New to board and a bit scared

Discussion in 'Fibromyalgia Main Forum' started by AutumnGirl, May 21, 2003.

  1. AutumnGirl

    AutumnGirl New Member

    Hi everyone. After about 2 hrs of crying in frustration today.. I found you all. Briefly, I've been dealing with undiagnosed chronic fatigue for the last year (possibly a tad longer). If I were to list symptoms, most would fit the criteria for hypothyroidism...but my tests were all normal. I don't have health insurance and can't afford a doctor (right now), but am going to fix that soon I hope. Please know that I'm not singing the blues over no insurance..it's just something I've had to live with. Anyway, since my biggest complaint right now is ongoing fatigue (okay, and massive hair loss) I went looking for information on that subject.

    I don't know what FM or FMS is, and not sure I know what MD is.. unless you're referring to a doctor. But a couple of posts caught my attention and made me squirm a little bit. One being the post about mucus in the throat at night. I get a LOT of that, but have always explained it away as "probably just allergic to something." I get it sometimes during the day, but last night was particularly bad...kept me up a while. Needless to say, I don't know what's wrong with me yet and I have no idea how long it will take to find out. But I'm scared and tired, and I just don't know what to do. I really want my life back and this fatigue is ruining everything and while probably ruin my relationship as well if it's not gotten under control.

    I'm so confused and scared by things lately that I don't even know what questions to ask. I'm planning on seeing a hollistic physician here in the next week or two. My fiance's paying for it and it will most likely take a LOT more than he or I can afford. Let me explain... I'm a dance teacher. Well, I WAS a dance teacher until I couldn't get through any of my practices or classes. Now I'm unemployed and relying on my fiance. I guess I feel guilty about that, a bit ashamed, so I had to explain.

    Any suggestions....on anything? Like I said, I don't even know what to ask myself.

    Thank you for listening.
  2. AutumnGirl

    AutumnGirl New Member

    Problem is.. I'm so lost I've no clue as to what to ask. Since I can't just let a doctor do all the necessary tests at once (whatever those may be), I've been trying to figure out what's wrong by symptoms. Nuts, huh? I just don't know what else to do... it's been going on a lot longer than I care to deal with, but... maybe I'll figure it out. I guess I need to read more on the CFS part, but as it is what I have read points to CFS being a condition CAUSED by something else.
  3. allhart

    allhart New Member

    welcome to the board autumngirl
    almost all of us have been threw your fustration,you will find help here,
    fm is fibromyalgia, yes md is dr,
    my frist suggustion would be to read on here what supplments others are taking for the cf and use what little money you have to try and get some relife,the holistic physican will propbley just tell you supplements to take which everyone here can tell you about ,read as much on here as you can,
    there are so many smart people here that will help you and no ? here is ever thought of as stupid,
    agin welcome
    kara
  4. AutumnGirl

    AutumnGirl New Member

    Beautiful name, btw. I don't know what the docs will tell me when I finally go. Could be perimenopause, could be anything I guess, and someone once suggested it could be adrenal fatigue---which mimicks a lot of hypothyroid symptoms. I have a sneaking suspicion I'll go through several labs before they decide "what's wrong with me." I'm just so frustrated with all the fatigue and miserable feelings, and my doggone hair fell out to boot.
  5. AutumnGirl

    AutumnGirl New Member

    ALL of my hair didn't fall out.. good lord. Not yet anyway, but I've lost about 40% of it I'd say.

    Ella
  6. AnnetClo

    AnnetClo New Member

    You have definitely come to the right place. There is so much info on this board and so many caring people. I was dx'd with fibromyalgia in Nov of last year, but haven't been dx'd with CFS (although I'm sure I have it). So I know that fear you're talking about. Just knowing that my body is so tired and that I can't will it to do anything and nothing I do has helped scares the bee jeebies out of me.

    I would suggest researching chronic fatigue in several places on the internet. Match your symptoms and maybe print out some things to take to the doctor with you. Because unfortunately, doctors are very knowledgeable about CFS or FM. Most of the time, we have to be our own advocate.

    Ask any question you want, or just read the posts. You can learn a lot that way. But anywho, welcome. We're glad you're here.

    Hugs
    Annette
  7. AutumnGirl

    AutumnGirl New Member

    I think from what I've read so far that the jury's still out on the whole CFS thing. That's sad since so many suffer! Most of what I saw kept repeatedly pointing to hypothyroidism, and I was almost convinced I had that because I had 95% of the symptoms including the low body temperature. But.. the tests came back with normal readings. They did forget to do the TSH levels, and I had to go to the lab again today so they could draw blood AGAIN to send off for the TSH. I don't suspect it will come back with anything out of the ordinary, though. That would just be too easy. But my point is... CFS seems to be a symptom of some other problem most of the time, though not all. Confusing. Just plain confusing.

