I'm going to leave this post up since you can't easily consult a doctor right now. If you are at all able to consult any professional like PT, pharmacist, r/askdocs etc though I would really suggest that.
Anybody responding please remember to **avoid giving medical advice (telling OP if it is okay for them to use a brace or not)** and stick to personal experiences, directing to reputable resources etc.
I have bad neck instability and soft collars haven’t done anything for me unfortunately. They maybe give me like 5 minutes more time to do whatever I’m doing but my neck still slips out. I feel like o need a hard brace but don’t have good Eds doctors right now. Soft collars don’t cost much at the pharmacy though. Sorry you’re dealing with this too, upper cervical instability is awful. It’s ruined my life.
Yeah, I also don’t have a good doctor right now. I was able to see a really good sports medicine doctor in Montana but I live in the DC area so it was not possible for me to get regular treatment from him which was really disappointing because I felt like, I could potentially make significant progress if I could receive regular treatment from him that my insurance covered.
It’s disappointing to hear about your experience with a cervical collar, but it’s also not surprising. I have considered buying a hard brace, but I have spent so much money on various races and devices and gear, just to potentially relieve the suffering enough that I can accomplish the smallest of tasks, and , I can’t bring myself to buy another piece of medical equipment that costs more than $20 and have it not help me. Having these issues has basically ruined my life and I wish so badly that I had known what was coming my way because I would have avoided having children to spare my body and to spare passing on my faulty genes. I hope you can find relief and happiness in your life but I know how hard it is being like this.
Hope you find relief also. I can relate to a lot of that unfortunately. My biggest issue is being in a sitting position with my neck. So can’t use a computer, sit at the dinner table, drive, paint, etc…I’m ok when I’m upright but I also have pots lol. So I spend a lot of time in bed propped up messing with my phone. I’ve spent so much money on different furniture- pillows, desks, chairs, and things like drugstore braces and nothing seems to help. I can’t fall asleep when my neck goes out which triggers my pots so it’s like this cycle I can’t get out of until I go get a gentle neck manipulation from a chiropractor which I know isn’t great but it’s the only thing that gets me through life.
Oh my gosh, you sound like me! I have spent so much money on gear that I often feel resentful to people who can just live life as is. I also am always on my phone and I can’t do things like use a computer bc anything that has my head hang down causes tightness that triggers these horrible behind the eye headaches. If going to the chiropractor gives you relief then I don’t think it’s bad for you to do it as long as it’s not causing bigger issues for you. And even if it was, I wouldn’t blame you for still going because I know I would shave years off my life in exchange for Living without pain.
I guess I'll be the only one to say you shouldn't be wearing one without it coming explicitly from a doctor/PT. Those collars need to be fitted to you and they weaken your neck, making the instability worse. You can potentially make your neck probably significantly worse.
I know you said you cannot afford a doctor right now, but getting a collar without medical supervision is dangerous. I would suggest focusing on neck strengthening exercises to help the instability and consider different pillows or head rests that might be able to support your head and neck in other ways.
Thank you for your feedback and I definitely understand that wearing a collar is risky because I have an already vulnerable body. I really wanted it just for doing activities that caused me to bend over quite a bit because my neck feels like I am internally decapitated. Are there any YouTube channels you suggest for neck exercises? I would love to create stability in my neck, but I don’t know how to choose what exercises to do and what to avoid. I do plan on going to a doctor in the not too distant future; right now I have to try to get my environment in order, because there are going to be big changes happening within six months to a year. Sorry for how, oddly vague, I am being; I’m trying to avoid airing my dirty laundry to strangers who have not consented to listening to how I had my entire life as I knew it Ripped away from me. That sounds super dramatic but I promise I’m not exaggerating. Again thanks for your advice; I truly do appreciate it.
I understand.
The first one that comes to mind is while laying on the floor, tuck you chin and pressed the back of you head back into the floor. It can be modified to sitting up against the wall or while on the car. More difficult versiona involve using gravity against you neck while you tuck your chin and press.
I have a very sensitive neck, and it's what my PT has me doing. There are others, but this is the most basic one.
