Newbie in need.......

Discussion in 'Fibromyalgia Main Forum' started by 1Candee, Apr 24, 2003.

  1. 1Candee

    1Candee New Member

    Hi, I'm a newbie but not new to the devastation, desperation, hopelessness and helplessness not to mention ill health that has befallen me over the past five years. I feel a little guilty whining today esp. after I just read the post from the girl with children who is about to lose her livlihood and my prayers go out to you hon.
    I stayed up late last night reading the bios and couldn't quit till I had read them all. It's amazing at some of the similiarities that we all have but some have symptoms that wax and wane differently.
    I have yet to be diagnosed with Cfids or Fm but there is no doubt in my mind that this is what ails me after doing a lot of research--I bounce back and forth from the anxiety/depression pages and other autoimmune disorders but I always end up back on CFS/FM sites b/c you all have me unrelenting symptoms.
    I, like others am very disappointed in the medical profession--the last time I went to see my GP for various symptoms and told him I was sure I had CFS and poss FM he said--"you really don't want to have these disorders!"--like it was all up to me and my thinking processes whther or not I had this. I cried when I got home b/c there seems no way around the ignorance of Drs. these days on CFS/FM and other autoimmune disorders. The most I have gotten done is ruled out other things like Lupus, Ms, etc.
    My story is like a lot of others(if I can stay unfogged I'll put my bio in tonight).
    A typical day for me is getting up about 10AM-getting some of the house chores done and I have pets to care for--napping in the afternoon---making it to the grocery if at all possible and trying my best to at least keep my house in order. Hubby works two jobs which makes me feel like a worthless imbecile and adds guilt to all the other emotions this DD brings up.
    I contracted Mono in May of 1999--at the time I had done home daycare for 8 yrs. was going to college(2nd yr.) as a psyche major, volunteering for battered woman's task force and numerous other things. I quit daycare and school at the end of 1999 and took 6 mos. off but to no avail on the symptoms. Tried other little piddly jobs for awhile but couldn't hack it. Found a job I loved working for woman's recovery center nights and managed to keep it for 1 yr. and 3 mos.--I worked alone so people couldn't really tell I was a mess of symptoms and fatigue. I had to give that up 8 mos. ago when I got graves eye disease on top of all the other CFS/FM symptoms. I have lot my self esteem, dignity, find it hard to relate to people b/c of fatigue and symptoms and my relationships are dwindling. It is really hard. These days I suffer from major fatigue, sore throats, ear pain, sinus probs, eye/vision probs, dizziness/off balance, brain fog, aching joints, on and on and on--you all know the rest. I just needed to vent here and now I feel the need to take my aft. nap so I can be up later when hubby gets home. I am so very lonly, can't make plans, can't think straight, etc.
    The post from the UK guy who got well has given me a little hope but I know I have a long way to go. I'm glad to have found this site with it's wealth of info and caring people. Any advice would be appreciated---feel it will be like peeling an onion--a day at a time trying different things that may or may not work for me. Bless you all for being here. 51 yr. old going on 90 in Kansas. (((Hugs))) Cat
  2. 1Candee

    1Candee New Member

    Post on anxiety!!?? Could it be brain fog yet again?? On this board? Don't remember seeing your e-mail. I posted a couple of times on the thread "always thinking the worst>" My email addy is kalujac@parod.com and I'd love to here from you. It really helps to have someone who understands--getting through this alone has been almost impossible. I'm going to do my bio, look over the board an I'll check my mail and back here. Cat
  3. tandy

    tandy New Member

    Welcome to the group! Glad you found us! I was very glad myself to find this place a year ago~I guess misery loves company!lol No,mostly its just nice to know of others that struggle with the same symptoms....kinda makes you know your not otta your mind! I would be persistant in getting a DX if I were you~ It seems pretty obvious from your discription that your dealing with these DD,both FM and CF~ Like you-I tried my hardest to hold onto my retail management job.But soon knew that I was doing myself more harm than good. I was DX at the age of 30,with small children to raise.I even made it thru another pregnancy in 96. by then my FM had progressed so much that I had my tubes tied because I was having a very hard time keeping up with the house&kids~ I napped when they did,crock pot meals or soup and sandwiches became the norm for us~ The worst part of all this is the ignorance of Drs. and people that think we have nothing better to do than to make up feeling like hell each day!! secondly-Not being able to make plans!!The memory being shot is'nt so fun either!! Sorry to have rambled so......Really I wanted to say HI and welcome you....I guess I got a bit carried away!Hope to hear more from you~
    BTW....Having Lupus and other aotoimmune diseases eliminated from your DX,I take it you've been to a Rhuematologist?? I'm surprised that no-one can see ,Do you have the tender points?All your symptoms are classic of these DD. But,like alot of others,it took 5 drs. to get me DXed.(and 2 yrs later.....)Take care of yourself~
    Warm Regards,
    Tracey
  4. 1Candee

    1Candee New Member

    Hey Tracey,

    Don't feel bad about ranting about your symptoms and feelings of loss--it's what keeps us partially sane. I was in the psyche ward back in Oct. for a few days b/c I couldnot deal with the helplessness and hopelessness that I felt with all of these symptoms that seem unrelenting. My GP is always trying to put this on mental health b/c I am on meds for depression/anxiety and have been for years--feeel that it's a chichen and egg thing about which came first--have never been REALLY well for the longest esp. in times of major stress.
    I just got really discouraged making the rounds of different Docs w/ diff. specialities and even one Doc. who specialized in CFS--an infectious disease Doc. diagnosed me with a sinus infection--that's just one of many symptoms. He seemed really busy and just seen in my chart that my GP had written sinus probs and he went that route. They herd us in and out like cattle. I didn't get major fibro symptoms until this past year--seem to come on while I was on Prednisone for Graves disease or perhaps a reaction to the radiation that they did on my eye. Believe it or not the pain started in my right thumb--over days moved up my arm through my shoulder and back and then my legs, esp. knees and toes started hurting. I've had nerve testing on my arm it hurt so bad but results neg. and they said it could be carpul tunnel, tennis elbow or tendinitis--real conclusive they were---this is why I get discusted.
    Some days I just feel INFECTED--just like a bad strep or flu--been to the Doc many times for strep but he says it's viral. Of course like all of us, I want the old me back but I have lost the ability to think that tomorrow will be any better b/c I can tell I'm spiraling down esp. when I get overwhelmed with all of this which is often. Thank you Tracey for caring and understanding. I just cannot believe that God helped me sober up and has given me 13 yrs. sobriety only to have this happen--if he has a plan for me I really cannot see it. Sorry for the neg. attitude--we do have to vent!! (((Hugs and Happiness))) Cat
  5. Shirl

    Shirl New Member

    Hi Cat, welcome to our world! Sometimes it seems like we really are in a 'world' of our own, so few normals understand us.

    I see you have already make some friends, good for you. We have a great bunch of people here, always willing to reach out to someone new.

    I have gotten more help here on this board, than all the doctors I have see in the 20 plus years that I have Fibro.

    I am doing great right now, and I hope it continues.

    Again, welcome to the board, and hope you find what helps you too soon.

    Shalom, Shirl
  6. 1Candee

    1Candee New Member

    Linda,

    I got 9 of the same emails from you. I sent you a reply back on one of them---did you get it? Let me try again with "new mail" and your address. We'll get it right!! (((Hugs))) Cat