Been in hospital 7 weeks..

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Jan 16, 2012.

  1. Wolverine

    Wolverine Member

    Hi all, thought I posted about this already

    I've been in hospital for the last 7 weeks. I've had cfs/fm/mcs for 11 years that started with severe digestive problems in late 2000. My whole story is at if interested.

    Basically have had adrenal insufficiency since late 2008 which has
    required hydrocortisone ever since. 2011 was hard as I had the flu 3
    times which all lasted months each at a time requiring higher doses of HC each time.

    During the last 6 months I felt my gut worsening with the reflux etc + eventually late November, completely crashed, with a great worsening of digestive symptoms, tingling in the brain & body / muscles, extreme weakness, severe worsening of systemic muscle pain (fm), etc. Also all my allergies, intolerances, asthma and chemical sensitivities got
    drastically worse within a few days. I feel like my detox system basically just bottomed out completely, and now I'm like a bubble boy reacting to everything. I just feel systemically ill & toxic.

    I can barely think for the whole day & night, my muscles are so weak
    they barely work for sometimes 4-6 hours at a time, an almost paralysis
    type thing. Nerves tingle with pain in the brain & systemically. Weird skin rashes
    & breakouts. Constant viruses / bugs. Lost 8-9kg (20lb) in the first 2 weeks or so and am rather underweight. I've managed to keep my weight stable by forcing down food & just dealing with the horrible sick toxic feelings that eating gives for around 5-6hrs straight.

    Have had to restrict foods down to carbs only almost, as protein
    especially meats/eggs flare up the brain/nerve/muscle pain severely.
    Most proteins do it though to a degree. Living on rice and veg, veg
    juice, rice cakes. Not ideal for long. Even after those meals my brain
    shuts off into a weird almost coma like state for a couple of hours. I just feel extremely toxic.

    Interestingly, if I *only* drink water or vege juice for 8-12hrs straight, most of
    the symptoms die down greatly, and I have more strength & control of my
    body, much less pain and much better mental clarity. However not
    sustainable, and very concerned with further weight loss.

    They have not treated me well. Some drs have yelled at me even as if this is all my fault somehow, because most tests are relatively normal, except oi, heart rate of 150bpm on standing, but not always. Psychologists are saying its at least partially psychological / p-somatic, which is infuriating, being so weak & in so much pain.

    It feels like this is the end of my life, & I desperately don't want it to be! Being sent home Thursday with no answers & not much help. Very scary, this is the worst I've ever been. Feel rather lost. :/


    33, male,
  2. deepak

    deepak Member

    Hello from India.

    I am afraid I cant offer much advice medically as I am new to this, but have you heard of or tried Transfer Factors ? Some people seem to be getting good results from them.

    Just prayed for you just now. I am sure you will be helped.

    Warm hugs and lots of love,

  3. mbofov

    mbofov Active Member

    As you probably know, most if not all of your symptoms can come from the hydrocortisone. It can be very rough on the body. Go to Pzifer's website and read about it.

    Hydrocortisone can cause your high blood pressure, screwed up digsetion, weakness, constant infections (it weakens the immune system) etc.

    I strongly urge you to find a naturopath or integrative medicine doctor or chiropractor who does muscle testing. The adrenals can be treated without hydrocortisone. When my adrenals were very weak, my chiro gave me an adrenal glandular supplement from Standard Process called Drenatrophin PMG (they make another called Drenamin too). Anyways, it had no bad side effects and really helped a lot to strengthen my adrenals. I also took Seriphos (phosphorylated serine) to lower high cortisol. It is important to take Seriphos in the morning.

    My chiropractor explained to me that cortef would only push my adrenals to work harder, thus exhausting them further, but that teh adrenal glandular would actually allow them to rest, and thus heal.

    I hope you get some help, but I think you really need to look further than the doctors you've been using.

    Best wishes,

  4. mbofov

    mbofov Active Member

    Chris - the hydrocortisone can also cause low potassium, whic can cause muscle weakness, high BP and other symptoms, so your potassium levels should be checked if they haven't already.

  5. Wolverine

    Wolverine Member

    Deepak.. thanks I am actually about to try transfer factor hoping it will help the immune system.