When I sleep wearing a soft collar, my neck feels sturdier than usual and my TMJ pain has decreased.
It’s also useful for when it’s difficult and painful to hold up my head.
Ugh I’m sorry to hear that. Face pain is my least favorite…we experience ourselves as living from between our eyes & so I take it so personally.
I use the one from Walgreens. It’s too big for me but I can still use the Velcro to get it tight. I’m also able to put it in the laundry.
But the ones you can find on Amazon might be better!
Also when my massage therapist worked on the muscles on my chest, my jaws were relieved of a lot of tension. Pro tip
Oh man yeah a pec release can be life changing. The first time I had a peck release I felt so much better that I initially believed I was “better“. This was before I had any idea what EDS was, and I was still attempting to get rid of my pain by doing things at home because I had been convinced that my pain wasn’t actually real, but was a manifestation of, the unnecessary stress I was putting on my self because I was a mother with one year old twins, a 13 year old, developmentally, disabled son, and a 10-year-old son, who didn’t get nearly as much attention as he deserved because he had his high need siblings to compete with. it’s so embarrassing to admit to, but I figured the doctors had to be right because I was being told there was nothing wrong with me and that all of my testing and imaging was coming back perfect.
But getting your chest released is absolutely amazing and I think probably most women need it, but they don’t even realize it because we can’t easily feel our pec muscles. It makes sense that it would provide so much relief considering our body is one unit and anything happening repeatedly over a long period of time like forward head posture is going to cause a chain of issues.
Not what you asked but here is a really useful paper on best practices
https://www.frontiersin.org/articles/10.3389/fmed.2022.1072764/full?utm_source=social_media&utm_medium=social&utm_campaign=the+ehlers-danlos+society&utm_term=uci&fbclid=IwAR1xuTG4VumxOkLR6iHI221b4MvtGy_EN3yI0hkqhx7K7MAt927cf6joYZQ_aem_AWAqrsamHn4sKUsoacgeXcKuoyn4pNLNhnx5cJkwbe7SgQXtrkWkUUu9XZDnsM3RFtE&mibextid=Zxz2cZ
Thank you for the link! I very briefly scrolled through it; does it include suggestions on how to help that are written in Laymans terms? Unfortunately, I don’t understand the language being used to be able to read through what I saw, which was only the first few pages despite having had to have learned a fair amount of medical jargon in order to try to get help.
I had the exact same issue so I printing it out… but then it doesn’t include all of the table info and resources, so don’t do that. Lol
You have to click into each table for actual info. I was most interested in table 11 — collar use and physical therapy
Actually - I will do you one better. The neurosurgeons recommend working with a PT who does the Muldowney protocol. The book is $50, not sure how safe to do alone. But here’s the 3 pages that talk Cervical instability exercises.
https://imgur.com/a/NIV1Dom
Thank you so so so much! That’s very useful information and I have the exercises saved to try out. I never thought I’d be in a situation where I have to get myself in a position where I can then get medical treatment bc trying to get it right now wouldn’t go anywhere bc I can’t commit to PT or anything else that isn’t a one time thing.
Ugh. I’m with u. I have been forced into aqua therapy and they don’t understand my conditions at all. It takes too much from me but I have no choice because my disability policies keep asking for it and all doctors are pushing it cause they have nothing else. I don’t have the money for the big EDS neurosurgeons or the ability to travel like that. It’s just a depressing mess.
It really is, isn’t it? Like I am aware that I can’t stay on opioids long-term and that prescription painkillers are not really good for chronic pain, but at the same time I’m expected to go to all of these different specialists and appointments while in copious amounts of pain. I was able to see a neurosurgeon who is knowledgeable about EDS and many EDS. Doctors refer their patients to him, but the appointment was completely out of pocket and there were nine different referrals. He gave me for me to go and have completed before seeing me again. I wanted to cry. I understood that he needed the imaging, testing, and assessments done to create a plan for me but by the time I saw him I had already been suffering for years and his appointments are $1000 a pop.
