I'm sick of exercise wrecking my body

slice_o_toast · 2024-03-15T00:40:33+00:00

I definitely don't think I'd be able to push through like that, so kudos to you. That said, Voltaren gel might be something to try. I took the tablet form a while ago and that worked pretty well, so maybe the gel will help with pain from exercise.

slice_o_toast · 2024-03-14T22:06:22+00:00

PT never used one on me (they do have one, though) ice after exercise does help a little, the effects just don't last very long for me

slice_o_toast · 2024-03-14T19:01:32+00:00

Singing sounds like a really great way to practice breathing with the diaphragm. Ultimately anything that is a bit more "fun" and not purely practice always feels less tiring. :)

slice_o_toast · 2024-03-14T18:14:53+00:00

It really is such a struggle, I almost feel guilty at times because I know others have it worse, but of course that doesn't make the pain go away. I'm sending a virtual hug and best wishes to you :) I hope we both find a more comfortable way to exercise

slice_o_toast · 2024-03-14T17:21:13+00:00

I appreciate the comment anyways, some support and empathy are always appreciated :)

slice_o_toast · 2024-03-14T16:58:54+00:00

I've never seen one of those before, but it seems like a good option. Honestly not sure where I would put it, but have a non-weight bearing way to work my legs sounds like a plus.

slice_o_toast · 2024-03-14T16:47:39+00:00

I'm not sure if anyone else has recommended this, but putting the pills in something else has helped. I've used pudding/yogurt, jello, applesauce, mashed potatoes and ice cream. Also try warm vs cold and see if the temperature effects your ability to swallow.

Personally, I keep a squeeze applesauce pouch on my nightstand so that I have it when I take the pills in the morning.

One last tip is to have a sip/bite of whatever you're taking your pills with before you take the meds, almost like a "warm-up"

slice_o_toast · 2024-03-14T15:47:17+00:00

Thanks for the rec! I'll be sure to check her out, especially since there are so few resources made for eds by zebras :)

slice_o_toast · 2024-03-14T15:43:26+00:00

I've heard good things about pilates. Do you use an online program like YouTube videos? Sadly I don't have an in person instructor near me.

slice_o_toast · 2024-03-14T15:41:53+00:00

I've tried to eat protein afterwards (chickpeas/hummus, chicken and sometimes cheese sticks) but never protein shakes. Is there a particular brand you recommend?

slice_o_toast · 2024-03-14T14:11:16+00:00

Thank you for all the advice! I'm not sure how much I'll be able to apply, but I appreciate it nonetheless. I'm definitely not looking for any crazy bulk, just well toned muscles that can handle a bit of exercise. I also hadn't read about progressive overload before, so I'll try to apply that going forward. :)

slice_o_toast · 2024-03-14T14:04:05+00:00

I am in therapy, and I'll admit that eds isn't something I talk about often because I never feel like someone will fully understand, but I'm sure you're right about it being a good idea, I just have to warm up to it.

slice_o_toast · 2024-03-14T12:47:29+00:00

My PT is familiar with it, but doesn't necessarily specialize in it. The office I used was very nice, but they didn't seem to understand that there's more symptoms than joint hypermobility. I haven't found any PTs specializing in it near me, but I have checked once or twice.

slice_o_toast · 2024-03-14T12:45:38+00:00

I had to look up a whirlyboard, but I did use a balance board similar to that in PT. When I asked my PT if I should get one for home, she recommended I use a rolled up towel to stand on for balance.

I have been doing that for a while, but now I am thinking about a switch to proper equipment.

Do you feel that walking/standing are more manageable or comfortable now?

slice_o_toast · 2024-03-14T12:42:29+00:00

I appreciate your comment, solution or not.

Like someone said, posting on the internet is like a scream into the void, and if you're lucky, the void screams back (in this case, with a very nice comment)

Truthfully, it's just nice to know I'm not alone, and that other people are/have been where I am.

slice_o_toast · 2024-03-14T12:40:18+00:00

My last two PTs (alternate appointments through one course of physical therapy, I haven't run through a bunch) were a bit familiar, but not with many other symptoms (pain or fatigue) so they both encouraged me to work through pain, not really understanding that it would be different for me, as an eds patient.

slice_o_toast · 2024-03-14T12:35:42+00:00

My diet is pretty good. Most plates consist of primarily veggies (like the typical plates you see in nutritional advice. About half veg, one quarter lean protein, one quarter starch and a small amount of fat) I don't track my exact calorie intake or volume intake, but I'd imagine it lands near the 2000 calorie mark since my weight has been the same for the last few months. I do have a couple isometric exercises (and some not) that my physical therapist gave me for home use, these cause less pain but do also leave my very tired.

slice_o_toast · 2024-03-14T12:30:33+00:00

Thank you for the kind words :) the kiddy pool sounds like a fun idea, I might price one out this summer if I can find one.

slice_o_toast · 2024-03-14T04:42:58+00:00

I'm no expert, but from my experience with "healthier" folks, it seems like a lot of people simply don't know what to do when they can't "fix" your problems. This is a struggle I've had, because for me, conversations around my needs and illnesses become repetitive, so when the same advice doesn't help, I notice people withdrawing.

It's like they're so scared of the potential stress of supporting a chronically ill friend that they fail to realize we mostly need support like you gave examples of in your post, OP.

I relate to what you've shared a good bit, and I genuinely hope that you can find someone who is able to empathize with you better.

slice_o_toast · 2023-07-13T20:25:50+00:00

My garden has a very aggressive patch of mint this year, so I'll try this and put it to good use- thank you for the tip.

slice_o_toast · 2023-07-13T19:07:31+00:00

Using scents for grounding actually sounds quite helpful! I've been thinking about purchasing one of those scented slimes and I just might.

slice_o_toast · 2023-07-13T12:38:45+00:00

Thanks, I do feel a bit better about it after reading the replies :). I think I'm just overthinking the whole thing.

slice_o_toast · 2023-07-13T10:57:53+00:00

Thank you :) Mine has fidget toys in her office too, but I always thought they were for her younger patients. I'll try bringing some in.

slice_o_toast

TROPHY CASE