Just introducing...

Discussion in 'Fibromyalgia Main Forum' started by goaska29, Aug 13, 2005.

  1. goaska29

    goaska29 New Member

    Hi everyone, I am a 26-year-old, formerly very active graduate student. About 6-7 mos ago I was working full-time, going to graduate school, going to the gym 4 days a week, and had a very active social life including a steady boyfriend. That all changed in late January. I have been to 3 internists, an endocrinologist, a neurologist, a cardiologist, and a shrink and no one has been definitive as to what is wrong with me. After reading a lot about CFIDS, I feel like a textbook case. While fatigue is definitely an issue for me, the dizziness, cognitive problems, and sleep disturbances seem to be the worst. I am in my mid-20s and I feel like I'm in my 80s!!!!! Please someone tell me it gets better. I fear that I may never have a normal life and especially never be able to physically carry a child one day and care for them. Some words of encouragement would be greatly appreciated.

    [This Message was Edited on 08/14/2005]
  2. WoodstocksMusic

    WoodstocksMusic New Member

    but you are young and with good care maybe you can get back to your life again.

    Treat yourself kindly.... your body is fatigued because you have probably been abusing it with little sleep while finishing up college (I was in college many years ago myself and I remember those days well)

    REST for the next few months you may need to get 10+ hours of sleep a night... then get yourself back on an 8 hour a night schedule as soon as you start feeling better.

    Good luck as you fight this overwhelming fatigue and we will hope it is just total exhaustion!
  3. smiffy79

    smiffy79 New Member

    and who says you couldnt carry a child? i have two since i have been ill w/fm and me.

    i am 26 too and yes like you feel 80 but that doesnt mean its the end of the world :)

    you can still go to gym or do some sort of excercise, its all about pacing (thats my mantra pacing pacing pacing) if you take it easy in the morning sleep for an hour in the afternoon then you can go out in the evening. hence i only go out one eve a week :)

    my excercise is w/my dogs of which i have 3 and a posotive attitide goes a long way.

    chin up and stay strong,w/any luck yu may not even have fm/cfs you may just need your batteries recharging :)
  4. Mikie

    Mikie Moderator

    You have a lot going for you. You are young and in good physical shape, even though I know it doesn't feel like it. The younger one is and the sooner one gets treatment, the better the chance for recovery.

    The first thing that is important is not to go into denial and work yourself into being bedridden. This is what I did and it takes a long time to recover. Your body needs a lot of rest right now. Only do exercises which do not leave you feeling totally exhausted afterward. Flexing and stretching are good.

    The second thing is to learn all you can about CFIDS. You cam to the right place. We have people here who are researchers and are up on the most cutting-edge treatments. Your research skills you learned in school will help you a lot. We have a library here with tens of thousands of articles and a search feature, including articles by Dr. Cheney, one of the most emminent experts in CFIDS.

    Just curious--did you catch a virus or feel like you had the flu just prior to getting sick? Many of us got infections which seemed to have caused changes to our bodies which didn't stop when the virus or bacteria should have been gone or latent. These pathogens seem to take hold in our bodies and turn into chronic infections. The Herpes Family of Viruses is very common: EBV, CMV, and HHV-6.

    Mycoplasma bacteria can also trigger our illness. If you go to Dr. Garth Nicolson's website, Immed, you can read about his research with mycoplasmas.

    The thing about these pathogens is that once they go chronic, they will use the body's own DNA to hide out from the immune system. They will live inside the body's cells and replicate. It is vital to get rid of them before they can do this. An infectious disease doc may help.

    It is very difficult to detect these pathogens once they are chronic/latent. It can take DNA tests which are expensive to find them. Many docs who specialize in CFIDS are not giving their patients antivirals and having good success with them. In the case of mycoplasma infections, an antibiotic, like Doxycycline, taken at least six months, can be very effective.

    Things which help rebuild the immune system can be very helpful as well. The undenatured whey which Dr. Cheney suggests is one of the best things one can do. Colostrum is another good supplement for the immune system. The store here sells these things. If you go to the Home Page, you can sign up for the e-newsletter and request a catalog, if you want one. Everything sold here is designed for those of us with FMS and/or CFIDS.

