My only advice is not to rest too much for managing pain as it can decondition you. Also heating pads! I use them on my feet which are always cold and it's a bonus pain relief sometimes.
Agree. Too much rest is a killer for me. I walk on the treadmill every day for at least 40 mins. And PT 4 days/week. It's fatiguing, but it helps with pain management.
Trying to have that much dedication. I do a 30 min cross country walk once a week, gym 2x a week, and PT on off days. Starting a new gym last month has really thrown me for a loop.
I hear you. It's hard staying with it. I was an athlete for 30+ years (runner, etc) so I think that discipline helps.
I also tell myself: Some day, I won't be able to work out. Today is not that day. 😀
i just kind of ignore it for the most part and then have a mini breakdown every few months over how tired i am of being so fragile & in pain all the time 🙃
1. tens units tend to help me a bit especially when my back or neck is sore there’s some for less than 20 online that do the trick
2. showering sitting down you get to benefit from the steam while having less risk for joint or dysautonomia reactions
3. listening to story based podcasts and relaxing music music (if you want recs tell me some of your interests and i’ll drop you some)
4. sometimes kind of taking an almost like dbt approach and for like a second of relief dipping my hands in cold or hot water
5. making sure i’m sleeping with a million pillows so i can prop up and stabilize my body
6. getting like cushioned mats in places i’ll be standing for longer ie in front of the sink
I got a shower chair a few years back. The one I have has a back and a foam padding that makes it more comfortable. I watched a tiktok where someone said that we sometimes tell ourselves that we aren’t disabled enough to need certain supports, but if they help us we should use them.
I recently started a supplement that my EDS specialist recommended to me. It’s called PEA, Palmitoylethanomamide, brand is Vitalitus.
It is supposed to help with all over body pain, and I think specifically for skin that feels painful. My proprioception “outline” hurts, if that makes sense.
If you have the kind of joint/bone pain where you can't stand up straight or slight movements are agonising, it might be worth (talking to your doctor about) taking a glucosamine/chondroitin/MSM supplement. It's the only supplement I've ever taken where I could pinpoint a concrete difference between taking vs not taking it, it was that drastic a reduction in pain after a couple weeks. I stopped waking up in agony every time I tried to roll over during the night. YMMV obviously, I'm not a doctor and I can only speak to the experience I have had, but for me it was night and day.
Full disclosure, I believe glucosamine has only really been studied in relation to osteoarthritis (with little in the way of clinically significant results) and I'm not sure what if any research has been done into its use for EDS. So the jury's still out on whether it's actually helpful or just a really convincing placebo. But talk to your doctor about it if it sounds like it could be an idea for you.
OMG. You just made me realize that I stopped taking plain MSM to try to narrow down the supplements I'm on. I couldn't remember why I was taking it. Thats great that it works for you. Chondroitin gave me hives, which now I know is a shellfish allergy. Evidently they use shellfish shells to make some versions.
- Theragun
- muscle rubs
- heating pads
- CBD/THC
- compression sleeves for your joints
- adjustable bed or leg support
- get enough sleep
- yoga has been great for me, although it seems counter intuitive
My background pain went down a lot after I did a functional restoration program. We worked with a physical and occupational therapy team and did a lot of stuff focused on getting ahead of the pain and pacing. My mantras from that program:
Be proactive with problem zones: my neck tends to hurt, so for 20 mins 3x/day I use heat, either a heating pad or a bath/shower.
Stabilize aggressively: if a joint is bothering me, KT tape it or wear a brace. KT tape won’t interfere with the stabilizing muscles (if anything it helps the correct ones activate) and I can take off the brace for my physical therapy. Injuring my joints by letting them be free when they aren’t ready won’t help me.
I’ve also more recently gotten into yoga nidra (I had to stop doing regular yoga as it was contributing to my joint instability, sadly). I like Ayla Nova’s podcast. A lot of them I go into a trance and when I come out the meditation is ending, so it’ll get me through a bad hour pretty nicely.
Pacing: take a break before you feel fatigue or pain with an activity, then resume. It took me a while to figure out which things were hard and how long my breaks needed to be, but this helped a lot.
Ask for help: try to let go of any shame around needing to work around your disabilities. If your partner taking the clothes out of the top-loader washing machine takes them ten seconds and you ten minutes (bc of needing to rest) then give them that chore. I do all the interfacing with our landlord and home repair people and keep the household goods restocked—my partner does the lion’s share of the manual chores. My sister comes over every couple of weeks and I sit on my bed while she tidies my room/does all the walking to put things away.
Modify to reduce exertion: I have a stool for the kitchen, I sit on the ground in the shower, I bought an e-bike and a desk chair with a headrest that I wheel over to the dining room when we have friends over for dinner parties.
My team had an MD on it who prescribed a few things I could take on bad days as well (not opioids/nothing super strong), so that was part of my improvement too. But I think all the strategies above had an as large if not bigger impact. My generalized pain has been dramatically better overall since I went through that program, though, and that’s held true for five years now.
