Dear Dr. Orange
I noticed that you sit on the advisory Board for both the Fibromyalgia as well as the Lymphedema discussion groups. I have something I would like to run by you and I apologize in advance for how long this email is going to be, but I have quite a bit to say. I am a sixty-five year old female. My twin sister and I were born with underdeveloped pituitaries and experimental hormona drugs were used on us. It worked for me and I went on to have four sons. My twin never did develop. She was always sick and always hurting and was told by doctors that it was all in her head. Three weeks after our thirtieth birthday she left a note saying she was tired of hurting and took all of her meds and killed herself. That one is still very painful so I will not go any further with that. As time went on I started having a considerable amount of pain in my feet, knees, ribs, foggy brain, etc. My bowels were a mess and I continually had water in my legs and feet. Since my heart, lungs, liver and kidneys all checked out, no one seemed too concerned. I was diagnosed by several doctors with Fibromyalgia which truthfully didn't mean too much to me. I cannot take any pain meds as they stop my heart. In fact there are few meds I can take without reacting to them. I have lots of hobbies, good friends, a wonderful husband and a relationship with Christ. Life is good in spite of the hard times. Anyway, a year ago this past October I was out in the yard and either got bit by a spider or a rose thorn got me in my right wrist. Within a few hours my wrist was about three times its normal self. I got into my doctor right away and she called the infectious doctor as I am prone to staff infection and antibiotics tear me up. They decided together to put me on two different antibiotics at the same time in hopes they could keep me out of the hospital. I took them for five days. On day six my upper right arm swelled and was red and hot. So they started me back on antibiotics. By the next day my left upper arm was all swollen and red and I could not lift either arm more than a few inches. The antibiotics made me so sick they had to quit them. The infection was gone but the arms remained swollen and painful. For this past year I have had a difficult time even lifting them because of the pain. My doctor sent me to a Rheumatology who also diagnosed me with Fibromyalgia. But she was unable to do anything for the arms. It just had everyone baffled. My doctor then sent me to a sport injury doctor who did MRI and everything she could think of. PT did nothing but make the arms worse. She told me that as a last resort she was sending me to a Lymphatic PT to see what she thought. There are only three Lymphatic PT on the whole Eastside of Seattle and it took some time getting me in with her. She works out of Evergreen Hospital and ninety five per cent of her patients are cancer patients fighting lymphedema. Her name is Kim Ellis and I do have permission to give you her cell phone number should you wish to have it. She couldn't understand why I had been sent to her but said she would do a medical work up on me and see where we went from there. She started asking me questions and then she asked me about my circulation. I told her that both I and my twin sister were born with these tiny little veins that no one can get blood out of. Kim said "bingo" and had me lay down. She ran her hands over my entire body and said I was full of lymphatic fluid and toxic poisoning. She said I had an immature Lymphatic system that was unable to move the fluid along with the toxic poisoning out by itself and needed to be drained by hand. This simple method employs light, slow, rhythmic movements of the hand placed on the skin to stimulate lymphatic flow. My husband and I both attended twelve sessions where she taught us how to do this our selkves as I would need to have this done daily for the rest of my life. It takes about an hour. I do from the stomach up and my husband does the legs. There are some breathing exersices as well. By the third day I could lift my arms with only a little pain. And if I pump the lymph nodes in the arm pits I can usually make the pain go away for hours. I have no more pitting edema in my legs. My bowels are working normally for the first time in years. My blood pressure has come down. And the pain in the rest of my body is now pretty much gone. I asked Kim what she knew about Fibromyalgia and she said that her Grandmother had had it as well as her mother and that as long as she does a massage on her each day she can keep her mother pretty much pain free. I asked Kim if she was aware of any research between Fibromyalgia and Lymphedema Drainage. She said she was not. Though most of her patients are recovering cancer patients many have other things like Fibromyalgia, arthritis, etc and each one of them has told her how they have no more problems with their disease as long as they are faithful about doing their Lymphedema drainage. My regular Dr has been very excited about all this. I asked her why no one had ever thought to check out my Lymphatic system before. She told me she like so many doctors did not have more than a day or two of the study of the Lymphatic system in med school. I found this so hard to believe so I called my son in Nashville. He is a doctor at Vanderbilt University. He told me that that was just about the same amount of time that he had on the Lumphatic system as well. So then I called the infectious doctor and he told me the same thing. He said that cancer doctors are about the main ones who study the Lymphatic system. I found this mind boggling since the Lymphatic system is a major part of our immune system as is blood veins that are needed to help get rid of the toxic poisoning. He is very excited aboiut all of this as well and says he would like to do more research on it. The final thing I wanted to comment on was I noticed that the people on the Fibromyalgia discussion group and people on the Lymphedema discussion group both pretty much complain of the same symptoms. Could there possibly be a connection there? I just thought that since you sit on both boards you might know. Wouldn't it be wonderful if all it took to get rid of most of these people's pain and need for drugs was to give themselves a one hour massage daily. Most insurances pay for this training and it cost no money there after. I would appreciate any feed back you might have on this subject.
Sincerely,
Elaine Lagrange