I'm new here...

Discussion in 'Fibromyalgia Main Forum' started by DizzyBlonde, Aug 4, 2003.

  1. DizzyBlonde

    DizzyBlonde New Member

    Hello. I'm new here. I think I found a link to this site via a WebMD message board, but can't really remember. Go figure. Anyway, I don't really have any confirmed DX to date yet ~ (feel free to read my bio in my profile)~ long story.
    It wasn't until yesterday that I truly looked into the possibility that I may have CFIDS. I was reading an article in PEOPLE magazine about Laura Hillenbrand (the author of that book "Seabiscuit") and how she copes with having CFS. The article mentioned some of her symptoms and how the disease affects her, and I just started to cry! It really hit home with me. So, I spent most of today researching CFIDS. It fits so well to what I have been experiencing for the past 5-7 years that I just sat here at my computer and cried. Tears of revelation as well as tears of continued frustration.
    As you may have read in my bio, thru all the different doctors I've been to, only one briefly mentioned the possibility of CFIDS/Fibro, but he immediately discredited that as NOT being a "real diagnosis"...therefore I never persued that avenue...until NOW.
    So, here I am. I only pray that I will find someone here that can TRULY UNDERSTAND how I feel and maybe give me a little hope. My family loves me, no doubt...but they don't understand what I go thru every day. I try not to talk about it because I feel like they really don't want to hear it and they don't know what to do with it.
    I hope some of you will respond...even just one of you.

    Sandy
    [This Message was Edited on 08/04/2003]
  2. Antenbunny

    Antenbunny New Member

    Believe me we understand. I'm going to copy and past what I wrote in another post cause I don't have the energy to do it again. Good luck.
    I often just read and not write because I am so tired. I don't have the energy to comprehend and or to respond. It's hard not to want to give up, or get frustrated by people who just don't understand. I feel I live an unusual life. Kind of suspended in some way, waiting for something that will help. Friends and family are also frustrated because I don't get excited by some herb or drug that comes out. I'm just am not sure I believe anymore that anything can help me. I know that each and every one of you live in your own personal hell. Trying to find a way to live life and find meaning in the days that pass to quickly. Each day hoping that someone will find out what this is and why we suffer so. Is it our lot in life, is there are reason why we have to life this way. My spiritual life has suffered so, I used to believe in so much, now...




  3. twerp

    twerp New Member

    I think you'll find this board an invaluable resource for excellent information regarding both CFIDS and FM. I know I have. I've had CFS for about 2 1/2 years now, and this is the first place I've found where there are people like me, who have had the same sometimes frustrating experiences with Drs., etc. You'll also find lots of suggestions regarding things that have helped others and may help you as well. If nothing else, it gives you a place to go and "talk" where you know that someone will understand.

    Again, welcome,
    Twerp (also another dizzy blonde! Ha!)
  4. LauraLea

    LauraLea New Member

    Well you've come to the right place. Lots of support and great info here. I nose around once in awhile because I am one of the lucky ones who can still work.

    Welcome hope you stay and write often as you can.

    Laura.
  5. averilpam

    averilpam New Member

    welcome,
    there are lots of helpful, supportive people here.
    Hopefully you will find some practical help; you will definitely find bucketloads of emotional support.

    I know somedays coming here keeps me sane!

    If you just want to chat, or vent, hop on over to the chit chat board, it's lots of fun, some serious posts, lots of jokes and lighthearted banter alongside it to keep spirits up
    Pam xx
  6. EZBRUZR

    EZBRUZR New Member

    I am happy you found this site,it is hard bein icky w/o reasons,or other peeps that can relate.There are also a chit chat board,& chat room.Many ways to communicate with others that feel like you described.There is also an incredable amout of information to educate us and those in our lives. Peac,lisa
  7. PJB

    PJB New Member

    Welcome to this site. Are you the same Dizzy Blonde that posted on the Jamaican message board???
  8. Shirl

    Shirl New Member

    Hi Sandy, welcome to our world. Glad you found our board, I know you will find some friendly, helpful people here.

    I am not in too good shape tonight, so just stopped to welcome you!

    Hope we hear from you often.........

    Shalom, Shirl
  9. Mar19

    Mar19 New Member

    Sandy
    You'll find lots of understanding here, believe me! I know what you mean about not wanting to talk with family/friends too much about your illness. I too get the feeling that everyone is just plain old tired of hearing about it. I look "normal" (whatever that is), but I sure don't feel normal.