    Hope this helps to get you started. It can seem a bit overwhelming at first, but it will all come together. I highly recommend finding a doc with knowledge in CFIDS or looking for one of the new Fibro and Fatigue Clinics near you. The sooner you get some help, the faster you will achieve healing. Don't get discouraged; there is a lot which can be done for CFIDS and you have a lot going for you.

    Love, Mikie
  5. Rosiebud

    Rosiebud New Member

    I want you to know that there is hope after CFS.

    My daughter now 28, got CFS when she was 15 but she has managed get on with her life and hopes to have a baby next year. She has difficult times when she is ill but she has not become incacacitated by this illness.

    I think younger people like yourself have more of a chance of carrying on with their life.

    Rosie
  6. CFIDSNicole

    CFIDSNicole New Member

    We may have a lot in common---read my profile. I'm 26 and a grad student "on hiatus" because I am too ill to finish my degree.

    I have been sick for about two years and I wsn't diagnosed until this past Feb. I spent a lot of time being totallyconfused and in denial before someone talked to me about CFIDS.

    I know how hard this is. All of your friends are living life and you are at a standstill. It is hard.

    Take care,
    Nicole
  7. elsa

    elsa New Member



    I know you feel rotten right now ... but there can be better days. Believe it or not , your age is a plus for recovery. Mikie's right when she said to not go into denial. As hard as that sounds not to do, you could be loosing precious time in treatments.

    Many of us have had tons of tests run on us . Sounds like you have too. If I had it to do all over again, I would have requested having my sleep study done first.

    So many of us have sleep disorders .... alpha intrusion, REM problems. If I could have gotten a handle on my sleep disorder and started lunesta two years ago ( 'cept I don't think it was out yet.LOL ), I would have had sooo much more energy and health to get my research and treatment protocal up and running. As it is, I feel like I lost some good time.

    If you haven't had a sleep study done yet, request one from one of your doctors. Hopefully, you have a good doc that understands FM/CFS and is willing to be your PARTNER in the treatment of these illnesses.

    Getting decent sleep has made a hugh difference in my health. It didn't "cure" me, but I am in MUCH better shape to "fight the fight" then I was in past times.

    Please hang in there. You have found a wonderful place. We share information, compassion and support. We cheer each other on when one of us is doing better and we pick each other up when we stumble ..... unconditionally.

    Join us often , there is always someone here to help out. I hope you are feeling better soon and , again , welcome to the boards.

    Elsa

    P.S. Most of the FM/CFS doctors highly suggest joining a support group in fighting these chronic illnesses. I glad you found your way here!!
  8. goaska29

    goaska29 New Member

    I just have to say thank you so much to all of you who have replied to me. I was literally in tears when I was reading all of your responses at how encouraging and caring you all seem. It has been VERY hard for me lately. I just lost my grandmother and my only sibling, my baby brother, just enlisted in the army and shipped off 2 days ago.

    No one seems to understand what I am going through, eventhough they try so hard. It is so comforting to know that there are so many of you out there that understand and can sympathize (especially CFIDSNICOLE, although I'm unmarried, it's uncanny how similar our lives seem).

    Well thank you again, and I will definitely be on the message board often now.
  9. CFIDSNicole

    CFIDSNicole New Member

    I"m glad we made you feel a bit better and more understood. That's exactly why we join these online communities. It's nice thatyour friends seem tot try to understand, but you are right, no one can understand this unless he or she actually lives it.

    I forgot to welcome you in my earlier post--welcome!!

    Please post as often as you need, we'll try to help as much as we can, and I look forward to getting to know you better.

    Take care,
    Nicole :)
  10. Jen102

    Jen102 New Member

    so there is hope you could reverse it. Please don't push yourself physically so as to further damage yourself. Find doctors who believe you can recover, such as Teitelbaum or Fibro and Fatigue Centers. Don't believe it is mental illness as I know of no one who has been cured based on the idea that it is mental illness--you have one or more things in your body that are broken and the quicker you can fix them, the better chance you have of doing so. These are my humble opinions. Jen102