New to board. Scared - it's all getting too much...

Discussion in 'Fibromyalgia Main Forum' started by underwhelmed, May 24, 2003.

  1. underwhelmed

    underwhelmed New Member

    Hi There,

    I'm new to the board - and I hate to start on a down note, but I really just wanted to know if other people get as bogged down as I'm feeling just now?! This may be a long rant, I just need to get some of it off my chest.

    I've just been released for hospital after a suspected blood clot in my lung - they kept me in over night promising to give me scans the next morning, but never did, despite the fact that my calf and chest are still aching. It really worries me that the medical profession are SO dismissive of genuine concerns. I have a family history of clotting on mymum's side and my father died of a pulmonary embolism (so you can understand why I am scared?)

    The doctor I saw lost interest in treating me when I mentioned ME/CFS and his opinion was that it is "a diagnosis of desperation rather than a FACTUAL condition!" Angry does not even begin to sum up how I felt, but I was so polite cos I just wanted to be treated fairly. Not that that happened anyway!

    Whilst all of this is going on, my mum is in hospital too waiting for major bowel surgery (hopefully the reversal of a colostomy too) and treatment for deep seated abcesses- an ongoing condition, which I've been nursing her through since last august (not easy cos I've been ill myself in varying degrees - CFS - all the usual joys - irritable bowel, throat infections, apalling tiredness, dizziness and coordination etc - you know how it is)

    The final straw came this morning when my (on-off) partner chose to end our relationship. Timing that only a man could possess (sorry to any males that are reading this, but I have an excuse for my lack of enthusiasm in the opposite sex)

    Aaaaaaaargh! Cried all morning, but got hold of myself before going to the hospital this afternoon to see mum so as not to upset her. So fed up of being bright and cheery - the fake smiles and upbeat attitude. I'm crumbling and nobody knows it - apart from my partner who has just walked away. I should know better than to expect people to be there for me, but what gets to me is that I'm the first person anyone brings THEIR problems to...

    I know that there are so many people worse off out there, and I am very grateful that I possess what little health I have. After spending the night on an Oncology ward due to bed shortages, I'm doubly thankful than I usually am, but I still feel SO lost and alone at the moment. Any suggestions for raising morale???

    Love and hugs to anyone out there that feels like this too -and those that don't for that matter.

    Bud x


    [This Message was Edited on 05/24/2003]
  2. layinglow

    layinglow New Member

    Bud---
    Please Bud, get the scans and test done for the possible blood clot in your lung. We just lost a 39 yr. old, who died from a blood clot that was not taken seriously because FM/CFS was mentioned, and was in the hospital at the time.

    Start over with another hospital and Doc if you need to...and have this investigated. Don't tell them of the FM/CFS so that they will dismiss you. This needs to be taken seriously, especially with a family history.

    Best wishes,
    LL
  3. Princessraye

    Princessraye New Member

    I know you are crumbling........I have been for a long time.

    I lost my dad to a blood clot so I understand your concern.
    You need to go see someone else and soon and also someone different for your me/cfs.
    Although my Dr. can't find much to help me he does believe I have this condition and that helps. Most of us have been to the unbelievers.

    I know you are really busy with other things right now but try to do something for yourself. Even just getting out in the sunshine for 10 minutes. You will be no good to your mum if you don't take care of you.

    I hope knowing we understand and care will raise your moral a bit.
    You are a very strong person to be dealing with all of this.
    You and your mum are in my prayers.
  4. sujay

    sujay New Member

    Bud, Please listen to Layinglow and get back in for more testing as soon as possible. Once you get a doctor's attention, see if he's willing to look into the possibility of hypercoagulation or "sticky blood". I'm a family physician practicing in the States, and I'm convinced that a lot of our symptoms are due to a variant of this problem. You can start finding out more about it by checking this board's search engine for ISAC or hypercoagulation. But please don't hesitate to get back for a proper evaluation. We just lost another member of our community a few days ago, and I suspect she might still be alive if her doctors had only considered the possibility that she might have a form of non-overt DIC. Let me know if you have any more questions for me. Just be sure to include my name or "hypercoagulation" in the text of the message and I'll be sure to find it and get back to you.

    Take care now, and good luck,
    Sujay
  5. bejo

    bejo New Member

    I know what you mean.I also get so tired of acting like I feel good.Nobody wants to hear how I really feel.I cry a lot too,especially weekends.I don't know any ways to raise morale,but I wish I did.It seems like we crumble inside but nobody bothers to care.So anyway I can't help you feel better but I can feel bad with you so you don't feel alone.((((((((((hugs))))))))))) bejo
  6. Shirl

    Shirl New Member

    Hi Bud, welcome to our world. So sorry you are having so many problems at once. Thats so terrible.

    You be sure and take the advice here, and go have those tests done.

    Again, welcome to the board.

    Shalom, Shirl
  7. susabar

    susabar New Member

    it's time you started taking care of yourself... it sounds like you are long overdue!! I know how difficult that can be especially in light of your mother's illness.
    Let me tell you I strongly believe even the little things make a world of difference, like just lying down for 15 minutes with your eyes closed. I try to keep a balanced life as much as possible, with this I am able to work full-time. You have to get to a place where you put yourself first, which isn't easy for women in general. i am proud of myself because I said no to my husband who wanted to have the whole gang over for Memorial Day ( of course I do 95% of everything) and I kindly and politely said , I'm just not up to it! It's so hard having this ailment, and having people understand even family members, but I have found you have to do what you must to protect yourself because no one else will, no matter how much they love you. You are better off without that partner, I am sure it's his loss.
    I hope you will feel better soon
    ' God Bless
    Sue
  8. garyandkim

    garyandkim New Member

    friends! Many here would say don't tell that you have theses DD's and just give symtoms if you are seeing one of these neandrathal medical people or ER. As someone said we lost one of our friends here due to an Embolism. Go to a different doc and start from scratch and please do get checked. The tests are a must and we know some with FMS that have to take blood thinners due to blood clots.

    You have been through a great loss and unfortuatly you must become your own advocate and researcher. Keep a daily log and a list of all your symtoms and meds and copies of your records and tests.

    Try to keep a sence of hummor and know that we are all here for each other.

    Take care and again, Welcome! Kim and Gary
  9. underwhelmed

    underwhelmed New Member

    Thank you all so much. I will try to be seen by another doctor about the possible blood clot - maybe if I go privately rather than through the NHS I might have more success. So sorry to hear that a member recently died from a clot, please pass on my condolences to any friends and family that you are in touch with.

    Sujay, could you possibly explain to me what non-overt DIC is, so that I have as much info as poss when I go to the doctors? Is it a different form of clotting from Deep vein thrombosis? I'll try searching for info as well about hypercoagulation.

    I feel slightly more positive today - mainly because of reading your messages and knowing that people understand. It helped a lot (although I did cry as I was reading them - how pathetic am I?)

    Thanks again for being so understanding,

    Bud