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Illness not diagnosed

Posted , 9 users are following.

painfulife
painfulife

Hi everyone,

This place is my last hope. I started feeling unwell 2 years and 2 months ago. So I visited my PCP and he just asked me to exercise and lose weight. So thats what I did. I changed my diet, kept hydrated, took vitamins and exercised. NOTHING help instead things got worse. The past year I have been in pain, fatigue and sleepy. It is getting worse by the day. Lately, all I do is sleep.

I am 24 and a college student. This mysterious illness has taken over my life to the point I would rather die. I can bear the pain but cannot take the fatigue since I cant concentrate or get anything done.

My symptons:

My entire body is achey. Extreme pain in upper back/neck area. 

Fingers and hands week very weak like I cant even hold anything.

Morning stiffness in hands and fingers.

Headaches. (once a day. Achey and sometimes stabbing. It lasts a few hours)

dry and red eyes (recently started)

I dont have the energy to do anything.

Sleepy all day.

Exercise makes it worse.

All my blood tests came normal except the first time my ana came positive then the second time negative.

I am in therapy for depression and anxiety. (I have depressionbecause of this fatigue)

Please let me know if anyone has been/is going through something like this. Any advice will be helpful.

0 likes, 16 replies

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  • jacquibutter
    jacquibutter painfulife

    Posted

    Reading your syptoms reminds me of me-please look into Lyme disease and get try some antibiotics-amoxcicillin -trinothorpe (spelt wrong) and metrodozal. Give them a try-also go onto EuroLyme yahoo group to find info.  So sorry-you are so young-you must push for answers -insist that your GP looks into Lyme disease-dont let him tell you it does not exist in UK.  Afraid have had the illness 28yrs because of GP/specialists ignorance re Lyme disease-be carefulwith the antideppresants-if not helpingI would  wean off them-take care-contact if you need any help, Jacqui
    • painfulife
      painfulife jacquibutter

      Posted

      Hi,

      Thank you so much for replying. I really do think I have lupus or lyme disease. Thanks for the support Ill push my GP for more tests.

       

    • lizziewizzie
      lizziewizzie jacquibutter

      Posted

      oooh not anti-biotics in the first instance. They CAUSE  so many problems. But if dysbiosis can't be treated by any other means then on occasion neomycin or antibiotics can eradicate pathogenic bacteria from the gut....but its good bacteria we need in the gut....and there would need to be a strategy in place to replenish those before starting any kind of anti-biots.

      so sorry things are bad for you painfullife...lets hope you can change your name soon!!

  • jacquibutter
    jacquibutter painfulife

    Posted

    Look up Lyme disease-try EuroLyme support group-
    • lizziewizzie
      lizziewizzie jacquibutter

      Posted

      yes pfl,

      check out lyme....get a full panel of all these possible differential tests. you had a raised ana but you may be getting it down through your own means...especially resting. also reading listening to on-line webinars are all very helpful. maybe chat to the fibro folk...tho often they lack motivation to change so try to keep your pecker up and work your way...slowly...through this. i'm addressing thyroiditis so mutual hand holding very welcome...and hello to you too jacqui.

  • lizziewizzie
    lizziewizzie painfulife

    Posted

    where are you?

    can you find a 'functional medecine' practioner? Ask for a thyroid test. Your TSH should be 2 or below...trad doctors accept 4.5 - 5.5 as normal but that is too high. You might be diagnosed with fibromyalgia.

    a functional nutritionist or even a herbalist could help and would not stick a psychiatrict diagnosis on you....which is insulting ...given the truth is they don't know, can't work it out and haven't been trained in nutrition. !!!!

    I really hope this helps to encourage you. Thinking of you and wishing you well

    love liz

  • lizziewizzie
    lizziewizzie painfulife

    Posted

    for the pysche symptoms....you 're not taking chlopromazine are you? it can CAUSE autoimmunity...as do most medical drugs (I'm a nurse) so do try to go the natural route and just use your GP for testing. take charge of the situation. easier said than done i know based on how you feel but if the medics get hold of you...well you could be in real trouble.

     

    suggesting you exercise was negligent....with any inflammation at all you should rest, re-coup, get support. a herbalist, naturopath even a nutritionist could better help than your GP they are not trained in nutrition at all. they have no idea even about NUTRITION as my own GP and I joke...and as he (now) fully admits...not even about minerals and vitamins. but they can order useful tests under the NHS. so do make use of the service.

    ps

    look up drug induced 'lupus erythrematosis'

    really hope this helps....and is a nudge in the right direction. liz x

    you can recover from this. think nutrient density. try a paleo diet. find out about appropriate vits and mins from a suitable 'functional' medical practioner if you can. and stay on here xxx

  • mandy95
    mandy95 painfulife

    Posted

    You could have Sjorgrens, I have just been diagnosed with this and my eyes are extremely Dry and Muscles ache and the fatigue is crazy.  Good luck.
  • jadre14748
    jadre14748 painfulife

    Posted

    Hi your story sounds so similar to mine Im going through the same ,,I'd reached breaking point and convinced my self I had Lyme's disease ,,I went back to my doctor in tears I've tried every painkiller nothing works I suffer headaches everyday had every blood test u can think of all came bk normal ,,,my doctor said it sounds like fybromalgia and told me to look on the internet about it .. Look it up hopefully you can get to bottom of this I couldn't believe that there was a answer to what I had been expericing .....
  • lisalisa67
    lisalisa67 painfulife

    Posted

    Blood tests are only useful if a doc knows what blood tests to take. Did you get tests for lyme? B12  levels? Sounds like lagging epstein barr. Maybe see a inefctious disease doctor for another opinion.
  • jacquibutter
    jacquibutter painfulife

    Posted

    You state 'get referred to infectious disease specialist' I did-2 of them-they hadnt a clue about Lyme disease. This is in UK-is it differant in US?
  • alice77221
    alice77221 painfulife

    Posted

    Hi. Can't say I know what your problem is but I had serious health problems years ago and started using a juicer (plenty of greens) and fruit. This really helped. I now use a nutribullet which means you get all the fibre as well as the juice.
  • jan09788
    jan09788 painfulife

    Posted

    Have you had thyroid tests? and for autoimmune? diabetes tests? if your thyroid is out of wack it will really affect your energy levels i.e a lot of fatigue, weight gain if hypothyroid.
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