I haven’t written lately because I’ve actually been enjoying being a little more “normal” than I have been in years (not mentally of course – I’m still pretty much insane probably lol). I’ve filled my time with doing things and then a few marathons to make myself rest, so that I don’t overdo it and get really bad again. The tide began to change two weeks ago.
I saw my Fibro specialist and we went over my abnormal labs, plus went through older labs, etc. Since he’s actually an Infectious Disease doctor he is the one to ask about any wacky things that I might have picked up. He’s so awesome that he actually worked his way through the entire page of stuff I had researched. The best part is that he ruled out everything else except for Hep C, which he forgot that he was going to order labs for (so I’ll get those soon, but he really doubts it anyway). The abnormal labs actually are due to the muscle relaxers, as I had found in clinical trial results, although the reasons for the abnormal results were actually a good sign. The way he said it is that it just shows that my body is actually processing the medicine, although the higher dose is probably why I never had elevated labs before, and that although the labs were abnormal for a normal person we don’t have to worry until it’s many, many times higher than these abnormals. *happy dance* (Back on the muscle relaxers now thankfully! I can’t wait for the involuntary movements to stop again!) Oddly enough no one has ever tested for Hep C despite having several inches deep of lab tests. By the time I saw him I think we all figured everything had been ruled out all ready, so it slipped through. There are enough overlapping symptoms between it and the combination of conditions that I have that there is a slight chance that I have a mild case of it, but it’s most likely just the same old conditions. It’s kind of crazy to feel so happy over having the miserable conditions that I have, but I am so thankful not to be facing new challenges! He thinks that the other doctor’s nurse just isn’t familiar with chronic illnesses like mine, so that’s why she wanted to just blow it off until the next round of labs, and why she focused on the one part that she understood and was instructed to inform me about.
Next, we went through all of the other research. I had learned about a Midwest doctor that believes that most Fibro sufferers actually have black mold in their sinuses and has a very different treatment protocol, etc. As luck would have it my specialist actually knows a lot about this other doctor and knows that there hasn’t been any proof of success. He actually put it really well when he said “If you look for something strange in a group that has problems, then you’re going to find something”. Well, hmm. That’s true. If the black mold in the sinuses truly was the cause, then why hasn’t almost every one of those patients had tremendous successful recoveries? To give my doctor credit he also offered to get the labs and refer me to the other doctor if I’d like to check for myself, but I have no need since his thoughts make a lot of sense to me.
We also agreed on trying two new medications. One is prescription and the other is a supplement. The supplement is 5-HTP, which is a tryptophan in pill form, and helps with mood, appetite suppression, and sleep. As to the prescription, I had compiled a lot of success stories from patients and research, plus even talked to a few friends in the medical field, about Marinol. It’s not a recognized treatment for CFS or Fibro, however there has been a lot of success with it blocking the receptors. Using it for anything beside nausea/appetite is still pretty controversial, especially in the Bible Belt, but he agreed to prescribe it for me to try it for a few weeks. It had to be prescribed to help with the nausea I’ve had from the IBS and sinus stuff, but I don’t care what is said as long as I can get it. I don’t know if it will work for everyone, and it definitely won’t work for anyone that is still working, but so far it’s a huge success story for me. Between the two of them I am sleeping a whole lot, although it’s actually restorative sleep for once. *little chair dance* One of the benchmark symptoms of CFS and Fibro is that sleep is non-restorative, which is part of why we’re so fatigued. True sleep makes such a huge change, let me tell you! I still sleep really odd times, but who cares?! After I’ve been awake for a bit I get these bursts of energy and can get some stuff done. I made a bunch of freezer meal and partial prepped meals, cleaned several rooms, and made some product. The coolest part is that when the Marinol is in effect it somehow stops a lot of the chatter in my brain. At any given point I usually have at least a handful of messages bombarding my brain to say a body part hurts. I get tons of messages about pain that has no reason to exist, then on top of all of the hyper responses from my body I have the real pain messages, plus a lot of random thoughts. I’ve never understood when people talk about having just one thought or even staring into space without a thought. My mind has always been cluttered and busy. The Marinol quiets my brain and almost all of the false pain messages are quiet now. The pain that I experience now almost all has a reason – injuries, overuse, etc. I never realized how tiring it is to have so much input continually being processed until it finally quieted down. It’s been hard to relearn what my limits are without my body continuously complaining and it has been an awesome lesson to learn. I had truly started to believe that things wouldn’t improve again, so this has been a huge sun filled vacation during an ice age. *grin*
Today I started another two week trial of the Marinol and restarted the muscle relaxer. I’m hoping that the next two weeks will be just as successful, although it’d be nice to be awake during lunch a few times. *laugh* Poor Larry didn’t have any lunches made for him lately. It is super hard to fight off the sleepy pull from the medications right now and my eyes feel like sand paper is rubbing over them when I try to fight it. I’m going to just go with the flow for now and enjoy all of this sleep. *grin* Expect to see some freezer meals and prep shortcuts since those have been my current research topics. The next post will be an awesome shortcut that I’ve been absolutely delighted with. 🙂 Anyway, I hope you don’t mind my sharing what’s been going on and I’ll try to post the shortcut later today.