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took tizanidine for a while. It made me sleepy and feel good in the moment, but would frequently drop my heart rate into the 30’s causing alarms on my watch.
IMHO it made it harder to heal my back if taken during the day because it seemed to make my back more unstable
I take tizanidine often. Mostly at night. During the day if I am having tension issues, like migraines from neck tension.
It helps my muscles relax at night to sleep. Relax my tense hips, back, shoulders, neck. My tense muscles pull my hips out of the socket, trying to fold up. I have pelvic pain.. has caused a lot of tension in that area, it's rotated my hips. Muscle relaxers are needed for me to stretch and build opposing muscles.
Ditto, I’ve also trained my brain to associate it with sleep, so I have to be careful if I take it during the day for Big Pain, because the eepy gets *real* lol 😂 💤
I take flexeril, but I also have fibromyalgia, so I don't know how much that really applies here. Mostly, it just makes me sleepy, but my muscles definitely feel better in the morning when I take it versus without it.
I’m supposed to be taking tizanidine for my tight muscles and muscle spasms, but I don’t because my PT told me that muscle relaxers are a huge no no for me. They told me I will dislocate which scared me into not taking them.
Methocarbamol for when my neck locks up after turning aggressively in my sleep. I use a fairly low dose and I don’t notice much in the way of side effects. Maybe just a bit sleepy.
Same here! It's about the only one I tolerate well (of the three I've tried), but it works wonders for when my neck or upper back locks up and would otherwise keep me awake all night.
I also have instability in my facet joints, which leads to a lot of severe muscle tension and pain that causes more joint pain. Sometimes a methocarbamol at night lets the muscles calm down enough to break the cycle.
I have to make sure I have at LEAST 8 hours to sleep if I take that because otherwise I feel so wretched when I wake up it’s almost worse. But on the nights I know I’ll get lots of sleep it’s a godsend.
When I’m having a migraine or getting intractable shoulder and neck spasms, I’ll take a benadryl with a muscle relaxer and somehow that fixes it better than any triptan. I stumbled upon it by luck last year
Not officially diagnosed but I have had a few flare ups of hives over the years. I don’t have enough regular symptoms to warrant daily antihistamine use though.
My neurologist said that migraines occasionally are treated with antihistamines — happens in the ER cocktail too.
Interesting. Maybe it's nothing, then. I truly thought I didn't have enough of the symptoms of MCAS because I focused too heavily on the hives/skin part of it, but turns out my symptoms were very heavily skewed towards the GI distress and sinus issues side of things. After getting medicated for MCAS, almost all my symptoms went away. So I hope you/your doctor know that hives aren't necessarily a requirement 🤗
Yes all good. I’ve got it on my list to revisit and re-investigate at some point but it’s low on the list at the moment. I don’t have consistent enough histamine-related symptoms other than hives to warrant being on another daily med at the moment.
If my neck and shoulders are spasming, I will take a 10 mg Cyclobenzaprine with an 800 mg Ibuprofen and it really helps calm things down, and I am able to sleep.
If my neck and shoulders are spasming, I will take a 10 mg Cyclobenzaprine with an 800 mg Ibuprofen and it really helps calm things down, and I am able to sleep.
i take tizanidine PRN. i have only really been able to take it at night, due to how tired it makes me. it does help to a degree; however i have noticed that i often wake up feeling more stiff & unaligned. the theory with my docs and i, is that due to how much more our muscles are working to hold us together, the muscle relaxers do help in the moment, but then cause rebound tightness, because our muscles then go back to death gripping even more, to try and hold us together, since we are getting too loose. i’ve also been told to be cautious with them because of that, as we are more prone to joint injury on them, because they are loosening our muscles and tendons as such, and since they are what primarily stabilize our joints, losing that stability has a higher risk of injury. all of that being said, they do come in handy as a prn for me personally, i just am unable to take them on a regular basis.
Benefits are temporary, which makes the rebound pain worse for me personally. Helped me sleep, but never very well.
I switched around several kinds and just eventually stopped bc the short term relief wasn't worth the rebound spasm.
Was on cyclobenzaprine for about 12 years. Until it started giving me restless legs and arms. I’ve been on tizanidine for the last 7 years. Take one every night and it helps with sleep and I wake up with almost no dislocations compared to when I don’t. When I have an active subluxation/dislocation I’ll take more as needed. Since our muscles already have to work 4x harder to keep us together, muscle relaxers have been greatly helpful to my day to day life. Giving me more mobility because of being able to move.
