Lisa’s Wellness Update - March 10, 2008
Thought I would send an update as it has been almost a month since my last update. I can feel that Spring is almost here. The weather has been cooperating lately so I have increased my walking. Amazing, I am able to walk between 10,000 and 13,000 steps with great ease. I am feeling strong. I had to laugh last week when Rick said “You must be feeling better. You have really picked up your pace. You are feisty once again”. As I am sure you can tell–I don’t give up easily.
I had an appointment at the Center last Wednesday. I am feeling great and Dr. G is happy with my progress. We discussed the results of my sleep study as the final report was released to the Center. It appears that it took me some 250 minutes before I actually went into Stage 3 sleep. My percentage of delta sleep was 2.3. The average should be 12-25%. My percentage of REM sleep was 6. The average is 25. I don’t have trouble falling asleep—just staying asleep. Most nights I feel that I am just resting all night. My eyes may be closed but I still feel wide awake. It’s really weird. Dr. G. is working on resetting my clock as Stage 4 sleep is an absolute must for the production of growth hormone.
I meet a few new faces at the Center. Once again, I heard more horror stories. It’s very sad that so many of us have to go through so much pain before we actually receive the help we need. Rick was with me at this visit. He entertains the staff and the patients. He brings much laughter to all of us. I am so very lucky to have such a wonderful husband.
I had an appointment with my rheumatologist two weeks ago. He was truly amazed at my continuing progress. He was very much interested in my treatment protocol. I was happy that he has an open mind. So many times our “regular” physicians don’t support us or feel that we need a mental evaluation.
Last but not least an update of my family. My 80 year old father is doing absolutely wonderful. He has been on the YOU: Staying Young program for approximately 4 months. He, too, is very feisty these days. He is also taking Release and Renew. He has suffered from arthritis for many years. His pain has decreased and his is very happy. My husband, the love of my life, has been following the YOU: Staying Young Program for seven months now. He looks great, feels great, and is walking each and every day. He takes BodyFlow classes 4 times a week as well as lifts weights every other day.
In closing, I am very lucky to have my life back. I thank God each and every day for the wonderful care I am receiving. I hope that my story continues to provide the glimmer of hope for more fibro patients that they, too, can find the help they need.
April 13th, 2008 at 5:28 pm
SOUNDS GREAT, I WISH I COULD HAVE MY LIFE BACK… I’M 35 YEARS OLD AND WAS DIAGNOSED WHEN I WAS 29. NO 1 HAS HAD AN ANSWER FOR THE RIGHT DIET THE RIGHT EXCERCISE, OR HOW TO DEAL WITH THE PAIN..THEY JUST WANT TO SAY I NEED A SHRINK, IT’S EITHER IN MY HEAD OR IT’S ‘CAUSE I’M DEPRESSED.
IF ANY1 CAN HELP ME OUT WITH SUGGESTIONS I WOULD GREATLY APPERCIATE IT, I’D LOVE TO BE ABLE TO DO THINGS AGAIN……..
April 17th, 2008 at 5:42 am
Hi Lisa,
I am surprised that more people haven’t responded to you and given you some encouragement. How are you doing? It has been a while since your last post, so I hope all is well for you. I am a new patient at the Seattle Fibromylagia and Fatigue Center. Before my decision was made to go to the Seattle Center, I read your journal entries and they inspired me to make my decision to go. I didn’t see you on Opera sorry, but you have inspired me through your postings, please don’t quit!
I now have the book from Fatigued to Fantastic by Jacob Teitelbaum, MD and recommend this book to any doctor who has patients or person who has FMS/CFS and would like some more knowledge. In deciding to start at the Center, I may have done things backwards-but I find myself here now. I researched and found this site, you, the center, and then Doctor Teitelbaum’s books.
I have lived….in the same town for around 25 years, and I have had the same primary care doctor for 22 years. I may be stirring the pot around here, but jut a little. This town has a very big and famous clinic that is great on several things yet conservative and behind on FMS/CFIDS.
