Newbie w/questions...

Discussion in 'Fibromyalgia Main Forum' started by piera78, Jan 5, 2006.

  1. piera78

    piera78 New Member

    Hello Everyone!!
    I recently discovered this board and have been lurking for a while. Thanks to everyone for all of the informative posts...I've spent hours upon hours reading!

    I haven't been diagnosed with FM or CFS, but my general doctor believes that I do have one or both. I have been diagnosed with Raynaud's (took 6 years of noone knowing why my feet turned almost black until I figured it out and doctor's agreed!) I also have the lupus anticoagulant antibody. I am 27 years old and way too young to feel like I have been run over a truck everyday of my life. I feel like I am 100 years old and there are many days that I cannot get up. I am recentyly married (almost 2 years) and thankfully my husband is very supportive and loving.

    I did see a Rheumy about a year ago and he said that I did not qualify for CFS/FM diagosis since I only had 9 tender points. He dxed me with Raynaud's and the antibody. When I asked him why I felt the way I did...so tired, joint pain, back pain, chronic kidney/urinary infections/fevers/stomach pains so bad that I would cry...he walked out of the room and never came back.

    I have been taking homeopathic medicine that my aunt gets for me. She is a doctor in South America. She has Lupus and has been able to maintain good health with homeopathic medicine. Twenty five years (while in medical school) ago she was dxed with Lupus and was close to going on dialysis. She met someone who recommended she take homeopathic medicine and feeling like she had nothing to lose, she did. A couple of months later, she was better. It's very sad though because back then, doctors told Lupus patients not to have children so she never did. Anyhow, I have felt a thousand times better taking this medicine, but I am having a relapse and it's hitting me hard.

    So, after this really lon gpost, here are my questions:
    1. I want to have a baby soon. What kind of precautions do I need to take? I am very nervous about being pregnant and having an autoimmuine disorder.

    2. How can I lose weight??? I have tried Atkins (strictly) for 6 months and only lost 12 pounds!! I have tried low cal, diet pills, etc...and nothing works!! I need to lose 20-30 pounds.

    3. I bought a rebounder the other day. I am waiting for it to arrive. I know the health benefits of it, but has anyone lost weight using it?

    4. Most importantly, does anyone know a good FM/CFS rheumy or any type of doctor I can go to in Atlanta or anywhere in Georgia?? My aunt is great, but she is in another continent!! And, when I become pregnant, I need to have a doctor here.

    Ok, sorry for the really long post!!!
    Thanks in advance to everyone! Hope everyone has a wonderful, pain-free day!!
  2. Kinsie

    Kinsie New Member

    I cant' help you much on your questions, but I just want to say welcome. You will find all kinds of good info here, and good frieds too.

    Kinsie
  3. angeljoe

    angeljoe New Member

    I just wanted to take the time to welcome you to our little family. You will find a huge amount of support on this board. I don't know the answers to your questions either but you could do a good doctor search on this website and maybe find a doctor near you. I moved from the Atlanta area in March of 03. I didn't have Fibro there so I don't know of a good Rheumy doctor. I can tell you that there are many Doctor referral services in the local Atlanta phone book.
    Angela
  4. skierchik

    skierchik New Member

    I really feel for you!! I was diagnosed with with Type 1 diabetes at 19 and things have been rough ever since. I currently have CFS/fm, but by myself and no help from any of my doctors, have been able to heal myself to where I feel much better and can do things again.

    You're are right, much too young to feel that way. I'm 42 and feel I'm too young to be this sick. (i have the influenza right now). But the thing that caught my attention while reading your message is the ATKINS DIET and diet pills. That is the absolute worst diet you can do for yourself!!!! And not to mention what the pills are doing for your adrenal system. I know what I'm talking about. That diet makes you very, very acidic and your body's ph levels (saliva, blood etc) cannot handle all the acid. If yu have kidney, bladder issues, believe me this will make it worse. Please don't do that diet! Or take pills!!

    My suggestion for losing weight is to eat a very BALANCED, healthful diet of fruits, vegetables protein from fish, lean chicken, turkey, etc. If you can get off sugar, you will reduce cravings. It's hard at first, I know, but it will be worth it. I will offer you all the support I can give you. I know, I know...this is boring. I assure you that you will feel so much better! And when you feel better, you'll have more energy. And more energy means losing weight. You didn't mention exercise. Once you start to feel well eating a good, clean, preferrably organic diet, you'll want to exercise. Start out walking if you don't do anything currently.

    I am a huge believer of homeopathic remedies. Kuddos to you!! I personally use them alot and they always work when used correctly!! I hate to say it, but I firmly believe your relapse has to do with what your eating and the diet pills. Maybe and only maybe if you were extremely healthy could you get away with the atkins diet and diet pills.

    I have read hundreds and hundreds of diet, nutritional, fitness and health books. It's a hobby for me and I enjoy it!! I will help you any way I can. After all, don't you just want to feel good?? as apposed to being skinny and looking a certain way and possibly jeapardizing your already fragile health??

    If you like to read, I recommend Dr. Jeffrey S. Bland's book. He's a genius and does a lot of research on CFS/FM and related health issues. It's called "The 28 Day Rejuvenation Diet Program. I've done alot of what he recommends and it works. I also have two autoimmune disorders (diabetes, Hashimoto's-hypothyroid condition) which both make it very difficult to lose weight. I went from a size 2 to a size 8 currently. I used to work out 1 and 1/2 hours per day 6 days per week, so that I could look a certain way even at the age of 39. But for the last several years, I have realized in the scheme of things, it's not worth the health risks and problems it was causing me. My adrenal system is shot!! And now because of this my diabetes is very hard to control.

    I now exercise when I can, would still like to lose some body fat, but I feel that if I concentrate on getting my health back everything will fall into place.