    Feel free to come here to vent, or ask questions, or just to read the other posts and know you're not alone. God bless you.

    Love and blessings
    Mar
  10. MoPat

    MoPat New Member

    Hi

    I'm new too ... and already love the place because of the open, frank but respectful discussions I've seen so far. Glad you found this forum too!

    Pat
  11. LADYBUG2

    LADYBUG2 New Member

    Sandy, I hope you will find many answers that will give you at least some peace of mind,,in just knowing you are not alone...Many of us have several of the same problems, and at other times we will often feel like we have met our "TWIN"

    Most members here, are really good about replying to a posted question. And just jump right in,,,,,,,,, if you,, read a post,,and have something to share, it could be of a great benift to that person.

    The best thing,, "here for me is that",,, I am so lucky to have found,,,,, such a careing group of people.

    LADYBUG2
  12. hammanss

    hammanss New Member

    I haven't been here for ages and I'm still a computer novice but thought I'd say hello. I,ve had FM for years but have still managed to do my job (although not always to the standard I'm happy about)even though I only work 4 days. It was amazing when I found this site, as I'd felt like the only one who even knew of FM so like you have probably found out by now, that there are lots of ideas and advice on how to cope and live!I've been experiencing the fitest couple of months and I so appreciate it, but haven't a clue why now! I've managed to do all sorts of things, especially walking, I can reach the bus stop without my knees giving way and my pace has been consistent and a little faster. So, don't be disheartened there are times of 'being ok enough' you just need to make sure you don't overdo it then. I'm fortunate that I don't look like I feel most of the time, and although this means people around expect you to behave a certain way (e.g. giving up a seat to an elderly person on a bus when maybe you need it more)I prefer not to look like I'm suffering. I think it is often difficult for families to come to terms with a mum/wifes' illness and there is often an unsupportive denial whereby you may be expected to carry on with tasks at home, just as if everything is ok, when actually it isn't. My 'bug bare' is when I'm having a lot of pain, poor sleep yet trying to keep funcioning,when I'm presented with work colleagues moaning they're tired or have a bit of a headache etc. and when they describe their bad night, to me it would have been pure bliss and not even anywhere near my best night! It always seems difficult to share FM with people as they may ask about it but don't always seem to take it on board when you really need an extra bit of help fortunately some people are better than others, but it's very much a syndrome with ''BUT YOU LOOK SO WELL''. Moaning aside, I think once the condition is diagnosed it is usually a relief because all the different things which seemed to be wrong with you are all related and suddenly make sense. It was from this point I seemed able to take control over my life and learn how I needed to be, to function at a reasonable level. The whole situation made me relook at my life and consider how my energy should be rationed to ensure that I saved some for 'quality me time' to norish the spirit, not just work. In work situations it meant sorting out what is urgent, important and what can be left. I think my personal attitude and belief system gives me the strength when I need it most, I just call in my angels and then I am never suffering alone, so with this I send you love and hope for a brighter future, believe all will be well, but have your moments of moaning and self-pity, acknowledge your feelings but don't stay and become them.
  13. DizzyBlonde

    DizzyBlonde New Member

    Thank you for all your kind words of encouragement. I really needed that.

    And to PJB ~ No, I am not the same "DizzyBlonde" from that other chat room...{sorry}

    I do have a couple specific Q's regarding symtoms: Over the past year I have developed a "lump, or fatty mass" under the skin on my left thigh...above the knee and to the left. It doesn't hurt (numb actually), but when I push pressure on it, I feel sick to my stomach. It's the strangest thing!

    Also, over the past 6 months I have developed a very fine, pink rash sporadically over several areas. It started on just the left side of my face, but now is on my left shoulder and down back of left arm, and also on my thighs. It does not itch. Any ideas?

    I remember briefly reading somewhere that an enlarged spleen can be associated with CFS...is this true?? I ask because I have not been able to lay on my left side for several years due to an enormously uncomfortable feeling, like a big baloon inflated in my upper left stomach/chest region. I have thought before that it may be my spleen, but could not get any doctor interested enough to do an abdominal ultrasound. :eek:(

    I don't have a doctor at all right now due to no health insurance, but hubby may be getting work with a better company soon that will provide affordable healthcare. I pray for this. I just NEED a confirmed dx...to put a NAME on this.

    If anyone has had any similar experiences to the symptoms I've mentioned here, please let me know. It is a blessing to find others who can relate to how I feel. Thank you again and God bless you all.

    Sandy