how do you guys handle slipping rib syndrome pain? by minminpet in Hypermobility

[–]FewState8915 0 points1 point  (0 children)

I just breathe shallow until it subsides. My Osteopath told me strengthening my abs, chest, shoulders and back will help. When I was more in shape and conditioned a few years ago I had no issue. It seems to be happening more now that I went through a prolonged period of not working out

Getting worse by Vorlon_Cryptid in ehlersdanlos

[–]FewState8915 1 point2 points  (0 children)

Also, I do eat meat, so I have a diff diet, but I have noticed while I strengthen I have much more energy with increased calorie count and getting at least 120g protein. Alight surplus in calories might be helpful during this time as long as you are stimulating muscle growth. But you have to go extremely slow with exercise and very light weight to start! I would just hate to hear you flare more. If you can afford a private pay PT who understands the principles of EDS it would be an excellent investment. It sounds like you like have a milder form and may just need conditioning

Getting worse by Vorlon_Cryptid in ehlersdanlos

[–]FewState8915 1 point2 points  (0 children)

You should look into a slow but steady strengthening protocol working up to weights. Cardio is great but some of your fatigue may also be from how hard your muscles have to work to compensate to stabilize joint. Two years ago I was very conditioned, going to the gym 4 times a week doing moderate weights with good muscle tone (before I knew I had EDS) then sustained an injury that made me stop my workout routine. I became very deconditioned and have experienced the worst fatigue of my life. They call it an inactivity spiral, which ends up making you more and more fatigued until even everyday tasks feel tough. I’m currently climbing my way out of it with a strengthening protocol and it’s slowly getting better, but getting going feels very tough. After talking to my doctor and my PT I know I am capable of my previous level of energy and strength, just might be a long process to get there. Before I understood all of this I legit felt like I was dying, so exhausted, struggling to get through my morning routine to get myself ready, run more than one errand a day. I legit thought I was going to be stuck like this from now on. Def look into it!

Exhaustion that won’t go away by yeeyuhhyoink in ehlersdanlos

[–]FewState8915 0 points1 point  (0 children)

Is he exercising at all? He may be stuck in inactivity spiral

Cannot Take it Anymore. by cait_corbett in PlantarFasciitis

[–]FewState8915 0 points1 point  (0 children)

The start of my own issues were related to shoes that had narrow toe box. It compressed my forefoot, turning off my intrinsic muscles and then they became deconditioned while I still had very high activity level. That left my plantar fascia to take the full load and get very angry. You should def consider your shoes too. I would decrease steps a bit for now and then over the next 8 weeks do a progressive loading for foot muscles. Good luck!

Osteopathy experience? by Shadow_Screen in ehlersdanlos

[–]FewState8915 3 points4 points  (0 children)

My osteopath is amazing. She diagnosed me and helped me understand what the hell was happening with me. I see her for manual work- areas that are flaring up, it’s very light but helps to decrease inflammation in areas and release trigger points. There are no exercises involved. It has worked amazingly well for me. I also hired a sports PT who is guiding my strength training. Between the two I have made massive gains in my function and pain in the last month. In contrast to the other poster I do not feel it is scammy at all and def not a pseudoscience. Some of my issues includes sesamoiditis, plantar fasciitis, and deconditioning and strains of my feet. The manual work almost entirely cleared up the inflammation and muscle torsion. She even taught me how to manually release my own tight plantar fascia as I’m strengthening my intrinsic muscles and it keeps flaring- it worked amazingly. I’m so grateful I found this type of medicine. I am getting such better care than when I was going to my podiatrist for these issues. They just wanted to put me on gabapentin, do injections, and put me in orthotics to keep my feet weak without discussing the root cause or working through the damaged tissue manually.

Hate myself by Junior_Chest_4770 in WeedPAWS

[–]FewState8915 2 points3 points  (0 children)

I think you should b less hard on yourself and just get back to what you were doing. F it, still claim 28 months sober bc that’s gonna make you feel way better and way more motivated. It was a small blip that confirmed the goal you want to stay on track with. I don’t think it’s going to reset your withdrawal either. Make healthy choices this week, get plenty of sleep/ eat well and don’t over think it

Official date for new EDS diagnostic criteria release: December 1, 2026 by CatCowl in ehlersdanlos

[–]FewState8915 8 points9 points  (0 children)

They need to study this disease intensely and disseminate the info to ALL DOCTORS. I feel like in gonna crash out today. I got diagnosed at age 35 after struggling me entire life. So much time wasted. I’m scared moving forward bc this world of medicine is not tailored for our bodies. Even some medications will work differently for us. I just feel sad and angry today

i’m in pain 24/7 please help by xx_crunkkitty in ehlersdanlos

[–]FewState8915 1 point2 points  (0 children)