    Don't worry about having a baby with autoimmune disorders. My best friend who has 2 kids also has 2 autoimmune disorders(the same as me) and does just fine. She's healthier than me probably, but she also works very hard on her diet (eating a balanced one and eating organic as much as possible) and she's lean and beautiful. Her kids eat the same diet!! They are so beautiful because their skin and eyes look sooo healthy!! It's not really a diet per say but a way of life. If you want to chat further, please let me know.

    skierchik


  5. piera78

    piera78 New Member

    Thanks everyone for the warm welcome!!!

    angeljoe-thanks for the rec...I will check the yellow pages.

    skierchik-Thanks for the welcome and your advice. I am not on Atkins now. I was on it about a year and a half ago. My body was so drained from doing it that I had to stop. I know that it was not smart, but I would literally do meat and egg fasts for weeks so that I could lose weight. Presently, I try to eat mostly whole foods. I only eat whole wheat bread and pastas and I try to limit them. However, I have not been able to make it a true way of life or to find a balance. I did start taking diet pills (phentermine) about a month and a half ago and I know it is directly related to my deteriorating health. I called my aunt last night (which I have been avoiding due to the diet pills) so that I could update her and she can refill my medicine. I told her about the pills and she said the same thing you did. She told me that it is counterproductive and making me take many steps back on my road to recovery. I knew that, but I couldn't help it.

    I guess the best way to explain how I feel is that I feel that due to my weight gain and lack of health, I feel like I am stuck in someone else's body. I don't feel like me. I feel trapped. The brain fog, exhaustion, weight gain (30 pounds in 2 years)...this is not me. I am almost done with my undergrad and hope to start law school in 1 1/2 years. All I have left to do is an internship to graduate, but I am so tired and sick that I can't get the energy to do it.

    I do want to be healthy more than I want to be thin. The lack of energy and brain fog is what bothers me the most. At the same time, though, the weight that I am at affects my health as well. I am sure that the knee pain would be lessened if I lost weight. I guess I want to feel normal. I want my moind, energy, and body to feel normal.

    I love to read. It is one of my favorite things to do. I will pick up the book you mentioned this weekend. Also, in the mean time, I would welcome any advice that you have on nutrition. I am going to the grocery store Saturday and would love to incorporate any of your suggestions.

    On exercise, I will admit that I have always hated working out. I did buy a rebounder the other day. It should be here soon. Every night before bed, I have a renewed sense of hope. I tell myself..."tomorrow I will begin to workout" but I am always too tired. So, everyday is a let down. I'm ashamed to say that I have an elliptical, an OLD stationay bike, and a bowflex. I never use them. Feeling exhausted coupled with hating exercise are not conducive to me working out. That said, I purchased the Urban Rebounder for the lymphatic benefits and to exercise. It seems fun and I am hoping that I will love it. To be honest, if I had one wish, I would ask that I be the type of person that loved to work out. I know people that have to begin their day running a few miles. I would love to be like that.

    I would love to hear your suggestions skierchik and thanks for your reply!

  6. Countrymom

    Countrymom New Member

    I was diagnosed with CFS/FM and finally found the FFC, it is the fibro and fatigue centers and they have a center in Marrietta, just outside Atlanta.

    Through their extensive testing, I was found to have Lyme disease with several coinfections. I have adrenal dysfunction along with hypothyroidism and a host of other hormonal imbalances all caused by the lyme.

    I have been overwhelmed by all of the test results, I have no immunity, thick blood(take heparin shots 2 a day), liver problems, inflammatory disease, not to mention my neurological symptoms. And I thought I just had arthritis!

    You sound like you are trying to find answers and I urge you to look into the FFC. They are wonderful and they most certaintly will not leave you in a room crying without answering your questions.

    You can search for others posts about the FFC on here, look for Idgbcoleman, karatelady52, dalphia, cindycor. There are many of us going to these centers and believe in them. They use a ton of homeopathic natural herbs when they can. You can also find there website as well by doing a google search.

    I would definately try to heal your body before considering pregnancy. I have a 2 and a 3 year old and it is almost impossible to care for them . I just started my treatment at the FFC back in September and have yet to turn the corner in my recovery so I look foreward to getting my life back so I can focus on my children and not my illness.

    Good luck and welcome to the site.
    Dani
  7. skierchik

    skierchik New Member

    I'm glad to help but I'm not really use to these message boards and would prefer to email directly. There is so much information that I can give you as well as website addresses and my own personal trials and tribulations. What worked for me and what didn't.

    Would you like my email address? Would it be a mistake to post it here?

    skierchik
  8. piera78

    piera78 New Member

    My email address is [edited as per rules]
    Thanks again for the reply!
  9. skierchik

    skierchik New Member

    Piera78.....What happened there? What's the big deal about an email address anyway? Are they watching us???

    If you want try again.

    skierchik
  10. piera78

    piera78 New Member

    countrymom- Thanks for the advice on FCC. I was thinking about going. But, then I found out about the heparin shots-I know they will want me to do that because I do have thick blood. I am deathly afraid of needles...really. I dont think I can do it. And, from what I have read, there are a lot of supplements...I've read about people who take 20-30 supplements a day. I don't know if I can do that. However, I am interested in going because I have always believed that I have a thyroid problem and they test more aggressively and thorough than most doctors. All I can get my doc to do is test the TSH. It's normal so he won't go further with it. I actually made an appointment, but don't know if I will keep it.

    skierchik-I don't know why my email address was edited out. I guess that there are rules about that. I tried to see if there was a way to PM you, but I didn't see an option.

    Does anyone know if there is a way to email or PM from this forum????

    Thanks again everyone!
  11. tonakay

    tonakay New Member

    personal e-mail addys can only be given out through the chat rooms....

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