    But yes, everyone here has been so nice here. What an OASIS this has been for me today! My eyes were nearly swollen shut from crying before I found this board. I'd been looking for answers on the net to what could be wrong...for WEEKS. A friend of mine actually was the one who talked me into getting a thyroid panel done. It was disheartening in the sense that I don't have an answer. I'm glad I don't have it, don't get me wrong, but I just want an answer. I certainly don't want to think that I'll have to feel like this day after day after day as I have for over a year now...with no hope in sight, with no answers as to why.

    Whew. Thanks for letting me vent.

    Ella
  8. AnnetClo

    AnnetClo New Member

    I could agree more about wanting an answer. I too thought it was my thyroid before I was diagnosed. But with FM I hurt-everywhere. All of the time. So I was almost afraid to get an answer since I was sure that I was consumed with cancer or just insane. The diagnosis of FM was tough to take, since there is no cure, but it did remove the "unknown". I sure hope you get your answer soon.

    Hugs
    Annette
  9. AutumnGirl

    AutumnGirl New Member

    ..but I'm not sure I have the symptoms of FM (I did a quick search on the net and looked up symptoms). Chronic fatigue, yes, but I'll be willing to bet there will be tons of labs before it's over.

    I'm sorry that you (and others suffering with FM) have to feel the way you do. :eek:(

    Ella
  10. loopyloo

    loopyloo New Member

    Welcome to the board
    Yes it takes ages to get diagnosed well for me in the UK it did, what they do as they dont have a test to say yes it is ME/CFS they have to eliminate every thing else first like Lupus MS ect..in the UK they call it ME i was diagnosed with ME in sept 2002 and i had had it since 1997 we think as they say it can start with a viral infection i had flu really bad in May 1997 and could not walk for 2 weeks they think thats when it started since 1999 i had been going to diffrent doctors, specialists,had loads of blood tests, nothing it wasn't untill i went to the doctors in tears saying i was very frightened about what is happening to me i hurt all the time i said one day i wont be able to wipe my own bum as i could not bend my arm behind me, i said you have got to do something they then sent me to the first rumatologist doctor that i had seen in 1999 and she recognised me then they started to take me serious i eventually see a specialist that deals with MS and ME and he diagnosed me, now i am waiting for an apointment to see a nuroligist as my memory is getting worse.
    every one here can give you aworld of information and you can click on the libary at the top or put in something you want to find and read it
    welcome again to our board
    (((((((((((((big hugs)))))))))))))))from the UK
    from Loopyloo xx
  11. AutumnGirl

    AutumnGirl New Member

    It's exhausting trying to figure all of this out. And it's even worse because I look like I feel and no amount of makeup helps. The thing that puzzles me the most is my hair! Not a CFS symptom (that I know of), but my hair DRASTICALLY changed in a matter of weeks. I lost more (went through a bout of losing handfuls...gobs of it about a year ago) and it's so dry and unmanageable that I really can't do anything with it, literally. It's so broken that it looks layered (but it's not), and it's so unsightly that I don't go ANYWHERE unless I have to! A year ago I had great hair, and 4 or 5 months ago I had pretty nice hair. I put it in a ponytail and hair sticks up all over the place, I leave it down and it's just like straw. I mean, LITERALLY, I can't do anything with it. So when I put my lovely (NOT!) pallor with that superb (NOT!) hair, I look a complete fright!

    I don't mean to go on and on about how I look, but it's almost shocking to look as bad as you feel.

    Ella
  12. goingslowlycrazy

    goingslowlycrazy New Member

    ...welcome to our family!

    Just stick around and read as much as you can and you will learn loads. The people here are very wise and into research in a big way!

    Good luck with seeing your hollistic physician - let us know how you get on.

    Sorry this is short but it is late here in UK and I need some sleep....just wanted to say Hi and welcome. Hope to talk more soon,

    hugs
    Mary x
  13. Princessraye

    Princessraye New Member

    You may have something that will be easy to fix . I pray that is the way it turns out.
    Don't be afraid to say that you do not have insurance and are unable to work when you see a provider. They may have resources to help you and if nothing else, do only the most important tests.
    I lost about 30% of my hair but that stopped after I started taking Thyroid. My medicine is 16.00 a month , not too bad.
    For the Fibro and Chronic Fatigue (I have had them 16 years)
    I am still working on finding something to help me.(besides pain medicine)
    I know it's scary. Breathe deep and hang in there. We are always here.
  14. Princessraye

    Princessraye New Member

    My thyroid was borderline, don't know about yours but after awhile I found a Dr. who would prescribe the thyroid even though my test was "normal"
  15. AutumnGirl

    AutumnGirl New Member

    You have NO idea how it warms my heart finding a place with so many who understand!!! I'm a little emotional today I guess because I'm at my wits end with all of this, but I'm incredibly thankful for those who've responded to my posts here, and for just having the opportunity to look through archives that are SO packed with information....from people who are experiencing the same/similar problems.