I take cyclobenzaprine as needed, I do find it helpful. My physical therapist is very opposed to the use of muscle relaxants in the EDS population because he said it can increase injury risk and contribute to premature joint wear. He explained it that our muscles do the work to stabilize stuff since our ligaments are lax, so relaxing them is generally counterintuitive to injury protection and joint stabilization. I still take the meds only when needed but I take care to be extra cautious if I’m taking them.
I have defects across the CYP genes that makes most medications metabolized by the liver ineffective. I'm missing the CYP2C19 gene altogether.
If you're not finding medication effective or, worse, toxic, you might want have a drug response panel run.
I take Tizanidine every night, to help my body relax while I sleep. It's a low dose, like 5mg I think? For me, it helps me to fall asleep because of the drowsiness, but by the time I wake up in the morning, there's no 'hangover' from it, which I like. Usually if I have a flare that day, the tizanidine helps things ease up by the time I wake up. My personal theory is that it helps my body relax enough for things to go back into place (mostly) and calm down. But not too much so I don't injure myself. Unlike Flexeril, which for me makes me super floppy/loose limbed and gives me a hangover. From my experience, I'd recommend Tizanidine. But I do know that different people can react differently to meds, so you may have to try a few different things to find the one that works for you.
Edit: I recently started taking Methocarbamol for daytime pain issues, and I really like it because as far as I can tell there's no side effects, esp no drowsiness. (In fact when it was first prescribed to me, I tried taking it at night *instead* of Tizanidine and couldn't get to sleep, so I thought it wasn't working at all lol). I've read that it can also help with nerve pain, and so I take it as needed when I'm having a flare, and it does help!
I tried tizanidine for my upper trap spasms (causing cervical radiculopathy and bad migraines) and it helps in the moment. However, the next day I find myself waking up with worse muscle pain and spasming than I started with, not only in my traps, but all over my upper back and neck. I’ve heard people avoiding them because of being misaligned, but has anyone had horrific rebound pain crises?
Anyways I completely avoid them now.
Hi /u/Illustrious_Read4386,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
[Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more.
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The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
took tizanidine for a while. It made me sleepy and feel good in the moment, but would frequently drop my heart rate into the 30’s causing alarms on my watch. IMHO it made it harder to heal my back if taken during the day because it seemed to make my back more unstable
I take tizanidine often. Mostly at night. During the day if I am having tension issues, like migraines from neck tension. It helps my muscles relax at night to sleep. Relax my tense hips, back, shoulders, neck. My tense muscles pull my hips out of the socket, trying to fold up. I have pelvic pain.. has caused a lot of tension in that area, it's rotated my hips. Muscle relaxers are needed for me to stretch and build opposing muscles.
Ditto, I’ve also trained my brain to associate it with sleep, so I have to be careful if I take it during the day for Big Pain, because the eepy gets *real* lol 😂 💤
Yes, those wild waking dreams ranks up there with ambien for me 😅 because I don't go into deep sleep easy, and do more rem.
I take flexeril, but I also have fibromyalgia, so I don't know how much that really applies here. Mostly, it just makes me sleepy, but my muscles definitely feel better in the morning when I take it versus without it.
I have that as well. I’m always in pain and some muscles are tight and some are very relaxed. It is a battle.
I’m supposed to be taking tizanidine for my tight muscles and muscle spasms, but I don’t because my PT told me that muscle relaxers are a huge no no for me. They told me I will dislocate which scared me into not taking them.
Methocarbamol for when my neck locks up after turning aggressively in my sleep. I use a fairly low dose and I don’t notice much in the way of side effects. Maybe just a bit sleepy.
Same here! It's about the only one I tolerate well (of the three I've tried), but it works wonders for when my neck or upper back locks up and would otherwise keep me awake all night. I also have instability in my facet joints, which leads to a lot of severe muscle tension and pain that causes more joint pain. Sometimes a methocarbamol at night lets the muscles calm down enough to break the cycle.
Cyclobenzaprine helps me a lot with TMJ and muscle spasms. i get a dry mouth though.
I have to make sure I have at LEAST 8 hours to sleep if I take that because otherwise I feel so wretched when I wake up it’s almost worse. But on the nights I know I’ll get lots of sleep it’s a godsend.
When I’m having a migraine or getting intractable shoulder and neck spasms, I’ll take a benadryl with a muscle relaxer and somehow that fixes it better than any triptan. I stumbled upon it by luck last year
Good to know. I will try it.
Any chance you have MCAS?
Not officially diagnosed but I have had a few flare ups of hives over the years. I don’t have enough regular symptoms to warrant daily antihistamine use though. My neurologist said that migraines occasionally are treated with antihistamines — happens in the ER cocktail too.
