For those of you who take Baclofen or other muscle relaxer, do you remember at what level of discomfort or pain from muscle spasms you asked for, or your doctor recommended it? I feel like I can tolerate them pretty well until they interfere with walking, but I'm not sure if it is necessary to add something like Baclofen yet. I'd sure love to hear your thoughts on this.
When to add Baclofen: For those of you who... - My MSAA Community
When to add Baclofen
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greaterexp
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@greaterexp
When I 1st had the spasm I was placed on Baclofen and then they increased it to where I am today 10mg 3 x's a day 20mg 3x's a day total 30mg 3x's a day. Then they added tizanidine I started off with just doing 2mg 3x's a day and 4mg 3x's a day I take 8mg total 3x's day along with the baclofen
I started almost right on it when I was dx'd. I am up to 80mg a day. Which is a ton. Plus I am on diazepam and one other. My back spasms are why I need it. My spasms are truly horrific! I don't use that term lightly. My PT doesn't understand why I'm not bent over like an old man. They often make me cry.
So to answer your question. It's up to you and your level of discomfort. I would suggest not waiting until it is soooo bothersome you need it. That means it is been going on too long. Having it as a prevention in small doses everyday should keep the spasms at bay. You will get used to the extra sleepiness. In fact it will go away. My opinion is do not wait. These meds exist so we can live better lives. Also, baclofen is one of the strongest. You can use a different one with less side effects as preventative maintenance.
Hope that helps or makes sense.
Praying you find comfort!
Rob
Thanks for the prayers and suggestions. I have Flexeril at 10 mg only at bedtime. I had told my neurologist that I didn't want to be sleepy during the day, so that's why it is only at bedtime. It may be time to get through the sleepiness of the initial doses of Baclofen so I have relief during the day. With the move coming up in mid-August, I'm loath to diminish my energy at all for the next month, but on the other hand, I don't want to be unable to help due to spasms. Arghh!
U can also counteract the sleepiness with Nuvigil or ADD drugs?
Midgey_Midge06 , thanks for the reminder!
😁😁
• in reply torlh1974
rih1974 (Rob), I've been using Baclofen since dx'd May 2011. Now at 80mg daily, I had been up to 120mg per day for a while. Your comments require I pass on a recent personal incident. About 2 weeks back, a Saturday afternoon, one of those super back spasms hit me. Never had any in the past. Tried to wait out the pain and discomfort until an early morning appointment Wednesday, unsuccessfully. The spasms began just above the sacrum and ripped up to near the floating ribs. They stayed spasmed until I fully exhaled and inhaled a time or two. An IV with 5mg Diazapam was started and helped lessen the problem and pain. I went away from the emergency room after 30 minutes of so, with the following explanation. I had been using a 4pt walker for the past 9-12 months, to enable myself to "walk" (dragging or swinging my right leg)...instead of using a wheelchair. Pointed out to me was the fact that the back muscles are for maintaining balance, not for walking. Leg muscles are used for walking. Therefore, I had actually been using my balance (back) muscles as leg (walking muscles). Made sense to me, as I had been having occurrances of my body weight going too far forward, while walking. I haven't had any more spasms, but I am now basically wheelchair bound. It took me a couple of days to recognize, and accept, this fact. What the hey. My wife and I are now planning what changes to make inside the home, providing a bit more safety for when I need to stand, as well as replacing the carpet with tile. The wheelchair travels much more easily on tile. My legs and feet swell quickly once I get in the chair, but that's one problem for which I will have to find a solution. I tried botox shots 1 time, and will not do that again. Hey, I've yakked a lot, so just a quick summary. If you're using a walker to ambulate, and suffering back pain, try using a wheelchair (transport or manual) for about a week. Yes, if you're using the walker, set it aside for a little while. I didn't notice anything about what support item(s) you employ. Be careful with that Diazapam. There are a number of medications that have interactions with it. Take care and good luck with your battle.
rlh1974• in reply to
Hidden you did not babble! Any and all info on here is valuable ! I appreciate every word! Thank you for sharing! To your point about how people walk. Absolutely! Causes more spasms. Mine have been around for years before I started using a cane. I do believe the cane makes it flare up!!!! Absolutely and great point! Mine got a tad better when I got a foot drop brace. Kept me from swinging my leg. So calming down the swing and more lower back spams. Those still happen because of my fusions. 6 levels. My Thoracic has been around for over 10 years and nothing truly works to stop it. sitting makes it awful. Next point. Should I use the roller walker or the wheelchair........... Probably. However. I look at them in the garage and have temper tantrums. I just refuse to let people I love see me using them. I know, I know. Nothing wrong with it. I just can not accept it. I am 43 decent shape and somewhat good looking. I have a huge ego. In case you have not noticed. I just can't do it. So, I just go on my walks with my cane twice a day. Focus on how I walk and take my meds. Life goes on for me.
