Discussion in 'Fibromyalgia Main Forum' started by Gothbubbles, Sep 26, 2008.

  1. Gothbubbles

    Gothbubbles New Member

    Still haven't won social security. I think it's been 3 years now?

    My boyfriend lives in another state. I have to wait until he moves to see me. I have been dating for 2 years.

    I have scary neurological symptoms doctors can't explain. A new stutter that is so bad sometimes I can't talk at all. I can't feel my hands anymore. I take too many drugs to have CHILDREN. Even worse my neurologist "can't see me" until DECEMBER. Even though many of my symptoms are rapidly getting worse, and I'm getting new symptoms.

    I had been doing better with a lot of dedication to pool therapy for over a year. It was HARD to keep it up. And now it seems like it was for nothing. Everything crashes down in the course of a few weeks and I am lost again.

    I can't talk to anyone about this. They don't know how to help, and all I do is make them worry.
  2. cct

    cct Member

    I have had CFS for almost 20 years. In all of those years, I have found that all of my symptoms come and go.

    The symptoms get worse and then, eventually, the symptoms get better. Even the most frightening neuological symptoms have gotten better.

    So, hang in there. It will get better.
  3. ladybugmandy

    ladybugmandy Member

    hi. it saddens me that there are so many people going through this. all i can say are not alone.

    i am trying antivirals...have you tried to look for infection?

    do you have medicare or bluecross?

  4. 3gs

    3gs New Member

    You sound like your getting overwhelmed and it can be discouraging to go backwards and have new symptoms pop up/

    Ck site for help with SS.

    Did u tell doc that things were getting worse? Maybe they can see u sooner.

    Try to hang in there and not stress.

    Hope things get better. You can always "talk" here!

  5. quanked

    quanked Member

    you can always go to the ER. Perhaps you might consider finding a physician that is better able to meet your needs. As far as I know most doctors block out time everyday for emergency appointments. If nothing else, you could demand to be seen on an emergency basis if you feel your health is in immediate danger.

    There is a lot of information here. The depth of knowledge here amazes me. Some of us do not have much brain fog and some of us are disabled by it. Those who have clear minds are a gift here as many of them are able to articulate information, ideas and solutions very well. You may want to post your symptoms and ask for input from the members here. The information you receive may help to normalize your symptoms in the context of your disease. This might reduce your fear level.
  6. Janalynn

    Janalynn New Member

    Hi there!
    Excellent advice given so far!
    I'm sure you feel alone, overwhelmed and scared. Try to relax and as mentioned above - use this site to get some comfort. I'm sure many people here with CFS would be happy to assure you.

    Do you have a regular Dr.? If things are really bad or you're really scared - I'd call and say I need to get in right away. She/he can then tell you if it's something that needs immediate attention from your neurologist and can maybe make a call or help you in some way. I've never had a problem getting in some place when I tell them it's an emergency (to me). I just tell them it's something I"m really worried about. It's all in how you present it.

    When you say you can't talk to anyone about this - do you have ANYONE you talk to? Your family? your boyfriend? Yes, they may worry, but they are also your support system. None of us like to worry our loved ones (I'm the worst!), but sometimes just talking helps - NO they won't know how to help cause no one can fix you - but that's not what you're talking to them for - not to be fixed, just to be heard.

    You've got a lot of feelings happening at once. It's normal to feel a bit overwhelmed. Take one thing at a time.
  7. mbofov

    mbofov Active Member

    First, I'm really sorry you have to go through all this. I agree with the others - go to the ER, or see a regular doctor, but don't just wait for your neurologist. It seems inexcusable that he/she won't see you for 3 months.

    You say you're taking a lot of drugs - have you researched their side effects? My mom had severe reactions to 3 different medications. The doctors knew nothing about these side effects, and I had to read all the fine print myself that came with each med, and discovered the side effects. The medicines were stopped, and her symptoms stopped.

    So it's possible some of the drugs you're taking may be making things worse, and your doctor may not know. It's really not uncommon. If I were you, I'd read all the very fine print that came with each med. You can find it on-line if you don't have the package inserts.

    Good luck - take care -


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