The past two weeks have been a complete whirlwind. As I had previously posted, our first trip to the Mayo Clinic was end of March; the latest visit was last Thursday the 7th and Friday the 8th. I would say that I’m about 50/50 at the moment.
The first appointment on Thursday was a Fibromyalgia (FM) screening. Although there aren’t any blood tests that you can take for a diagnosis, there are a battery of signs and symptoms that doctors use to create a diagnosis. Unfortunately, there are still doctors out there who use Fibromyalgia as a “catch-all” term for any number of things that they cannot explain. These doctors are behind. The Mayo Clinic, one of the top medical facilities in the world strongly believes in Fibromyalgia as a serious condition that demands research and specific programs.
Needless to say, I had every single diagnostic characteristic. From pain in all “tender points,” flu-aches, tunnel vision, dizziness and super sensitivity to light, smell, sounds, touch; to cognitive complaints: inability to keep a thought, forgetfulness, short term memory loss. It was truly amazing to learn the majority of my most dreaded symptoms are in fact, not Dermatomyositis (DM), but Fibro. Obviously, the diagnosis was confirmed.
Our next appointment was with the Rheumatologist that has been overseeing my care at Mayo. This is where the “meh” part comes from. To be quite frank, this guy was a dick. From circling around, avoiding a specific answer to my questions, to mentioning that “We need to move along since there are others waiting” (when he was the one running 45 minutes behind). He was overly positive, certainly a “Go on and live your life” type; which is great, but I came to him for answers to the tough questions. I wanted honesty and facts.
He quickly reviewed his notes from my previous visit, and although the Fibro doctors entered all pertinent information into the system for his reference, he relied on my account of the FM appointment earlier that day. Then he told us that it looks like the DM is improving and that all my blood work indicates that it’s doing great - although my blood work has ALWAYS been pretty great (with the exception of a few inflammatory markers and the ANA - which indicates the presence of an autoimmune disease). It’s the biopsies, and MRI’s that show muscular edema and inflammation. No mention of that. I was so flustered by his shitty attitude that I didn’t even get to that question before I just thought, “Screw it, this asshole isn’t going to help me.” Good thing that our first day alone at Mayo cost $3,000 (before insurance), plus 2 nights in an overly priced hotel, 4 days of missed work, and little to report from the DM side of things. Add it to the list; they’ll be getting a letter.
Dr. A-Hole did however, tell us that the pain and long list of symptoms that I was talking about were not DM but rather FM, and sent us to the Fibro Clinic. This was good. Major news.
Here’s the medication plan. The FM doctors recommended a drug called Lyrica. I am to continue taking the Methotrexate (MTX), begin Lyrica and wean off of Trazadone. Eventually, taper off the pain meds as well. When all is well, attempt to back off of the MTX, and if needed, switch to a much safer drug called Plaquenil. The goal would be to take Lyrica (or another Fibro drug) and Plaquenil for life, unless I can get to a point where I can eliminate one or both of those two drugs.
Only problem is that they did not write any prescriptions for me. Tomorrow I have an appointment with a new Rheumatologist. I am to walk in, give him the super quick run through of my past treatments and symptoms, and the Mayo’s recommendations (since I will not have their reports in hand yet). I’ll need him to write me new prescriptions and also update my work FMLA forms for work. Nice first visit. The first thing that I am going to ask him though, is whether he can be my overseeing doctor for both DM and FM. If he says no, the appointment’s over.
Day two was much more valuable for Brad and me. This was the all day Fibromyalgia clinic. The Mayo Clinic takes a very holistic approach to Fibromyalgia, which is neat. The staff with the FM clinic were great. Brad and I took home over 30 different booklets on the different aspects of Fibro and ways to help control it, and also 3 DVD’s and a Guided Imagery/Meditation CD; even information on how to find credited resources online. One of the booklets was for family members, which I am sure will be appreciated.
Fibromyalgia is a syndrome that affects your parasympathetic and sympathetic nervous system. What happens is that your brain creates pathways when it learns pain. For reasons still unknown, Fibro patient brains essentially “mis-fire” creating signals that the body should be in pain when there isn’t technically anything wrong. Since there is no “cure” for Fibromyalgia, the medications used are often to trigger different parts of the brain, “tricking” them into operating differently. The holistic aspect of treatment is to calm the body and teach the brain to learn new pathways.
Some ways to calm the body are through deep breathing techniques, meditation, light exercise, stretching, yoga, cognitive therapy, the list goes on and on. I was really happy to learn that I am “allowed” to stretch and practice yoga; it feels really good to stretch and I love yoga. I was pissed when I had previously learned that I needed to stay away from those things.
