Discussion in 'Fibromyalgia Main Forum' started by greatgran, Nov 9, 2010.

  1. greatgran

    greatgran Member

    I am not sure what is happening to me but seems I live in constant fear.. Not rational fears all the what if fears.. Afraid to take meds, afraid to do this or that, afraid something bad is going to happen.. Its not like panic or anxiety attacks it seems so much worse.

    So go to a new doc yesterday and she wants me to have an mri to rule out ms, after all these years.. I would have to mention my off balance, blurry vision and all this fear and crying.

    Then I have an appt. with the ENT and he says my sinus infection has never cleared up and that will cause all my anxiety, vision and balance problems. He said I must take a long term antibiotic to get rid of this ..

    Aren't these the cfs symptoms too? Oh, well in my panic mode that is all I needed to hear is mri, heck I fear going to doctors.. Its not so much the closed in thing its the lying flat for some reason I can not lie flat on the bed etc. I feel like a vertigo attack is on the way..then panic.. Oh, well.. I will get over this somehow.

  2. sascha

    sascha Member

    i got a sedative to help me through. i knew i'd be too scared otherwise. it was worth the price to be a bit befogged as i was in the tube. maybe it's a good idea for you?

    i, too, go to sad and dark places at times, am finding that tapping on energy meridian points as i go through the steps i've learned on how to apply it to be very helpful. if you're interested, look up EFT (emotional freedom techniques). you can go to eftuniverse.com for information. there's a free download to help you get started. EFT is consistently helping me with physical and emotional symptoms.

    good luck- hope your treatment helps you- and hope you check out the eft- best, sascha
  3. TigerLilea

    TigerLilea Active Member

    Hi gg - Don't skip having the MRI done. Tell them that you will panic in the MRI machine and ask them to sedate you while they are doing the test. There is no point in you going to a new doctor to find answers to why you are so sick if you are going to refuse to have the testing done. Having blurry vision and being off balance will not affect the test and there is no reason not to mention those if you are asked.

    I think you will find that people will have less sympathy for you if you are complaining of being ill all of the time, and then refuse to get testing done to get some possible answers :)

  4. greatgran

    greatgran Member

    I just feel I have to get this anxiety and depression under some control before I can go through any more test. Then I have to drive 4 hrs. round trip to get the MRI done. I figure a couple more months isn't going to make that much difference. Maybe if I get the sinus cleared up I will be able to lie down without vertigo.. I don't understand myself right now so don't expect anyone else too..

    Thanks for you input..
  5. greatgran

    greatgran Member

    I worked in a hospital for years then retired working for a surg.or should I say cfs retired me.. Nothing used to bother me as far as test etc. in fact I was always wanted them to rule out everything. When I had surgeries
    I wasn't scared, well a little anxious but nothing like this.. Thanks again... gg
  6. Tizz

    Tizz New Member

    ...But for me, it is mixed with a sense of futility.

    I know I should be more optimistic. I WANT to be upbeat. But the truth is, I've heard so many different diagnoses, I'm not sure I could ever completely believe what any doctor tells me.

  7. Mikie

    Mikie Moderator

    See Lisadot's post on anxiety. I've been fighting a sinus infection too and it just won't go away. Heck yeah it causes me to be off balance. My ears look clear but the eustation tubes hurt like hell inside. I've been on ABX but may need another round of them. I also snort saline solution and take colloidal silver. I even snort the silver. The warm rice sock I use to clear up my dry eye oil glands feels so good on my sinuses that I use that too. Good luck to you.

    Love, Mikie
  8. greatgran

    greatgran Member

    Thanks , I totally agree with you .

  9. greatgran

    greatgran Member

    Thanks , sorry you have an infection too.Do you have blurry vision also? I think I have had this one for a year.. I too use the saline and grapefruit seed extract.. I believe its all cfs related and at my age I am tired of trying to find answers. Will try to do what I can when I can and suffer in silence.

    Oh, how do I find Lisadot's post on anxiety? Speaking of anxiety, my 8 yr old granddaughter had soccer practice after school today and when my grandson went to get her he couldn't find her, he called me and we both were in panic, so I rush over to school but this panic is a normal panic or anxiety .. Now what I suffer during the day and with test and docs is so different and worse than this type of panic.. My point is trying to describe how I feel.. Yes, thank God we found the
    little one. They were playing in a different part of the school grounds..

    Love hearing from you, give me an update on you...
    hugs, gg
  10. greatgran

    greatgran Member

    I found the post, thanks. My norp.. (sp) is elevated not sure why. The endo. ordered a CT of my adrenal glands which was normal .. He did say never take an antidepressant with norph. such as effexor or clymbalta.. not that I can tolerate them.. I guess Iwill rely on good ole xanax and on these bad days just up them..I do hope you get to feeling better.