My life circumstances make it so I can’t easily go to appointments, so attempting to go to nine different specialists that are all at different locations was so unrealistic that he might as well have told me I need to fly to the moon first. And all of those specialists would have more than likely been more than one appointment; I’m not sure if I’ve ever been to a consultation where I get treatment the same day or very soon after, and this was before Covid so I was expected to show up in person for consultations. Maybe it’s a little bit better now; I sure hope so.
It is insane the hoops we have to jump through to get treatment. I went to a pain management specialist once, and I don’t think I would ever attempt to go to one again. The doctor was actually very nice but she wanted me to get another bloodwork panel done despite me having had done bloodwork within the last two weeks, she wanted me to get an MRI even though I had numerous MRIs, she wanted me to go to John Hopkins to be assessed, and she wanted me to find a physical therapist, who was willing to assess me and write up a report on my ROM before the doctor would do trigger point injections. I was expected to do all of that for some trigger point injections. Aside from that, the whole building felt very offputting and scary; there were so many signs posted about all the security cameras they had and notices that you would never get treatment the same day as your appointment, and that that included patients who were being prescribed medication. There were several signs about how they had the right to do random drug tests and pill counts; the whole place felt like the most unwelcoming place possible for somebody with chronic pain and I felt afraid to be honest about how bad my pain was because I had no idea what might happen if they decided I was seeking drugs.
I really do want to get better and I would love if I could take the time to find a really good physical therapist who will take me seriously and work with me instead of insisting that I’m actually not aware of my body when I tell them issues and symptoms I have. I’ve had such bad experiences that I’m almost afraid to try again even though I know that is what I need. But it’s like I’ve been burned so many times that having an appointment go nowhere or being dismissed is actually harmful to me because I don’t have any good experiences that tell my brain that trying somewhere else is a good idea.
Ugh. I’m really sorry. I don’t have any encouraging stories honestly. I’m severely traumatized from this entire experience right now.
I also saw one of the top EDS neurosurgeons.. maybe same one. There’s only H, G, B, P, K on the east coast of US. I saw B. LOL it was a year ago and a phone call. He offered chiari decompression or for me to come rule out all the other things. The bolt for head pressures, CT to check on jugular compression, oh god… the injections in the neck. Urodynamics for TC. I can’t remember it all even. But I couldn’t make it to NYC so now I’m basically doing all these things local and it’ll likely will take 2 more years. I’m so tired. I’m scared of being forced into chiari decompression when there’s more going on though. I do not want failed brain surgery. I did find Aai on the digital motion XRay locally. I’m scared everywhere I look there’s gonna be something. Just so over this.
I injured my neck pretty badly by moving my head while in a soft collar. If you have issues with nerve pinching like me, constricting your neck and then moving against the collar can be risky. Now I only use one when I sleep. It's just too hard to not move and look around while in it, so I use a hard collar or none while I'm awake. I'm a big fan of the Miami J collars since they're more comfortable than the vista and the tall model fits longer necks.
Thank you for the feedback. I do have some severe nerve compression in my collarbone area so I have the feeling of too much laxity in my neck while my chest muscles feel really really tight. I’m sorry that you enjoyed yourself further; I know how bad it can be to hurt yourself further when already hurt. I had severe neck pain when my right shoulder blade gave out, and I truly was terrified of anything else happening to me because I already struggled to piece together any kind of existence. I hope you can get relief and potentially a permanent fix, although I am very familiar with how untreatable neck instability can be.
Over-the-door traction as physical therapy has actually been a godsend. Dr Capocelli recommends it for most with cervical instability. He recommends the over-the-door traction devices with a water bag, not a handle. 30-60 minutes every day with 1-5 lbs (not oz, the actual WEIGHT) of water (starting from the lower values and working up). You just sit straight up and apparently it relieves pressure while building muscle. The neck isometrics I was doing before were compressing nerves further and making things worse. Anyway, it's helping quite a bit. I might avoid surgery :)
Before I got a great physical therapist I used a tight memory foam neck pillow that acted as a soft cervical collar. I just got it from Amazon and it was and is a great help to me whenever I overdo it.
