Systemic Pain / immunity worse than ever + 4 month virus

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, May 22, 2011.

  1. Wolverine

    Wolverine Member

    Hi all. Sorry haven't been posting here in a while, have meant to be back but as usual dealing with so much all the time!

    Going through a very hard time at the moment. As some know been dealing with major adrenal issues since late 2008. That has been the biggest challenge of my 10+ years of CFS/FM so far. 2.5 years on hydrocortisone and I still havent found a stable dose. I'm better than I was in the begginning thats for sure (hospital every week with crashing blood pressure).

    However, cortisone in general has worsened nearly every aspect of my CFS. Brain/cognitive function almost came to a halt when I started it, and that hasn't changed. Fatigue much worse, immune system, light and noise sensitivity much worse, etc.

    Before the adrenal crash I used to at least go out about once a day by myself in the car, just to shops & post office etc. I'd be ok, get home be exhausted, just lay down still for 2+hrs then gradually come around. Now I have been mostly housebound pretty much for the whole time since being on HC. I can only do anything really late at night when no one's up and nothing's open. I can cook though and do minor housework between things.

    I think it's likely due to having very poor drug tolerance / processing (poor liver detox/low gultathione etc) in general as to why it doesn't work so well. I have to have it to live however. I dose about 8 times a day and am STILL very up and down between doses. Im trying to work out a way to improve this aspect as if I could get that stable I think many aspects may improve.

    Getting to this year and the point. I got a major virus (flu like) late January. This required doubling the HC dose almost, up to 70mg (which is very high if you know about HC doses). This happens with anyone with adrenal insufficiency / addisons if they get a major bug, it always requires a double or even triple dose. Was very rough. So was at the high dose for 2 weeks then as it passed got it back down to my usual 40mg. However the virus didn't totally leave so it seemed.. for the next few months I've still had a sore upper respiratory, left lung and throat. Taking a strong combination of echinacea, andrographis, olive leaf etc 4x a day is the ONLY thing that has helped it be any less severe. Soon as I stop them it gets much worse.

    Now in early May, I got ANOTHER major virus/flu, requiring raising HC back up to 70mg and some days 80mg for another 2 weeks. It's only just started turning around the last 4-5 days. I'm back down to 50mg HC at the moment, but I'm a complete wreck from all this.

    Also the other point of this post - im not sure if it's due to the viral activity, but my systemic pain - muscle & joint etc (fibro flares), has been worse than ever in the course of 10 years. Generally before this, it's usually been say, a flare somewhere in the morning, then again in the afternoon - pain builds up to a point then gradually releases over 1-3hrs of resting, (as fibro flare cycles go for most).

    This year though, the flares have been getting longer and more intense. Many days I will get the worst flare of systemic burning pain, everywhere, and the body will stay stiff and terribly painful sometimes 12+ hours straight without a break, and has at times left me in tears. I'm usually very patient and tolerant (especially seeing as I can't tolerate any pain meds), but this has been incredible. Sometimes it's been there almost 24hrs, and if that pain doesn't release, I cannot function to do anything, the body and brain are too "stiff" so to speak.

    So that's what's going on at the moment. Quite concerning considering its such a significant increase in symptoms in a short time. I assume it's possibly the viral activity, but what would make this last so long unrelentingly? That's the ever frustrating question.

    Not sure if anyone will be able to help, but thought i'd share. Having done so many years of research and tried/trying so many treatments, I'm just so frusrated & not getting where I need to be.

  2. Mikie

    Mikie Moderator

    I am so sorry for what you are going through. Does your doc think you might have a chronic, stealth virus which is reactivating or, perhaps, a bacterial infection? I have a virus, probably in the Herpes Family, EBV, CMV or HHV-6, which reactivates and leaves me feeling as you describe. I do not have the added burden of adrenal insufficiency to deal with. I take Acyclovir until it beats the virus back into latency. If I get run down or sick, the virus will reactivate.

    I'll keep you in my prayers and hope you get to feeling better.

    Love, Mikie
  3. Wolverine

    Wolverine Member

    Thanks Mikie. Hehe, 'my doc'. I actually don't have a regular Dr unfortunately at the moment. I've been so unwell and housebound for the last 2.5 years that i havent been able to go out to regularly see one doctor. I've been getting locums (after hours) home visits for any major issues, or speaking to my old GP up the coast (10hrs away) for prescriptions and ideas. He can't test etc from up there though, so i've found it hard to make any progress with Dr's. Mostly been doing things alone and through help online etc.

    I'm currently on Doxycycline in case there is a bacterial aspect to it. Im getting over the worst of the flu type part of it, however this lingering viral effect is still there (but now it will be enhanced by the latest major episode) so I can't really tell yet what's going on. Im sure I likely have stealth infections (of course candida has been a long term one) but I havent been tested for specific viruses as the ones you mention. It feels like this thing keeps reoccuring though, same symptoms each time since the first major respiratory virus/flu type thing last year. Left me with 3-4 months of ongoing symptoms back then too. I've never taken anti-virals, and not even sure how one would go about getting them from a Dr! Unless they were versed in CFS and the immune problems that go with it.

    Thanks dear. x
  4. spacee

    spacee Member

    I really don't have much else to offer. Wish I did.

    I feel like you did before the crash. My am cortisol is low. I feel better after supper.
    Really hate to go to sleep at nite but trying hard to stay on somewhat "normal"
    schedule for appts.

    I just started back on the Target Transfer Factors sold by Chisolm. 1-803-663-9618.
    Don't represent them but their # isn't on the internet that I know of. The one for CFS
    is #2 and targets about 5 things. Pat there is very helpful.

    If you do decide to try it, just open the capsule and take a tiny bit out and put it under
    your tongue. Then put the capsule back together til the next day's tiny bit. Very slowly
    work up to one a day. The bottle of 30 is expensive about $150 plus shipping but can
    last up to several months if taking tiny bits. Later, it can be taken 3 times a week and
    that helps with the cost too.

    This won't help the Addison's but might help the viruses. Prohealth sell's cheaper ones,
    which might be good to start with to not throw so much at your immune system. One is
    for EBV, MCV and the other is HHV6 but you need to call them and they will give you
    better info.

    (((Hugs))) this DD is dreadful.

  5. gapsych

    gapsych New Member

    I know this is easier said than done, but it sounds like you need a complete physical. Is there any way this can be done? Maybe someone drive you or getting a doctor closer to you.

    Addison's disease is very tricky and a specialist in endocrinology is imperative.

    Take care. Sorry to hear you aren't well.


    ETA Put wrong disease.

    [This Message was Edited on 05/25/2011]

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