    Ella
  16. Shirl

    Shirl New Member

    Hi Ella, welcome to the board. Glad you found us, and I know you will find lots of information here.

    I don't have CFS, but I do have Fibromyalgia, and also get fatigue. Mine only lasts a few days at a time, but I know what it feels like to not want to move out of the bed, or too tired to eat even for a few days.
    It must be awful to try and work out with this illness. I know a lot do, and my heart goes out to them.

    I do not have a problem with my hair, in fact I have a lot of hair!

    I have always taken a lot of supplements, vitamins, minerals etc for close to forty years. That could account for my having hair, and it not getting grey either. Who knows??

    I hope you find some help soon, and feel free to ask any questions you have. We all try to help as much as possible.

    Again, welcome to the board.

    Shalom, Shirl



  17. LynneH

    LynneH New Member

    My hair has been falling out by the handful for years now... In fact, ever since I've been diagnosed with FMS. My hairdresser said I was lucky because it grows back in quickly! I swear, I have to clean my bathroom counter every day after I comb my hair...it's just everywhere. I should be bald by now! lol Anyway, welcome and I hope you get some answers soon.
    LynneH
  18. AutumnGirl

    AutumnGirl New Member

    I wish my hair grew that fast. Weird thing is that it's not JUST falling out. It's breaking off, the texture is TOTALLY different now. I have so many broken hairs all over my head that it looks ridiculous no matter what I do. It's not even typical "female pattern baldness" because it's more falling out in the crown area than in the front, though I can't even keep a small ponytail tie in it because it just slides right off in a matter of minutes. I can't even style it... nothing holds. It's naturally curly and used to be the ONE thing about me that I liked. But now I don' DARE wash it more than once or twice a week MAX, or it gets drier and drier and drier. Natural hot oil treatments don't work, and I've spent a small fortune on professional hair products. I can't consider layering it like some people have suggested to me because honestly...there's nothing to "layer." Let me put it like this...if a person with "normal" hair layered their hair and lifted all the TOP layers off, what would be left underneath...THAT'S about all the hair I have now. I look at pictures from about 3-4 years ago and I could just cry. I still liked my hair two years ago, even one year ago (before it started falling out by the handfuls), and I even liked my hair better than now about 4-5 months ago. I started noticing a SERIOUS change in texture (and breakage) in December, but I had no idea it would progress into what I have left now.

    I was thinking back to even 2 months ago and it wasn't even quite this bad then! Right now it frizzes badly, and feels & looks like straw. Actually, it REALLY looks like a dead animal pelt, to be honest. I can "almost" make it look passable, but the very instant wind blows (and it does here a lot) it's over. I live in a humid climate, so this Summer I'll most likely be home all the time. I am most of the time anyway, but my hair looks...well..."shocking." It's not "just dry," or "just dry and damaged," it's shockingly bad.

    I know this will sound silly, but when I do go out to places.. grocery store, mall, gym, wherever, I look for ANYONE who has hair as bad as mine. I've yet to find them. No exaggeration. I don't know what's happened, but to me...it happened FAST.

    :eek:(

    Ella
  19. AutumnGirl

    AutumnGirl New Member

    Thanks, Shirl. You sound very fortunate in the hair category! :eek:) I've always taken vitamins, etc. as well, and considered my diet very healthy for most of my life (but for my sweet tooth). I hate that ALL my siblings, and my mother when she was alive, all have GREAT hair! Thick and grows amazingly fast. Not me. I have 3 brothers and 2 sisters, none of whom I'm close to...haven't talked to 5 of the six in years and years (didn't grow up with them, I was a late-in-life baby). Anyway, the sister I'm in contact with says all the boys and herself and my other sister all have hair..no balding, no nothing. My sister, the one I do talk to, is almost 400lbs, has HBP, Diabetes, sleep apnea, high cholesterol, and has had a couple of 'mild heart attacks' (what the he!! is a "mild" heart attack anyway?), and her was down past her hips before she got it cut about a month ago so she could manage it better. It's so thick that there isn't a ponytail thingy that she can really use (too much hair). She gets it cut off and it's down to her waist in a year or two easily. My mom was the same way...even up til the day she died. Also, my sister is old enough to be my mom, and my mom was older enough than me to be my grandma. My sister is post menopausal and no hair problems.

    Guess I was just the lucky one in the lot.

    Ella
  20. NewEnglander

    NewEnglander New Member

    I didn't read your post, I'm starting to not feel well. But I did want to tell you that Autumngirl is my e-mail addy. God Bless you though. I'll try to be there for you next time.K, whatever is going on, God know's, and you will get the care you need here.
    Lisa