Discussion in 'Fibromyalgia Main Forum' started by oktoberlady, Aug 14, 2007.

  1. oktoberlady

    oktoberlady New Member

    Is it possible for someone with ME-CFS,FM to develope this? It's getting to the point I don't even want to drive. I have to work for the health insurance. I can't afford to take time off to go to more doctors and I can't afford more meds. I'm already on Lexapro.

    Nona in PA
  2. greatgran

    greatgran Member

    I got to the point I didn't want to leave the house and would not go out of town..Couldn't go to the doctors, in stores etc..I did not have this until after CFS-FM..

    I spent about two years mainly housebound..Then decided I was going to feel bad no matter what, so slowly starting making myself get out.

    Made my first trip out of my town on Monday it was a 6 hr round trip, with the help of xanax I made it..and proud of myself..

    I do have anxiety, panic some depression and agoraphobia..Xanax has helped me a lot..I have tried SSRI's but can't tolerate the side effects..

    Get help don't let this get full blown like I did..Yes, I think CFS/FM has a link in there somewhere..

  3. sbrucks62

    sbrucks62 New Member

    I have battled with this as a symptom of anxiety/depression for years. One of the main things that I've seen (at least with me) is I have to change meds after a certain period of time. I spoke to a psychiatrist about this and he said that over time (usually within a year), your neurotransmitters have become saturated with the medication and need a change. One of the first signs I have is agoraphobia and severe tiredness. The very first medication that I ever took was Buspar for anxiety. It is in a class of anti-anxieties all its own. It has to build in your system just like SSRI's but doesn't have the same sedating and addicting affects as the benzo's, But it is usually for generalized anxiety and not something more severe. It's an older medication and has worked for me like nothing else. It is also on the Walmart's generic list for $4!! I have been taking it for 18 years and it really works (at least for me). I still have to change SSRI's about every 8mths. Have you tried Zoloft? It has a lot of anxiety properties and really seems to work well. I realize that every drug works different for different people but if you've been taking Lexapro for a while, you might need a change. Ask your doctor about Buspar. I believe it may be worth a try if your doctor thinks so. Good luck!!
  4. fabricaholic

    fabricaholic New Member

    I have been fighting agoraphobia for years. I have just been officially diagnosed with CFSand FM in the past 3 years. I find that if I know where the bathrooms (my safe spot inside) are and I know I can get to my car (safe spot outside) quickly I can go to town without making a fool of myself. I still have problems with alot of anxiety when I go to a mall or where theres alot of people. I can drive over a bridge IF I'm in the middle lane.

    I have tried almost all of the antidepressents and antianxiety meds but have always had issues with the side affects. Xanax is the one that works for me, I carry a few in my purse everywhere I go. I also have found that "self talk" works for me as well. Sometimes I can talk/sing myself through an anxiety attack.If that doesn't work and I'm in a store somewhere, I'll go to the bathroom and sit for a little bit catch my breath and regroup (if possable) and try again,if that doesnt work then I go to my car and sometimes go home. But Then I'll force myself to go back a couple of days later.

    I think personnaly yes CFSand FM have something to do with this. I do notice hightened sensitivity when I'm having an attack.

    Just know you are not alone. Please make sure you see a doctor if you can. I would also recommend a support group if possable, you can learn alot from other's who deal with this. You can always contact me if you'd like. I'm here and available to listen anytime you might need.

    Be blessed

  5. daffysmom

    daffysmom New Member

    I feel that way alot. I don't won't to leave the house. Don't won't to talk to anyone or see anyone or go anywhere because I feel so bad. I just want to get in bed and pull the covers over my head and stay there forever but I fight it because I know that's not a good thing. Not only do I have FM but I'm bi-polar also. I've been on Prozac for several years now but my doctor switched me to Cymbalta about a week ago. So far so good. I'm not having any problems with the switch and it does seem to be helping me with the pain. I guess we just have to keep fighting the urge to hide not only for us but for the ones we love. Good luck.
  6. klutzo

    klutzo New Member

    Hi all,
    This problem has limited my life more than any other in my 21+ years of illness. Here are a couple of reasons that I have seen put forth as to why this happens to us:

    1. Low Human Growth Hormone levels (hGH). This is the stuff that replaces worn out cells and repairs damaged muscle cells. It is as close to a "fountain of youth" as you can get. 80% of hGH is made during deep sleep, and we don't get any. When hGH is low, people tend to withdraw from social contact.

    2. Impaired immunity. In FMS/CFS, the TH2 immune system is overly dominant, while the TH1 system is asleep at the wheel. This leaves us wide open to TH1 diseases, and serious allergic reactions to TH2 stimulus. When your immune system is impaired, your body will protect you from the contagion that increases upon exposure to others, by making you desire to be alone and away from crowds, just as you often see a sick pet go and hide in a closet.