  11. kat0465

    kat0465 New Member

    i just got my puter back online, sorry i didnt write you back on facebook.
    you know i have the same problem you do with tests, i mean i really freak out.
    i used to get uncomfortable and a lil nervous, but now it's over the top! what helps me ( besides the xanax) is Taking someone with me.or i just loose it.

    don't go alone,i had an echo a lil over a month ago, and i made the Hubby take off work cause i was so scared. he thinks i dont have faith. but it's not that. when you feel so bad for so long, you think ok there must be Something their not finding, and their gonna find it Today!!

    Get that MRI done, and at least you can rule out MS, then your free to work on the sinus thing without worrying in the back of your mind, "i wonder if this is MS!" theres so many abx now days, theres gotta be one that wont make you sick. it's all trial and error isnt it :( Take care, and i love ya :)
  12. Fibrolady37

    Fibrolady37 New Member

    gg im so sorry you are really scared about having your MRI scan i really am.
    I felt exactly the same when i had my MRI scan to i felt very claustrophobic when i went into the tunnel.
    I would definetely have a sedative my friend i really think that will help you a lot.
    When are you having the MRI scan?
    Let me know how you get on please.
    DONT FORGET im always here for you whether like today you need to vent or scream & shout or if you just need a friend ok?
    Take care.
    May god bless you & yours.
  13. greatgran

    greatgran Member

    The thing about the mri is I can not lie flat.. I don't think I would mind the closed it part but the lying flat with no pillows, I just can't do it without getting sorta dizzy, vertigo and a panic feeling.

    I am going to practice lying on the bed with no pillows and try to get use to the feeling.. Oh, heck why am I so darn complicated..

    Now the doc wants me to have B12 injections which I know I will go and have them but then I read of the darn side effects .. This darn anxiety.. I think I need to get treated some how then
    try for test.. Oh , I hate myself for being such a chicken...

    Thanks and God Bless,
  14. lisadot

    lisadot New Member

    Sorry to read about your anxiety. What a not fun club to be in here. I had an MRI not long ago, and it was for my neck. I don't remember not being cushioned. In other words, I don't recall the table being rock hard like it is when you get x-rayed, and you may be able to have a wedge pillow to put your legs over and take pressure off your back. You might want to call the MRI center and ask them, because that *might* allay some of your fears.

    I get the chicken part. I feel like a little scared girl. I had no emotional support about scary things when I was little, and I can see the long-term impact it's had on me. It's hard to be your own mommy to yourself and say "It's going to be okay. You will be alright. I'll be here for you."

    I've had B-12 injections for "energy" at the doc's insistence. They didn't do a thing as far as I could tell. BUT if you need them because your bloodwork says so, please do it.

    Complicated. LOL! No kidding! I don't get it either, but I can sure relate.



    P.S. I'm signed up for Sascha's recommended eft course. I hope I don't get into trouble downloading it at work...
    [This Message was Edited on 11/11/2010]
  15. Janalynn

    Janalynn New Member

    I understand your fears, but please have the MRI done. Don't wait til you get your other stuff under control - you've been trying that for a long time and it's still going on.

    They do MRI's on people who have back surgeries, who are in terrible situations in the hospital all the time (who can't lie on their backs), they'll make you as comfortable as possible.

    Why not rule out MS or whatever they can find so that you can at least move on with that part? Get it over with - then it will be out of the way and you won't be worrying about it as being something you still have to do.

    At least your Dr.'s are recommending some things. You want them to dig into things. I'd be thrilled that someone was concerned and wanted to get to the bottom of things and try to help. Your other Docs had been saying, it's nothing for a while.

    Maybe you dont have CFS and it's a host of these other things going on?

    I hope you decide to investigate other avenues.

    Hugs -

  16. LittleBluestem

    LittleBluestem New Member

    I think the fearfulness is an ME/CFS thing.

    I have played piano since I was in grade school. I wasn’t great, but I was competent and had a very good memory, so recitals were never a problem for me or playing in front of other people in general. After I got ME/CFS, but had not idea what the problem was, a friend asked me to play a couple of piano pieces that she had heard me playing (from memory) at her small, informal, 2nd wedding. I agreed and didn’t give it a second thought. These were pieces that I had been playing from memory for several years. At the wedding, part-way through the first piece, I started getting nervous. Even as it was happening, I was thinking, “What on earth is going on here. This has never happened to me before and there is no reason for it now.” I managed to cut to the end of the piece and stop playing. I got myself together enough to make it through the second piece.

    Several years later I was trying to find some explanation for my worsening low energy and cognitive dysfunction, which I still had no idea was ME/CFS. I was to have an MRI. I was not anticipating any problem since the only medical tests that bother me are those that involve needles. Much to my surprise, it bothered me quite a bit. It was all I could do to make myself stay in there and lie still.

    A couple of years later, still pre-diagnosis, I was in a minor car crash. A week or so later, I remember remarking to a friend that I was still unsettled by the car crash and I didn’t understand why because it hadn’t been that bad.

    Now that I have been diagnosed, understand that I have an up-regulated CNS, and am on Xanax, I have less problems with it.

