Does any one else think that their ME/CFS is triggered by sensitivities?

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I wondered if I am the only one... 

I have often wondered if other people have had the same experience as me, although, I also know that everyones ME/CFS is different.

I have had ME/CFS since 2000 ( of course it wasn't recognised, in the UK (at least then) but that's how long I have had it.  I thought I would share what I think has been the key for me.  I have never actually recovered but have been able to manage the condition for years to the degree that I was able to have and care for a child without difficulty, yes, sleepless nights and feeds and all that...

I was really sick for the first couple of years after a virus and felt like my life was at an end to be honest.  I was confused and disorientated and unable to funtion normally, unable to express myself of even think staight and unable to really look after myself, my memory was shot to pieces and I was disending into being almost bed riden, just surviving with all the things I needed just around me, like a nest.

I did reach out in a few ways, one of which was to subscribe to a couple ME magazines. I rarely read them as it was too much concentration but one day I did really read one atricle which changed everything.

The atricle was about alllergy testing; not a scratch test from the doctor but from alternative practitioners a "non invasive" method using mild electicity that would measure your reaction to substances.  Intolerences really rather than allegies.

I got tested and was shocked to be given a large number of things to avoid.

It took me about six months to actually impliment the changes necessary; i.e. changing diet and the most important thing was to change my bed/bedding/bedroom.  I had to wash everything, hot and regularly, get rid of carpets... Luckily I had done that already as I like wood floors... and clean the place up.

I had been decending into a nest of housedust mite and mold!I understand that most people think that the level of change that was required is unacceptable but, to me, my quality of life had been unacceptable, and I was willing to do almost anything.

After and during that six moths, things changed alot and I got my life back and was able to function normally, just had to be carefull about my my diet and environment.  After excluding the long list of things I was able, then, to tell if something not on my list affected me as I had a point of clarity to compare with and identify something that made me feel ill. Previously, I would have had no chance as there were so many things going on it was just a mess of illness.

I still have to be very careful about everything and it can be abit isolating but I have me back and I really can feel normal.

I have to say, though, that in 2009 I moved house to what I didn't realise was a damp house ( previously I had just had to pull up carpets and I was fine ) and I had a major spike in the number and level of intolerences I had and became sick again.  Since then I have had to be much more careful and have had to make alot more changes, especially moving to a better house, which is extreme, I know, but I am well again which to me is so amazing I don't really mind what I have to do.

I write this as I think that it's possible that it could help others, I know that everyones ME/CFS is different and it's wrong to be prescriptive to others, I remember people saying to me, you just have to do Blah Blah and you'll be fine, none of which ever worked...  But I can't help wondering if it could be the same for others because if I am having a problem, especially with something I am exposed to while asleep, I come down with real classic ME/CFS symptoms, and how!

Just thought I'd put it out there.

Best hopes and wishes to all.

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  • Posted

    Hi, I agree with you that sensitivities to different things in our environment and diet can trigger/maintain symptoms!

    My understanding is that it is the over-reaction and constant responding of our immune systems that increase our sensitivities/intolerances and this in turn puts undue stress on the body which increases levels of "stress" hormones which eventually cause problems with the energy-balance mechanisms of the body. Hence, involvement of most of our body systems and varied symptoms, as well as fatigue!

    For the past few years leading up to my diagnosis I have had lots of "allergy" reactions. Always had eczema and hayfever , plus developed asthma in my late teens. Have had various skin eruptions in relation to different foods. Last year, leading up to my major body break down, I started reacting more severely to oral medications and even some medicated creams which I had previously used!

    All these things seem to have reduced again since beginning to pace my activity and changes to a better diet and eating pattern.

    All interesting stuff! Isn't the human body amazing?

    Best wishes to you :-)