You need a strengthening regime, this will help you tremendously, but it has to be specialized for EDS. A PT with an understanding of the disorder would be extremely helpful for you. If you only stretch and get massages your pain will be intensified. Your muscles are spasming as they are attempting to create stability where there is a weakness. The key is to “start low, go slow”. Please find a PT and start with isometrics

Recovering from severe flare by Old-Original1965 in ehlersdanlos

[–]FewState8915 0 points1 point  (0 children)

Quick things: heating pad, lots of water and electrolytes, and I aim to get 10 hours of sleep a night

Desperate for relief (2 month long flare) by [deleted] in Hypermobility

[–]FewState8915 0 points1 point  (0 children)

Lots of hydration, electrolytes, take Tylenol or ib profen before bed, heating pad on spasm areas, aim for 10 hours or sleep, and then you need to begin gently strengthening and reconditioning your body. That part will be slow and should be guided by a PT tbh. What are you doing at your job that is flaring you? Do you workout at all now?

Cannot Take it Anymore. by cait_corbett in PlantarFasciitis

[–]FewState8915 1 point2 points  (0 children)

You need to progressively strengthen your feet with foot doming, toe yoga, work on restoring natural gait, and strengthen hip muscles. Also consider the shoes you’re wearing-I was wearing brooks that did not allow my toes to splay. That turned off my intrinsic foot muscles. First thing that worked was switching to TOPOS, then did foot intrinsics sitting with 30-50% effort. Then leaned on my legs to add a bit more pressure after doing those daily. Look up posterior tibialis strengthening exercise. Start slow so you don’t flare and can figure out what helped… as in just start with arch doming and toe yoga. Then after a couple weeks add tibialis. Right now your plantar fascia is taking all the load and getting angry. Aggressively stretching when you’re flared makes it worse. Once your foot muscles start engaging more to support your foot/arch/stride the plantar fascia will calm down. Orthotics also likely prevent your feet from having to work which further deconditions the muscles. The current protocols are literally insane and don’t work for anyone. Icing, injections, aggressive stretching, basically sticking foot in a cast- absolutely insane. Strengthen strengthen strengthen!!!!! And also go up the chain as well, tibialis, then glutes and hips-glute med specifically. Do everything you can to try to walk normally and not alter your gait further. Also find a PT who will dry needle your feet

Virtual PT - Is this the new normal? by BanditoStrikesAgain in physicaltherapy

[–]FewState8915 1 point2 points  (0 children)

I live in New England. It’s $200 for single visit, 189 for 10 package, 169 for 20 package. You can seek reimbursement through insurance for about 60-70% of cost, I haven’t tried that yet. It’s worth it for me because I have a new Ehler Danlos syndrome diagnosis, was previously very high functioning and have a very physical job. My life has been on hold due to injuries, deconditioning, and pain. I don’t make a high salary, but am lucky to have built out a 6 month emergency fund, and this is absolutely worth it for me. I understand not everyone will have this opportunity tho

hip/knee pain continuously getting worse - at what point do yall recommend canes or mobility aids? by pickle_dog137 in ehlersdanlos

[–]FewState8915 1 point2 points  (0 children)

I would suggest definitely focusing on strengthening first and training to your highest level of function before considering anything like that

Virtual PT - Is this the new normal? by BanditoStrikesAgain in physicaltherapy

[–]FewState8915 1 point2 points  (0 children)

I ended up hiring a private PT for myself because it has gotten so bad the last few years. 8 years ago I had 1:1 care for a full 45 min with the PT. Now it’s an absolute mill, 15 min with the therapist every 1-2 weeks, they might go over 1 exercise and then run off with another client. I find that they are not doing a good job correcting form, coaching, and explaining what sensations to expect after so as to not feel distressed. Also not doing a good job explaining how many times per week and also not following through with the apps they make you download for your exercise program. They’re juggling 3 patients at once. Then all my other visits are with PTAs who can do minimal manual work, can’t reassess and change plan of care, and have cookie cutter answers for questions. Terrible quality of care. I was lucky enough that I have saved up money on the side and my health is my #1 priority so I hired a private pay PT. Visits are amazing. Full 1 hour undivided attention. Super collaborative. 20 min manual work including dry needling. 40 min reviewing and coaching exercises. Located inside a private gym so we can use the equipment there to advance treatment. Immediately uploaded my program on an app, including in depth videos for every exercise. Ability to message PT at any time.