    I think part of my problem with my MRI was that I wasn’t expecting it to bother me. I would not be afraid to get another. I might take some rescue remedy along with the Xanax and wear my sleep mask and ear plugs, if they would let me.

    Have you asked if you can use pillows in the MRI? From what others have said, it sound like they might let you.

    Fortunately, my severe sinus infection days are past. I would not have wanted to drive 4 hours round trip when I was having them. Is there someone who could drive you to your MRI and provide moral support during the test?
  17. greatgran

    greatgran Member

    Thanks for your reply.. Yes, I called and ask if I could have a pillow or two and the answer is no.
    I have practiced lying on the bed flat but for now I can't do it. I may someday have to have a MRI but for now I am to anxious to even go out of town, even with someone.

    This is probably a wrong decision but I think I am through with doctors until I can comply with what they want. I have tried so many meds, been out of town for many test and now I am tired.

    I just want peace and no fear. When I get my emotions together if I ever do , then maybe.

    Now the doc wants to start me on B12 injections and after reading all the side effects I am scared to take them. Now that is what shape I am in mentally. I know what high doses of vitamins or any meds do to me and they aren't willing to work with me. I ask if we could start out on small doses and work up.. But the doc and nurses thinks I am a nut so I am going to get some B12 and take it myself..

    I do believe what you say about the CNS as the xanax helps me , if fact I am not sure where I would be without them. After 10 yrs I have upped my dose from 1/4 mg to 1/2 three times a day and on a bad day can take more..Oh the doc doesn't won't me to take xanax.. The doc that is understanding no longer accepts medicare but when I see a doc I will see him and pay out of the pocket.. In fact I am going to make an appointment and talk to him about all this..

    Oh, well I am going to try to stop complaining until I can comply with the doctors.

    Thanks so much..
  18. Mikie

    Mikie Moderator

    I'm so glad you found the little one. Our newspaper just had an article on chronic anxiety. It is quite common and more common in us with these illnesses. I have to take Klonopin at night to stop the overfiring of the neurons so I can sleep. Klonopin is a cousin of Xanax and it will help with anxiety/panic attacks too. If I have problems, I will quarter a tablet and put it under my tongue. My doc and the pharmacist both told me that was an excellent way to use it. Low dose and instant relief. I used to have to do that when I went shopping or out to eat because many of those places are too noisy or have harsh lighting. It can cause sensory overload.

    My chronic sinusitis may be related to Sjogren's Syndrome. It was my eye exam for dry eye which indicated it might be related. After some of our kind members steered me toward Sjogren's, I did a lot of research and boy do my symptoms fit. It can be very difficult to diagnose but there is no cure anyway. I just have to treat the symptoms. At least, I now know not to ignore anything because it could lead to a complication. Yikes! If it isn't one thing we are dealing with, it's ten things. Seems as though it never stops.

    I definitely understand the difference between situational panic and chronic anxiety. It's like our systems get stuck in the "fight or flight" mode and we can't get out of it. Even with relaxing and meditation, it sometimes takes meds. Klonopin works better the longer one takes it and I seldom have to use it for generalized anxiety. I'm adjusting to my BP meds and am not as anxious as I was. Maybe I'm just too exhausted to be anxious :)

    Love, Mikie
  19. mbofov

    mbofov Active Member

    Hi Greatgran - chronic stress can cause elevated cortisol levels and elevated epinephrine. These elevated levels can cause chronic anxiety and fear.

    My cortisol levels were elevated several years ago causing severe insomnia and just general edginess. I had an Adrenal Stress Index test (a saliva test) which showed my cortisol levels throughout the day. I started taking Seriphos (phosphorylated serine), a non-prescription supplement, and it helped almost immediately. I felt calmer but not drugged, and started sleeping better. I found it was best to take the Seriphos in the morning. After several months I was able to taper back the dose and eventually get off it.

    So I think there's a very good chance your cortisol levels are high and strongly suggest you have them checked. A CT scan of your adrenals will not show if your cortisol is high.

    Your doctor can order this test, or a naturopath, or you can go through Clymer Healing Research - they're in Pennsylvania, you can find them on the Internet. I went through Clymer when I first had the test done, and it was invaluable -it helped me so much. We did everything by phone, and e-mail and regular mail. I did not have to leave the house to get this testing done. One advantage of saliva testing over a blood test is that samples are taken 4 times a day so the practitioners can see what your cortisol levels are at differnet times of teh day, which is very important information.

    Especially with your high epinephrine, there's a really good chance your cortisol is high too. I hope you get it checked.

  20. greatgran

    greatgran Member

    Thanks for your understanding. Yes this darn anxiety is misery so going to take xanax and try to deal with it. I couldn't leave the house without a xanax . I am taking 3 or 4 a day and probably will until something else comes along.

    I posted on the Sjogren's post about this.. I too didn't realize all the problems it could cause.

    Please keep me updated on how you are doing..

    God Bless,

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