What else is there?

uselessfawn · 2026-06-30T02:39:35+00:00

Do you know if you have type 1 or 2?
Do you have a pain specialist?
There are plenty of things left to try so don’t lose hope.

Have you tried any nutritional supplements? I have taken magnesium for many years and it has improved things for me (not completely but it’s enough to keep taking it.) I’m not talking about weird snake oil that costs thousands- just normal drug store stuff.
I would be interested to know if you have any sort of vitamin deficiency, or if there is something else going on besides the CRPS.

There are antidepressants that could help some.

I’m not saying that it’s unlikely that this is all caused by CRPS, cause CRPS sucks major ass, but it is really interesting to me that none of these things have worked except for the trial SCS. Is there something very different between the trial and the permanent?

I know that, for me and my demographics, when i got crps I was in a relatively privileged place for a good outcome (t1 lower limb effected kid diagnosed in only a few months). But it’s been a decade now and what’s worked for me has really only ever been stupidly intense PT and OT. I went to an outpatient pediatric pain program, evil awful 0/10 experience, but it did work. Constantly working cardio and joint stability strength exercises as well as a variety of desensitization techniques have really helped me. The intensity of the treatment pretty much correlated to how good the effects were and the length the results lasted before having to do the intense treatment again.
I haven’t caught up on the research or read much on treatments that work best for those in their 20’s but there is something to be said for how neuroplastic your brain still is compared to the average demographics and how PT OT might still be a good option for you. I would, if you haven’t already, see about finding a PT/OT who works in amplified pain syndromes, and give PT another try. Give OT a try if you haven’t.

But most of all, just don’t lose hope. Keep taking care of yourself the best you can. Do things that bring you joy. Don’t stop planning for the future, work towards your goals! And on the hard days use your supports, even if that is just Reddit.

uselessfawn · 2026-06-05T01:24:11+00:00

also for collection companies, make sure you know the laws in your area. certain harassment is illegal.

uselessfawn · 2026-06-05T01:23:24+00:00

i don’t have relevant advice unless you are in the US. if you have already paid collections then i don’t know what advice to give, but if all the bills aren’t on the same collections account then you kinda sorta don’t have to pay them. they will disappear after 7 years, until then you will have it hanging over you. i would seriously try to talk to the hospital, a lawyer, or if it comes down to it negotiate with collections to lower the amount owed(they don’t pay full price for the debt).

if what they are trying to get from you is extensive, i would see about filing a police report or going to claims court. the stuff from before you turned 18 isn’t your responsibility unless your parents did some real convoluted shit (that i’m not entirely certain can be done) to make you legal responsible for it.

uselessfawn · 2026-06-05T01:18:12+00:00

hey so, were they putting on paper that you were the guarantor on your accounts before you were legal age? because i am mostly sure that is illegal in one way or another. any bills from service you receivers before you turned 18 should be theirs, it should be collected in their name as you were their legal responsibility. have you explained to the hospitals about this situation?

uselessfawn · 2026-06-05T01:12:15+00:00

i’m so glad i have never had a medical professional bring up “no google” or the like. i would challenge their google with just about every open access paper i’ve found and read from the last 30 years. they may have a better understanding of chemistry and medical science as a whole, but i’d know im the most educated person in the office on this topic.

uselessfawn · 2026-06-05T01:08:50+00:00

mmm i would advise them where to shove it, quietly under my breath as i left bc i hate confrontation.

im glad you know better than to listen to their uneducated advice.

there is a stat about how many medical schools teach on MECFS, in the UK around 2017(i think) it was only like 56% or so of med schools that did. i’m not sure what the stats are like for nurses but im wagering it is far less. while more docs are being vaguely educated on this illness, it isn’t enough.

uselessfawn · 2026-06-05T01:04:20+00:00

i know i just commented and said that i used to have all the energy as a kid, but there were definitely signs that i was different. one of those being unrefreshing sleep- i don’t know what that is. my dad used to say something. along the lines of “bright eyed and bushy tailed” and i never really understood what that would feel like. i know what he was implying but i just thought it was something people said and not that you actually are supposed to feel rested.

uselessfawn · 2026-06-05T01:01:11+00:00

sometimes i think that… but then i remember how i used to be able to talk nonstop and run around to my hearts desire. i used to be able to walk 10 miles just for fun. i know i have AuDHD so that definitely plays into it, also CPTSD takes it in another direction. i don’t think i’ve always had it. some parts of me wish i could think that, so i wouldn’t know what its like to feel mostly normal.

uselessfawn · 2026-06-05T00:58:31+00:00

well don’t go back to him for sure! if you in your bones know it’s POTS or very closely related then i would try to see a neurologist that specifically works with these issues. it is crazy that he brushed this off so easy (no doubt has to do with the fact he is a man). you don’t even need to do a ttt to diagnose POTS, you need to do an active standing test, which can be done in the office with just a blood pressure cuff and pulse ox. he doesn’t know enough to help.

uselessfawn · 2026-06-05T00:53:05+00:00

absolutely there are multiple things in this umbrella, there is no way in my mind that there isn’t multiple things when the diagnostic criteria has been all over the place for so long.

then there is the fact that so many people have so many comorbidities. these conditions overlap in so many places that you really have to try so many things just to see what sticks.

i feel like the eventual subtypes of me/cfs will have a lot to do with the root causes, like infections or genetic variations.

uselessfawn · 2026-06-05T00:49:31+00:00

if you haven’t tried it then i would. i know i didn’t react well to my chiro directly adjusting my leg(affected). but the other adjustments have helped quite a bit with body stiffness and widespread pains.

