It has been years since I first started experiencing strange symptoms. In 2011 I was diagnosed with elbow tendinitis. That very well could have been elbow tendinitis. I'm a rock climber, so I use my arms quite a bit. So I took a break from climbing, and resolved to adhere to a more well rounded exercise regimen. That is perhaps the only point I will give the medical system. Yes, it very well could have been tendinitis and probably was.
Around the same time my TMJ started acting up. I had always had clicking in my jaw, but it had never really bothered me until then. I was having terrible headaches and it was difficult to focus on, well, anything. So I had a nightguard made, and there was considerable improvement. My doctor also prescribed me amitriptyline to help me sleep - it worked a bit too well and I couldn't quite wake up in the morning on it. Four years later, I still get TMJ headaches frequently, and I'm taking a muscle relaxer to sleep at night.
So late 2012/early 2013 my nerve and joint problems started. Numbness and tingling in my fingers, shooting pain up my arms. Sharp pain in my wrists and elbows. I was diagnosed with carpal tunnel syndrome, and cubital tunnel syndrome. Neither of those could actually explain the pain in my wrist. Carpal tunnel can cause wrist pain, but not the type of pain I was experiencing. Once again, we blamed rock climbing. It was recommended that I have surgery on my right wrist, which I did in January 2014. The numbness and tingling did seem to go away, the wrist pain was untouched. Fast forward to now - and oh, my fingers are numb and tingly again. Sure glad I wasted my time and money on that venture.
Now, there was a time, where I did actually climb enough for those injuries to be plausible. Say, 2010. But in 2012/2013 I was working in an office, and really didn't get to climb all that much. Probably once or twice a week, and I was taking it easy. I had taken up trail running, and yoga. I had never thought I'd be a runner. When I was young I would always get shin splints running on pavement. I started on this short, softly packed trail at Hedgehog Park (aka Murder Park) in Salem, NH. It was really short, like 1k. Perfect for a gentle introduction to trail running. Soon I was doing laps, and bored of the place - though there was a beautiful blue heron there that I got to scare into flight on every run. I never got into long distance, but I would usually run 3-4 miles 2-3 times a week.
It's surprisingly easy to ignore what's going on in my body. Well, it was. I'm at a point now where its's impossible - but I would always blame pain on whatever physical activity I had partaken in that day. Even if the pain seemed completely random. Climbing isn't a gentle sport. It can wreak havoc on your body if you aren't careful. Since I had the elbow tendinitis - I was being extremely careful. So, I started having knee pain. Ankle Pain. Now I have Tarsal tunnel syndrome - recently saw a Podiatrist. That is essentially Carpal tunnel for the foot. Numbness and tingling. Now I know this can't be from things i'm doing. It started about a month after I had stopped running because of other foot pain ( a pinched nerve). The doctor said it could be that I just don't have a lot of space for my nerves or that it could very well be caused by Lyme disease, which, since the tarsal tunnel presented around the time of my more serious symptoms, I had asked about.
So that's what I think this all is. The medical system is extremely flawed when it comes to the diagnosis and treatment of late stage Lyme disease. I started having dizzy spells in January. They have become more and more frequent, and i'm exhausted all the time. I feel like i'm stumbling around with my head in a cloud. My vision is blurry and doubled sometimes. My cognition is impaired. I'm out of breath and dizzy from short bursts of physical activity that would never have even touched me before. Everything hurts. My neck and back joined the club, I don't know when. I had conjunctivitis last week - apparently another symptom of lyme (the list is a mile long). I have seen several doctors. The neurologist found nothing (but hey, I don't have MS or a brain tumor, so that's a win!). The rheumatologist clearly doesn't believe in chronic lyme, but golly, it's probably fibromyalgia! Next up is an infectious disease specialist, who i'm sure will be useless as well. Especially since I'm having trouble just getting an appointment - return my calls damn you!!!
My friend went through this situation - he had 3 negative lyme tests through his primary, eventually went to a Lyme Literate Medical Doctor (paid out of pocket, insurance doesn't cover), who sent out for tests from a specialized lyme testing lab called Igenex, which came back positive. So effectively - insurance is nearly useless, and our medical system is broken for people with chronic lyme. On top of having a debilitating illness, Lyme sufferers get to lose their savings to the disease as well. I am not including myself as one yet, as I am still waiting to be diagnosed. I still haven't been treated, I have an appointment made with an LLMD which can't get here soon enough. Meanwhile, my friend suggested I go gluten, sugar and caffeine free. This seems to be helping some with my stomach issues - which I didn't mention above, because, ew, gross.
It seems to help if I get out to do something physical each day, even if it is just a short walk with my dog (who is actually adjusting quite well to the decrease in exercise, and is a great cuddle buddy - i'd be much worse off without her). Yoga helps too, though I can't really balance at this point. I can't climb for shit, but going to the rock gym makes me feel better - just being around my friends. I'm feeling pretty isolated over here. Some days are better than others.
No matter how this turns out - I know I can still be a bad ass. So what, if I have a chronic illness for the rest of my life. I will fucking live with it and make it work.
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