I found an article published by this clinic while on Daily Strengths. It was printed only four days after I faxed my doctor a letter that started off as a personal e-mail to a friend, and I chose to send it to several other people. This letter is of my frustration with my Fibromylagia and the medical community. Interesting.
I hurt my neck 8 years ago and went through all the normal procedures. When all the test came back within the “norm” I was diagnosed with FMS/CFS. I also have degenerative disk disease in 3 other places in my back, and I have 2 disks in my neck that push into my spinal canal, but this clinic won’t do anything for me because everything is within the “norm”.
I have learned to live with the pain, but the quality of my life seems to be slipping by. Who wouldn’t need anti-depressants if they have had a headache with various levels for the last 8 years? I think I have neck/back issues too, but they blame my Fibro.
I would suggest or bring in articles from the FMS network to several different doctors. They would turn my suggestions down…Eight years later I was talking with a Neurologist about neurotransmitters being more active in FMS patients spines, but he cut me off to explain that this has never been proven. I realized then I was still going around in circles. In a big clinic you have several different specialists who are never on the same page about FMS and this is very frustrating for me and for several others.
I found myself feeling my worst taking about 17 different meds at different times for all of my issues. I feel like I have a head cold quite often with sore throats which is only a viral thing passing. My muscles have been so tired for so long now it seems to be work to take care of myself right now.
I searched the net for information, which I still only half understand-“yet find very interesting” and seem to be my passion right now.
When I went to the Fibromylagia and Fatigue Center in Seattle, I felt like this was the first time I had a doctor that I could relate to all of my symptoms, big or small, and she had an idea of what I was talking about; instead of sending me off to a specialist who had no clue about FMS..
I liked the Fibromylagia and Fatigue Centers for their holistic approach. I seem to have several issues and adressing them all will be a challenge but I am game. I like the idea that it is a center dedicated to “one” major cause FMS/CFIDS. I understand there is no cure, but I want to feel good enough to live again-I haven’t done that since I hurt my neck really, and I want to feel good enough to work again-which I haven’t done since December.
Say National Fibromylagia Day is May 12th right. I was going to be in Seattle, but I changed my date because I want to be home. First of all because of Mothers Day, but also I wanted to be around home on the 12th. I hope I have enough energy to write an article, or put up flyers at the college or…help… what is SHINE…or is this to much for me to tackle alone right now and I should go to a seminar myself in a neighboring big city? I really am all alone here is this big city—no support from doctors, friends, family, etc. I know awareness is the key, but I usually am a strong person but just not right now.
My next appointment at the center is in May 5th. I look forward to my blood work and receiving more treatments.
I hope this brings you comfort.
Take Care
May 5th, 2008 at 11:49 am
Dear Lisa,
I am glad to read that you are doing so much better. As I read your updates, I realized that my sleeping pattern is very similar to yours. Can you share with me what you are doing to assist you with better and more restful sleep?
Many thanks,
Lisa
May 12th, 2008 at 10:18 am
Hi Lisa! It was so great to meet you & Rick at the Center…I keep forgetting to send you my e-mail address, but, all the same, daily I think of the hope you both gave me that day! It has been a long haul for me too & I feel very confident that the FFC will be able to bring me sunshine-y days again! You are an inspiration - keep up the good work & thanks for making yourself available! Regards, Billie Sue
June 7th, 2008 at 4:43 pm
Hi Lisa,
This is great that you’re being helped! I have had fibro since last August and still have adrenal fatigue and major sensitivity to fluorescent lights and Electromagnetic Radiation, making it impossible to work outside of the home.
Regarding your:
“Five viruses looping, and an alarming low natural killer cell provided an ideal nesting place for the fibro.”
What Tests did you have to find these viruses (and T-cell levels)?
“Dr. G explained to us that fibromyalgia manifests itself as a musclosketal issue but is actually a neurohormonal issue. ”
I believe this- as I have not had a period since August and I have the major light sensitivity. (Could also be caused by lyme I guess)
Thanks so much for your time,
L