Please never stop adding to conversations! You have incredible insite and every word helps! I pray that you get the house safe for your chair and you slow down! At least inside. Don't want to ruin the furniture! Have a great day my friend!
Rob
greaterexp• in reply to
Hidden ,
One of the things I love about this great group is the willingness to share experiences. I know we are all different and respond differently to medications and other aids, but reading about them can help me know what options I have, since no one doctor can always think of them all. It is also very encouraging to read about solutions and some of the sometimes dramatic results that may happen, as well as the possible drawbacks.
Thanks for taking the time to respond.
greaterexp Kelly, I've had Baclofen from the beginning. At first, I only took it as needed. Now I take it every day.
For Me, countering spasm is a tricky tightrope of an issue. I'm ambulatory enough to get around once I've woken up and hobbled around during My morning routine of starting a new day.
Once it becomes an issue [spasticity] if I medicate too much and put some "slack" in My legs, so-to-speak, I lose all the strength of what's left in My legs and hips and am worse off as far as ambulatory capability is concerned. A trade off of comfort versus ability.
Granted, I have a friend w MS that literally can't get around without it at all because her spasticity is quite elevated. She had a baclofen pump put in. It seemed after that, she was more reliant on a constant dose than prior to without much added gain
Guess we all can only trigger trial and error for our specific needs.
ItsChris As I always say. I wish they had a boo or an unlike button. I hate hearing all of this! I pray for all of you everyday! I hate hearing these stories. I hate being one of these stories. In the morning I have to wait 2 hours for my 15 pills to kick in before I can do anything! GRRRRRRRRRRRRR! I am headed for a Baclofen pump.
Love you all,
Rob
rlh1974 , I've often thought we should have a button for "I'm sorry," or "I'm understand."
I doubt our administrators need more to do, however!
I sure hope today is a really good day for you. You're a great encourager!
greaterexp as you are yourself! Like I said in Karen-x post. My purpose in life has changed! If I can encourage and love people and virtually, Than I am an incredibly happy man! I love yo love people! It's my favorite!
Also, you humble me!
Love to all!
Rob
We’ll have to make up our own emojis
Eva I heave to let you know Baclofen was not good for me I had a bad reaction to it. What happened to me my feet and ankles became so so swollen I couldn't get my shoes on some days. I went to go my PC doctor she had know clue she made me get a test for ghito see if I had blood clots I didn't have any blood clots. I did some reading on Baclofen which I should have done first it did say it could cause swelling.
I am happy for you if it works for you I still have not found any thing that could work for my spasms. I wish I could find something. Good luck to all of you in your fight against this Monster.
Have to tried Marinol? It works wonders for me.
No, I haven't. Maybe you could start a post about it so others could benefit from your experience. I haven't read much here about it, though there have been posts about cannabinoids in general.
Karen-x I agree with greaterexp . Please fill us in via a post on Marinol if you have time. Thanks! 
• in reply tossdw1958
ssdw1958, thank you for commenting on the bad reaction to baclofen. I've had leg problems for many years now, regularly identified as "spasticity" and "extreme toning of the muscles". I have believed for a hundred years...well, maybe not that long, but...in the past I had read that one of the side effects of baclofen was that it could cause inflamation and swelling. I've not tried marinol or any similar canabis products. My legs swell about 45 minutes after waking and remain so all day. Should be a good discussion with the Doc. Thank you once again.
greaterexp My beloved neurologist (who unfortunately moved 5 states away), gave me Baclofen for the stiffness and spasms in my legs and Tizanidine for my back -and diazepam for my back when it's absolutely awful. She taught me which dose of each med I should use and when to use them. She did caution me not to overuse any of these meds since they all cause muscle weakness😳😕. I hope this helps! Good luck to you on this muscle relaxant journey.
Thank you to all for your comments and prayers. I have a call in to the neurologist and will see what she thinks.
Hi!
I was started on Baclofen after having some weird, random muscle spasms in my hands and a couple of full-body muscle spasms. I was annoyed at taking yet another med, but it really helped the spasms. It also helped the fatigue I had in my legs. I hadn't realized how often I walked on my toes until the baclofen. Now I have a much more normal gait because the calf muscles are relaxed. Normal gait = less fatigue. Now I just chalk it up to better living through chemistry. I take 10mg twice daily. It has made a big difference for me.
