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Fibro, CEBV, Chronic Fatigue, Immune Deficiency

Experience with?

A little over 2 years ago, I became very sick for several months- my symptoms were flu like, but without a fever, I even took a couple of pregnancy tests (I had a tubal 4 years ago)... Last year I was diagnosed with fibromyalgia, treated with horrid meds than made things worse, and sent on my way.

Months later, the PA made the correlation between all of the symptoms and my chronic sore throat, after even *more* blood work, the final diagnoses was CEBV (which causes fibro symptoms, chronic fatigue, and immune dificiency- among other things).

Any experience?

I *refuse* to medicate and live in a fog. It can't be cured, it is simply something I have to live with for the remainder of my life... and it is debilitating.

What, if anything, has helped you cope?

Answer Question
 
ObbyDobbie

Asked by ObbyDobbie at 9:42 AM on Jun. 17, 2011 in Health

Level 34 (70,074 Credits)
Answers (8)
  • You can take echinacea on a daily basis to keep your immune system up a bit to help with getting sick more often. It's not going to prevent it, but will boost it a bit. There's no side effects or anything, so you won't have to walk around in a haze.
    attap5

    Answer by attap5 at 9:47 AM on Jun. 17, 2011

  • attap5- I should clarify that I grew up with homeopathy as standard care, rather than western medicine. If it was something that *truly* needed intervention, we saw a medical provider, otherwise, it was a homeopathic approach.
    I'm aware of what I can do (and am doing) to boost my immune system... The frustration is, that much like an hiv patient, if I come into contact with anyone who is sick, regardless of what precautions I've taken, I get it too. That isn't the part that is so disheartening though.

    I went from the top of my game, the best physical health I had seen since having children, almost back to my usual, pre baby self- then got knocked on my ass. No energy, constant pain, and no answers.
    ObbyDobbie

    Comment by ObbyDobbie (original poster) at 9:52 AM on Jun. 17, 2011

  • I have it to, since I was 14. I don't think you will like what I have found. I also found that medicines just made things worse. Most of the time I fake it till I make it when it comes to energy level. For pain I get some comfort with heat. I find that if I am chilly I feel worse. I have heard the opposite for others. I exercise as much as I can so I will be strong during the down times. This is a fustrating chronic illness, that I have just had to learn to live with. My family knows to help out and help me keep warm (keept the house at about 73 degrees, reminding me to bring a sweater, etc), without feeling sorry for me or asking me constantly if I am ok. For the "fog" my kids know to put everything on the calendar. They know if I didn't write something down they can consider it forgotten. I am still the Mom and I take care of most everything in the house. I just do it a lil differently then other moms.
    ochsamom

    Answer by ochsamom at 10:40 AM on Jun. 17, 2011

  • ochsamom- I've found that basking in the sun is *the* most effective pain management.

    I'm battling with reality right now. The *only* answers that the docs have is to medicate me- but to what end? I had a reaction to cymbalta that almost killed me. Come to find out, it is not safe to take it if you're not depressed--- so, even though it is prescribed for nerve pain, it shouldn't be prescribed to patients who do not suffer depression.
    The fog- omg, if you could just say that to my SO. It is like my memory has gone out the window. I have a hard time recalling simple, seemingly unimportant things. It's driving me insane.

    The last thing in the world I want or need is pity, but damn it people- accusing me of making up an illness? Accusing me of faking? Accusing me of just wanting attention? I want you to leave me the fuck alone!! I just want a little help with some of the most basic things... *rant over*
    ObbyDobbie

    Comment by ObbyDobbie (original poster) at 11:36 AM on Jun. 17, 2011

  • "ochsamom- I've found that basking in the sun is *the* most effective pain management."
    1. I am not talking about sunbathing.
    2. Warm baths, heating pads and hot compresses are effective pain management/relief
    3. I have found no real effective pain management...I mostly have to deal with it. At this point I am only looking for moments of relief.

    Meds only make me feel worse. It is pathetic that some still deny this illness! I mostly keep this diagnosis to myself for the reasons you mentioned. The only people I lean on is my family.

    ochsamom

    Answer by ochsamom at 2:51 PM on Jun. 17, 2011

  • I have a couple other issues that the vitamin D help with- the added benefit is that same, deeply penetrating warmth as a heating pad. 30 or so minutes every day makes a huge difference for me.

    I did notice this year, that cold weather made it worse. But, the weather here is always warm (we live in coastal SC), save for the few days a year it gets to freezing.

    I have a high threshold for pain, but the constant pain is so much different than intermittent or unexpected pain. It wears you down. I eat enough ibuprofen to kill a horse each day... eventually that is going to bite me in the ass (stomach) too.
    ObbyDobbie

    Comment by ObbyDobbie (original poster) at 5:26 PM on Jun. 17, 2011

  • You're absolutely right- people deny that there is anything actually wrong. They truly believe that this is some ploy for attention... some days, I almost wish the pain on them, so they would fall off of their high horse.
    ObbyDobbie

    Comment by ObbyDobbie (original poster) at 5:27 PM on Jun. 17, 2011

  • Not familiar with the CEBV diagnosis. But here's a website you might want to check out http://www.endfatigue.com/  also might try Enzymatic Therapy for supplements to help you out. I hear ribose is good for more energy, better sleep, more mental alertness, and less pain.


     

    2autisticsmom

    Answer by 2autisticsmom at 8:48 PM on Jun. 17, 2011

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