The 12th Invest in ME Conference, Part 1
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Hard to take anything without overreacting

Discussion in 'General Treatment' started by Bryan, Nov 29, 2015.

  1. Bryan

    Bryan

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    I don't know what to do. I am running out of options. I have had CFS for 4 years now and I am constantly getting worse. I can't take any drugs or supplements without my body overreacting (even simple supplements like b vitamins and vitamin C in the lowest doses). How can I heal when I am in this state? Can anyone relate?
     
    maryb and barbc56 like this.
  2. Esther12

    Esther12 Senior Member

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    Really sorry to hear that you're struggling with things. If there's nothing that does you more good than harm, then doing nothing might be the best thing for you? A lot of the people selling things to treat CRFS don't have good evidence to support their claims, so it probably is best to be cautious with it. Fingers crossed that you see some improvement.
     
    barbc56 likes this.
  3. barbc56

    barbc56 Senior Member

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    @Bryan

    Welcome to Phoenix Rising. There's some very good information here.

    I have the same problem with some medications but not all.

    There are no guarantees that any treatment will work.What helps one person will not help another and this can be very frustrating. But we are all in the same boat which can be reassuring.

    I think you will find this forum very helpful!:)

    Barb
     
    Esther12 likes this.
  4. xrayspex

    xrayspex Senior Member

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    sorry to hear this.. I have similar dilemma.....its a lot of work trying to figure it out and play around with ideas when can....hang in there, you will likely get some good ideas here or at least know you are not alone
     
  5. butterfly7

    butterfly7

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    Could you have salicylate intolerance too ,only thing i can take is iron ,and some cell salts ,all the best
     
  6. brenda

    brenda Senior Member

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    Bryan l have problems with supplements too, so use dried forms of fruit and vegetables to boost my nutrient intake. The most helpful l have found are, green barley grass, and a fruit called camu which is high in vitamin c, but there are many others and you can buy mixtures too. I just mix a teaspoonful in water and gulp it down though you can add them to juices if you prefer. They are very concentrated.
     
  7. justy

    justy Senior Member

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    Hi Bryan I can relate. It turns out I have Mast cell activation syndrome. This is because I have chronic bacterial infections that were missed for many many years. Eventually I became so ill for so long that the immune system is now on a hair trigger. Getting it to calm down is another matter entirely - I H1 and H2 blockers to control some mast symtpoms but still cant take most drugs or supplements without making it all worse.
     
  8. PeterPositive

    PeterPositive Senior Member

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    Hi Bryan,
    unfortunately this is a common situation for many of us ( you can see it by the number of replies and occurrences of similar questions ).

    I've had the same problem since 2009 with a major crash in 2011 after which I was bed bound for 9 months... At that point I could tolerate only a minor selection of food, no drugs and no supplements without all sorts of crazy reactions.

    One of the major issue at the time was the infamous methylation cycle. I had no folate in my body, very little vitamin B12 and extremely high homocysteine among other things.

    Taking B vitamins to counteract the problem was also very difficult as I couldn't tolerate any. I literally had to crush the already small tablets and only take a few crumbs. After several weeks I got to a point were I was able to add a little bit more and kept going from there. It took me many months to be able to take a decent dose but I got there eventually.

    Besides B vitamins that trick for me was to really start super low and slow with almost any food and supplement and be super patient. The latter is even more important. I used to try something (e.g. zinc), take a full dose (10mg) get terrible abdominal/digestive distress and throw away everything in despair.

    It turned out that I just needed to use a different strategy, don't shy away from taking what I was given but only reduce the dosage enough to avoid side effects ... and slowly increasing over time without anxiety.

    Besides a couple of exceptions I was able to recuperate many of the nutritional deficiencies, recuperate some energy and get out of bed.

    Hope this might be of some help.

    cheers
     
    CantThink and ScottTriGuy like this.
  9. digital dog

    digital dog Senior Member

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    After 18 years ill, and boat loads of supplements and drugs, I have come to the conclusion that I cannot tolerate anything really. I get all sorts of nasty side effects that can land me incapacitated for years.

    I have also, however, come to the realisation that nothing would probably help even if I could tolerate them.

    It's a very scary place to be when you can't take anything but are so sick. If I had to have an operation or was in an accident it would be game over for me. I would not be able to tolerate pain killers or anaesthetic.

    I have now put faith in time healing me. It is all I can hold onto.
     
    wintersky, Mels, maryb and 2 others like this.
  10. LC2015

    LC2015 Senior Member

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    Oh god same and I'm new to all this nonsense! Every slight thing and my body is getting sicker and sicker! You are not alone! Kinda annoying for two reasons 1) obviously I wanna feel the effects of al these supps people swear by but can't think how without getting oils/injections which bypass the gut entirely 2) my wailing reluctance at taking things I think translates to my family as me being stubborn and malingering but the truth is I'm just trying not to do any more damage!! :alien:
     
  11. Effi

    Effi Senior Member

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    hi @Bryan I have a similar problem. Trying things is very risky. Even super tiny doses give me ridiculously severe side effects. After I've tried something it takes me days/weeks/months to get back to baseline.