I started baclofen almost immediately. Any time my neuro saw too much bounce to my walking we increased it. 3x a day now. Plus an extra if I'm having a lot of spasms. I'm officially prescribed up to six a day if needed.
I don't need them for pain but I can't go without them for spasms. Like most drugs there are drawbacks. They make me a bit tired to go along with the fatigue. You can start on a lower dose and build up if needed. Wish you the best.
Thank you. It would nice if we didn't need it at all. But it's good to know it's there.
greaterexp I have been on Baclofen pretty much from the start when I was first diagnosed. Started out at 20mg twice a day, now it's 3-4 times a day as needed (same dose). After starting the Baclofen, I was still getting bad spasms so my Neuro added Tizazidine (Zanaflex) to the regimen. I take 1mg in the morning and 2mg at night as the 2mg (full pill) would make me so sleepy I would sleep the day away.
I would talk to your Neuro now rather than waiting so it doesn't get so severe that it is hard to get relief.
Jessie
Thanks, Jessie. I'm waiting for her call today. I think it's time to do something.
I was diagnosed 4 years ago. February of this year I would have leg spasms when I would wake up but only first thing in the am and only in the legs. My neurologist prescribed 10mg three times a day. I noticed some extra muscle weakness so I gradually cut down to one half a pill at bed time. I also take one half mg of klonipin at bed time. No more spasms and rarely have sleep problems. I do wake up very slowly.
RobertCalifornia , I took my first dose of Baclofen about an hour ago. I just got up and walked, albeit a short distance, but it was smoothly and without thinking about every step! It's just the first dose, but I feel very hopeful that it will reduce the spasms. For now it's prescribed just one dose at bedtime.
I'm so glad you have found a combination that works well for you. Being able to sleep well is such a blessing, too!
greaterexp As I said before I hate having to see people take more and more drugs! But thank you God that this started working for you! If you do not have any of the nasty side effects, like someone mentioned above. Baclofen is a very benign drug and can do wonders for a long time! I am so happy that this worked for you!!!!!!!!! YAY!!!!! I wish I could put smily faces when using my computer!!!!
Love you all!
Rob
Hey rlh1974 , if you type in a colon : and a closed parentheses ), as you would to make a regular smiley face, the online system will automatically convert it into a yellow smiley face . Maybe you know this already, I dunno? FYI.
I pray everything works out well. God knows we need all the help we can get even if it is thru chemistry
I'm so grateful to have that assurance! Thanks for the prayers and encouragement.
Thank you for this post! Spasticity has increased in my hands, feet and legs over the past year. I am taking Neurontin, (spelling??) and another nerve pain med. I discontinued the second, the name of which escapes me, when it seemed to add to my intestine issues. Baclofen has been brought up at my last, two appointments, and my PT thinks it may be a good idea. I know I should be stretching more, and I'm not keen on adding yet another medication to my already burgeoning list. I am interested at what people have posted regarding CBD oils and sprays. At 42, I want to hold off on adding to pain and stiffness management until I was unable to cope. I'm afraid of building up tolerance at too young of an age.
jbix , you might do a search for posts on CBDs, as there have been some more recently. There are some knowledgeable folks here who may have some answers.
I just started taking Baclofen 10mg in the evening. I noticed fewer painful spasms and a more normal gait an hour after taking it. The next day was a rough one, but over the last few days, my gait is almost normal with fewer muscle spasms and less pain. I can't attribute the improvement solely to the Baclofen yet because my symptoms fluctuate a great deal. However, I seemed to be headed downward quickly, and after starting Baclofen, pretty suddenly improved.
Though I don't want to take medications until really necessary, my quality of life is important, both to my family and me. Whatever you choose, I'm sure you'll do your homework, and I hope you find relief.
I had to start Flexeril when the muscles in the calves of m leg felt like concrete and it hurt to walk, and even hurt to massage my legs! But after 14 years, Flexeril caused Syncope, and I can only take Robaxin, the only one that doesn't lower blood pressure.
greaterexp I'm late joining this post, but I am glad you found relief with your initial dose of Baclofen! Now that you're almost a week into it, it seems to have consistently helped. Yay!! Its great when meds do help, and I hope you won't be increasing your dose any time soon. Ten mg is still pretty small!
