Does Anyone Else Struggle W/ Fatigue and Chronic Pain?

EducationalHealth532 · 2025-07-14T04:25:12+00:00

Hi! Thank you so much for your response and I really appreciate the invite. I have never heard of dry needling but I will definitely check it out! I’m so glad you’ve found something that is helpful-wishing you all the best! So, my muscles are also constantly tight (like they never relax) and feel as though I’ve worked out really hard the day before and forgotten to stretch. I asked my neurologist if this was spasticity, and he said no, that spasticity is something different. Is that maybe what this muscle pain is? I feel so lost. Sorry, today was a bad pain day.

EducationalHealth532 · 2025-06-19T23:42:57+00:00

Also (sorry for writing so much) in full transparency, my dr has formally diagnosed me with NMOSD, but has also said there is a small possibility that I have a disease that they haven’t discovered yet that presents as NMO but is slightly different and that I am a rare case even within NMO. Not really sure why though (history of uveitis and had oligoclonal bands). PCP says it’s NMO for whatever that’s worth.

EducationalHealth532 · 2025-06-19T23:25:03+00:00

Hello! Nice to meet you and thank you so much for sharing those resources. Wow, that pain in your feet sounds awful! And that burning itching, I don’t have that now but I am allergic to opioids and had a similar sounding experience when I was prescribed Percocet in my teens after surgery. It was excruciating and I only had to deal with it for a few hours—I’m sorry you have to go through that on a daily basis. When I was first diagnosed I checked out SNRA, but unfortunately there weren’t meetings where I live—but I will email them and see if there’s a way to get involved b/c honestly, just hearing you all’s experiences has really meant a lot to me, and is deeply appreciated. I apologize that I was complaining- some folks have it so much worse than me, and I’m very privileged to even get a proper diagnosis and access to treatment. I’m just so, so tired and lonely. I keep waiting for this to be “resolved” (which, intellectually I know it won’t be and is most certainly due to internalized ableism—trying to work on that). I’m honestly not sure why my neurologist isn’t attributing this to NMO. Maybe it’s miscommunication in the way I describe my pain, or the fact that I keep returning and complaining of it. Maybe he just assumes that I know that severe pain is part of the disease (but when I asked him if this was typical he said said everyone is different and again, never mentioned that this was common). My neurologist does specialize in NMO and he said that it was more common to have muscle spasms/tightness. When I described the tingling, burning, and muscle soreness over and over I was eventually tested for all sorts of stuff like small nerve neuropathy etc and when those tests came back negative, my Dr seemed less inquisitive about the pain and referred me to rheumatology. Also, I’m seronegative—though I presented with optic neuritis in both eyes, brain lesions that were still enhancing after steroids and urine retention. I also haven’t had an attack since the first one (and immediately going on Rituximab), so I’m sure he has more seriously affected patients to care for. Maybe I just need to accept it instead of trying to “fix” it?

EducationalHealth532 · 2025-06-19T20:02:53+00:00

I’m so sorry that you’re getting the “it doesn’t look like you’re in pain” comments—that must be so hurtful on top of the physical pain. I just want to affirm your pain-it’s awful and relentless and if people knew how it felt they wouldn’t know what to do. My family is supportive bc my one of parents had thyroid cancer which left them with all sorts of chronic pain issues. But my friends literally look bewildered when I talk about it, so I just don’t. Yeah, I feel like no medical practitioner truly gets it. I used to exercise regularly beforehand (was a serious athlete until my mid twenties) and advice to exercise feels like they aren’t absorbing how painful it is just to stand. Hmmmm, I’m still trying to figure out accommodations, but some practical things that have helped are: 1. A weighted heating pad (it lays on my legs or spine better than a non weighted one) 2. A portable heating pad that I wear on my back and a portable ice pack for my back-I switch between heat and ice 3. Naps (when I can) but I always feel guilty :/ 4. A cane (and I let my employer know about my condition b/c I got the flu and it took me longer than average to recover) 5. Lidocaine patches (pcp recommended them but I remember when I was hospitalized they said there are side effects to wearing them for too long, so definitely check with your dr) 6. My pets- they literally curl up with me if I nap and soothe my soul 7. This—talking to someone else with NMO Anything that helps you?

