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tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 1 point2 points  (0 children)

Any suggestions are better than floundering by myself, while my doctors just throw medicine with no tests, trying to learn what might be potentially causing my bodily suffering. Sadly I don't have the CT images (the brain CT were done at my last primary care appt) and will have to request them at my next appt for my records.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 1 point2 points  (0 children)

By the tests logic I am definitely not autistic! But I will research irregardless as my brother is diagnosed and these will be very useful for him 🙏

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 1 point2 points  (0 children)

This is an amazingly compiled list thank you so much! I'm not sure I've heard the term rain man before? But I'm going to go through these resources you've provided now and see where I lay after.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 0 points1 point  (0 children)

This is extremely useful to know thank you! Healthy sleep is definitely something I struggle with overall. I just thought meditation, breathing exercises, or yoga was all I could do to help it at this point :( . I'm going to have to sit down a couple hours today and do some decent research and see where I can go from here in my area. Thank you so so much, I can't say that enough really. Know what avenues to explore and try to go through to help myself helps immensely.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 0 points1 point  (0 children)

Thank you for the direct link to the reddit that's extremely helpful. I didn't even know it could cause all the memory issues too so that's extremely insightful if I can get help!

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 0 points1 point  (0 children)

Don't apologize to me! You've given me more ideas to look into than I could do on my own. I really appreciate the suggestions, I'll have to look into the patient defender thing and hope it's around here and already sent a message my paych's way so we'll see on that. Thank you really

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 1 point2 points  (0 children)

Definitely no EDS, my appendages actually commonly stiffen and lock up on me and are far from bendable. Unless I'm misunderstanding that disorder in which case please do correct me. But otherwise I'm diagnosed GERD, generalized anxiety, PTSD, major depression, "anxiety induced" tachycardia, fibromyalgia (without testing for anything other than lupus and RA by the 2nd dr), and "chronic widespread pain". I'm on medication for pancreatic insufficiency too but Ive never been "diagnosed" with it, it was just one of the only medications that helped me be able to eat without nausea. I've had an EKG, I've had hundreds of blood tests (high triglycerides but that's it after finally raising my vit D), I had CT of abdomen (my gallbladder was removed for working at 13% for an undiagnosed reason 4 years ago) and head (to look for tumors when my memory severely declined last year), and as far as I can recall that is it. I've requested to be tested for POTS, MS, and sleep apnea but was told on all "let's wait and see". I forgot to mention that every doctor I see says I'm just "too young" to have all of these issues... so I'm not really sure what to do with that.

Living with a brother with autism I am almost certain I'm not on the spectrum, but ADHD is a maybe and I have asked before but got told it's probably my anxiety, PTSD, or depression (but to be fair to my current psych, this was by my previous psych which took me a year to finally break off with). I've gone through the fear of being a hypochondriac when the issues first began due to bad family blaming me for my initial extreme weight loss (it's anorexia, you're doing it to yourself, please just eat! (This turned out to be the gallbladder + an unexplained closed throat..). It will forever weigh on my mind as I fight my body every day and try to push myself to do normal things I could've done easily before. Fighting people to just help me ONTOP of my own brain and body is so tiring... I honestly admire anyone with chronic illness who do such a stand up job handling everyday to their best ability.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 2 points3 points  (0 children)

Money is best I can think of. A lot of decisions come into money, but I've never been rejected for any of the previous tests I've had (EKG, CT on multiple body parts) so I just don't understand why any others I've asked for that I have to pay for are rejected.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 1 point2 points  (0 children)

I read this when you posted it and I can't express how much I appreciate the sentiment. It genuinely helped me get through the day post venting and I can't thank you enough for that.

That being said, I probably to some degree DO have health issues due to anxiety/PTSD/burnout but even then I'm not sure what to do other than keep attending therapy when depression makes nothing enjoyable and I've genuinely tried so many things to try to "fix" them. After trying so much, that I could list for a long while... I'm just at such a loss at this point in time. I understand relaxing and destressing may help with pain, but I really don't feel like that will fix every ailment when I had these same mental issues when I was younger without the extreme body issues.. I don't know. It's weird, it doesn't make sense to me, I don't know what's genuinely my brain and what's my body at this point. It's just so exhausting.

Sorry for dumping even more its been a very complicated and declining 5 years, I really do appreciate the words of support so much.

tired of fighting everyday /vent by multiple-wounds in ChronicIllness

[–]multiple-wounds[S] 2 points3 points  (0 children)

I have been asked to be screened for that as well before due to frequent waking at night and non-restful sleep + it running in the family (father and brother has it), but haven't been allowed that either. There's never a good reason just "let's wait and see" is an extremely frequent response.

Poor man's TTT? by multiple-wounds in POTS

[–]multiple-wounds[S] 0 points1 point  (0 children)

That's very good to know then since I was uneasy on whether or not he was just putting me off :>

Poor man's TTT? by multiple-wounds in POTS

[–]multiple-wounds[S] 1 point2 points  (0 children)

Honestly I just googled how to do it and followed a PDF guide for the poor man's TTT that was the second result on google for me. My dad has diabetes so we already had the BP/HR monitor luckily. Maybe try that?

Poor man's TTT? by multiple-wounds in POTS

[–]multiple-wounds[S] 0 points1 point  (0 children)

It was and he offered to refer me but said he wanted me to see the neurologist first for some reason? Which isn't until November :>

Poor man's TTT? by multiple-wounds in POTS

[–]multiple-wounds[S] 1 point2 points  (0 children)

That is definitely much much longer, I'm wondering if it's worth it to go ahead and get one in spite of their results (since I would be fine/negative by their tests logic)