What a journey! Sometimes you have to reach the bottom to be able to move forward. I felt like I just couldn’t live this way anymore…then it occurred to me….when I had this exhaustion and pain before what did I do differently that made a difference….the only thing I really have any control over….I needed to CHANGE MY THOUGHTS! I could be depressed with what life’s thrown at me or I could find things to be grateful for, appreciate what I’m still able to do, be with people who are supportive, find things to make me laugh, do yoga, meditate. I nourish my body with healthy food and gentle exercise….but I wasn’t feeding my mind with good thoughts. Time for a change….I’m worth it!
I’ve been reading about Low Dose Naltrexone (LDN) helping some with ME/CFS, MS, Fibromyalgia and even cancer….so I’ve been wanting to find a doctor who might prescribe it for me. I was following a Facebook page of people who were sharing their experiences with it. You can find it on Facebook under LDN Low Dose Naltrexone for ME/Chronic Fatigue. I decided to call a compounding pharmacy I knew and ask them if they make LDN and if they could give me a list of doctors who are prescribing it. I ended up finding a NP in SLC who was fantastic. Had my first appoint last week. The first time I actually felt listened to and understood. She looked at all my labs, asked me questions and said yes, I had ME/CFS and did a test in the office with my pulse….testing it while lying down and again while standing. It jumped from 62 to 94 just from standing up. She said this was orthostatic intolerance and that because my BP is so low and doesn’t respond automatically when I stand, the body, to compensate and get blood to your heart and head raises your pulse. This takes a lot of energy and could be a factor in why I’m so tired. There is a medication she wanted me to try….called Medodrine. I take it 3 times a day. We’ll see how it goes. She said she would let me try LDN if I wanted but wanted me to try this first.
In the meantime I also need to learn how to pace myself better with the CFS. I got a book called Managing Chronic Fatigue Syndrome and Fibromyalgia. Feel Better, Take Charge, Regain Hope by Bruce Campbell, PhD. Excellent! I’m also seeing a wonderful counselor, went back to watching and reading “The Secret” to keep my focus positive, I bought a sensor and watch that tracks my pulse…so if I see it getting too high I can stop and rest. The LN suggested I rest 15 minutes every hour. I noticed often times I lay down but am always reading or watching T.V. or talking on the phone…not good, I have to really rest, close my eyes, concentrate on my breath, relax. It’s also very important to exercise but not so much that it affects you negatively. So I found I could do gentle yoga without it affecting my pulse at all. Cool! Love doing that…very relaxing. I also take a short walk….started with just 5 minutes. I’m getting there. I’ll keep posting what’s helping me and what I learn.
Here’s the forward written by Charles Lapp, MD for Bruce Campbell’s book, Managing Chronic Fatigue Syndrome and Fibromyalgia…”I occasionally lecture on the Holy Grail because the myth parallels what I hear daily in my practice of medicine: patients on a mission to find a miraculous panacea. this is particularly the case for persons with CFS or FM. Humiliated by doctors who don’t understand and rejected by a medical system that relegates CFS and FM to “mental disorders,” many begin a pilgrimage to find anyone and anything that might help. Like the Knights of the Roundtable, they make perilous journeys, fight battles along the way and overcome numerous challenges. Most end up worn out and frustrated. There are a few souls who do find a panacea of sorts. Like Galahad, they discover that reaching the goal is less important than the journey itself. These souls discover that when they’ve seen all the doctors, tried all the drugs, and explored all the alternatives, the most effective treatment for CFS and FM comes from within: They learn to deal with the illness. While medications may palliate the terrible symptoms, these valiant heroes have learned that CFS and FM are best managed with adaptation and lifestyle changes that lead to new meaning and self-worth.”