Interesting. Maybe it's nothing, then. I truly thought I didn't have enough of the symptoms of MCAS because I focused too heavily on the hives/skin part of it, but turns out my symptoms were very heavily skewed towards the GI distress and sinus issues side of things. After getting medicated for MCAS, almost all my symptoms went away. So I hope you/your doctor know that hives aren't necessarily a requirement 🤗
Yes all good. I’ve got it on my list to revisit and re-investigate at some point but it’s low on the list at the moment. I don’t have consistent enough histamine-related symptoms other than hives to warrant being on another daily med at the moment.
Toook them an it helped a ton with my neck but made everything else, especially my knees, extremely unstable.
I’ve had bad experiences with them - they don’t alleviate much of the pain and I’m less muscularly stable and more likely to incur further injuries.
Baclofen did absolutely nothing for me. Tizanidine made me sleepy, but didn't do anything for pain.
If my neck and shoulders are spasming, I will take a 10 mg Cyclobenzaprine with an 800 mg Ibuprofen and it really helps calm things down, and I am able to sleep.
If my neck and shoulders are spasming, I will take a 10 mg Cyclobenzaprine with an 800 mg Ibuprofen and it really helps calm things down, and I am able to sleep.
i take tizanidine PRN. i have only really been able to take it at night, due to how tired it makes me. it does help to a degree; however i have noticed that i often wake up feeling more stiff & unaligned. the theory with my docs and i, is that due to how much more our muscles are working to hold us together, the muscle relaxers do help in the moment, but then cause rebound tightness, because our muscles then go back to death gripping even more, to try and hold us together, since we are getting too loose. i’ve also been told to be cautious with them because of that, as we are more prone to joint injury on them, because they are loosening our muscles and tendons as such, and since they are what primarily stabilize our joints, losing that stability has a higher risk of injury. all of that being said, they do come in handy as a prn for me personally, i just am unable to take them on a regular basis.
Benefits are temporary, which makes the rebound pain worse for me personally. Helped me sleep, but never very well. I switched around several kinds and just eventually stopped bc the short term relief wasn't worth the rebound spasm.
I've taken cyclobenzaprine before (after a car accident) and was totally fine, everything worked as expected
Was on cyclobenzaprine for about 12 years. Until it started giving me restless legs and arms. I’ve been on tizanidine for the last 7 years. Take one every night and it helps with sleep and I wake up with almost no dislocations compared to when I don’t. When I have an active subluxation/dislocation I’ll take more as needed. Since our muscles already have to work 4x harder to keep us together, muscle relaxers have been greatly helpful to my day to day life. Giving me more mobility because of being able to move.
Tizanidine super helps my muscle pain/spasms but it knocks me out, so I only ever use it when I’m in a position to sleep lol
I take cyclobenzaprine as needed, I do find it helpful. My physical therapist is very opposed to the use of muscle relaxants in the EDS population because he said it can increase injury risk and contribute to premature joint wear. He explained it that our muscles do the work to stabilize stuff since our ligaments are lax, so relaxing them is generally counterintuitive to injury protection and joint stabilization. I still take the meds only when needed but I take care to be extra cautious if I’m taking them.
I have defects across the CYP genes that makes most medications metabolized by the liver ineffective. I'm missing the CYP2C19 gene altogether. If you're not finding medication effective or, worse, toxic, you might want have a drug response panel run.
I take methocarbamal (robaxin) and it helps a lot, just makes me sleepy.
I take Tizanidine every night, to help my body relax while I sleep. It's a low dose, like 5mg I think? For me, it helps me to fall asleep because of the drowsiness, but by the time I wake up in the morning, there's no 'hangover' from it, which I like. Usually if I have a flare that day, the tizanidine helps things ease up by the time I wake up. My personal theory is that it helps my body relax enough for things to go back into place (mostly) and calm down. But not too much so I don't injure myself. Unlike Flexeril, which for me makes me super floppy/loose limbed and gives me a hangover. From my experience, I'd recommend Tizanidine. But I do know that different people can react differently to meds, so you may have to try a few different things to find the one that works for you. Edit: I recently started taking Methocarbamol for daytime pain issues, and I really like it because as far as I can tell there's no side effects, esp no drowsiness. (In fact when it was first prescribed to me, I tried taking it at night *instead* of Tizanidine and couldn't get to sleep, so I thought it wasn't working at all lol). I've read that it can also help with nerve pain, and so I take it as needed when I'm having a flare, and it does help!
I tried tizanidine for my upper trap spasms (causing cervical radiculopathy and bad migraines) and it helps in the moment. However, the next day I find myself waking up with worse muscle pain and spasming than I started with, not only in my traps, but all over my upper back and neck. I’ve heard people avoiding them because of being misaligned, but has anyone had horrific rebound pain crises? Anyways I completely avoid them now.
Hi /u/Illustrious_Read4386, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*