    Above all, I focus on staying on my baseline to avoid extra strain on my body. I also tried to figure out exactly which foods to eat and what to avoid, just by feeling how my body reacts to different things. And one other thing that gives me symptom relief and higher quality of life (although still housebound, but with less severe symptoms) is regular manual lymphatic drainage (Dr Vodder technique).

    hang in there! it's a rough journey you're on, but you're not alone :hug:
     
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  12. LC2015

    LC2015 Senior Member

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    What does said drainage entail??
     
  13. justy

    justy Senior Member

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    Apart from the mast cell activation I also have weird paradoxical reactions to drugs. when on prednisolone I couldn't stand the sight of food and lost weight - I was also extremely fatigued and suffered steroid psychosis at around 25mg, which is not a high dose! The next time I tried prednisolone I got steroid psychosis after one 5mg tablet!!!

    I had severe akasthesia for around two years after taking just two doses of an SSRI - the after effects of that took another couple of years to wear off!
     
    maryb and Sidereal like this.
  14. Sidereal

    Sidereal Senior Member

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    Same here. I can't even get my teeth fixed for the same reason.
     
    Mels and maryb like this.
  15. Effi

    Effi Senior Member

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    hi @LC2015 It is a very gentle manual treatment, similar to massage but a lot more gentle. (I can't have regular massages because they trigger sensory overload.)

    The lymphatic system is responsible for cleaning waste from the body and is a very important part of the immune system. I suspect (but have no proof for this as there is very little scientific research into this) that the reason why it works for me is that my immune system is overactive and is constantly producing waste products, similar to when you have an acute flu or infection. This technique stimulates the lymphatic system so that it can clean up more of the waste.

    A lot of theories on ME talk about chronic inflammation/immune activation being a driving factor in the illness. This puts a big strain on the lymphatic system and it ends up getting totally clogged up (at least that's my personal experience), which causes things like pain, stiffness and headaches. Let me add that this is not a cure, but it does give me higher life quality.

    I use the Dr Vodder technique. A lot depends on the therapist, and on how regularly you get the treatment (I get it twice a week). I've heard in the UK there's also something called the Perrin technique, but I have no experience with that. There's a forum thread on it here. (Perrin seems to sell it as though it's a cure for CFS, but I would be cautious to use words like 'a cure'.)
     
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  16. justy

    justy Senior Member

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    8 months ago we tried to drill a tooth for filling with no anaesthesia (have done this before), but that time it hurt too much as the cavity was deeper than expected. In the end he had to pack it with fluoride and put a temporary filling over the top.

    Last week I went back to have another small one filled, again without anaesthesia and to try and have a local to take the temporary one out and finish the job. However as I had a seizure from an inhaled steroid a few weeks ago, and my itching is out of control again after a probiotic trial we decided a local would be too risky right now. Anyway he tried to drill the other tooth and the same thing happened - so once again packed with fluoride and temporary filling on the top. We are hoping this will halt the progression of the decay at least - sometimes it kills it completely, but it may do nothing. I already lost one tooth to decay a number of years ago and don't want to lose anymore.

    I asked him what I should do and he says he doesn't know. I asked my GP what I should do and he said he doesn't know - pretty rubbish really, especially as the NHS acknowledges I have MCAS.
     
  17. Sidereal

    Sidereal Senior Member

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    Horrible. I don't know what to say. Every filling I've ever had done was without anaesthesia or painkillers. However, I now have a tooth that requires a root canal so I'm stuck not being able to do anything about it due to MCAS. I'm sure even lidocaine would do me in. I can't even imagine what would happen if I were in an accident or developed appendicitis or something and needed surgery. Death probably.
     
    justy likes this.
  18. Crux

    Crux Senior Member

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    Women, you must have steel balls!

    I can't imagine not having anaesthesia for dental procedures.

    Tomorrow, I have dental surgery. I can tolerate local, thank goodness, but the oral surgeon offers either nitrous oxide, ( no go), or a general (?).

    Years ago, an oral surgeon removed my wisdom teeth. He hooked me up to a demerol drip. I've never been so painless.

    Propofol is used for colonoscopies.... I wonder if that would work without side effects. Don't know if dentists, etc. can use it.

    I sure do hope you all can find something. I tend to fret about dental infections, et al.
     
    Mels likes this.
  19. justy

    justy Senior Member

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    Ha ha! actually if the tooth is not sensitive and the filling not too deep its actually fine. ive had a few like this and I can tell you its better than having needles stuck in your gum and afterwards you feel completely normal and fine.

    Last week my youngest had her first filling and my husband also had one - their mouths hurt and felt bruised and funny for a whole day - I came out feeling no different to how I felt when I went in! (only miserable because we hadn't fully sorted my tooth issue).

    When I am laying in the chair, I just tell myself 'woman, you have had 4 babies with no pain relief - surely you can handle a bit of drilling!' unfortunately this tooth was too sensitive and the dentist didn't want to carry on, even though I would have tired a bit longer.
     
    Mels likes this.
  20. Crux

    Crux Senior Member

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    It seems we become used to feeling crap with pain and all.

    As I age, though, pain is harder to take. Oral pain makes me weak.

    Just thinking about what you've endured.... awful.
     
    justy likes this.

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