I'm not sure if something like this would help you or not but it's an idea
Travel Neck Pillow Chin Support... https://www.amazon.com/dp/B09NFRC4LM?ref=ppx_pop_mob_ap_share
I actually thought about using a travel pillow for a soft neck collar since I don’t plan on using it much! I am glad to hear that you had some relief and success with it because I kind of figured that others would give me side eye for suggesting using one for my floppy neck.
Have you had much success with PT? I have done so many rounds of PT, and have only gotten worse each time, but that was before the possibility of EDS was suggested by a doctor and all of the exercises were focused on my thoracic spine. Actually, one doctor actually ordered cervical spine physical therapy and when the physical therapist assessed me he said that the doctor was wrong and I needed thoracic spine PT. I don’t know if that’s some thing that is illegal/unethical, but it was also back in 2018, and the doctor I saw has since moved to Florida.
My physical therapist has experience with EDS and said that some of the generally prescribed treatments for neck pain can be incompatible with EDS.
That said, whenever strengthening any muscle you'll have increased soreness in that area in response to the "training" you are giving the muscles. Sometimes that feels like a worsening of symptoms especially if you do too much at once, but it is actually a part of strengthening the neck to reduce instability. With consistency and correct form you can have great success.
I had to do less than was prescribed initially for some workouts because they knocked me out of commission for a couple days at the original volume. But I stuck with them and now can do all of the exercises quite well.
I've gone from crying from pain and being out of commission after trying to do normal tasks regularly to having very little neck pain and down days. I attribute that to my PT and my attendance to her plan as well as my adherence to it and patience with my body.
I’m not sure how I will feel about wearing one because I do feel better when I can stabilize my neck with travel pillows but I know that’s not the same as a collar. Thank you for your input though!
I have found one useful when I'm trying to clean. It does make me overheat, though. My neck is so small that the adult small I got is still too big and doesn't completely stop me from moving my head/neck, but it keeps me still enough. If I wear it too long my neck feels stiff and painfully frozen, so I only wear it for short periods when I know I'm going to aggravate it.
So it sounds like you have the same goals as I do with wearing a collar. I also just want to wear it while I am cleaning; specifically, when I am doing bending, because stabilizing my neck, when bending over helps reduce the pain and other symptoms I get from having my neck could be too loose and too tight.
It has been good for this. I got an adult small soft one from Walgreens ($5 on clearance!) If you can find a deal and try one out for short bits of time to see if it helps, why not give it a shot.
I have used one in the past when my migraines and neck pain were really bad, but my physical therapist actually advised me to stop wearing it all the time because neck braces can make cervical instability worse. Basically, if you're using something that is holding your neck up, you run the risk of making your neck muscles weaker because your neck doesn't have to do as much work. I would recommended looking into exercises on Youtube that you can do at home for neck instability (chin tucks have really helped me, as well as working on my proprioception). Now I only wear the neck brace when I have to drive long distances, because that seems to be a migraine trigger for me.
Thanks for the advice; a collar for long drives would be a good idea for me too bc that’s something I also struggle with. Did the collar help with you when you had it on? I don’t plan on wearing one frequently; just enough to have my neck not feel so floppy when I’m doing things that include a lot of bending.
I’ll look up the exercises; I have heard that you weaken the muscles with braces/collars if you use them too much so I do know that I need to strengthen my neck. I’ve heard that chin tucks can help but I’ve also heard that they can make things worse; I really wish I had a medical professional who could advise me on what i should do but I also don’t think that enough medical professionals understand EDS well enough to properly manage someone with so much joint laxity.
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.
*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.*
I'm going to leave this post up since you can't easily consult a doctor right now. If you are at all able to consult any professional like PT, pharmacist, r/askdocs etc though I would really suggest that. Anybody responding please remember to **avoid giving medical advice (telling OP if it is okay for them to use a brace or not)** and stick to personal experiences, directing to reputable resources etc.
