new diagnosis,

Discussion in 'Fibromyalgia Main Forum' started by Sandyz, Nov 24, 2010.

  1. Sandyz

    Sandyz New Member

    I have had Fm/CFS for over 20 years and intersistial cystis for 5 years. One month ago I found out I have a syrinx which is a fluid filled hole in the spine. I am so overwhelmed having another big thing to deal with and even more pain. Syrinx are also very serious things that can cause serious problems, even paralyzes if it gets a lot bigger. With each no diagnosis I get more shut down and withdrawn. I hardly every laugh or feel like talking anymore. I just need some encourgement and support at this difficult time. If anybody has a syrinx please let me know your experience. People with Fm do you find yourself not even feeling like talking like me? Thanks for listening!
  2. lisadot

    lisadot New Member

    Hi Sandy,
    Sorry to read about your situation. I have FM and IC, which is enough to contend with. I can imagine you would feel overwhelmed and depressed with this new diagnosis. Do you have a therapist to talk to? I highly encourage them whenever possible, because these conditions are chronic and can lead some people to feel depressed, which it sounds as if you may be heading towards.

    I am a nurse, but I'm afraid I know next to nothing of the treatment for your new diagnosis. Maybe there is a specific support group for spinal disorders near you. I realize that's not completely specific, but there may be people there who can help.

    Do you have any funny movies you can watch? Old I Love Lucy reruns? Anything to get you to laugh. Something to distract you?

    I send you my hugs and best wishes, and hope you have someone close to you who you'll be spending the holidays with.

    ...Lisa
  3. Sandyz

    Sandyz New Member

    Your kind words mean alot. I have been thinking about doing some counseling but I don`t have the energy to go out that much. I also live in a rural area so I would have to drive 60 miles one way to see a counseler. I have been thinking online counseler would be a better option for me. I have found a online support group for the syrinx so that helps. I am learning about it. And a few have both Fm and the syrinx so I am learning alot there.

    Thank God I do have a supportive hubby and yes, I do have a great family to spend the holiday with. Luckily my niece is cooking the main part of the meal so I only have to cook a couple side dishes. Happy Thanksgiving to you and your family Lisa!!
  4. gapsych

    gapsych New Member

    I have found a support group for springomylea at the following website. It actually gives you two support groups but don't know if they are the same.

    This board sounds religious but its not, if that is a concern but they do have more general groups for things like this.

    http://www.dailystrength.org/c/Syringomyelia/support-group

    Good luck and let us know how you are feeling.

    Take care.

    gap

    ETA, I put the URL for the support group but it will take you to google results but you can't miss it as it is at the top.

    [This Message was Edited on 11/24/2010]
  5. gapsych

    gapsych New Member


    I sometimes go to patientslikeme. I don't go on the forums since I usually post here, but they do have a good system for charting how you are feeling, sleep patterns and other symptoms. They also have a library of articles.

    You have to sign up. When you do this put syringomyelia in the search box. This takes you to the CFS/FM board which has a subtopic of people with syringomyelia along with FM/CFS.

    gap
  6. Sandyz

    Sandyz New Member

    thanks alot Gap, I will sure check that one out!:)