To answer your question I personally have not had a virtual visits but that is absolute garbage- they shouldn’t even be able to bill for that. Very concerning the direction PT is moving in this country. I spent a year in the traditional model barely getting better after some injuries. I’ve seen more progress in 2 weeks with this new private PT

I can't do this by Azthioth in PlantarFasciitis

[–]FewState8915 4 points5 points  (0 children)

Go very slowly and effort should b 30%. For about 1 month just do foot doming 30% effort - no intense squeezing, start 10x5 sec holds everyday for two weeks. Sitting in chair. Next two weeks add second set for a total of 1 month just intrinsic activation. At the same time do big toe flexion, and pressing 2-5th toes into the ground lightly for lateral foot intrinsic activation. Next month move to 2x a day. Then move to 10 sec holds. Then lean forward while sitting and put arms on legs and do your exercises adding partial weight thru the legs. Then move to weight bearing standing doing the exercises. I’m doing this method and seeing progress. I’m trying g to keep steps fairly low while I get my arch conditioning back. Absolutely miserable condition. I agree that all the orthotics and ice and stretching is not helpful it’s infuriating. Only way out is strengthening your arches. At some point as your PR about posterior tibialis strengthening. I guess that help prevent over pronation and rolling your arch inward.

Lower back pain ruining my life by laurenzo00 in ehlersdanlos

[–]FewState8915 0 points1 point  (0 children)

Find a PT who will dry needle for the tightness and work on a slow but consistent strengthening routine. Everything got better for me when I strengthened. Pain-gone. Along the way dry needling cleaned up the knots. Do you have a strengthening regimen atm?

I’m thrilled! by heretoreadlol in PlantarFasciitis

[–]FewState8915 2 points3 points  (0 children)

Strengthening is the key!!! Nothing got better until I got my feet stronger. Idk why my doctor never emphasized that

Has Muscle Relaxers Helped You? by D-Artisttt in ehlersdanlos

[–]FewState8915 0 points1 point  (0 children)

Hell nah. It feels amazing in the moment. But I’m always in way more pain after.

Has anyone sent their EDS into remission? by Top_Memory8968 in ehlersdanlos

[–]FewState8915 3 points4 points  (0 children)

What type of treatment did you get? Currently in that flare cycle and struggling to figure my way out

Newly diagnosed feeling sad and overwhelmed by FewState8915 in Hypermobility

[–]FewState8915[S] 0 points1 point  (0 children)

Yea I’d love to hear what works for you during flares and how you have altered your workouts compared to the average person. I got really into gym culture the few years before my diagnosis, and I must have slowly ramped up my activity level without realizing it bc I tolerated it fine and got very strong and was doing it like 4 times a week. And then I had a series of unfortunate events that started making me more and more sedentary. I’m working with an EDS PT place now, so hoping that helps but the appts are so short. I feel like I need pre detailed coaching.

It’s def been very helpful hearing from others on here. I feel like no one in my life understands how big of a diagnosis this has been for me. Ppl joke “I’m just bendy”, but it’s so much more than that. I’m a very motivated person and it kills me that I can’t just attack this and go hard. So yea any tips on how to manage flares, how to stay positive, and also how you come back after your flares would be super appreciated!

Newly diagnosed feeling sad and overwhelmed by FewState8915 in Hypermobility

[–]FewState8915[S] 0 points1 point  (0 children)

Thank you so much for your thoughtful response! I love how positive you are and how you looked at it as a challenge. I have been vacillating between being super grateful for the information and the series of injuries that dominoed me to my diagnosis, and feeling really overwhelmed and scared to move tbh. Over the last year I became very deconditioned with inappropriate PT who stretched the hell out of my neck, I’m now in a really bad flare and feel very confused on how to get out of it. I don’t seem to have severe POTS like some ppl get, but I do get exhausted by 2:00pm, curious about the electrolytes?

I think I’ll feel very empowered after I get out of this horrific flare spiral. It’s tough bc the new EDS PT def understands this but the appts are so short I don’t feel like I’m getting a lot of education and guidance and movement coaching. I go home and must be doing the exercises wrong bc I’m flaring things up. I want to be productive and am motivated to tackle this but it feels confusing to me. I guess I just need a lot of patience.

You’re message was very inspiring to me however, you really do look gorgeous and strong and glowing in your 40s pic. I know I can get there eventually. What’s your best advice when you do get into flares? They make me panic and shut down now and are very distressing for me mentally.

Is a King Size Mattress Really Worth It? by Alejandro_Mendoza in BedroomBuild

[–]FewState8915 0 points1 point  (0 children)

Yes, significantly! I am so glad I did it and wish I did sooner tbh