    Mary: yeah I realise this about cortisone. I hate the stuff and have no doubt it it a major factor in the current health breakdown. However if I stop it I'm dead within 24hrs so that's very unfortunately not an option. I have however switched to isocort which is natural plant derived cortisol. It definitely doesn't have the chemical reactions of the HC tablets. I can't take glandulars like drenatrophin, they always cause a strange irritability & other brain reactions. Not that my brain could get much worse. I would give anything to get off cortisone altogether but I'm insufficient & been on it for over 3 years too, so its very unlikely.
    Cortef shuts the glands down. It did that to mine in the first week on it. I don't have high bp at all, in fact its mostly low now since I lowered the dose. I was on high doses last year most of the year close to 50mg was the average, much too high. I'm down to about 25 now which is lowest I've ever been. I just hope the damage isn't irreversible.

    I am trying some things with alt practitioners hoping they help. I may even try a juice fast as its the only nutrition that doesn't flare everything up. Not sure how is tolerate it but am fair desparate.

    Thanks again all. C.

  6. mbofov

    mbofov Active Member

    I misunderstood - I was thinking your 150 bpm referred to blood pressure.

    Anyways, I'm really sorry things are so rough for you and I hope the isocort helps you. Do get your potassium levels checked. Mine were low when I didn't know it and it caused extreme fatigue and lethargy.

    You may know this already, but pantothenic acid is crucial for adrenal health so it might help you some, and when my adrenals were really stressed, I felt the difference when I added extra pantothenic acid to my B complex.

    I hope the alt practitioners help too!

    Best wishes,

  7. Picklington

    Picklington New Member

    Sorry to hear that - sounds like a nightmare.

    Have you had those extensive allergy tests you can get done in health shops? They test a strand of hair. Might help you understand which foods to avoid and which are OK.

    Not a fan of your psychologists telling you it's partially psychological/psychosomatic. That sounds like a cop-out to me.

    Hope you feel better soon.
  8. KKMK

    KKMK New Member

    The article about the Hydrocortisone may be true. I refuse to click on anything about Pfizer - therefore I can't read it -but:
    I was working for Pfizer when I was diagnosed with Lyme Disease. My Dr took me out of work for the antibiotic therapies. Pfizer sent me to THEIR specialist who literally looked in my mouth eyes ears nose, tested the reflexes in my knees and feet, made me stand up sqat down and stand up again then pressed on my back and told me that I do not have Lyme Disease. I asked this specialist "what about the blood tests" - he told me that "they must have been wrong" and added "you will be going back to work tonight". Later I developed Fibromyalgia - you know, the disease Pfizer is putting out meds for and researching - I was told that I couldn't take medical leave for Fibromyalgia (I was working 7 days in a row with 2 days off and then working 7 more) fighting Lyme and Fibromyalgia. I was exhausted to my core and literally felt like I was dying and this "caring" company was doing everything they could to hinder me. Two years later I lost my job. Pfizer is dirty and all about the bottom line. I'm just saying please be careful and take your info from pharmaceutical companies with a grain of salt. If theres a dollar to made they don't care who has to suffer for them to make that dollar.
  9. 3gs

    3gs New Member

    So sorry to hear what your going thru. The info about eating is something that I have been noticing. Feel terrible when I eat(no appetite either). you described it very well.

    Am at a loss for words for how you have been treated. wish there was something I could do.

    try to stay strong
  10. slowdreamer

    slowdreamer New Member

    Hi Wolverine,
    Sorry to hear my fellow in OZ has so much grief.
    In past conversations I remember we had some overlaps in terms of symptoms etc and I am wondering if you can take say 1/4 teaspn of this powder in a little water..I find it very benign and soothing to the whole gut.

    Yr diet is familiar to me..I have found MUltizyme Digestive Enzymes with Ox bile have improved my digestion maybe 60%
    Thinking of you Wolverine and just hope you can find a sliver of joy somewhere..
    Felt like forwarding yr letter to Dr Norman Swan..have you heard him on the ABC..If you haven't don't bother.

    Best wishes
  11. lgp

    lgp Well-Known Member

    I am so sorry for all your pain and what you are going through.

    Some years ago, when I was suffering from digestive and 'gut' issues, I stumbled across a book in the vitamin store by Jordan S. Rubin entitled 'Patient Heal Thyself'. The author suffered terribly as a young man from unidentified gut issues, and was misdiagnosed and mistreated by the medical community. He found his own way back to good health thru nutrition and supplements. He understands what pateints such as yourself are going through, and offers solutions that actually work. I passed this book along to a co-worker, who claimed it saved her life!!

    I checked for you and this book is still available on Amazon, with many positive reviews. I hope it can help you.

    Take care. I will pray for you on your journey back to good health.