**I’m so sorry I left you hanging after my last post, I started writing this a few days ago but then we traveled back home & since then have had a really hard time both physically & mentally, when that happens I kind of have to shelve blogging and go into survival mode.
Wow, being at Mayo was seriously the fastest & yet somehow longest week I’ve ever experienced.
I’m going to make this post quick for a few reasons, one I’m excited to get back to posting about other things that I really love & aren’t all a bunch a medical jabber & two, what I really wanted to convey were the feelings one goes through during this process, I’m hoping by talking about all of the ups & downs it can be helpful to you, even if you’re hard time isn’t necessarily about your health.
Yesterday’s appointment with Rheumotology went well. They were incredibly thorough & even took the time to talk with P & my Dad at length to gain their perspective of how I’ve been the last two years. Their conclusion wasn’t too far off from what we already knew. I definitely have an ‘athritis causing inflammatory auto immune disease’ but it hasn’t show itself enough to know which one it is. Could be RA, Lupus, Sjogrens, Graves…who knows, I’ll just have to wait until it shows itself more specifically. The bad part of that is I still don’t have a name, without a name you can’t easily tell people what’s wrong with you when they ask. However, without a name you also can’t drive yourself bananas googling it on the internet so I guess that’s good. The other good news is that the medication I’m already on (plaquenil) is what they would suggest for any of those diseases. So even though we don’t have a name we have a treatment & that truly is the most important piece to the puzzle.
The Rheumotologist also confirmed the Fibromyalgia diagnosis. Fifty percent of people with an auto-immune disease will develop Fibro along with it. (you only have a 4% chance of having Fibro if you don’t have an auto immune disease)
Fibromyalgia is a bitch.
I’m sorry about the language but seriously, I HATE HER. Fibro has caused me to develop TMJ, PFD, muscle spasms, muscle atrophy, IBS & restless legs. What a whore.
So I really thought after that appointment that was going to be it, it wasn’t what I was hoping for but it was something I could eventually make peace with. Turns out however that the best answer I was going to get was yet to come…
After Rheumotology my doctor had scheduled some ‘Autonomic Testing’. My very limited medical knowledge tells me that your Autonomic System regulates most of your subconscious functions…blood pressure, digestion, temperature control, heart rate, sexual functions & a few other things.
Before my trip to Mayo I was having a lot of anxiety about what to expect so I did what any rational person would do…I googled it. I stumbled across a young woman’s blog who had documented her trip to the Mayo Clinic in Rochester. She seemed to have a lot of the same symptoms I had & at the end of her visit she learned that she had a disease that had affected her Autonomic System & it was just wreaking havoc on her. I had never even heard of your Autonomic System before but after reading her experience a light bulb went off & a little feeling in my gut said, ‘this could be a BIG part your problem’.
I’ve been having a lot of problems with my blood pressure dropping & starting to black out so the abnormal blood pressure symptom immediately caught my attention. A week ago the loud ringing I get in my ears when I’m starting to black out even woke me up during the middle of the night. I didn’t even know you could black out in your sleep. Beyond bizarre. I’ve also noticed that lately if I get cold I can NOT get warm & on the other hand sometimes, very quickly & for no apparent reason, I’ll get crazy hot & start sweating all over. I figured it had to do with my ‘issues’ & never thought it could be something else until I read about blog girl’s experiences. I also am never hungry. I’ve lost 14 pounds & hate the way I look. I try to eat because otherwise I feel like crap but after a few bites I’m uncomfortably full. Autonomics handle digestion…interesting. Also remember when I spent 3 days in the hospital because I had lost feeling in my legs, hands & face? The best the hospital neurologist could tell me was that it was from a B12 deficiency. (on a side note I totally believed him at the time but while I was gathering my records for Mayo I noticed on my hospital labwork that my B12 was in the normal range, I’m wondering now if he was just fishing for an answer because he didn’t really know. Just another reason people, you cannot always take one doctor’s word as gold!) Because of all of that I was sure to tell my Mayo Primary Dr that I wanted to do the Autonomic Testing. (only a handful of places in the country have the capabilities to test for it) She agreed although she doubted that was the problem.
I did the Autonomic Testing 6 hours before our flight was to leave to take us home. Craziest testing I’ve EVER done, they basically try to make you faint, you can read more about it here. Right before we left for the airport I had my last meeting with the primary doctor to go over the trip. She reiterated what the other doctors had told us & what their recommendations were for when I got back home. The one thing she didn’t have yet however were the Autonomic Testing results. UGH! She promised to call me if they were abnormal & if I didn’t here from her then I could assume it was fine.
We packed up our stuff, loaded the girls into the rental car & made our way to the airport. As we were sitting by the gate getting ready to board my phone rang. It was the Mayo doctor. I felt like a boy I really liked but wasn’t sure was going to call actually did. She said results were abnormal & lead the doctors to believe I have a small fiber neuropothy. I didn’t have a lot of time for her to explain but basically a disease had caused my nerves to malfunction & not regulate my body the way they should, it was also most likely the reason for my awful pain in my legs & feet. SFN are relatively rare & often go undiagnosed, I’m extremely blessed that I happened to be at a hospital that could diagnose it, I’m certain that if I hadn’t gone to the Mayo Clinic I would not have been diagnosed correctly. (in case your curious SFN are often either genetic or are a result of your body experiencing an infection or an auto-immune disease. When I told my local rheumotologist she said there’s a lot of new research that connected Fibromyalgia with SFN as well)
I got off the phone & told P, he was so funny, his reaction was exactly like mine, “YAY! That’s great!! Well, I mean, not great, but so happy we have answer!” I immediately called my mom & dad to tell them the good news. Weird right? Somehow when you’re sick for a long time & have so many doctors brush you off as being ‘anxious’ or a ‘hypochondriac’ to finally get a concrete black & white answer is the best feeling on Earth. For a little while at least. Now that I’ve had some time to digest & read more about small fiber neuropathy it’s made things really real. Really real that it’s not easily treated. Really real that there is no way to reverse the damage. Really real that often it gets much worse. I don’t know, I thought I had accepted the fact that I had ‘something’ that I was going to be dealing with the rest of my life but for some reason I feel like I’m going through all of those emotions for the first time. It kind of feels like grieving maybe?
I’m sure this is quite boring for lots of you or you’re tired of hearing about it but for those of you who always leave me the sweetest comments & encouraging emails or your stories about difficulties with your own health…sigh, thank you doesn’t even begin to convey how it makes me feel. It truly makes things easier for me.
So what now? I literally just got off the phone with my pain management doctor because last night was the 6th night in a row that the leg pain wakes me during the night & I have to go sit in a hot shower to get relief & while I wait for my next dose of pain medication to kick in so I can go back to sleep until it wears off 3-4 hours later & I have to do the whole thing again. Not sleeping makes me a not kind person. That’s at the top of my list for figuring out. I have a neurologist appointment this Thursday & then need to find a GI doc & physical therapist to get started on building some strength. It’s going to be long road & I’m not feeling the most confident but as Glennon from Momastery says…