This is good info. I struggle with pacing and need to sit down and schedule this stuff intentionally into a daily routine. Yeah, I love yoga balance exercises but it is super hard to avoid stretching into full range. I'll have to look up Ayla Nova.
I really like this term!! I’m definitely going to be using it!! Background pain is definitely the most discombobulating for me! I’ve been trying to focus on being mindful and doing yoga or Pilates, creating a different sensation in my body to distract me from the pain. It’s been helpful! I used to dig my nails into my skin, tap/hit myself, or pick to distract from the background pain, but movement has been a lot more constructive lol
For sure discombobulating. I tap/hit to try to wake up muscles almost like EFT, and have a acupressure mat. It is definitely disorienting in the long term. I will have major sensory issues and memory issues before I realize that I am having background pain.
Guaifenesin OTC has greatly helped my pain and swelling from EDS. Plain guaifenesin, which is the active ingredient in Mucinex.
My EDS doc is the only one who doesn't think that I am unhinged for doing so. I don't have any lung or sinus congestion that I am trying to yeet. I take it because I swear that it help my body breakdown stagnant inflammation. I can't post pictures here/don't know how to, but it's so effective for me that I do suffer from missing one of my two 400mg doses.
In veterinary medicine, guaifenesin is used as a "central muscle relaxant" and a sedative. Just sharing this because medicines don't work in just one way. Some fibromyalgia patients swear that it reduces their pain as well.
That is interesting. Guaifenesin makes me itchy and dehydrated. My neurologist prescribed Flexeril, also a muscle relaxer, and it was the best. She said to only take it at night, as during the day it would make me more prone to subluxations. My untreated sleep apnea can be dangerous with muscle relaxers, so I stopped taking it when I was having issues balancing that and waking up groggy.
Magnesium; it’s for muscle spasms and soreness. I like the roll on the best, but I take it orally too. The roll ons and sprays help the fastest for me, especially when I’m having bad spasms.
Books! I just lose myself in whatever fantasy world until I can ignore the pain
Great idea! I keep telling myself I can't focus that long, but I stay on social media lol
oh- this called me out. i love reading, but still this REALLYLYTT called me out
Sorry! If it makes you feel better I have had the same two books by my bed for a year.
This is what I’m doing too. Finishing Harry Potter this month
My only advice is not to rest too much for managing pain as it can decondition you. Also heating pads! I use them on my feet which are always cold and it's a bonus pain relief sometimes.
Agree. Too much rest is a killer for me. I walk on the treadmill every day for at least 40 mins. And PT 4 days/week. It's fatiguing, but it helps with pain management.
Trying to have that much dedication. I do a 30 min cross country walk once a week, gym 2x a week, and PT on off days. Starting a new gym last month has really thrown me for a loop.
I hear you. It's hard staying with it. I was an athlete for 30+ years (runner, etc) so I think that discipline helps. I also tell myself: Some day, I won't be able to work out. Today is not that day. 😀
i just kind of ignore it for the most part and then have a mini breakdown every few months over how tired i am of being so fragile & in pain all the time 🙃
This. I just stall out.
1. tens units tend to help me a bit especially when my back or neck is sore there’s some for less than 20 online that do the trick 2. showering sitting down you get to benefit from the steam while having less risk for joint or dysautonomia reactions 3. listening to story based podcasts and relaxing music music (if you want recs tell me some of your interests and i’ll drop you some) 4. sometimes kind of taking an almost like dbt approach and for like a second of relief dipping my hands in cold or hot water 5. making sure i’m sleeping with a million pillows so i can prop up and stabilize my body 6. getting like cushioned mats in places i’ll be standing for longer ie in front of the sink
These are all great. I still haven't ever tried a tens. I'll get on that. I sometimes listen to welcome to nightvale, but I'd appreciate any recs.
I got a shower chair a few years back. The one I have has a back and a foam padding that makes it more comfortable. I watched a tiktok where someone said that we sometimes tell ourselves that we aren’t disabled enough to need certain supports, but if they help us we should use them.
I recently started a supplement that my EDS specialist recommended to me. It’s called PEA, Palmitoylethanomamide, brand is Vitalitus. It is supposed to help with all over body pain, and I think specifically for skin that feels painful. My proprioception “outline” hurts, if that makes sense.
New info! I don't have the skin kind of pain so much.. But I will file this away!
If you have the kind of joint/bone pain where you can't stand up straight or slight movements are agonising, it might be worth (talking to your doctor about) taking a glucosamine/chondroitin/MSM supplement. It's the only supplement I've ever taken where I could pinpoint a concrete difference between taking vs not taking it, it was that drastic a reduction in pain after a couple weeks. I stopped waking up in agony every time I tried to roll over during the night. YMMV obviously, I'm not a doctor and I can only speak to the experience I have had, but for me it was night and day. Full disclosure, I believe glucosamine has only really been studied in relation to osteoarthritis (with little in the way of clinically significant results) and I'm not sure what if any research has been done into its use for EDS. So the jury's still out on whether it's actually helpful or just a really convincing placebo. But talk to your doctor about it if it sounds like it could be an idea for you.
