How Many Here Have CFIDS, with Anxiety/Depression?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Nov 21, 2008.

  1. greatgran

    greatgran Member

    Since the board has changed seems I am losing contact with everyone except for a few.

    So just wondering how many that are still here and the new ones have CFIDS . Would like to know about your symptoms and meds. What you are able to do etc.

  2. wendysj

    wendysj New Member


    I've enjoyed your posts... I have been here for about 2 months. I've had CFS for 4 years and was recently diagnosed with FM. I also have T1 Diabetes.

    Symptoms (CFS) - Severe fatigue (comes and goes), slight fatigue (most times), I had a fever for a year while I was trying to figure out what was wrong - Now I get the low grade fever when the severe fatigue comes on, chills, swollen glands - had two removed because my doc thought it was cancer (it wasn't), muscles ache so so bad, my head feels too heavy for my neck to hold up sometimes, foggy vision when the fatigue sets in... I'm sure there's some I forgot.

    Lexapro 10 mg a day. (Life saver - anxiety issues.)
    Xazal 5gm (sinus issues)
    Flexeril 10 mg every night (sleep)
    Ambian 5 mg every night (sleep)

    Flaxseed Oil
    B12 vit
    Calcuim +vit D


  3. greatgran

    greatgran Member

    For your reply, I am so glad the Lexapro helped with your anxiety as that seems to be one of my worst symptoms. Have tired several antidepressants but they seem to make the anxiety worse.

    The strange part about my CFIDS is I never run a fever mine is always sub-normal so I question my Dx all the time. I haven't had any good doctors, none that really understands this dd. My Dx came from a retired internest/rheumy that I ran into and she contacted the PA I see so now I am left with the Dx. I have seen two rheumys and they have been helpless. Told me to take tylenol and exercise.

    I am mainly housebound only go out when necessary and can't make plans cause I never know from one day to the next how I will be. I am so glad to see you are still able to work.

    My symptoms are weird head feelings, that I can't explain, like the inside of my head spins or is tired., Anxiety/ depression, agroaphobia ,
    body aches especially my hips, thighs to my knees , like bone aches,
    blurry vision, sleep issues, flu like symptoms and sinus problems ringing in ears, dizzy feelings, bad vertigo attacks. I know there are many others but my mind is blank. Also I can feel fine one minuter and the next I feel like I am dying. Oh, and no energy and its getting worse. Exercise of any type makes me worse. I feel so hopeless at times. What do I do with me...

    My meds are: xanax .05 three times a day
    bufferin for pain
    vitamin C (extra to help with sinus)

    I am suppose to be on Vit. D 3 but haven't started it yet not sure what I am waiting on.

    Please stay in touch,
  4. wendysj

    wendysj New Member


    My sister had to start off with a very small does of Lexapro her second time trying it. (It is anti-depressant and anti-anxiety.) She's very tiny and they started her at 20 mgs a day. She was having panic attacks because of that. She started it again after my success at 5 mgs a day. She worked that up to 10 mgs a day over a week's time. She really likes it now.

    My sister has the same kind of symtoms with her anxiety attacks. (Dizzy, head spins, head feels numb, ect.) Maybe those symptoms are just the anxiety. Your other symptoms sound more like me; flu-like symptons, bone aches, sleep issues, blurry vision, sleep issues.

    I'm sorry I'm not much help. I hope you start feeling better soon.

  5. greatgran

    greatgran Member

    So glad it has helped you and your sister. My starting dose was 5 mg. a day, so took it the first night and for one hour I felt my heart was going to beat out of my chest, then the next night the bees went off in my head.

    Maybe I didn't give it a chance , If I remember correctly the next day my head did seem clearer after the bees stopped. I still have some so may give it another shot . Since you said it helped you and your sis with anxiety . Are you or your sister afraid to go places? just wondering if it would help with agoraphobia.

    You have been a great help, thanks bunches.

    God Bless,
  6. Rafiki

    Rafiki New Member

    Just me, Rafiki.

    You said that you question your diagnosis because you never run a fever. It is much more usual for people with ME (aka CFS/CFIDS) to have a temp. which is below normal than to run a fever.

    I'm really sorry that this dreadful anxiety still plagues you. I had Panic Disorder for many years before the ME, as you already know, but coming down with ME really put it into overdrive and I became agoraphobic for a time. It was pretty awful. I'm really sorry that you are experiencing that.

    Please remember that you are still taking a very small dose of Xanax. People with PD are prescribed much larger doses. My original script was for 2mg 3x per day or 6 mg a day.

    The thinking was that I would be totally unable to panic and would find it easy to drop the attendant phobias. What happened was 3 naps per day :~) But, when I took 1 mg 3x per day I got the desired results right away. I had to go and do everything before I understood that I didn't have anything to be afraid of any more but I did and I wasn't and it was all good.

    Everything got better then and I found out I was an intrepid adventuress and galavanted around the world! That was 20 odd years ago and it's been totally under control all this time.

