u/harvestmonster

I started LDN roughly six months ago for ME/CFS and chronic pain from fibro, slipped discs, and osteoarthritis in my spine. I have treatment resistant depression, auDHD, anxiety, and C-PTSD on top of that. Starting out, I was really hopeful that LDN would reduce my daily pain level (7 to 8 normally, 9 on bad days). I've tried gabapentin, pregabalin, NSAIDs, muscle relaxants, physical therapy, yoga therapy, and acupuncture, but nothing has really helped.

I've found my sweet spot at 3mg and it does help. My brain fog is less severe, I experience less PEM, and I haven't had a crash in a while. My orthostatic intolerance issues have slightly improved - milder symptoms and a less severe BPM change. My fatigue slightly improved, but it is still always present and can be exacerbatedby triggers. My mood and sleep were unchanged, but I did start having more vivid dreams whereas I never used to remember my dreams. I kinda hate this effect - I very much do not like remembering my dreams. I completely lost my desire to drink alcohol for several months, but it's returned a little. No effect on my cannabis intake.

I am lucky and did not experience any side effects from the medication. But, I do not seem to have the medication sensitivity that others with ME/CFS report, despite being a poor metabolizer. I do react very poorly to almost all SSRI's and SNRI'S, which has been frustrating and limiting. Usually, though, I can take certain meds with no side effects... but also no effects (such was the case with gabapentin and pregabalin. Might as well been taking sugar pills.)

Disappointingly, my pain is unchanged. LDN hasn't been as effective for me as I had hoped starting out, but it has helped in small ways. It's valuable as a part of my medication management, but I definitely didn't have the wowing, life-changing experiences that some report.

I've read that some people experience pain relief from ketamine therapy, and I have qualified previously for it because of my depression. Ultimately I couldn't follow through with it because I lacked the time and a driver to get to appointments. Maybe it's something I can reconsider down the line.

I've got fibro, osteoarthritis, possibly hEDS, and herniated disc's in my spine. I've always had worse pain on the right side of my body, but I don't know why. Doctors also seem confused by this..

I got fired today. Asking for accommodations feels like a setting a timer for your eventual termination (at least in the South). I'll contact all the nearby employment lawyers again, but I'm pretty sure they'll reject my case again. I'm supposed to talk to the EEOC in December if I can get by that long. If I'm lucky, they'll give me a right to sue letter, but I am not holding my breath.

I guess it's a good thing I met with vocational rehabilitation today? The fellow I spoke with said the job coach I'll be assigned probably won't be very helpful since I'm highly educated. I figured they didn't get a lot of folks with master's degree's when I applied for help. Fat load of good a master's degree is in this garbage job market. It's even less helpful now that I'm significantly disabled. I still feel like I can sustain remote work, but definitely not 40hrs in-person. I don't want to be on disability though. I know I can't survive off of the paltry benefits. I'd definitely go nuts without some work to do. I want to work, but employers don't want to support disabled workers.

I got a good buffer of my meds, but I only have money to cover one month of rent. I've applied for unemployment, and I'll apply for SNAP and medicaid tomorrow. I hate that this has happened to me again.

Not looking for advice, but support would be nice. I was put on administrative leave before a hearing to decide whether I will be terminated. I was in the middle of an ADA accommodation request that got repeatedly stymied and delayed. My eight months at this place tanked my mental and physical health. They've been trying to manage me out for a while, but I endured it for health insurance and rent money.

I've been dissociating so much at work to survive it, which meant my employer had lots of opportunity to scrutinize my mistakes while my health declined.

I'm glad I do not have to enter that building tomorrow. I kept spiraling from the all the stress. I could not have been working in a worse environment for my mental and physical disabilities.

I got two rough diagnoses this year: me/cfs and lynch syndrome. The former has pretty profoundly changed my life in a short amount of time. The latter is a genetic mutation that makes me high risk for a gaggle of cancers. I've been trucking through it on the surface but I'm not coping well. My mother was diagnosed with cancer when I was three and it's always been my biggest fear to get cancer.

To think that I'm going to lose my healthcare and my income right now is terrifying. I've got 13 different doctors I need to see, medical bills piling up, a shit ton of meds to keep me stable-ish, and the job market is shit?

And I'm turning thirty this december...

I cannot believe how awful this year has been. I feel so lost and beaten down.

.

I was diagnosed with both this year and learned, to great dismay, that Lynch Syndrome can make it very difficult to get on disability. I'm still working right now, but I've been missing work a lot, and my employer has threatened to terminate me after denying work accommodations.

So not only am I coping with my loss of function, loss of mobility, and my ability to think; I also have to contend with my greatest fear of getting cancer coming true. All with the knowledge that it'll be even more difficult for me to get disability benefits.

I've dealt with chronic pain, mental health issues, and fatigue for a decade now. That was hard enough, but I still managed to get through college, graduate school, and a two-year job contract. Life with ME/CFS is so so so much worse and I guess I'm only "mild" since I'm still managing to work.

Now I feel like I have no options. I can't keep up full-time in-person work much longer, but I absolutely need health insurance to manage my ME/CFS, my depression and C-PTSD, access hormones for transition, and get the regular screenings I need to watch for a fuck ton of cancers. It doesn't seem like disability will be an option for me and I know it can take years to get. I already know that my bills are too high to survive off of disability benefits anyway. I don't have a family to rely on for support. All the people I know live in poverty.

I'm searching hard for full-time remote work with benefits to keep me afloat. I keep oscillating between grief and a numb acceptance that my diagnoses are a fact that I must accept and manage. I'm turning thirty this year and it feels like too much for one person to cope with. I wish we lived in a world where disabled people could receive the care they need and not be forced into state mandated poverty.

I was diagnosed recently - about two months ago. My doctors and I are trying to treat what we can to improve my baseline (sleep, vitamin deficiencies, pain management, etc.) My biggest issue right now is HR monitoring is pointless due to my dsyautonomia. I can't stay under my anerobic threshold if I surpass it simply by being upright. My cardiologist wants to start me on beta blockers after we finish testing to determine between inappropriate sinus tachycardia or POTS. Did starting beta blockers help improve your baseline energy and fatigue?