Day 1 My Story

I made my first post in the support subforum but figured I'd try out the SEP, so some of this is copy pasted from there. I apologize for the length(and honestly I skipped a bunch of things), but it felt nice just writing stuff out that I've kept to myself.

At the beginning of last year I hurt my left wrist/hand(dorsal radial side) while playing too much guitar. I took some time to stop playing it, then tried again and it still hurt. Using it for anything would be extremely painful, simple things such as trying to wash my hair. The first doctor I went to said it's most likely tendonitis, and prescribed me physical therapy, which was a lot of stretching and icing. Two months later and my hand isn't any better. I'm recommended to orthopedics and eventually get in to see a hand specialist. He immediately says that I have carpal tunnel syndrome, does a clinic test, and says the results are clear that its CTS. He gave me a steroid shot and said to come back in 2 months, play guitar to your hearts content. After about 4 days of additional pain(which he said was expected) I had a pain free day. I was estatic as it was the first day in months that I wasn't always thinking about my hand. The next day I try to exercise again and.... the pain is back, hand burning constantly. I learned that location of my pain isn't even related to CTS symptoms, so I went back to the doctor to tell him it didn't work, and wanted him to explain why he thought my symptoms correlated with CTS. He gave a unuseful answer, said MRI/nerve conduction wouldn't show anything, and that I should get the surgery. I declined and tried to find other doctors. I found a smaller clinic that agreed that it wasnt CTS, but he wasn't sure what it was and would put in a nerve conduction test, but it would take a while...(as in I still haven't gotten a call for it, nearly a year later). I was able to get a MRI scheduled, so I waited for that. In the mean time I decided to get back to the gym as getting a pump in my arms was the only thing that made my left hand feel good.

Its nearing the end of the year and I'm still struggling not thinking about the pain all of the time. I can't type much as it always brings on pain. Doing most chores in general just hurts, picking things up, driving, etc. Even when I'm not doing anything sometimes I get stabbing or aching pains. I feel like I've lost control of my life, this pain becoming the sole thing I think about. Wokr no longer matters, I come home and just sulk on the couch, looking up solutions or new remedies I can try. At the end of Novemeber I start having insomnia, and am introduced to acid reflux. I'm lucky to get 3 hours of sleep, if I'm able to fall asleep. Sometimes I'll wake up to a rush of adrenaline, and can't fall back asleep. During the day I try to conssume food/water, but it just burns. Even sips of water burns. From December to the middle of March I'm going through this hell. I've lost over 20 pounds due to lack of apetite and not wanting to eat. I go to the doctors during this time and get a barium swallow to confirm I have a slight hiatal hernia, and also sign up to get a sleep study for the insomnia.

When I started having constant reflux I honestly can't remember if my hand was in pain like it was before. My mind had shifted to this new symptom that felt life threatening. I couldn't eat foods I wanted to anymore. I didn't even want to eat foods period. I limited when I would eat and drink to minimize pain. None of the tips/tricks for reflux seemed to apply to me. Low acid diets, PPIs, acid blockers, I'd still be in pain. And the pain would be anywhere from my chest all the way to my mouth. Sometimes I would even get nauseous eating. I thought maybe I contracted something and reflux/insomnia were a symptom. I started looking up diseases that could explain this, and for most of that time I thought I had dysautonomia/pots. I didn't have a crazy high hr, but my sitting/standing were staggeringly different. I would sometimes feel sick after eating a lot of carbs, and I would get tunnel vision when standing up quickly. It was the one thing that made sense to me. After coming to terms with it I kind of became indifferent to it. This was life and I couldn't do anything with it, so I'll live with that life. In the middle of March my reflux vanished. It wasn't instant but gradual. I was still weary of foods for a while, but I never felt the symptoms of reflux again. I still feel tightness in my chest but I think that's more related to anxiety. The potsy symptoms lessened, however I still deal with sleep issues, though no where near as bad as I had at the end of the year. I did end up having a mild case of sleep apnea, so I've been using a cpap machine, but am still waiting to get better sleep from it.

During that time in January I got my hand MRI'd but it wasn't conclusive. I was hoping that it included my wrist/forearm, but alas it didn't so I'm still questioning that. In febuary I went back to the ortho and the hand specialist recommended me to a spine specialist as he wasn't sure the problem was stemming from the elbow-fingers(his area). I got both an xray and mri that shows spinal stenosis on the particular vertebrae that have nerves affecting the hand. She is certain a steroid shot will give me relief. I'm not so sure. I told my new PCP my story and she said she could recommend me to a neurologist group. I'm still waiting to hear back from them.

So I feel very much like I'm in the middle of things. I didn't really talk about my hand pain symptoms, but they range from achey and tight to burning, stabbing pains, my index finger likes to burn on the skin too periodically. I don't necessarily have actions that I can perform to trigger the pain(which is really annoying when a physical therapist asks you to perform motion that causes the pain). I can do some motion just fine one time, but then another time it hurts. I can be not doing anything and feeling pain, or not. It's all very random feeling. I actually started to try using my hand more reading replies from my post the other week. It felt bad, but the two mondays ago I had like, an okay day, where my mind felt good, and then the next day it was also good. It wasn't that my pain had gone, but that I could tolerate it, and perhaps was noticing it less, I don't know. Those days are far and few between, and I feel like they get followed up by days that are worse, which further causes confusion. But that makes me think about what is progress, at least to me. Given my pain isn't like *do thing for 5 minutes and it hurts* and its more *this may or may not hurt, idk* I see it being more about my response to pain. The pain isn't debilitating to where I can't use my hand. It's really flipping uncomfortable, but I'd like to be doing something I love doing, and not give a damn about it. I can do that sometimes, but then other times it feels like there's a shortcut straight to my chest, I get tightness and I'm in a state of anxiety.

Something that helped me was seeing that in some success stories, success wasn't overnight. It can be pretty defeating to see all of these success stories that were book cures, or were solved in a few days-2 weeks. Some people tooks over half a year, and it did work. Also seeing people that did the SEP and then wrote their success story. I'll be pretty honest this all seems pretty lucy goosey and too hard to be true. I also have a fear of "If this is the last chance I have, what if it doesn't work?" and instead I could put it off and keep that hope saved for later. Seems silly but makes sense to me. I can't say that I've confidently put my hat into the "this is tms" bucket, but I really want to. I still have thoughts in the back of my mind that I got really unlucky and caused permanent damage that day.

With that said, I am trying to get back into activities, pain or not. One thing that has actually thrown me off is for a few months now I've been playing guitar, and I get absolutely no pain from it, which if weird given it started this all. I've been on vacations where I've felt better, but I attribute it to not typing. Typing is generally painful, though sometimes I can go on spurts(30 minutes) without feeling anything bad. This past weekend I went climbing which is something I was scared of doing again, but it felt really good(getting my hands/armed pumped feels good) and I'd like to go again. I also played some computer games with friends on the weekend. I've almost never used my home computer for leisure due to the pain it causes. It still caused pain, but I worked through it and had fun all the same. These are activities I'm trying to do more of, in spite of the pain it creates.