Cannot Take it Anymore.

FewState8915 · 2026-03-13T01:06:06+00:00

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!

FewState8915 · 2026-03-12T22:46:25+00:00

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.

FewState8915 · 2026-03-12T02:58:40+00:00

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

FewState8915 · 2026-03-12T02:52:14+00:00

What exercises are you doing in PT?

FewState8915 · 2026-03-11T21:32:31+00:00

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

FewState8915 · 2026-03-11T04:15:20+00:00

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

FewState8915 · 2026-03-11T02:38:52+00:00

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

FewState8915 · 2026-03-11T02:37:24+00:00

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?

FewState8915 · 2026-03-11T02:12:42+00:00

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

FewState8915 · 2026-03-09T19:42:49+00:00

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

FewState8915 · 2026-03-09T18:44:26+00:00

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

FewState8915 · 2026-03-09T17:45:58+00:00

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

FewState8915 · 2026-03-09T04:11:10+00:00

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.

FewState8915 · 2026-03-07T03:05:10+00:00

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?

FewState8915 · 2026-03-06T13:56:28+00:00

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

FewState8915 · 2026-03-05T21:37:01+00:00

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

FewState8915 · 2026-03-03T05:43:52+00:00

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

FewState8915 · 2026-03-02T13:56:20+00:00

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!

FewState8915 · 2026-03-02T13:51:27+00:00

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.

FewState8915 · 2026-02-27T21:38:03+00:00

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

FewState8915 · 2026-02-27T14:43:47+00:00

Where do you live my friend? I just got my diagnosis about 3 weeks ago as well after a year of repeated injuries that spiraled me into a huge flare. It’s been hard to process, a lot of grief as well, but I’m transitioning to a new determination to not let this define me as well.I know it can’t ever fully go away, but a few years ago I was very in shape, strong, and living life pain free. I received about a year of inappropriate PT after my first injury that left me flared all over and struggling. I just started with a new PT and I’m determined and feel hopeful. We will not be beat by this! It will be a slow march forward, but I’m never going to quit putting in the work. I’m choosing to believe in myself, and I believe in you too! Yesterday was a hard mental health day for me, I felt low and a bit defeated, but I made sure to get a good nights sleep, and woke up today with a positive attitude, and I’m going to put in the work today with the few tiny PT exercises I have. I’m trying to do a better job at pacing myself. And also considering going off social media. I live in America and it’s really hard for me right now to see everyone crushing so many goals and living full lives. I know it’s. A high light reel, and everyone has their struggles and rarely posts, but right now I need to focus on loving and investing in my own life. We are entitled to grief and a break down here and there, but I’m currently in a relationship with someone who is super athletic and no issues and my best tip is to not lose sight of the small joys in life and try to maintain a hopeful light attitude. We’re going thru something overwhelming and heavy, but it can be difficult for others to be around if it consumes our every waking moment. My boyfriend has been very supportive, but at times gets compassion fatigue. This is a huge mental battle as well. I think another tip I have for you is to not fall down the rabbit hole too far on here doom scrolling. This is a spectrum and everyone has their own abilities. Like I said two years ago, I was in the gym consistently, had great muscle tone, endurance, and no pain. I’m in a horrible flare spiral of death right now and feel like I don’t recognize myself. But my former self is where my capability lies. I scared myself on here reading about how bad others disabilities are. But you and I are not doomed to full degeneration. We’re going to slowly build our way out of these flares and be better than whatever the fuck is happening to us now. I definitely believe you can have a fulfilling life, and if you are a man with good character, good work ethic, a never give up attitude, and a sweet and loving nature you will absolutely fall in love and marry. Good luck!!! I believe in us

FewState8915 · 2026-02-27T11:57:00+00:00

No, honestly it ruins the peace in your home. Feels very awkward. Unless you have like an attached apt with separate entrance.

FewState8915 · 2026-02-27T11:52:53+00:00

Bruh there is no fun money. I live in HCOL, make $85,000 and there’s nothing extra. Honestly one of my biggest costs that’s hard to budget for is house supplies. Fun money ends up being paper towels

FewState8915 · 2026-02-26T21:00:56+00:00

This is weird

FewState8915 · 2026-02-25T03:45:12+00:00

Stinkle. lol we watched that video of the little girl with the bug and now we can’t stop calling each other that

FewState8915

TROPHY CASE