    3. When your neurotransmitters (NTs) are too low, especially serotonin and norepinephrine, you cannot block out extraneous stimli in your environment. All of the noise and movement of the world comes rushing at you and your brain cannot sort it out and block out things you do not need to pay attention to. This alone can cause panic. Research at Brigham and Women's Hospital showed that 100% of 3,400 FMS patients tested had hypothalmic-pituitary-adrenal axis dysregulation, which explains why the NT's are so out of whack. SSRI's should help, though I do not see them as a long-term solution and prefer natural methods like 5-HTP, Magnesium, and GABA. (warning- do not take 5HTP if you have heart disease!)

    I find that on my rare good days, I will jump right in the car and go somewhere. As a former Psychiatric Social Worker, I can tell you that true agoraphobia does not operate that way at all. You do not just suddenly recover from it for a few hours or a day. Recovery from true agoraphobia is a slow, progressive process using behavioral therapy. It does not come and go. That is why I believe it is physically caused in our case.

    For me, a combination of Xanax and Luvox works best, but I had to stop the Luvox due to a drug interaction problem, so I now take Verapamil ER. It does not work as well, and I have mostly stopped driving as a result. Over the years, I developed a heart rhythm problem that is triggered by my panic attacks, called PSVT, so there is a real risk in my driving, ie. blacking out. That makes it harder for me to push myself to do it, since I have the added fear of maybe crashing and hurting someone badly or worse.

    I believe this progression in symptoms happened because I did not know for so long that my FMS was caused by Lyme Disease. I would urge all of you who have not been tested for Lyme to do so, since proper antibiotic treatment for several months has reversed the panic problems in many people I know of. (I am allergic to the antibiotics that kill Lyme, so I am screwed).

    Best of luck with this difficult problem.
    With empathy,

  7. oktoberlady

    oktoberlady New Member

    I've only been on Lexapro about 2 months. I'm highly allergic to Zoloft, Prozac and Cymbalta. I've taken 5-HTP before and would rather go the natural route than more drugs. I will talk with my doctor and see what she thinks. Thanks for all the suggestions and support.

    Nona in PA
  8. Cinderbug

    Cinderbug New Member

    Agoraphobia is one of my many symptoms secondary to panic disorder. I have not tryed to drive or leave the house alone ( I don't leave much at all).
    I take Xanax twice a day . It keeps my panic (usually) at a managable level. I had over a year of talk therapy with very little help. I have tryed tons of meds. Only the Xanax helps me. It just has to be used very carefully and never discontinued abrubtly.

    I have CFS . The more fatigued I am the more I paniced I become.

    I am really not sure but this probably the main DX that got me approved for SSDI.
  9. butterfly83

    butterfly83 New Member

    For people who have this - what is the treatment? has anything helped you overcome this? I'm concerned about whether some of my anxiety and sometimes panic attacks fall into the category of agoraphobia. I didn't think that this was related to some of my issues, but when I read the the definition included a fear and avoidance of situations & places that have caused previous panic/anxiety.. well I do that. Between the fibro and some other medical issues, I've had some bad experiences, and there have been several things that I view as triggers for me getting sick - driving, and traveling being the main ones. I want to be able to do these things, but getting physically ill while doing them has made me fearful of trying them again. I'm just starting to get concerned about whether the fear response is making the physical symptoms so much stronger then they might be naturally. If that makes sense.

    Anyway, someone who knows more about this, or has pursued any answers or treatments, I'd appreciate some advice!
  10. nina_and_me

    nina_and_me New Member

    I am so sorry that you're experiencing this. I can be really scary. At one time, I was afraid to go outside to get the mail without taking my dog with me, and even then, I was scared.

    I started showing signs of agoraphobia several years ago. Since then, it has worsened. Driving, in particular, is a big hurdle for me. Before all of this started, I had no trouble picking up my keys and driving to any place I wanted to go.

    One thing that has helped me is a friend. She knows about this phobia and does everything she can to prevent me from being housebound. She picks me up and we run errands with her two toddlers. She picks me up and takes me to her house and I spend most of the day with her. I go with her when she visits her mom, etc. The more I get out, the better I feel. She always tells me that she'll take me home whenever I want. It helps that she's with me when we run errands because I'm not alone.

    Another thing that helps is driving short distances with no destination - even a couple of miles - with my dog in the car. Again, I'm not alone, and someone is there in case I get scared or panicked. My social worker wants me to do this to start desensetizing me to my phobia.

    I used to spend hours in the library, shopping, going to the bookstore, meeting people for lunch, going to a movie alone - anything I wanted to do. Now, I have to really work at it, and often, I have to have a driver/friend to go with me.