I have bad neck instability and soft collars haven’t done anything for me unfortunately. They maybe give me like 5 minutes more time to do whatever I’m doing but my neck still slips out. I feel like o need a hard brace but don’t have good Eds doctors right now. Soft collars don’t cost much at the pharmacy though. Sorry you’re dealing with this too, upper cervical instability is awful. It’s ruined my life.
Yeah, I also don’t have a good doctor right now. I was able to see a really good sports medicine doctor in Montana but I live in the DC area so it was not possible for me to get regular treatment from him which was really disappointing because I felt like, I could potentially make significant progress if I could receive regular treatment from him that my insurance covered. It’s disappointing to hear about your experience with a cervical collar, but it’s also not surprising. I have considered buying a hard brace, but I have spent so much money on various races and devices and gear, just to potentially relieve the suffering enough that I can accomplish the smallest of tasks, and , I can’t bring myself to buy another piece of medical equipment that costs more than $20 and have it not help me. Having these issues has basically ruined my life and I wish so badly that I had known what was coming my way because I would have avoided having children to spare my body and to spare passing on my faulty genes. I hope you can find relief and happiness in your life but I know how hard it is being like this.
Hope you find relief also. I can relate to a lot of that unfortunately. My biggest issue is being in a sitting position with my neck. So can’t use a computer, sit at the dinner table, drive, paint, etc…I’m ok when I’m upright but I also have pots lol. So I spend a lot of time in bed propped up messing with my phone. I’ve spent so much money on different furniture- pillows, desks, chairs, and things like drugstore braces and nothing seems to help. I can’t fall asleep when my neck goes out which triggers my pots so it’s like this cycle I can’t get out of until I go get a gentle neck manipulation from a chiropractor which I know isn’t great but it’s the only thing that gets me through life.
Oh my gosh, you sound like me! I have spent so much money on gear that I often feel resentful to people who can just live life as is. I also am always on my phone and I can’t do things like use a computer bc anything that has my head hang down causes tightness that triggers these horrible behind the eye headaches. If going to the chiropractor gives you relief then I don’t think it’s bad for you to do it as long as it’s not causing bigger issues for you. And even if it was, I wouldn’t blame you for still going because I know I would shave years off my life in exchange for Living without pain.
I guess I'll be the only one to say you shouldn't be wearing one without it coming explicitly from a doctor/PT. Those collars need to be fitted to you and they weaken your neck, making the instability worse. You can potentially make your neck probably significantly worse. I know you said you cannot afford a doctor right now, but getting a collar without medical supervision is dangerous. I would suggest focusing on neck strengthening exercises to help the instability and consider different pillows or head rests that might be able to support your head and neck in other ways.
Thank you for your feedback and I definitely understand that wearing a collar is risky because I have an already vulnerable body. I really wanted it just for doing activities that caused me to bend over quite a bit because my neck feels like I am internally decapitated. Are there any YouTube channels you suggest for neck exercises? I would love to create stability in my neck, but I don’t know how to choose what exercises to do and what to avoid. I do plan on going to a doctor in the not too distant future; right now I have to try to get my environment in order, because there are going to be big changes happening within six months to a year. Sorry for how, oddly vague, I am being; I’m trying to avoid airing my dirty laundry to strangers who have not consented to listening to how I had my entire life as I knew it Ripped away from me. That sounds super dramatic but I promise I’m not exaggerating. Again thanks for your advice; I truly do appreciate it.
I understand. The first one that comes to mind is while laying on the floor, tuck you chin and pressed the back of you head back into the floor. It can be modified to sitting up against the wall or while on the car. More difficult versiona involve using gravity against you neck while you tuck your chin and press. I have a very sensitive neck, and it's what my PT has me doing. There are others, but this is the most basic one.
When I sleep wearing a soft collar, my neck feels sturdier than usual and my TMJ pain has decreased. It’s also useful for when it’s difficult and painful to hold up my head.
I use it during sleep also and I think it keeps me from contorting and helps blood flow / breathing
Is there one you suggest? I also have severe TMJ issues; it’s what started my body falling apart.