    I now take the same amount you take but I doubt it would have worked at this dose initially. I don't even know if I have Panic Disorder any more as I never really think about it. I take my xanax (1 - 2 mg) in the evening or at bedtime in order to sleep.

    The people I know who's panic disorder was completely resolved with Xanax all took more than 3 mg. (sometimes a lot more) each day for several months and then, on their own, reduced to a lower maintenance dose. The people I know who had incomplete resolution of symptoms never took the higher dose or crept up slowly as tolerance built. The latter may have ended up on 4 mg but by the time they got up to that dose it was no longer effective. At 1.5 mg. your tolerance is still very low. 3 mg per day would be a differnce you would really feel.

    Can you do some research on PD and talk to your doctor about a trial of a good solid dose appropriate for PD? There are Panic and Anxiety Disorder support groups online where you could probably get a lot of excellent info. I really think that the Panic Disorder is a huge issue for you now and you would feel so much better if you got that one thing under control.

    All the best, GG,

    ETA GG, I think you are probably on .5 mg x 3, not .05.

    [This Message was Edited on 11/21/2008]
  7. greatgran

    greatgran Member

    Thank you so much, you always make me feel so much better. I don't know why I have this thing about taking a higher dose of xanax. I feel if I up my dose then I will have to continue to do so.

    Before this darn disease I was on this same amount then came off without any problems, was on the med for 2 years then didn't need it anymore till the CFIDS and did my anxiety go thru the roof. Its so different and so much worse.

    I am having to see a new doctor and he doesn't like xanax and wants me to go on antidepressants and off the xanax, gosh where do these doctors come from. I have told him I can't take the darn AD's and xanax works but I feel I need to up my dose , well that did it, He said you see what I mean. I told him yes but at my age if it helps why not.
    Why do doctors dislike xanax and give it such a bad rep. but can push all the other crap. He told me xanax was just a band aide didn't fix a thing.

    So increasing your dose helped you to overcome anxiety, was this after CFIDS if so how long where you on the higher dose before being able to lower it.

    I get so angry with myself for trying to take a small dose that anymore
    just takes the edge off.

    Did you try AD's , I think I remember you did and was unable to tolerate them.

    So glad you are still here and thanks for all your info and encouragement.

    Heck, now that I total my dose I am not even taking 2 mgs a day.

    I can take them , they help, no side effects what in the heck is wrong with me.

    God Bless,

  8. greatgran

    greatgran Member

    Me again, I don't seem to be bothered with panic attacks just the horrible anxiety. Like something bad is going to happen, not going places cause I am afraid , don't have a clue what I am afraid of, unless its having a cfids crash. The what if thinking, doom and gloom of fear.
    Fear of dying or something happening to a member of my family etc.

    Now does this sound like anxiety or depression. Its more a fear and dread.

    I am getting so confussed I am not sure if its anxiety or depression or this darn cfids.

  9. Rafiki

    Rafiki New Member

    Sounds to me like the amount of Xanax you take blocks actual panic attacks but does not stop the generalized anxiety.

    You know, GG, what happened with Xanax and the ADs is a bit of a scandal. It is known that ADs are very difficult to discontinue and everyone accepts that. You don't hear people talking about AD addiction but people are warned to taper off very slowly because they will probably go through intense withdrawal if they don't. Many ADs come with a warning that they may cause suicidal ideation - especially in teens and those over 65. I became suicidal on them in my 40s and I'd never even been depressed before taking them.

    SSRIs and later generations of AD are very profitable. They are the most profitable class of drugs big pharma makes. Big pharma is the source of all drug information for most doctors. Doctors are busy, often harried, and have a tendency to absorb a lot of info remarkably uncritically. The pharma rep comes by and tells them Xanax is a problematic drug but ADs are a panacea and that's that.

    Xanax is also a very effective drug for anxiety which makes it very popular with people who have chronic anxiety disorders. This patient population can't always come off the med because the underlying condition still exists. If you stopped a diabetic's insulin, you wouldn't expect them to be fine. I do not see any evidence anywhere that SSRI, and the like, are any less bandaid like.

    Xanax is also popular with highly anxious people with a tendency to addiction. Addicts tend to know which drugs work; they are very savvy consumers of drugs. So, yes, Xanax is popular with drug abusers, too. It is probably one of the least dangerous drugs that is misused. Addicts also tend to like sugar and caffein neither of which are being demonized because there is no profit motive working against them. There is a huge profit motive behind the xanax hysteria.

    I have taken it for over 20 years. I've never taken the amount I was first prescribed. I do develop a tolerance - one does with all benzo's. One simply has to understand that and periodically reduce the dose to reduce tolerance. I use benadryl to sleep when I want to reduce my Xanax tolerance and it's no biggie. But, I am very conscious of the need to do this and very responsible about my xanax use.

