 For all of you who have CFS and FMS try the web site of Dr. Jacob Teitelbaum at www.endfatigue.com He has a very nice protocol that can be followed by your own doctors. I have followed his protocol for the past 16 months now and my results are getting better every day. I still have relapses and flare ups but I recover from them much faster. I also have a backup plan also prescribed to me by Dr. Mark Pellegrino from Canton Ohio, who himself has FMS. I always use the backup plan when needed. I also take lidocane trigger=tender points shots. I also do water therapy, walking, dance therapy and I consistently see a mental health counselor. So the approach needs to be multidisciplinary in order for us to begin the healing process. There is no cure as of yet, but I have seen success stories outhere throughout the country as I traveled doing advocay work for FMS and CFS, and when I participate at the patient/medical conferences in the U.S. I have also participated in a CBT at the University of Miami= Dr. Nancy Klimas/VA hospital group. It was run by Dr. Donna Weiss. It is called the smart energy program. Dr. Klimas also is running another research program with the drug Procrit (self injected once a month) Procrit has shown to increase blood volume with patients who have low blood volume. It seems that many folks who have CFS have Low blood volume. I also have a video tape of the CFS/FMS awareness conference held on June 6 here in S. Florida. The guest speakers were Dr. Nancy Klimas and her wonderful associates and Dr. Benjamin Lechner, a reputable reumathologist whose wife Trudy Lechner, RN has FMS. We had over 110 people in attendance and over the phone we had to turn away folks who wanted to attend at the last minute. Some people came anyway and we tried to accomodate them all. So, my advice as a patient is for everyone to try the multidisciplinary approach. Reason is because CFS/FMS is more and more being looked at as a Neuro-endochrine=immune system problem and the patient will need to balance and treat them all. The basics are: sleep and rest (do whatever you need to do in order to sleep your 8 hours during the night, learn proper sleep hygiene. Pay extreme attention and give hight priority to your nutrition. Be aware of your perpetuating factors and or associated disorders that come with FMS/CFS such as reactive hypoglycemia, hypothyrodism, tmj, ibs, dry eyes, myofacial pain, sleep disorders, depression, fatigue, costochondroitis, etc and the list could go on. Find yourself a good doctor who is willing to cut the cycle of pain by including meds that will help you with your pain.( including opioids.) If you have an addiction problem, do not take opioids. Have fun, smile, laugh, get and give hugs, find spiritual and or religious sustenance and surround yourself with beautiful things. Last but not least, find yourself a good support group. In my case I co-founded two empowerment/supportgroups att Memorial Hospital West in Pembrokes Pines, Florida at their Rehabe Center. The empowerment groups hold meetings every First Thursday of the month at #3:30 to 4:30 pm. Also at the same location from 6:30 to 7:30pm The phone number for information is 954-460-6880 extension 9824 ask for Dawn Broksch (my co-facilitator and registered physical therapist at the Rehab Center) Massatherapy, tai chi, begginners yoga and stretching, good breathing techniques are also important for brain fog, anxiety and stress reduction. I am constantly told of how overwhelming patients diagnosed with CFS and FMS feel not only because of the pain, lack of sleep, brain fog they have but also because of the information overload accompanying the conditions. It is very important "to get back to basics" as you embark on the road to healing and hopefuly remission. Simply put I call this process FiBro/CFS 101. In Good Health and In Beauty, Marla back |