I haven’t updated on my pain in quite sometime, because frankly, things have just gotten worse, but I haven’t made any progress with doctors.
I think I’ve mentioned before, the running diagnosis is Fibromyalgia. Fibro is a real disease and it is horrible, however, I do not believe that is what I have anymore. My symptoms don’t seem to match people I know with it, and none of the medicine has even slightly helped. I’m not saying it’s impossible, but at this point, I think it’s unlikely.
I tested positive for Lyme Disease a while back. My primary care doctor got a little excited, thinking maybe we’d solved the mystery. He put me on an antibiotic treatment for, I believe, 10 days. It did nothing. I felt no better, things just continued to get worse. He referred me to Infectious Diseases who promptly denied my referral.
Come to find out, there is a pretty big debate on whether Lyme disease can be chronic. One side says the longer it goes untreated, the worse it becomes and it is definitely a chronic illness. The other side says it isn’t chronic, and if you aren’t responding to the antibiotic treatment, then it’s not Lyme. And if nothing else is positive, it’s in your head. See a psychiatrist. 🙄…. I do see a pain psychologist, but even she says it isn’t in my head. I’m not exhibiting symptoms of Conversion disorder.
All this really means is, people with Lyme disease suffer because the people who believe it isn’t chronic are insurance companies (and some neurologists & rheumatologists). Therefore, seeing a specialist who does believe in it comes out of your pocket. (Have you ever looked at a specialist bill and saw the amount before insurance helped? 😢)
Which leads me to what I’m doing. On the 24th of this month, I will be heading to Mt. Kisco, NY. It’s about a 7 hour drive from me, and it’s near NYC. There is a doctor there who specializes in chronic Lyme disease and he is willing to see me. Problem is, it’s not covered and if I decide to go with his treatment plan (long-term antibiotics), I have to see him monthly. Which means, once a month, I need to drive 7 hours there and back, and pay out of pocket. But, I’m doing it.
I think I’ve seen most of the doctors in the area that could potentially help me and each one has basically told me, “I don’t know what is wrong with you. Go back your primary care doctor.” My primary doesn’t know what to do either and around and around it goes. I am backed into a corner and I dont know where else to turn to. Nothing is helping and my symptoms have gotten much worse.
If you’re curious, this is what I’m struggling with daily:
- Buring in my legs and arms, like I’ve been lit on fire.
- Tingling in my arms and legs
- Numbing in my legs- my left leg has gone numb from my hip to my toe and stayed that way for hours.
- Balance and coordination issues. (I’ve almost fallen.)
- Anxiety – sometimes almost agoraphobic, where I dont want to leave the house.
On a scale of 1-10, 1 being pain free and 10 being the worst, I’m averaging a 7, never going below a 6, and when my pain flares, I can be somewhere between an 8 and a 9.
I’m nervous about this new doctor. My biggest fear is that he can’t help me. I’m currently in the appeal process of my SS Disability case, because there wasn’t a chance I’d get approved on application…but you can’t get it if you don’t apply, so I’m trying to stay positive. Meanwhile, I am working my tail off to get Alter Reach out this year (goal is December 2nd, because it’d be a sweet 30th Birthday present to myself!)
It’s wearing on me. I’m struggling, but I have to keep trying. There has to be a light at the end of the tunnel, I just need to get there.
Let me know how you’ve been doing in the comments. Forgive me if I don’t read your posts right away. I’ve been binge catching up ever couple days so that I don’t miss anything. Just know, it isn’t for any other reason than lack of time. ❤