(My personal experience with baclofen has not been great, but that doesn't seem relevant to share with you since you are responding. Maybe I'll do a post someday with a "baclofen pump trial dose" heading so that at least it will be searchable, and may help someone else? As you said, we all benefit from hearing others' experiences. We all seem to have hiccups along the road that, while frustrating to us, could help spare someone else when they're shared. That takes some of the sting out of it... when it ends up helping someone else.)
I need to stop writing novels in my replies! Oy. I'm trying!! Lol.
Nom_De_Plume ,
Your eloquent and helpful responses need no reduction in words! Thank you for replying!
I do hope you start a post about the Baclofen pumps, since there aren't many who can share information about it. First hand experience is so helpful!
By the way, if you want verbosity, just ask me!!
greaterexp You're too kind, and no, you're not verbose.
I will put the "pump post" on my to-do list!
I use a muscle relaxer but not scheduled and that seems to work...everyone is so different.Baclofen would only work at a higher dose and my bod is weird that if I don't have to take it 4 times in a row I don't get so use to it that if I don't have to take extra for 4 to? weeks theres rest on my system....flexeril is my go to if real bad.all these meds are tricky to each individual.Sadly my insurance quit covering my pain med and to go off still shatters my day and its been 2 months?Read up on meds and ask doc at what level mg is best.By the time people are a ten on the scale we sometimes are a 20...I don't cry but inside I'm screaming.i need to take meds before that point and not play sooooo tough.Best wishes, let us know how you do!
I'm so sorry you can't handle many meds well. I sure hope and pray you can have some relief from your pain.
I'm so thrilled that the Baclofen seems to have a great effect for my muscle spasms, and much better than the Flexeril. My ability to walk was being affected by spasms, and when I ran out of the Baclofen, I was in trouble. It's been about a month, and I'm still taking only 10 mg each evening.
You're so kind to ask. Thank you.
Yes, I have been taking baclofen for about 24 years. My second relapse in 1992, after my second child, I had very bad muscle spasms in the arms and hands (not typical I was told). And it worked well as long my hands and arms were not exposed to heat. Cooking was interesting; I wore something long sleeves, with longer mitts. I try not to use the oven unless some one was around. As time went on with resuming oboe/gardening my spasms seemed to subside. The more I exercise/stretch, I improved. Biggest problem I had with baclofen was drowsiness. Be very careful the first time you use a car. Your body adjusts over- time. They can use tinazindine (zanaflex) to help with the baclofen. But you are not that far along. Flexeril relaxes the entire body more like if you have stiff neck and helps you to sleep and can cause constipation; it didn't do much, for my MS spasms. Relaxation and yoga or tai chi helps. Use the lowest dosage possible.
Much later in my MS journey ; the muscles along both sides my spine, neck and upper shoulders (large muscles) - some Botox/then better with PT and exercise and 14 years later, now I am dealing with muscle spasms in my legs and feet.
Godspeed.
Hidden , thank you for sharing your experience. I'm so glad the Baclofen worked well for you. I didn't expect a low dose to help as much as it has. I take only 10 mg in the late afternoon or evening, and it seems to keep me walking more easily the next morning.
It must have been such a relief for you to be able to use your hands again. I can't imagine what you must have felt when you couldn't use them easily and had such pain.
Wow, I know I am a little behind in posting in this forum but I am so thrilled to have found it and read ya'lls post about baclofen. It's help me to understand a lot of things that the Dr's don't explain. I have always had these unusual spasms, which my on Dr. who left where I was going, who was so brilliant, said I was also having Myoclonus, where when I would be sleeping, sometimes awake, my body would go into a sandwich position, (best way I can describe it). All of a sudden. I could literally sit and watch my skin crawl as if there were critters underneath it. Before I was diagnosed with MS, I was just treated for restless leg and sleepless nights. In 2009 my Dr. decided to send my to Neuro. I was put on a lot of different meds that could not control the issue until Baclofen. Then went to a specialist to see if I was a candidate for a pump. Decided on 120mg a day. I have moved into SPMS. Gilynia was the worst drug I was on, I was having the stroke symptoms. My Neuro wasn't gonna pull me off but the NP and I while I was crying decided to take me off, I know if I would've stayed on it I would not be writing this today. Any hoot, I feel so much better off of it, I have cut my Baclofen down to 80, now after reading this I am going to try and take it only at night, because I did not know about the weight gain. I also did not understand about the walker and wheelchair thank you for all this information. Maybe this is why I am so tired thru the day, but my VitD was down to 15, now taking a supplement on that. So I'm gonna check it out, since my MS is quite, maybe is a good time to back off some of this Baclofen, a little at a time. Never new it put weight on ya. Thank you all, I'll be praying for ya!!
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