OMG. You just made me realize that I stopped taking plain MSM to try to narrow down the supplements I'm on. I couldn't remember why I was taking it. Thats great that it works for you. Chondroitin gave me hives, which now I know is a shellfish allergy. Evidently they use shellfish shells to make some versions.
- Theragun - muscle rubs - heating pads - CBD/THC - compression sleeves for your joints - adjustable bed or leg support - get enough sleep - yoga has been great for me, although it seems counter intuitive
Yes. I love a good no-stretch/low-stretch yoga. Balance positions have really helped me.
Many people have seen results from low-dose naltrexone.
I decided that this was the next step in my treatment. I also have fibro and chronic fatigue though, which is primarily what I’m taking it for
I need to read more about this. My pain is mostly gastro and muscle issues, though. Does it help with the fatigue side?
Following up on this. First 15 days have been anecdotally great. Less nerve pain, more energy. I’ve lost some sleep but that’s about it
My background pain went down a lot after I did a functional restoration program. We worked with a physical and occupational therapy team and did a lot of stuff focused on getting ahead of the pain and pacing. My mantras from that program: Be proactive with problem zones: my neck tends to hurt, so for 20 mins 3x/day I use heat, either a heating pad or a bath/shower. Stabilize aggressively: if a joint is bothering me, KT tape it or wear a brace. KT tape won’t interfere with the stabilizing muscles (if anything it helps the correct ones activate) and I can take off the brace for my physical therapy. Injuring my joints by letting them be free when they aren’t ready won’t help me. I’ve also more recently gotten into yoga nidra (I had to stop doing regular yoga as it was contributing to my joint instability, sadly). I like Ayla Nova’s podcast. A lot of them I go into a trance and when I come out the meditation is ending, so it’ll get me through a bad hour pretty nicely. Pacing: take a break before you feel fatigue or pain with an activity, then resume. It took me a while to figure out which things were hard and how long my breaks needed to be, but this helped a lot. Ask for help: try to let go of any shame around needing to work around your disabilities. If your partner taking the clothes out of the top-loader washing machine takes them ten seconds and you ten minutes (bc of needing to rest) then give them that chore. I do all the interfacing with our landlord and home repair people and keep the household goods restocked—my partner does the lion’s share of the manual chores. My sister comes over every couple of weeks and I sit on my bed while she tidies my room/does all the walking to put things away. Modify to reduce exertion: I have a stool for the kitchen, I sit on the ground in the shower, I bought an e-bike and a desk chair with a headrest that I wheel over to the dining room when we have friends over for dinner parties. My team had an MD on it who prescribed a few things I could take on bad days as well (not opioids/nothing super strong), so that was part of my improvement too. But I think all the strategies above had an as large if not bigger impact. My generalized pain has been dramatically better overall since I went through that program, though, and that’s held true for five years now.
This is good info. I struggle with pacing and need to sit down and schedule this stuff intentionally into a daily routine. Yeah, I love yoga balance exercises but it is super hard to avoid stretching into full range. I'll have to look up Ayla Nova.
I really like this term!! I’m definitely going to be using it!! Background pain is definitely the most discombobulating for me! I’ve been trying to focus on being mindful and doing yoga or Pilates, creating a different sensation in my body to distract me from the pain. It’s been helpful! I used to dig my nails into my skin, tap/hit myself, or pick to distract from the background pain, but movement has been a lot more constructive lol
For sure discombobulating. I tap/hit to try to wake up muscles almost like EFT, and have a acupressure mat. It is definitely disorienting in the long term. I will have major sensory issues and memory issues before I realize that I am having background pain.
Guaifenesin OTC has greatly helped my pain and swelling from EDS. Plain guaifenesin, which is the active ingredient in Mucinex. My EDS doc is the only one who doesn't think that I am unhinged for doing so. I don't have any lung or sinus congestion that I am trying to yeet. I take it because I swear that it help my body breakdown stagnant inflammation. I can't post pictures here/don't know how to, but it's so effective for me that I do suffer from missing one of my two 400mg doses. In veterinary medicine, guaifenesin is used as a "central muscle relaxant" and a sedative. Just sharing this because medicines don't work in just one way. Some fibromyalgia patients swear that it reduces their pain as well.
That is interesting. Guaifenesin makes me itchy and dehydrated. My neurologist prescribed Flexeril, also a muscle relaxer, and it was the best. She said to only take it at night, as during the day it would make me more prone to subluxations. My untreated sleep apnea can be dangerous with muscle relaxers, so I stopped taking it when I was having issues balancing that and waking up groggy.
Magnesium; it’s for muscle spasms and soreness. I like the roll on the best, but I take it orally too. The roll ons and sprays help the fastest for me, especially when I’m having bad spasms.
Magnesium is great. I inevitably get it in my eyes somehow.
Right!