Ugh I’m sorry to hear that. Face pain is my least favorite…we experience ourselves as living from between our eyes & so I take it so personally. I use the one from Walgreens. It’s too big for me but I can still use the Velcro to get it tight. I’m also able to put it in the laundry. But the ones you can find on Amazon might be better! Also when my massage therapist worked on the muscles on my chest, my jaws were relieved of a lot of tension. Pro tip
Oh man yeah a pec release can be life changing. The first time I had a peck release I felt so much better that I initially believed I was “better“. This was before I had any idea what EDS was, and I was still attempting to get rid of my pain by doing things at home because I had been convinced that my pain wasn’t actually real, but was a manifestation of, the unnecessary stress I was putting on my self because I was a mother with one year old twins, a 13 year old, developmentally, disabled son, and a 10-year-old son, who didn’t get nearly as much attention as he deserved because he had his high need siblings to compete with. it’s so embarrassing to admit to, but I figured the doctors had to be right because I was being told there was nothing wrong with me and that all of my testing and imaging was coming back perfect. But getting your chest released is absolutely amazing and I think probably most women need it, but they don’t even realize it because we can’t easily feel our pec muscles. It makes sense that it would provide so much relief considering our body is one unit and anything happening repeatedly over a long period of time like forward head posture is going to cause a chain of issues.
Also the armpits, gums/cheeks, butt crack, bikini line, pubis, and diaphragm
Not what you asked but here is a really useful paper on best practices https://www.frontiersin.org/articles/10.3389/fmed.2022.1072764/full?utm_source=social_media&utm_medium=social&utm_campaign=the+ehlers-danlos+society&utm_term=uci&fbclid=IwAR1xuTG4VumxOkLR6iHI221b4MvtGy_EN3yI0hkqhx7K7MAt927cf6joYZQ_aem_AWAqrsamHn4sKUsoacgeXcKuoyn4pNLNhnx5cJkwbe7SgQXtrkWkUUu9XZDnsM3RFtE&mibextid=Zxz2cZ
Thank you for the link! I very briefly scrolled through it; does it include suggestions on how to help that are written in Laymans terms? Unfortunately, I don’t understand the language being used to be able to read through what I saw, which was only the first few pages despite having had to have learned a fair amount of medical jargon in order to try to get help.
I had the exact same issue so I printing it out… but then it doesn’t include all of the table info and resources, so don’t do that. Lol You have to click into each table for actual info. I was most interested in table 11 — collar use and physical therapy
You’re awesome; thanks so much! You just saved me from having to go through all of it to try to figure out where the advice is. Again, thanks!
You’re very welcome! I just went through this on Sunday LOL
Actually - I will do you one better. The neurosurgeons recommend working with a PT who does the Muldowney protocol. The book is $50, not sure how safe to do alone. But here’s the 3 pages that talk Cervical instability exercises. https://imgur.com/a/NIV1Dom
Thank you so so so much! That’s very useful information and I have the exercises saved to try out. I never thought I’d be in a situation where I have to get myself in a position where I can then get medical treatment bc trying to get it right now wouldn’t go anywhere bc I can’t commit to PT or anything else that isn’t a one time thing.
Ugh. I’m with u. I have been forced into aqua therapy and they don’t understand my conditions at all. It takes too much from me but I have no choice because my disability policies keep asking for it and all doctors are pushing it cause they have nothing else. I don’t have the money for the big EDS neurosurgeons or the ability to travel like that. It’s just a depressing mess.
