Agoraphobia , Is This One of the CFS/FM Symptoms ?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jun 24, 2009.

  1. greatgran

    greatgran Member

    Since CFS I have agoraphobia, along with the anxiety/depression? Anyone else?

    I can manage to go around town and local places on my so called good days but the thoughts of going out of town or some strange place really scares me. I am afraid if I go I will have one of my CFS "spells" which I doubt my dx so often.

    Seems I will be doing ok and all of a sudden I just get so sick. Weird feeling in head, off balance, vision problems,nausea, achy, Big Fatigue, and I feel like I have a sinus infection but without the sinus symptoms, So to bed I have to go.. Does this sound like CFS/FM ? My symptoms vary from day to day and my doctor is clueless.

    Oh, while I am here venting, I can't lie flat, like on a table at the doc's or to get an x-ray etc. In bed I use 3 pillows. If I lie flat I feel like the inside of my head is dizzy. Anyone else like this?

    I have tried so many supplements, meds, diets, etc. and one day I think I am improving only to find myslef flat on my back again.
    I am so discouraged and confused.

  2. jasminetee

    jasminetee Member


    I totally understand what you're saying. I'm 95% bedridden with CFS and FMS myself. I can lie flat though, I'm so sorry you can't. I'm very dizzy most of the time too.

    I'm unable to travel anywhere either. I'm just too disabled.

    Since you doubt your diagnoses maybe you do have something else that's disabling you. Either way, you sound like you're homebound because of physical symptoms, not emotional/mental ones.

    Agoraphobia is a condition where people are afraid to leave their houses for various reasons other than physical health problems. For them it's psychological. You are truly suffering something physical.

    Did a doctor diagnose you with CFS and FMS?

    I hope things change for the better for you. I know how extremely distressing this is.

  3. greatgran

    greatgran Member

    Sorry, you suffer so with this darn dd. I have had many Dx from doctors, just depending on what doc I see. I was Dx by a Rheumy with FM but no tender points, another dx me with CFS and so does my GP. I have also been Dx with GAD, Sinus infections, and most of them say I just don't know.

    My problem is my doc won't order test I want, he is the doc but I would like to have some more test to rule out everything, he doesn't feel they are necessary so guess I am going to have to accept what he says. We live in a small town and not many doctors Its hard for me to travel out of town .. but if I could find a good one I would give it a try.

    You just feel so darn bad you think they would know a cause if not a treatment.

    By prayers are with you and I do hope you have some good days.

    God Bless and Thanks for your reply,
  4. 3gs

    3gs New Member

    I understand totally,you and I have so many of the same symptoms.

    I suffered from agoraphobia in the past. I have noticed a return of my anixetylevels with CFS. There is a difference. If you had agorphobia you wouldnt even be able to leave your house.

    Its hard to go places now and I even get anixous if someone wants to come over. Think this has to do with the sensory overload with CFS.

    My sinus are chronic but not always an infection. My NUCCA doc helps with this.also helps with fogginess ringing ears alot of my symptoms even fatigue,helps with blood flow to brain also have u tried myofascal release?

    I think its a matter sometimes of excepting the CFS and all its weirdness.

    hope u feel better
    [This Message was Edited on 06/24/2009]
  5. greatgran

    greatgran Member

    Oh, hate to hear you have so many of my symptoms but good to know someone who understands. Yes, my anxiety/depression is so different with CFS than it was before. Have you found any meds that help, if so what are they. What is a NUCCA doc and myofascal release?

    Seems my crashes or whatever come doesn't matter if I overdo or not and instead of the sore throat I get the sinus thing? I never had sinus issues before CFS but now seems I can't get rid of them.. I don't have facial pain , just awake with a headache between my eyebrows which seems to go away once I am up but then I have the horrible aches, fatigue etc.

    Yes it is hard to accept , there are days I think its all in my head .

