I Have CFS And CID. I’ve Had It For Six

Question : I have CFS and CID. I’ve had it for six years andr have been misdiagnosed until 2 years ago. I have been taking 100mg’s of Focalin XR for several years now. Naturally, when I first started taking Aderol, Ritalin, vyvanse and now Focalin XR, the dosages were much lower and increased as my body built a high tolerance for the stimulants. Now the only thing that works as far as a stimulant (ADHD) is Focalin. I’m not abusing the medication, I have tried on several occasions to not use any kind of stimulant including caffeine, for weeks at a time and once a couple months. I was completely bedridden and have been unable to work, read, and function without the Focalin. I’ve tried everything from natural and holistic supplements which have helped tremendously. Unfortunately, im not passed the most painful part of this debilitating illness which is the agonizing fatigue that even high doses of the Focalin can not relieve some days. I’m being treated for the illnesses at Stanford University’s Infectous disease department. I live in New Orleans La. I’m flying back and forth for my follow ups and treatment. My health insurance (CIGNA) has never given me any trouble with the various stimulants I’ve been on and off of. Now, among other medically necessary testing and surgeries, they have made treatments and getting approvals a very frustrating process. I just received a letter from Cigna stating that there is no supported documentation for using more than 40mg daily with any type of disorder. 100mg is not FDA approved. I have researched the use of stimulants for aiding CFS patients to get out of bed, even for a couple hours, to make us feel like we’re still able to be helpful and productive. Most of the literature I’ve found on the subject doesn’t support the high dosage that I have been taking. I have absolutely no side affects. I can go to sleep at the same time everyday and wake up felling crappy for about 30 minuets until my body wakes up but feeling crappy or not rested is a huge part of this illness. Like anything else, wouldn’t you agree that every situation is on a case to case basis. What works for some may not work the same or at all for others. My vitals are surprisingly perfect at every Dr’s appointment, I say surprisingly since I’ve had so many ailments with this illness not including the six back surgeries that have taken place during these trying past years. I do not take my prescribed pain medications after any of the surgeries because that is something I have absolutely no tolerance for. I’m on a medication that is compounded with the ingredients from Naltrexone (an opiate) withdrawal medication that I had never heard of until my doctor at Stanford prescribed it. In compounded doses, it’s used for some kind of reversal of the viruses CFS patients have. That being said, as long as I’m taking that medication, I can not have anything that contains opiates. I’m also taking an antiviral medication, Valcyte. Now I’ve given you more information than you probably needed but that’s a good synopsis of what life is like for me when I’m so fatigued that I just lay in bed hopeless and in pain, both mentally and physically. FDA approval means nothing to me. They have been careless and reckless with so many different products. Some of they’re approved products are financially beneficial to them and the billion dollar company they’re supporting. What is your opinion about my higher than average dosage with Focalin XR? It’s prescribed and approved by all of my physicians, and I have many Dr’s on my team for treatment.