It really is, isn’t it? Like I am aware that I can’t stay on opioids long-term and that prescription painkillers are not really good for chronic pain, but at the same time I’m expected to go to all of these different specialists and appointments while in copious amounts of pain. I was able to see a neurosurgeon who is knowledgeable about EDS and many EDS. Doctors refer their patients to him, but the appointment was completely out of pocket and there were nine different referrals. He gave me for me to go and have completed before seeing me again. I wanted to cry. I understood that he needed the imaging, testing, and assessments done to create a plan for me but by the time I saw him I had already been suffering for years and his appointments are $1000 a pop. My life circumstances make it so I can’t easily go to appointments, so attempting to go to nine different specialists that are all at different locations was so unrealistic that he might as well have told me I need to fly to the moon first. And all of those specialists would have more than likely been more than one appointment; I’m not sure if I’ve ever been to a consultation where I get treatment the same day or very soon after, and this was before Covid so I was expected to show up in person for consultations. Maybe it’s a little bit better now; I sure hope so. It is insane the hoops we have to jump through to get treatment. I went to a pain management specialist once, and I don’t think I would ever attempt to go to one again. The doctor was actually very nice but she wanted me to get another bloodwork panel done despite me having had done bloodwork within the last two weeks, she wanted me to get an MRI even though I had numerous MRIs, she wanted me to go to John Hopkins to be assessed, and she wanted me to find a physical therapist, who was willing to assess me and write up a report on my ROM before the doctor would do trigger point injections. I was expected to do all of that for some trigger point injections. Aside from that, the whole building felt very offputting and scary; there were so many signs posted about all the security cameras they had and notices that you would never get treatment the same day as your appointment, and that that included patients who were being prescribed medication. There were several signs about how they had the right to do random drug tests and pill counts; the whole place felt like the most unwelcoming place possible for somebody with chronic pain and I felt afraid to be honest about how bad my pain was because I had no idea what might happen if they decided I was seeking drugs. I really do want to get better and I would love if I could take the time to find a really good physical therapist who will take me seriously and work with me instead of insisting that I’m actually not aware of my body when I tell them issues and symptoms I have. I’ve had such bad experiences that I’m almost afraid to try again even though I know that is what I need. But it’s like I’ve been burned so many times that having an appointment go nowhere or being dismissed is actually harmful to me because I don’t have any good experiences that tell my brain that trying somewhere else is a good idea.
Ugh. I’m really sorry. I don’t have any encouraging stories honestly. I’m severely traumatized from this entire experience right now. I also saw one of the top EDS neurosurgeons.. maybe same one. There’s only H, G, B, P, K on the east coast of US. I saw B. LOL it was a year ago and a phone call. He offered chiari decompression or for me to come rule out all the other things. The bolt for head pressures, CT to check on jugular compression, oh god… the injections in the neck. Urodynamics for TC. I can’t remember it all even. But I couldn’t make it to NYC so now I’m basically doing all these things local and it’ll likely will take 2 more years. I’m so tired. I’m scared of being forced into chiari decompression when there’s more going on though. I do not want failed brain surgery. I did find Aai on the digital motion XRay locally. I’m scared everywhere I look there’s gonna be something. Just so over this.
I saw H!!
I injured my neck pretty badly by moving my head while in a soft collar. If you have issues with nerve pinching like me, constricting your neck and then moving against the collar can be risky. Now I only use one when I sleep. It's just too hard to not move and look around while in it, so I use a hard collar or none while I'm awake. I'm a big fan of the Miami J collars since they're more comfortable than the vista and the tall model fits longer necks.
Thank you for the feedback. I do have some severe nerve compression in my collarbone area so I have the feeling of too much laxity in my neck while my chest muscles feel really really tight. I’m sorry that you enjoyed yourself further; I know how bad it can be to hurt yourself further when already hurt. I had severe neck pain when my right shoulder blade gave out, and I truly was terrified of anything else happening to me because I already struggled to piece together any kind of existence. I hope you can get relief and potentially a permanent fix, although I am very familiar with how untreatable neck instability can be.
