spagghetti). NO THANKS!
Switched to CBD pills, both with and without THC. I take the without - during the day and with, at night - no longer dealing w/spacticity. And, I'm not all drugged up. If I was dealing with pain, I could see the uses for baclofen, but I am not. I hope you find something that works for You!