Solving sleep = big improvement

From the minute I got my diagnosis about 3 years ago (only took 6 months, pretty good) I have pushed to keep myself healthy and not give in. The first big breakthrough was when my doctor put me on Cymbalta. I had been taking Lexapro for depression, and the Cymbalta not only took care of the depression (finally!), I also returned to normal body temperature after 18 months with a low grade fever.

I also see a Chinese medicine practitioner who treats me with acupuncture and traditional Chinese medicine. She has been focusing her treatment on my pain for the last 6 months or so, and I am now at a steady level of no more than 2-3 (on a 10 point scale), which is great!
At the same time I asked my acupuncturist to focus on pain, I asked my doctor to refer me for a sleep study (he has been great, just admits that there are not many options and he's not an expert, so willing to go along with treatments that I research - he originally suggested acupuncture). These two things were part of my idea to treat symptoms, since nobody seems to know how to treat the disease.

The sleep study doctors focused on the fact that results showed I had mild sleep apnea and wanted me to get a CPAP machine. However, I asked for copies of my results and the thing that hit me in the face was the result showing that I had zero slow wave sleep!! This is the deep sleep that you need to feel rested, and it should be 10-15% of your sleep time. I also noted that my sleep apnea was worse when I was sleeping on back vs side.

So I ignored the sleep doctors and followed my own plan to try to get slow wave sleep. I started sleeping on my side. I did some research on drugs that affected slow wave sleep and found that benzodiazepines (like Klonipin) reduce it. I had been taking Klonipin for anxiety about coping with work. Since my nice bosses had taken me off a big project that was causing me a lot of stress, I knew I could do without the Klonipin, and began the slow process of tapering it off. I am down to 0.375 mg per day. I remembered that meditation puts the brain into delta waves (which is another name for slow waves) so I resumed my practice of transcendental meditation(TM), figuring that even 20-40 minutes per day of slow waves would have to do me good.

After about 6 weeks of this, I am definitely feeling the best I've felt in 3.5 years. I am fortunate to have decent insurance and a good-paying job (so I can pay for the acupuncture, which insurance doesn't cover). But for people who don't, I think my results suggest that meditation can really help. With a book from the library, you can teach yourself meditation (TM is usually taught by a teacher at a pretty high price, but mindfulness meditation is easy to learn on your own; I used TM because I learned it a long time ago and practiced regularly for 10+ years; it was the easiest thing for me to get back in to). If you are taking benzodiazepines, see if another medication type can be substituted or if you can reduce your dose.

I hope my experience can help some group members.