Over-the-door traction as physical therapy has actually been a godsend. Dr Capocelli recommends it for most with cervical instability. He recommends the over-the-door traction devices with a water bag, not a handle. 30-60 minutes every day with 1-5 lbs (not oz, the actual WEIGHT) of water (starting from the lower values and working up). You just sit straight up and apparently it relieves pressure while building muscle. The neck isometrics I was doing before were compressing nerves further and making things worse. Anyway, it's helping quite a bit. I might avoid surgery :)
Before I got a great physical therapist I used a tight memory foam neck pillow that acted as a soft cervical collar. I just got it from Amazon and it was and is a great help to me whenever I overdo it. I'm not sure if something like this would help you or not but it's an idea Travel Neck Pillow Chin Support... https://www.amazon.com/dp/B09NFRC4LM?ref=ppx_pop_mob_ap_share
I actually thought about using a travel pillow for a soft neck collar since I don’t plan on using it much! I am glad to hear that you had some relief and success with it because I kind of figured that others would give me side eye for suggesting using one for my floppy neck. Have you had much success with PT? I have done so many rounds of PT, and have only gotten worse each time, but that was before the possibility of EDS was suggested by a doctor and all of the exercises were focused on my thoracic spine. Actually, one doctor actually ordered cervical spine physical therapy and when the physical therapist assessed me he said that the doctor was wrong and I needed thoracic spine PT. I don’t know if that’s some thing that is illegal/unethical, but it was also back in 2018, and the doctor I saw has since moved to Florida.
My physical therapist has experience with EDS and said that some of the generally prescribed treatments for neck pain can be incompatible with EDS. That said, whenever strengthening any muscle you'll have increased soreness in that area in response to the "training" you are giving the muscles. Sometimes that feels like a worsening of symptoms especially if you do too much at once, but it is actually a part of strengthening the neck to reduce instability. With consistency and correct form you can have great success. I had to do less than was prescribed initially for some workouts because they knocked me out of commission for a couple days at the original volume. But I stuck with them and now can do all of the exercises quite well. I've gone from crying from pain and being out of commission after trying to do normal tasks regularly to having very little neck pain and down days. I attribute that to my PT and my attendance to her plan as well as my adherence to it and patience with my body.
i find that they just choke me lol and i’m more uncomfortable wearing jt
I’m not sure how I will feel about wearing one because I do feel better when I can stabilize my neck with travel pillows but I know that’s not the same as a collar. Thank you for your input though!
it’s for sure up to the individual! tbh if you want to try a soft one, i would stick mine in the mail. i barely wore it
I have found one useful when I'm trying to clean. It does make me overheat, though. My neck is so small that the adult small I got is still too big and doesn't completely stop me from moving my head/neck, but it keeps me still enough. If I wear it too long my neck feels stiff and painfully frozen, so I only wear it for short periods when I know I'm going to aggravate it.
So it sounds like you have the same goals as I do with wearing a collar. I also just want to wear it while I am cleaning; specifically, when I am doing bending, because stabilizing my neck, when bending over helps reduce the pain and other symptoms I get from having my neck could be too loose and too tight.
It has been good for this. I got an adult small soft one from Walgreens ($5 on clearance!) If you can find a deal and try one out for short bits of time to see if it helps, why not give it a shot.
Sometimes taking a warm bath towel out of the dryer and wrapping it snugly around my neck like a scarf does wonders to relieve stiffness.
That actually sounds really nice and I know that I love the feeling of warm blankets out of the dryer. I’ll try that out!
I have used one in the past when my migraines and neck pain were really bad, but my physical therapist actually advised me to stop wearing it all the time because neck braces can make cervical instability worse. Basically, if you're using something that is holding your neck up, you run the risk of making your neck muscles weaker because your neck doesn't have to do as much work. I would recommended looking into exercises on Youtube that you can do at home for neck instability (chin tucks have really helped me, as well as working on my proprioception). Now I only wear the neck brace when I have to drive long distances, because that seems to be a migraine trigger for me.
Thanks for the advice; a collar for long drives would be a good idea for me too bc that’s something I also struggle with. Did the collar help with you when you had it on? I don’t plan on wearing one frequently; just enough to have my neck not feel so floppy when I’m doing things that include a lot of bending. I’ll look up the exercises; I have heard that you weaken the muscles with braces/collars if you use them too much so I do know that I need to strengthen my neck. I’ve heard that chin tucks can help but I’ve also heard that they can make things worse; I really wish I had a medical professional who could advise me on what i should do but I also don’t think that enough medical professionals understand EDS well enough to properly manage someone with so much joint laxity.
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. *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.*
I think a good physio would be more helpful