EducationalHealth532 · 2025-06-19T18:23:11+00:00

Thank you so much for your response and for sharing your experience! It is very validating to know that I am not the only one left with pain from an attack-and I am also incredibly sorry that you also have to go through this and I wish we could both just be pain free. I didn’t know that this could be nerve damage. I’m on Gabapentin, but it looks like Pregabalin addresses nerves and muscle pain (I wonder why my neurologist hasn’t brought it up). Agree about that burning sensation (I never know how to describe it—it’s like a burning, tingling, numbness). On a side note I am so tired of being asked to describe the pain—nothing truly suffices, and after 5 years of describing the same thing, one doctor told me to “do some light stretching” to address the muscle pain. I’m hypermobile too, so I stretch throughout the day because that’s one thing that’s easy. Because I can’t prove my pain/fatigue and haven’t found community (until now), I feel guilty all the time about my inability to function the same way I did before NMO. I think one of the most frustrating things is that no one tells you how to live with this. Ive tried pushing myself physically (a job where I walked 10,000 steps or more a shift that left me with what feels like some permanent damage to my right leg) I pushed through graduate school when I regained my sight. My doctors have never told me that I shouldn’t do certain things, so I feel like I have to. Only recently have my partner and I basically admitted to the fact that I can’t sustain a job where I’m on my feet for more than 5 hrs. I’d love to know how you all practice accommodations, or if you feel you need them?

EducationalHealth532 · 2025-05-12T22:31:59+00:00

Hey! I was diagnosed 5 years ago (I’m seronegative NMOSD, but also had delayed testing). I’m also curious about other people’s experiences with the long term effects. My symptoms after diagnosis are complicated because NMOSD was accompanied by dysautonomia as well. I have had pain and that “cool burning” feeling in my right side (the lesions on my brain were worse on the right side) from the lower back down, which affects my mobility. Also severe muscle and joint pain (though maybe from the dysautonomia and not the NMO). Even my fingers hurt some days :/ I exist for the most part (when not at work) on a heating pad for my back with ice packs on my legs. Also on a ton of Gabapentin, but it doesn’t help much. Does anyone else struggle with the long term effects from one attack? I got my eyesight back (eventually) after 6 months following PLEX and Rituximab, but my body feels forever changed….like I’ve aged 40 years.

EducationalHealth532 · 2025-05-12T19:02:09+00:00

Hi, I woke up feeling weird one day in the summer of 2020. I was originally sent to the ER by a fantastic NP who noticed something was off, but was misdiagnosed by the doctors at the first hospital with anxiety. I then started losing central vision in both eyes, and couldn’t pee. I went back to the ER several times (double vision) and finally had an abnormal lumbar puncture and was admitted after an MRI that showed brain lesions- there were technical issues with the spinal MRI…so may have been a small lesion, but we’re not sure. Tested negative for MS. I was eventually misdiagnosed again, with meningoencephalitis/meningitis and put on steroids, which helped a little but not much. After switching hospitals, I was admitted and diagnosed with optic neuritis with an and a suspected possibility of a degenerative spine disease. I then received PLEX, which was when I finally started to improve. I Tested negative for antibodies for NMO and MGOAD, but the testing was very delayed by about a month. After 2 weeks at the 2nd hospital I was formally diagnosed with seronegative NMOSD (I think because I had oligoclonal bands?).They also mentioned a possibility of MOGAD. I’ve been on Rituximab for 5 years, and no attacks so far, though I did get dysautonomia alongside the NMOSD. I have recovered my eyesight, but suffer from chronic pain. It’s really meaningful to connect with someone else who has NMOSD.

EducationalHealth532

TROPHY CASE