My story......

Discussion in 'Fibromyalgia Main Forum' started by bandmom90, Apr 15, 2007.

  1. bandmom90

    bandmom90 New Member

    Hi everyone! I'm new here and have not been diagnosed yet, but am sure it will happen soon. I need to tell my story so you can understand what I have been through for almost 3 years. I'm sorry if it's so long. Here goes....

    Almost 3 years ago I was in an auto accident. I was hit from behind and my car was totaled. Due to the accident I have trauma induced TMJ and SI joint dysfunction on my right side. Went through physical therapy and surgery to unlock my jaw. I was doing "ok" until this past fall. I had a complete hysterectomy(LAVH)and bladder sling. Was happy and feeling pretty good after surgery. Approx. 2 1/2 weeks after surgery I started feeling real bad. Fevers, leg cramps and so... tired. Thought this was all due to hormones(some probably was). The dr did an ultrasound to check for blood clot and it was neg. I continued feeling worse and started having shortness of breath. While all of this is happening I'm also on antibiotics. The saturday after Thanksgiving my dh took me to the emergency room. They found a blood clot in my left lung. Of course I was admitted. While in the hospital(total 9 days) I was diagnosed with EBV/CMV. Then to top all of that I was diagnosed with T-cell lymphoma/leukemia. The last was dx because my white counts(lymphocytes) were crazy. Most likely that dr jumped the gun because my BMB was fine and my blood work has been fine since. The second onc I saw wants my family dr to monitor my blood for 9 to 12 mos. I saw the 2nd onc a week ago and he is suggesting we look into FM because of the pain, sleep problems, etc. I have visable arthritis in my left knee(surgeries and probs since teens)and don't sleep unless I take something. My pain some days is horrible. I do take vicodin, but unless I lay down when pain is real bad it doesn't take all of it away. I have swollen glands, sick alot and my joints kill me. In the morning my hands are swollen and are weak through out the day. I could go on and on, but I will spare all that read this. Sorry again how long this is. If anyone has comments I would love to here from you. Thank you for all your patience while reading this. My thought and prayers are with all of you because it sounds so familiar.
    Bandmom90
  2. sturg1

    sturg1 New Member

    Wow... you have been through so much in the last couple years. Welcome to this board. You will learn so much from others, it has really helped me. Especially knowing that I am not alone.

    Did the 2nd dr do a tender point test on you? That would be a starting point, it was for me.

    Take Care,
    Sturg
  3. bandmom90

    bandmom90 New Member

    Thanks for the reply. He pressed around for lymph nodes and asked about where I hurt, etc. I think he was just going by symptoms and wants pcp to pursue this. He did talk about a med called amitriptyline and was putting that in notes to my pcp. I see my pcp on tues and am compiling notes so we can cover everything. I am on coumadin and have to be careful of other meds, but my pcp is very good about watching that. Take Care
    Bandmom90
  4. LadyC

    LadyC New Member

    Bandmom, this is a good place to come for support and understanding. There is a lot of good information here also. Going through so much would take it's toll on anyone especially if you also have FMS.
  5. bandmom90

    bandmom90 New Member

    I have been doing some research on the web since talking to the dr last week. I am getting info overload like with the lymphoma thing so right now I will talk to my pcp. he is a great dr and will do what needs to be done than i will do books or whatever it takes to help. Just really tired of all of this. thanks so much. it is good to know i'm not alone.