u/mr_shitt

What are some good jobs for people with dysautonomia and cfs? I’ve worked a warehouse job on my feet for 10hr shifts with a lot of walking and lifting for the past 4 years. But it’s really wore me into the ground especially over this past year. Been out of work for 6 month’s from a bad flare. Trying to find something I can do on days when I barely feel alive lol 🥲. Obviously a work from home job would be ideal but I can’t seem to find anything besides AI training job’s. I’ve thought about maybe trying a delivery driving job. I’ve been starting to feel somewhat decent lately but I never know when I’m going to flare and not be able to work so I’m nervous about doing physical jobs. I’ve only ever worked manual labor and customer service jobs. And I’m almost 39. Not really a tech person or worked with computers much. Hoping to find something that’s low pressure and doesn’t take a lot of metal capacity (if that exists) while I try and focus on recovering. I also thought about maybe like a security job where I can sit down all day. What do you guys that are working with this condition do for work. Also I’m waiting to try midodrine once my prescription gets filled and hoping that helps me get back on my feet and able to function normal again, or at least a better baseline. Any suggestions?

Does anyone have the dizzy spells, feeling disoriented, blood pooling in feet and hands when up right. air hunger/tight chest and throat feeling (almost like asthma) especially after exercise but can also come and go randomly? Or feeling like you’re running on 50% oxygen. But NOT have an issue with heart rate and minimal changes to bp? I feel like I’m alone on an island with my dysautonomia symptoms because it’s not classic pots. And since my tilt table test and all my labs and every test I’ve done are normal no dr’s will treat me or let me try any medications to raise blood volume. But it’s been super debilitating the past 6 months, I’ve had to quit my job. Some days just walking a block to my car I feel like I’ll pass out. It’s terrible. Losing hope. And what has worked for you? Besides salt and compression socks? Please tell me I’m not alone and it will get better 😭😭😭😭😭

I’ve been battling autoimmune symptoms for 4 years now. Not sure if it’s chronic fatigue syndrome or Lyme bartonella babesia. I was tested and treated for Lyme bartonella and babesia by my naturopath with herbal supplements but it didn’t seem to do anything. But my symptoms are migraines, vision problems, light sensitivity , heart palpitations, muscle/body pain, PEM, dizziness , almost passing out, brain fog, extreme fatigue, the list goes on. Two years ago I got diagnosed with type 1 diabetes at age 37. That’s when my dysautonomia symptoms really became an issue. Since then I’ve developed air hunger, swollen throat tight chest feeling that comes and goes. Also feels like I can barely talk without running out of air and feeling exhausted, most the time it feels like I’m running on 50-70% oxygen. My hands and feet swell from what I think is blood pooling. When I’m flaring bad I can see my hands get super white if I put them above my head and when I put them down at my side they immediately get red/pink. I always feel disoriented and heavy when up right and walking around. Some days are better than others and I’ll feel somewhat normal. 6 months ago I flared up really bad and haven’t been able to work. Most days I could barely leave my apartment. Just walking two blocks to my car would make me super exhausted and dizzy. I took a tilt table test at the university of WA and it was normal. I’ve had my heart looked at, brain scan, small muscle fiber tests, heart monitor, infectious disease dr, every blood test, allergy tests, wind test, the test where they hook you up and run on a treadmill. Every thing under the sun every dr and it’s all been normal. But I feel like death and can barely function most days. And because my test are normal no dr will let me try any medications for dysautonomia because I don’t have typical pots and my heart tests are normal. I’m so frustrated and it feels like my life is over. I’m having to quit my job and move back in with my parents at 39 to just hope and pray I either can get help or miraculously get better. I’ve usually been able to tough it out and pull myself out of bad flares but this time it’s been 6 months and now it seems like this is my new baseline. I’ve tried the normal stuff like compression socks and salt but nothing really helps. Does anyone else have dysautonomia symptoms without the typical hr and bp issues? It’s like my blood isn’t circulating correctly to my body so I’m always dizzy and disoriented when upright too long. And my hands and feet swell and hurt. And it feels like I’m on Mount Everest and only getting 50% oxygen. It’s been terrible and I’m losing hope. Left to just suffer because drs refuse to help me. The amount of Times I’ve thought I’d be better off dead in the past 6 months is countless. Sorry if that’s a lot of info in not a concise post but I’m just so lost and sad everyday and after fighting and advocating for myself for 4 years and especially the last six months I’m losing hope. I used to be a freak athlete and now I can barely do anything. Any advice would help. Thanks.