I'm new and overwhelmed...

Discussion in 'Fibromyalgia Main Forum' started by lgdavis, Jul 22, 2006.

  1. lgdavis

    lgdavis New Member

    I'm so happy I found this message board. I'd like to introduce myself and share my story. Sorry about the length but this feels like a safe place to go into detail.

    I've been fatigue for a long time. I worked through it because I had a very healthy lifestyle if you exclude stress. Also, I used stimulants like caffine, Ma Hung, Ephedra, Guarana...you name it (only if it's legal).

    I started not being able to function in 2004. I kept falling asleep driving, reading, sitting, etc. My doctors told me it was hormonal since I was perimenopausal. I read a couple books and articles on menopause and followed the advice. No relief. My Ob/Gyn found fibroids. I had the history of it so they convinced me to have a total hysterectomy including my ovaries removed. I got worse. I had a horrible experience returning to work. The Human Resouce Doctor suggested I get a sleep study. They put me on disability and wouldn't allow me back to work until I had the results. They only approved 3 weeks of disability pay. I didn't believe I had a sleep disorder so I quit and got another job. I got fired from the new job and was diagnosed with Narcolepsy a month later. I got on State Disability and was treated with Provigil. My alertness is so much better (long story but it took more than Provigil). I'm still very fatigue and my doctor thinks it's H O R M O N A L)*(&)*(^*(&^!!! She has also prescibed Wellbutrin and Zocor (my cholestrol is a little high)

    My family insisted I see a N.D. (Naturopath). He did a hair analysis and found 3 viruses which is zapping my energy and said I have CFS. He said the cause is Heavy Metal Toxity. I'm not going back to see him. He was expensive and far. I wasn't comfortable with him and he did energy therapy with lights and...I don't know what he did to be honest. He didn't explain too much but his reputation is solid with members of my family who have been seeing him for over 5 years with measurable results for allergies and back pain.
    My symptoms are: fatigue, mental fogginess, low backache for no apparent reason, lethargy, congestion in my sinuses, sore throat and on occasions laringitis (sp?),feeling of weakness like I'm sick, mild muscle and joint stiffness especially in my hands, elbows and knees and weight gain. I exercise regularly, but I have unexplained weight gain. I noticed that I can't recover from moderate exercise. It takes 24 hours to recover, and if I pack my day with lots of activities I crash for 24 to 48 hours. After following the N.D. diet based on my food allergies/sensitivities, I lost 7 lbs in 3 weeks. I'm taking the supplements he supplied but after 2 weeks, I was so fatigue that I was getting too tired to eat and forget exercise. My mental fog is better. That's why I can be on the internet and read longer especially if I'm lying in bed.

    I went back to the Clinical Nutritionist(who is qualified in alternative medicine) who started out helping my M.D. to prescribe the correct amount of bio-identical hormones and who designed a supplement and eating plan to help my energy because of hormonal imbalance. She had me on a plan that gave me enough energy to get out of bed. She analysized the N.D. results and told me he's treating only a piece of what's going on with me. She integrated both and suggested I stick to the N.D.'s eating plan. She plans to do another hair analysis and has a PT who can do Cranial Therapy. I can't afford more testing and the PT right now.

    I have an appointment to tell my M.D. the N.D. results of CFS. The N.D. wrote a simple letter explaining his analysis and that he's treating me for it. My Nutritionist has asked that I keep her opinions out of my conversation with my M.D. She knows that my M.D. follows traditional standard of care and has agreed to work with my M.D. on that level. I have asked my Nutritionist to use both traditional and alternative medicine outside of my HRT. We keep that info away from my M.D. My Nutritionist keeps my supplements and eating plan in my chart even though I know my M.D. thinks it's only for my HRT support.

    Confusing? I have the nerve to have questions...but please help. 1)How should I approach my M.D.? 2)What tests should I ask her to do (if she can't interpret them my Nutritionist who has access to my lab results and chart can or knows someone who can). 3)Since I have an HMO should I ask her to refer me to a specialist since she is an internist but sees a lot of patients as a General Practitioner? 4)Is it possible that I don't have CFS since I don't have Fibromyalgia? I'm not in a lot of pain. I'm mainly stiff and feel like I'm moving around in quicksand.

    Ok that's enough...too much. I'll see if anyone can tackle my post and next time I'll be briefer. Thanks....

  2. suzetal

    suzetal New Member

    Welcome to the board.You will find a lot of kind caring people here.

    You do not have to have FM to have CFS and vis versa.

    I have both plus a lot of other issues.

    Glad you joined us and sorry you have this.Hope you find a good Doctor.

  3. JLH

    JLH New Member

    WELCOME to our board. I am glad that you found us!

    I have never been treated by an alternative medical person, so I can not comment on any of those statements.

    How should you approach your MD? I, too, go to an Internal Medicine doc for my primary care. He does great with my fibro/cfs. I would tell him/her everything that you told us. But ... I would not withhold anything from this doc. Why would you not want to share your entire medical history with him/her and what you are currently doing?

    As far as what tests should you ask her to do? There are really no tests for fibro or cfs. But if she suspicions something else, I would have her to those tests. Have you been tested for any rheumatological problems?

    If you are referred to any type of specialist, it would be a Rheumatologist, or at least, that is who specializes in the fibro/cfs, to the best of my knowledge. Your stiffness may be osteoarthritis.

    I have both fibro and cfs, and have a lot of pain -- but also have a lot of pain from many other conditions. What I take for the fibro is Cymbalta, Neurotin, and Zanaflex (at bedtime). I also sleep with a CPAP machine and oxygen due to my obstructive sleep apnea.

    Hope you get to feeling better.

  4. lgdavis

    lgdavis New Member

    Thanks for all the replies. My Dr. appointment is tomorrow, Thursday, so I will post how it goes.

    Right now I'm so fatigued and can't figure out why. I will search the boards for how everyone copes.

  5. lgdavis

    lgdavis New Member

    I went to an alternative med Dr. and his analysis of my symptoms was CFS. I showed my Internist Dr his letter detailing what he found and why. My Internist said she didn't know what to do and has done everything she can for me. She recommended going to another Dr especially a Rhuem but she said no Dr under my insurance group treats CFS.

    I'm starting over. I switched groups which will take effect in Sept and made an appointment with a Dr who uses homeopathic treatments along with traditional meds. I'm not sure she treats CFS. I told her staff when I made the appointment that I suspect CFS. When I see this new Dr in Sept. she'll know up front that I'm looking for relief from fatigue.

    I can't afford to go to Doctors not covered by my HMO. I'm not going to give up, but I feel like it. I'm already not wanting to go to Doctors for my fatigue and associated symptoms. I'm learning to rest and live with it. Alternative treatments are so expensive.

    I'm trying CranialSacral Therapy and colon cleansing. I take a boat load of supplements and eat a strict diet of no sugar, no dairy, no salt, no beef, no alcohol...no fun. The supplements and diet help a little. I feel like maybe it's what I have to live with and I'll never get the energy back that I had just about 7 years ago. I did lose my energy slowly and actually hit the wall about 2 years ago.

    I'm so disappointed right now. It's a feeling of being stuck in quicksand while watching others enjoy the activities of life. I'm an ex-athlete, sales rep work-a-holic career Mom. I had the euphoric vision of having it all and doing it all. Nothing was there to slow me down until now...



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