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At my wit's end

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Chronic Fatigue Syndrome
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Posted 12/15/2010 5:16 AM (GMT 0)
Hi guys. I'm new here. And I need your support.  I have no fight left in me.  I'm 27 years old, and have been sick since I was 16.  I have daily headaches, stomachaches, and fatigue (so tired all the time). I have seen lots of doctors and done all the tests.  The only tests that ever came back abnormal were my SED rate, which just shows that my body was fighting something, and for ehrlichiosis, which is like lymes disease. They gave me several rounds of antibiotics for that and called it good.

So now things have been getting worse. I'm on FMLA at work and can barely make it there most days.  I have no social life and really no life at all. I just went to a new neurologist today that had me describe my headaches to me, did a neurologic exam, and told me I was perfectly normal and that it's all psychological.  That I just don't deal with things well and have made my traumas into physical symptoms.  He found out that I also have endometriosis (actually diagnosed, seen in a surgery and removed) and that I have had my gallbladder out (in an attempt to help my stomach problems...not my idea, 2 surgeons recommended it) and said that it was a red flag that I have so many things wrong with me, because who has this many things wrong with them at age 27? So it must be all in my head.  Seriously????? He also told me that I was a prime candidate for narcotic abuse.  Which by the way I have several bottles of sitting in my apartment that I have not even touched.

I'm a normal girl that has had a happy life besides this sickness.  I am really sad because of the sickness. But who wouldn't be.  I don't know what kind of traumas I would even be suppressing, I really haven't had any.  The sickness came first.  Not the sadness.   

I've asked a few doctors about chronic fatigue syndrome. Each one says they don't believe in it or they don't deal with that sort of thing.  I can't find someone to talk to about it.  And from what I've read, I'm an easy diagnosis of the condition. I fit all the diagnostic criteria.

I'm so tired of doctors passing me off to the next guy or making me feel like I'm a wimp just trying to come up with excuses. Or that's it in my head.  I just can't do this anymore.  I'm sorry I know this is a long post but I just need to talk to someone.  Thank you for reading.

Posted 12/15/2010 9:58 AM (GMT 0)
So sorry to hear you're getting no help from Doctors, it's not psycological, it is a known physical illness, I believe it's recorded by the USA ...(not sure of name, something like..Dept.(or centre) for Disease control.

I'm from U.K...Had M.E. (CFS) a few years, now making good progress, thankfully. Could share more but not get access to internet often, and can't type much at a time. I normally find phone calls easier (or emails)

If you'd like to be in touch ..is it possible to P.M. me on here/ as don't like to give out email address in public...

Can send u my story if u like...How I came to get improvement, how I was at the begining etc. ?

All the best, hope u find more listening ears too!
Hope it's a better day 4 u 2day-even if just a bit better...there's always hope :-)
Posted 12/15/2010 5:53 PM (GMT 0)
       So know what your saying, I have had CFS since my teens am 55 now so I have been through what you are talking about. Dont give up. You need to try a Rheumatoligist I have seen so many doctors in my life and now at my age have so many other things going wrong to and they work against each other. Have been outa work for 2 years and am trying for disability. I know what you are saying also about the meds they push them on you thn treat you like a drug addict, so wrong of them. Please try to find a Rhuematoligist  but dont give up thats the worst thing you can do. Also I know about the sadness you feel when I get like that I make myself get mad enough that I just get up and start fighting it I know it sounds stupid and it doesnt always work but I'm a really stubborn person and refuse to let it control my life. I dont know you but feel for you hang in there please.
Posted 12/27/2010 3:18 PM (GMT 0)
Hey,

Sorry to hear about your ordeals with the medical profession!! How revolting, it makes me sick!!!!

I have ME/CFS. I just wanted to say that the diagnostic criteria are not very good - yes you may fit them but that doesn't mean that you have ME/CFS. THe main symptom is actually post-exertional malaise - worsening of symptoms following mental or physical exertion. If you have that then you almost certainly DO have ME/CFS.

It makes me so mad to hear doctors say it doesn't exist, it is a very real, neurological/immune and endocrinological condition! There are doctors out there who believe in it and listen to the medical literature which proves it is a physical condition. You need to find a doctor who is competent and knowledgable about it. Although when you do find one at the moment they will just be good for a diagnosis (which will bring you relief I'm sure), but not for treatment at the moment unfortunately.

If you want to chat any time just email me - you can find my email address on my profile here or via my blog's "contact" page.

Stay strong,
Kitty x
Posted 12/28/2010 8:51 PM (GMT 0)
Sorry you're having problems with the medical profession. It's not the first time I've heard that complaint! I believe you could have CFS. My 27 year old son has been dealing with CFS for 5 years following childhood leukemia. We've been to every doc you can imagine, cardiologists, neurologists, internists and some have really treated us poorly. If you can get your hands on a book called "Chronic Fatigue Syndrome" by Erica Verrillo and Lauren Gellman it is very good in helping you deal with your particular problems with this disease. We couldn't live without it, but you probably can find it in your public library. I really believe you have to be proactive about your CFS. Try to use herbs when possible, but if you need prescriptions for sleep or depression, then just do it! My son thinks Advil is good for his fibro pain. Good luck.
Posted 12/30/2010 7:01 AM (GMT 0)
How are things at th moment?
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