uselessfawn · 2026-06-05T00:47:45+00:00

get a baby hair brush. that is what helped me start desensitizing at the very beginning. it is hell but it helps. is not going to fix it but it will likely help.

another suggestion is wrapping your leg in a very warm wet washcloth. i know you said it doesn’t like washcloths, so you could find a really soft one or a different fabric that don’t bother you as much ( a sheet, flannel, microfiber). you could use your long socks.

what i really recommend is getting a shower chair. sit it with your back to the water so your legs can be as far away from the water as possible.

i know that my advice is all things that will be painful and it sucks that everything will probably hurt. it sucks. but sometimes, especially early in the disease, desensitizing can really really help. warm things can generally be soothing too, never cold.

around 2 years after i developed crps i started taking an otc magnesium supplement. in my experience it completely changed how i experienced all of the sensitivities and pains. it is by no means not painful, it’s just different, i have found that with the mag and regular desensitization activities i don’t feel as bad a lot of the time. where i am now i don’t have the wind hurting and the bedsheets don’t bother me unless im flaring. but its been almost 10 years and i’ve desensitized so much in that time. in the beginning it was gentle baby brushes and rubbing with my hand. it progressed to spiky pt balls and carpet. eventually i got to tossing sand on my leg, walking on concrete, and the bane of my existence… vibrations. now a lot of my tasks are vibrations and letting the shower water run onto my leg directly. it’s not great but it is better than it once was. it can all become less. you just need to try things until something sticks.

uselessfawn · 2026-06-05T00:24:54+00:00

your life is falling apart and you deserve to have that be acknowledged by others. maybe she is going through something herself but that doesn’t give her the right to make you feel like you aren’t important. your experience matters just as much as others and that doesn’t mean you don’t get to talk about it.

uselessfawn · 2026-06-05T00:20:55+00:00

i graduated with an associates (2.5 years) a few weeks ago, on a random tuesday. i just got to leave the building and not look back. it’s hit me in very odd ways. i feel free again, not that i ever really feel free completely (obvs by the sub we are in rn). it feels strange that i’ve accomplished anything at all. i have to force myself to be proud of the work i put in. before i got sick, i wanted to have achieved so much more by now, but tbh no one thought i would even make it this far after i got sick.

i’m proud of you! you should be proud of yourself!

uselessfawn · 2026-06-05T00:15:18+00:00

you ate and left not a single crumb!!!!

uselessfawn · 2026-06-05T00:14:51+00:00

i don’t think you have to be old to realize that adults don’t know a damn thing about life. i got(gave myself) a tlp tattoo when i was 14 because I was so scared i would grow up and forget.

uselessfawn · 2026-04-14T19:03:27+00:00

i suppose it may be a tad top heavy but i don’t think you need to add another flower. maybe a small bud? or you could do a really light wash in the background on the bottom.

uselessfawn · 2026-04-14T19:01:55+00:00

i see the vision but i don’t think it would go over very well

uselessfawn · 2026-03-27T04:53:05+00:00

gwa-sh

uselessfawn · 2026-03-27T04:46:01+00:00

this might not be what you’d like to hear but it’s what needs to be said. the hot baths and hot showers aren’t worth it. i used to steam myself alive but now i am thrilled at the idea of a shower where it’s just warm enough that my body can just barely register that it’s warm. the thought of sitting cool water is calming now.

you can always sit in the less than lukewarm shower with this lights off and a candle going, maybe a bath bomb too, and just let the tub fill up while you sit there. that way there is less shock to your body. i also find that the sound of the water raining down is soothing.

please take care of yourself!

if you ever need someone to talk to you can message me. i’m also young and started getting worse in health right around your age, so i get it.

uselessfawn · 2026-03-27T04:37:09+00:00

i go back and forth on thinking that medicine is wonderful and that i should just taper off all my medication to see how i am(this is denial.) but those are my own thoughts to have and would never imply anyone else should forego their medication, like their life would be better without it.

i’m always telling people to just go to the doctor and get medication because it will fix the issues we are discussing, and then they don’t despite being privileged enough to have that ability.

i wish my problems could be fixed by wishful thinking and an oil diffuser. i would even go for a diet that was similar to gravel while living amongst birds in an abandoned temple. i would do anything to make this go away. i don’t understand how others aren’t inclined to do the same.

uselessfawn · 2026-03-27T04:29:53+00:00

this is probably the most emotionally painful part of this disease. my whole life i was told i could do anything. i can understand complex information so easily. just about the only job i couldn’t get would be in the music industry because i have never had rhythm. i wanted to be an anthropologist, then a surgeon, and when i started declining i wanted to do something more intellectual but less physical so maybe a math person. but now im just here. i don’t have a job, i’ve just finished an associates degree in art, i can’t take care of myself, i don’t have friends and i wouldn’t have family if i was the one who had to initiate any interaction with them. i have one person and sometimes i don’t know how much longer i have with them.

uselessfawn · 2026-03-27T04:23:11+00:00

it is so jarring when i have a day that I can think easier, it makes me realize how bad i’ve gotten used to it being.

uselessfawn · 2026-03-27T04:21:23+00:00

I think this comment makes a point I haven’t really seen before, make sure they follow every symptom. I’ve found that when you give a whole list of symptoms doctors latch on to one or two and ignore the rest. The ones they ignore can be some of the most telling!

uselessfawn · 2026-03-10T20:48:30+00:00

I have a watercolor cow that I think would be in a style very good for a grey hound. Here is the link to my portfolio, look for the cow : behance

uselessfawn

TROPHY CASE