#hyper-mobility

[just-a-pot-of-frogs]

I swear to god if my jaw subluxate’s one more time I’m gonna lose it

[wrenfea]

hey! is it ok to ask a wheelchair related question? i am in PT and have muscle atrophy n hyper mobility and nother things (no disorder specified) and I’m told to do these exercises and “it’s good to move when ur in pain and fatigued.” and that it’ll make it better .. but it’s hard to manage and id like to go through daily life not in pain and be able to do more things. i want a mobility aid .. I kinda think maybe a wheelchair would be best bc both of my legs and arms and back are effected.. but I know I’d be told I’m “giving up” and that I will atrophy more… n what I’m thinking is well what if I keep doing these exercises and doing walks but in my daily life also use a wheelchair or mobility aid? would I still atrophy then?.. what happens if u completely atrophy?.. idk it’s just like. when should I use a wheelchair vs not do that and keep doing the exercises to strengthen myself ? idk like when should I allow myself a wheelchair ?

I am not a medical professional so please take my advice with a grain of salt. Also my advice comes from my own personal experience with fibromyalgia, I do not have hyper-mobility, but I do know people that do.

I was in a pretty similar position last year in PT. Everyone kept telling me to keep moving, to push myself to get stronger even though it hurt. I tried, I really did, and it did help for a bit. However once November hit, everything went back to the way it was. Before November I was able to run around in the heat with only minor symptoms as long as I could take breaks. But once November hit I could barely move. So I had to make a choice. Stay in bed and join class virtually, losing the amazing experience of my program at SCBI, or find a way to cope with my situation.

Anon, when I told my rheumatologist, she laughed at me. It's like she wasn't even listening. A 15 minute appointment. I didn't even straight up ask for a wheelchair, I just brought up the possibility of exploring mobility aids as an option. She said I was too young. My therapist? She kept saying it was a terrible idea because it would cause muscular atrophy. This is a lady with no experience with fibromyalgia other than "one of her other clients has it". I decided to stop listening to those who kept giving me advice without actually listening to me and not actually having any experience with my disability (hell, my therapist kept saying I shouldn't call myself disabled as that would be giving up).

I started looking on forums for people with fibromyalgia (stuffthatworks is AMAZING) and was connected with people who have had my disorder for decades. I reached out to someone who was able to give me advice on mobility aids from the perspective of someone with fibromyalgia that had been using mobility aids for years.

I'm not saying doctors don't know anything, but many doctors stick to what they are taught rather than doing their own research or actually listening to their patients. It took a while but I finally have doctors who listen to me. Who actually check up and make sure their treatments are working. Who accepted that they didn't know what to do and would refer me to another doctor instead of throwing medicine at me.

If you aren't actually diagnosed yet, I would be wary about PT. How are they supposed to treat you in a way that won't exacerbate your condition if they don't even know what you have?

Here's my advice, do your own research. Try to find a specialist that deals with your specific issues. For me, I reached out to a spine and pain doctor who referred me to a neurologist. I got an MRI, an EEG, and a sleep study. They found out I had sleep apnea which I had no idea I had. I also went to a chiropractor who did x-rays and I found out my neck is literally backwards. Like I have mild scoliosis. I do PT with the chiropractor which is so much nicer because I use methods that don't cause pain. Everything is so gradual and personalized. Meanwhile my old PT place had me going up and down stairs because I told them I hated stairs. I can actually freaking move my neck side to side now.

Once you have a diagnosis, try to find a community forum for people with your condition. Heck if you already have a pretty good idea you can look at those forums now. Stuffthatworks has multiple communities for different health conditions.

Now about the mobility aids. Honestly? Fuck the whole atrophy thing. Think of it this way, will you really be moving more with it or without it? Without the wheelchair I go out less and stay in bed more, which causes atrophy!! With the wheelchair, I go out more, use my arms and core (manual wheelchair only tho), and have more energy to actually do the exercises my doctor prescribed. It helps me save energy for the things that matter. Wouldn't it be better for me to use my wheelchair to get to class and then do my PT exercises than to suffer through walking to class unaided and then sleep the rest of the day? Do what increases YOUR standard of living. If you can get a wheelchair or other mobility aid, go for it.

There's a reddit forum for wheelchair users that I've found useful for first timers. Also please note it can be next to impossible to get a wheelchair prescription ESPECIALLY as a young person. I would look on Craigslist or charities near you that provide wheelchairs. I got mine off Craigslist for $80 for a $500 wheelchair. For others I was able to find a rollator at goodwill for $40. They also had crutches but I didn't buy those. You can also find canes pretty much everywhere. It's good to have different levels of mobility aids for different levels of pain.

For the atrophy thing specifically, I used a wheelchair in highschool (broken ankle that would not heal) and did notice my legs atrophied a bit. But as long as you monitor your muscle weakness and do exercises that strengthen your muscles along with using the wheelchair, you should probably be fine. I have a rollator so I can take walks and get my legs moving while also still having a place to sit if needed. Also, working with a physical therapist that actually knows about your condition and accepts that sometimes you need to use your mobility device will help. You'll most likely find that it will actually become easier to do your physical therapy exercises once you stop wasting energy on simply getting about.

Sorry this is kinda long, I hope it helps. Let me know if you have any other questions or want me to elaborate on something. Also if anyone who sees this has more advice feel free to add on!

[imtooaromanticforthis]

does anyone have any good resources on hypermobility treatments?

[jesusonafrickinboat]

Random fact about me that I thought I’d share (for no reason whatsoever):

I have hyper-mobility, which means I’m super flexible without trying. I basically never (actually) stretch, but I can touch my forehead to my knees, point my toes (like a ballerina), etc. I’d show pictures, but I’m not super comfortable with showing the internet my face… I should stretch, cause my hamstrings are ridiculously tight, but I would probably be able to do a split if they weren’t.

However, that also means that I can have sore/weak joints, get tired, and get sprains and crap more easily, so it’s not a super great thing.

Anyway, super duper random fact about me \/(•-•)\/

[vintagetattooedbeauty]

I have this dream...

And it's so hard to remember it will never happen. I just want to wake up one day and not be sick...Two years ago I would have told you that my greatest dream in life was to help other people with my words. Today, I'm more selfish and I'm sick of being in pain, now my greatest dream, that can never happen, is to not be sick.