Brand new here and need help

Discussion in 'Fibromyalgia Main Forum' started by IngaDinga, Mar 4, 2003.

  1. IngaDinga

    IngaDinga New Member

    Hello ~ I am a 35 year old single mother of two girls. I have been sick on and off for 15 years. It started when I was 21. I was young and healthy and bike riding 15 miles a day. Within a week of having a serious battle with the flu I could not cross campus without feeling like I would pass out. I had constant headaches, joint pains, fatigue (beyond belief)and also arrhythmias.I have been to doctor after doctor and specialist after specialist. I have been to mayo clinic and told by them to see a psychiatrist. :(
    My local doc thought I had Lyme disease though all bloodwork was negative. He treated me for lyme and I did recover some though not fully.I have continued through the years to be unwell and unable to do most things that people my age can do. Shopping is difficult as I cannot stand long periods of time. I am always exhausted. I cannot think clearly. And now this past year I have begun to experience muscle twitching and difficulty swallowing and speaking. I am terrified that my symptoms are progressing and my chilren will be left without their mother. I konw I shouldn't tink that way but it I so hard when you are unwell with no answers.

    I have recetly had a barium swallow that showed decreasedesophageal motility. Does anyone else have this? Does anyoe else feel as thoug it is difficult tospeak or that they are slurrng? I also have very dry eyes and dry mouth. Also, yesteay I passed out within 8 minutes of a tilt table test. Stupiidly I searched online and diagnosed myself with a degenerative neuro disease.

    Thanks for listening. Just needed somewhere to vent and hopefully find some friends with similar probles.
    [This Message was Edited on 03/04/2003]
  2. layinglow

    layinglow New Member

    Hi Inga, well you have certainly come to the right place to find friends with similar problems! I have those symptoms you describe too! I have four children, with only two left at home now. I know how hard the day to day can be. Have you tried someone specializing in Fibromyalgia? I finally found a Great Doc, and it has made a huge difference for me. Although it is a days drive, it is certainly worth it, one for validation, two, having an advocate is awesome, and three, I am finally receiving treatment, and some of my symptoms have discontinued or are much more manageable, now. Although I am not well, by any means, my quality of life has been moved up a notch.
    Don't overdo, and try to be supermom---lol, you have already found that out, I am sure. Pace yourself, and realize that these DD's are not fatal, and assure this notion on your kiddos....although I don't function well, sometimes, I will always be here for you. These DDs take a toll on our kiddos security, sometimes.
    Best wishes, and welcome,
    LL
  3. BonBons

    BonBons New Member

    I'm sorry to hear you are feeling so badly, especially, it must be hard with children at home. One thing I am very grateful for is that my son is grown up. However, my 11 year old Maltese still thinks he's a puppy, and acts like a 2 year old and no hope of him growing up! He growls at me when I'm on the computer. I laughed when you self-diagnosed. I used to do that all the time. But you often learn a lot just by doing that, and it is YOUR body and health. Stay warm, stay fear-free, and welcome to a wonderful group of people and an amazing amount of information you can get NOWHERE else all in one place!
    BonBons
  4. kerrymygirl

    kerrymygirl New Member

    Most Lyme tests are not totally reliable I believe there are only a couple of labs that know how to detect advanced Lyme. If you have it or was bit you would have to be treated in the 1st mo. with doxycylene,usual antibiotic used. If it is not caught in 1st mo. the bacteria hides deeply in the tissue and is very difficult to locate. Very few docs. know about lyme,a few immunologist out there do. If they gave you short time antibiotic it was probably too late. Some people with lyme go 2 to 3 yrs. on IV antibiotic for advanced lyme, which is very controversial. I got meningitis and never was quite well again it appears it started with lyme but was almost 10 yrs. before they think that is where my problem started now have fm,epstein barr,and numerous dysatuonomia problems. That bacteria is extremely difficult to find by labs or antibiotics. I to was extremely active and went down hill for the past 15yrs.My kids are grown now but I remember how difficult it was to take care of them as I was getting worse. The mayo clinic as mentioned in previous articles really does not get our problems from an article posted here they ae behind the time atleast 10 yrs. So I would not but alot of stock in what they tell you , my friends that went were( very )disappointed and spent alot of $$$ for them to help,these are people I know with fm.<<<Hugsss>>