Phenytoin and Phenytoin cream should be considered in case of chronic incapacitating fibromyalgia

We received the following letter, which stresses the importance of considering phenytoin in chronic pain:

I am a 63 year old female who was diagnosed with fibromyalgia more than 30 years ago. I was suffering massive muscle pain all over but with a focal point in my lower left back which would prevent me from walking even short distances. I was suffering for 2 years before diagnosis. My family doctor at the time said after trying heat and cold treatments and giving me Tylenol 3 that he felt the pain was in my mind due to the stress of my fourth year in university at Queens. I can’t explain how badly this made me feel. I was 4 credits away from graduating but could no longer walk from class to class, I was basically crippled. I had even seen a chiropractor for several months who gave me massages, spinal correction and ultrasound treatments. Nothing helped and I was forced to quit school.

I was diagnosed by a medical professor with fibromyalgia. He said that I needed to go and live in Arizona where the weather was more stable. Even though the diagnosis was awful at least I wasn’t crazy. He prescribed exercise and water aerobics as helpful in dealing with the pain. Again nothing seemed to help. From time to time I would lose the use of my legs for short periods – few hours at a time. Of course, this was extremely frightening but nothing helped and other doctors would all agree that it was in my head. Living with this condition had ruined my romantic relationships and now I am single and have given up pursuing and involvement.

Over the years I found that changes in the seasons, unstable seasons and extremes in the weather made me so much worse. Freezing rain and drastic temperature change (10-15°C and more) for some reason were the most painful. I stopped and avoided the weather forecasts for fear of psychosomatic pain. Still I swear to this day I can predict a storm or drastic change with at least 70% accuracy.

Around 2007 I started seeing a new pain specialist, Dr. R. I had been diagnosed with carpal tunnel, torticolis or just extreme fibromyalgia. Thankfully Dr R. sent me for an MRI and discovered I needed a cervical laminectomy with fusion from C2 to T1. In the course of treating me during my recovery with Marcaine injections we also tackled my fibromyalgia. Of course, it was attacking my neck and shoulders. Marcaine injections saved my life as I believe I would never have worked again.

In addition, Dr R. started me on phenytoin topical. Nothing else helped with the fibromyalgia, until the phenytoin topical. There was some improvement! With that Dr R. started me on phenytoin and things began to rapidly improve. Today I am on it 4 times a day 50 mg on morning, 50 mg at noon and 100 mg at bedtime.

I am now enjoying at least a 50% decrease in pain. Last week we had temperatures of -22°C that swung to +8°C in 24 hours with freezing rain to boot. Normally I would have been in acute pain days before and days after, as well as, unable to work. Now I was in pain but it was manageable and I did not miss any work.

After 30plus years of suffering I feel that I just might get my life back. This needs to be shared with physicians who treat sufferers. I believe that this treatment is the answer. Thank you Dr R. for your help and sharing the work you have done.