    You know, GG, it's no biggie in large measure because being on an effective amount of xanax helped me to learn how to calm myself and be less afraid of fear. Now I meditate and that is hugely helpful, too. But, I don't know if I would have been able to meditate in the flat out Panic Disordered state I was in before Xanax.

    I think that anxiety and PD are aspects of ME. I didn't before coming here but way too many of us suffer from anxiety and panic as compared to the general population. Many have also reported having a global improvement of ME symptoms with xanax. My starting xanax coincided with the beginning of a long period of semi-remission. Did it bring about my improved health? I don't know but it might have.

    I'm so sorry that you are being made to feel guilty about this very helpful medication. Your doctor is just swallowing what he's told. It's a load (sorry!) but it's a profitable load.

    You are a mature, intelligent, experienced woman who happens to be suffering from extreme anxiety. Your doctor should treat you with respect. Xanax is not illegal. You have no history of drug abuse. You have a right to be treated with a safe and effective medication.

    Let's get some info to arm you so that you can have a more productive conversation with your doc. Please remember who you are! Anxiety doesn't make you any less you! You deserve respect!

    ~Now we breathe~

    [This Message was Edited on 11/21/2008]
  10. greatgran

    greatgran Member

    Wow, all I can say is THANK YOU... You have been such a help. Sure wish I could say it like you just did.

    God Bless,
  11. 2sic2mooov

    2sic2mooov New Member

    You are so active on the board and really get me thinking without it GETTING to me. I guess the site is to help us know we are not alone and sharing a problem or illness is easier then.

    I believe have been affected for 25 plus years. Dx way back then for depression and treated with countless antidepressants. Lots of panic and anxiety then too, and heart palps. but also had the "classic" CFIDS symptoms that are much worse now (but back then they just lumped it into mental illness. I felt just like i do now, only my symptoms are more pronounced, even though some come and go. The exhaustion, insomnia, and brain fog are the main ones that are ever present.
    Last 8 years have had the hallmark symptoms listed above, plus added lots more along the way such as headache, body aches, joint pain and swellling, rashes, new allergies, jaw pain, ringing in ears, arthritic swelling and stiffness in hands, wrists. Swelling around eyes. Recent strange gurgling in left ear, irritability---may be from recent blood sugar fluctuations although not a diabetic, alcohol intolerance, intolerance to strong smells and vapors like gasoline, nail polish and cleaning supplies, blurred vision sometimes, deep pain in muscles, intolerance to cold and heat, thryroid changes and past growth, "female" pain and changes. Digestive problems last 8 months due to inflammation in esophogus and spasms, also have h-pylori infection, jaw pain, numbness and pins and needles---especially left side, ringing in ears that is ultra annoying and also hearing loss, heart palpitations and upper stomach and chest pains...zingers in head that leave my brain empty for a couple minutes at a time, breast discharge and cysts in one side, lately more anxiety and panic. No real depression although the illness makes me angrry and moody. insomnia, exhasution, and brain lapse is the worst of these

    Long ago took prozac and xanax for the "depression", but tried every kind known to man for a while there

    Now I (only) take:
    Hydrocodone 325 for pain as needed
    Restoril for insomnia....although I have tried others(still no relief)
    Lorazepam for anxiety.....1 mg but I usually take 1/2 tab when panic sets in
    Vitamin D
    Was taking multi vitamin but realized it has aspartame in so stopped that.

    last year went to alternative clinic and was put on tough regimen of diet and took 64 doses of supplements, herbs, teas, etc a day adn made me very sick. Had lots of stomack problems from trying to digest the pills and capsules. Had to stop, even though i do believe in it and would like to try someagain. i am lost in what to do to start slow again.
    I feel like I dont have a clue what i am doingto help myself, as so many others are trying other tx. my docs dont help at all and are totally pharmy guys.
    This is why i so appreciate your posts and the others that have been "together" on this site for so long. i learn a lot....and thank you so much.


  12. Engel

    Engel New Member

    I have both.
  13. Sun_Rae

    Sun_Rae New Member

    Pre-CFS, no prob with anxiety. Now, I can be sent into a tail-spin just thinking about things that i normally panic with. I actually have the same bottle of low dose Xanax that I was given 3 years ago by an ignorant MD who wouldn't dX me with my thyroid disease. I told him I was having panic attacks and didn't know why and although my TSH was low and my thyroid huge, he still just gave me Xanax. I now only need one when I have to: fly, see the dentist, go to the doctor, or go anywhere where I'm not in control. So, I usually take a half-Xanax and 1 Atenolol to control the racing heart and that is a HUGE help. I tried hypnosis, EFT and meditation, but it only works UNTIL I get to wear the I'm going and then I go into flight or fight and PANIC. I literally walked off a plane before take-off. I was so embarressed as I used to be a world traveler. I had no idea why that happened.

    So now, I'm not embarressed about taking anything. If you need it, take it and find a MD who WILL give you what works for you. FIRE that guy who just wanted to put you on AD's.

    Good luck! :)

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