There aren’t any special diets that will cure FM. There is no such thing as a cure. Like Dermatomyositis, the symptoms may get to the point where they seem to be in “remission” for some time, but they could still occasionally flare. The symptoms could be flared much more often. I’m shooting for the better one!
Our bodies have a natural instinct to slow down when there is pain. I naturally began slowing down a few years ago, when my muscles started to get tired from both the DM and FM. Last June, when I was diagnosed, my doctor told me to stop nearly all physical activity as to not aggravate the DM. This is unfortunate, since the theory that movement will aggravate inflamed muscle tissue is really an old wives tale (info learned from Dr. A-Hole).
Our muscles then become de-conditioned very rapidly. Since there is a great amount of pain, and more often than not, this muscular de-conditioning; getting active again is a delicate matter. This is why the clinic helps create a [super baby-steps] program for getting back to a place where you can begin to heal with the techniques aforementioned. It’s all about conserving the bodies energy; not over-doing, not under-doing. If you over-do it, you end up paying for it for days to come. Under-doing it isn’t making any progress, but rather going backwards. I am a constant over-doer. After being in pain for 10 months I am to the point where I can’t stand not doing anything for myself and I just push through pain. This is why I crash and burn after every weekend, and often at the end of each day. Not good.
I will begin occupational therapy locally at some point, although I will first have an assessment at Mayo. This is one of the many things that I need to discuss with my new Dr., whoever that may be. I’m hoping that it will be the one that I meet tomorrow, so that I don’t have to wait until May to go back to Dr. Grandits and begin adjusting my medication. Please-oh-please-oh-please!!
One thing that I found to be extremely interesting is that the Fibromyalgia patients brain takes pretty much any negativity and runs with it - turning that “thought” into pain. Despite a few cranky blog posts, I am a very positive person. This applies to more than just me, though. The Mayo Clinic actually recommends telling your friends and family to NOT ask you about your symptoms and pain. The holistic plan focuses so highly on positivity, not only am I supposed to try to ignore it, so are you! Any comment or thought that makes the brain have to go to that “unhappy place” triggers that nervous system mis-fire which results in physical pain. Take-away: if you’re going to ask me how I’m doing, make sure you’re asking me how I am actually doing, not my disease. This is awesome because I hate talking about it anyway which is the whole reason for this blog! I promise that I won’t think that you don’t care.
So I need to select a couple of the items of the FM list to begin working on. Stretching and walking begin right away. One major component that was discussed was stress. The example that they gave was that you have X amount of stress for each day, both good and bad. I need to decide where I am going to use those pieces of stress. If you are using all of your stress on “bad stress” at work all day, getting home and going straight to the couch because you have no stress left for good things; then you aren’t giving anything to yourself. This has been my struggle all along. There’s nothing left for me. I have maintained my job for the past 10 months, but MY life has been reduced to nearly nothing. The priority hasn’t been me. I have a lot to think about...
Brad was ecstatic the whole two days, and the whole way home. I understand the reasons that he was so excited; I was happy about those things too. But I cried the whole way home. I don’t know if it was mental exhaustion, hopelessness or a feeling of defeat. I know that I had put so much hope on the appointments and I was let down, which unfortunately overshadowed all of the good news.
At the end of the day we had difficulty scheduling additional appointments, which led me to feel like they weren’t trying to help me, which led to me remembering Dr. A-Hole and how he hadn’t really helped me, which then led to a complete meltdown. Good thing Brad took, “For better or for worse” seriously.
We head back in two weeks for the physical therapy assessment, and a wrap up to the Fibro Clinic. Tomorrow is the appointment with the prospective new rheumatologist. Wednesday, I have surgery to remove the tiny mass in my gums. Sweet.
I am looking forward to the adjustment in my medication; I’m just so consumed with worrying about whether this new doctor will be the right one for me or not that I can’t think about anything else. Thank God that appointment is tomorrow.
As I dig in and learn more from the abundance of materials from the FM clinic, I’ll share. Although I was secretly hoping for a magic pill that would fix everything, I look forward to working to get my life back, slowing getting back into doing all of the things that I have missed in the process. I am so blessed to have a partner in life to take these steps with me. I also have an amazing group of friends and family who I know will be patient and supportive as I work hard to get myself up and running again.
In the meantime, I have some fun distractions: a visit from an out of town friend, ABOM, spending time with some brand new little friends; last week my college girlfriends surprised me with a visit full of treats, chatting, games, and hysterical laughter. Perfect. Brad and I might even shoot for a date up the street for ice cream in the evening! I might even be walking my little doggies sometime in May.