    May you have some good days.
  6. 3gs

    3gs New Member

    NUCCA is upper cerival doctor(they are listed under chriopractic but are try ing to change that is this is different)

    When my head stuff becomes really bad I know I need a treatment. I really think it has to do with blood flow and aliging your spine. My sinuses will chill out ears stop ringing,brainfog clears,its like something opened up. Also really helps with the back pain. This doc got me functioning again.

    The headache between your eyebrows. sounds like myofasical pain. Its like a knot and painful. You can get these all over. gently massage in small circles around your eyes down your nose and cheek bones. even along your jaw. You could be tensing up when u sleep.

    grapeseed extract seem to help too. I ran out and it seems slide back down.

    Has your anixety seemed more like agition?

    hoping u are having a good day
  7. jasminetee

    jasminetee Member

    Breathe Easy Tea by Traditional Medicinals helps my sinuses and gives me a little energy. At night I drink Cold Care PM tea if when they're acting up.

    Thanks for your sweet reply Greatgran.

  8. greatgran

    greatgran Member

    You said it all , man you have cfs down pat and thanks for the info on why our brains don't function like we would like. Do you have weird head feelings I wish I could explain them it is like the inside of my head is dizzy and sometimes like I am fadding away or passing out but don't. Its like I have a sinus/ ear thing but I don't and the vertigo is terrible. I want to do but my body won't let me and I am getting so depressed by not knowing what to do with myself..

    Thanks for your reply and God Bless,
  9. Leaknits

    Leaknits New Member


    Fast answer to your subject question: Maybe.

    Lots of us tend to hermit, hole up, put "Leave me alone" notes on our it what you will.

    It's just MO but I think a lot of us are not precisely agoraphobic but just can't deal with all those overly-perfumed and asinine (as in "Oh yeah I get tired a lot too, I must have what you have) people out there in the world.

    Yes gg, symptoms vary from day to day. That's why most drs don't have the least clue what to do for us.

    Unfortunately there is no "marker," a Sure Fire test result that will jump up and holler "Yes you have ME/CFS/FMS.

    The closest thing we have, I think, is a positive reaction to blood test for Epstein-Barr Virus. Downside to that: most everybody in the world has at some time been exposed to EBV so a blood test will show antibodies for EBV....but not everybody has this damned thing. Those are the lucky ones.

    Some miraculous day CDC Atlanta, Whittemore/Peterson Nevada and several other so-called facilities the employees of which claim they are trying to track down the source and possible cure for the monster with which we deal day in and day out and now add the drs who think it's perfectly okay to laugh at us, deny we have ANY problem, ridicule us, send us to yet other drs who don't have the first clue what to do, refer us to shrinks despite the fact this thing is not a mental illness except for the fact their ignorance can drive us nuts, tell us "It's all in your mind" until if we weren't so exhausted we'd bash the idiots with a desk lamp... well excuse the horribly run-on rant but mostly the answer is There Is NO Answer.

    I'm sorry.
  10. jasminetee

    jasminetee Member

    These last 2 years I sometimes feel myself fading away like you mentioned. It's like everything starts getting dark around the edges of my vision and my view becomes tunnel-like. I keep thinking, "Cool, this is it...I'm finally leaving this world", but then my vision comes back and everything just continues on as before. It usually lasts less that minute and it is the strangest thing. There's a strange kind of static-thing happening at the same time. I kinda like it. I just go with it.

    I also have something else that started a few years ago. I fall into a coma-like existence instead of falling asleep. I hate that. It's like I'm aware of my surroundings but I can't open my eyes and I also can't sleep. It's not relaxing but it's also not scary to me. It's just annoying. That can last about an hour and seems to just come and go for no reason like so many of my symptoms.

    I also get terribly dizzy. I find drinking some juice with mineral water helps that. I'm bedridden so I'm usually laying down at least. The worst thing is having it happen when you're driving or after you just put shampoo in your hair.

    If the doctors only knew....I think they'd be blown away.


    [This Message was Edited on 06/30/2009]