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  • Posted

    l think its very complex, but sure there,s a big connection to immune system. l first became aware in my early 30s, had moved from hillside village to town suburbs on side of main road, quickly started with severe allergic rhinitus, attacks of choking coughing congestion, worse when at front of house onto main road,but couild have bouts on entering toiletry secion in some shops, l was given rynocrom which sort of plugs the nose and it helped a lot, at simular time had allergic reaction to penicillin, hives swelling passing out, anti histamines sorted that, On moving house up the hillside again, the rhinitus decreased without meds, on moving again it returned, meds getting less affective, also due to repairs noticed cement plaster dust set of symptoms, as did soot, the gp said its like opening a window and other allergens affect. Noticed diesel fumes choked if stood near parked running diesel van. l read up about it and it seemed formeldahyde was an allergen for me, as its in many things used including those l was allergic to. l also at time had bad thrush, immunity again, but later was diagnosed with intersticial cystitus, another immune condition, experts not sure if auto immune or allergic response to unknown thing, l,d been prone to skin probs, bit of eczma, psoraisis, come up in rash,s fairly easily, conifers touching bare skin, insect bites. l read that the body immunity overeacts with producing mast cells that spurt histamine, which causes inflamed red area, which is about trying to contain what the body see,s as an invader in one area, encircles it, so its doesnt travel through the blood stream and body, l think most allergic reaction cause inflammation, swelling, and it can affect the nervous system, as does i.c, central or peripheral.

    Strangley l think with cfs me, fibro, maybe lupus also, there isnt any inflammation, which is why its hard to diagnose, maybe it goes straight to immune system or nervous system, l dont know if experts know about it yet, but as elmo stated its probable it does affect the glands and hormone,s,  some of the symptoms are like those for other hormonal problems, thyroid inbalance, and we know the pmt and menopause can cause hormone inbalance, with immune disorders more systemic throughout in a more severe way. l read, in the years waiting for diagnoses, before net, that were born with immune  t cells which we get from mothers before birth, and produce immune b cells throughout our lives, Could we be short of some due to mums problem pregnancy, or maybe not produce enough bcells, although l,m sure the expers would know that.  Or is it not possible to have stronger immune cells transplanted, which they do for leukemia, maybe not, Very complex. lve tried to reduce allergens as much as poss in the home, improved diet,  but we cant do much about those we breathe in, or in water, Probably also big differences in different country,s in levels of immune diseases. i.c. def more common in western indulstrial country,s, l think in time research will find ways to improve immune responses, live in hope, whilst doing what we can to help ourselves. Best Wishes with it

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    • Posted

      Thanks for that, it was interesting...

      I wondered, reading your story, have you ever heard of MCS ( Multi Chemical Sensitivity ) Which I recently read about, theres a charity MCS Aware who have a lot of info about it...  I think it might be of interest to you.  I think that my ME/CFS is maybe partly MCS or linked or triggered by it...  Still no treattment for it but good to know that other people have these bathling lives!!

      Good luck with it all in any case.

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    • Posted

      Ironically l just heard of it a few weeks ago for first time, l also look in on `healthunlocked` site, on fibro page, One poster had recently seen a specialist about her various long standing symptoms, the specialist did diagnose fibromyalgia, something else and mcs, no on had heard of it, but moderate put list of symptoms, and yes it all sounded familiar, l can jsut imagine many people being cynical, as some already are about cfs, but l believe in it, l just think some of us are unlucky and not having food immune systems and vunerble to mutli allergens, chemicals, affecting us. Be nice to be wealthy, as some countries do have more allergens toxins, pollution than others, l read mauritius second cleanest air in the world, not sure lst, but be good if we,d enough money to buy a place in such clean air and see if we improved significantly. Dream on, but thanks for into will look at site for mcs. Best Wishes to you also, all of us. 
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  • Posted

    Hi dilemma, I've been considering allergy testing for a few years but not sure whether I was ready to implement what I learned. Ive had test done; the electrodes one, it was on special offer. Like you, it will take a few months to implement but I'm going to give it a go. Some of results were expected, others surprising. I'm going to try to go gluten free as this was my worst result. It could help the ulcerative colitis as well as the CFS. 

    Thanks for the info and encouragement.

    regards.

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    • Posted

      I strongly advise you; as you have come this far already, to really give it a go, to impliment the changes needed to exclude everything, at least for a while to see what happens...  The trouble is that if you leave a few offenders in there, you'll still not know if it has worked as just a few things can bring you down.

      I know that it can seem very daunting, especially when you don't feel well, but if it can change that, isn't it worth a try?

      All the very best of luck.

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    • Posted

      Hi dilemma,

      just letting you know that I'm trying to respond to my recent allergy/intollerance tests. I'm focusing on gluten free and dairy free. I'm certainly seeing benefits. I suffer from ulcerative colitis and this has definitely improved. I'm seeing slight improvements in my housework and my ministry so I must be getting a little more energy.

      thanks for your encouragement.

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    • Posted

      I'm so glad that you have found some improvement from this destructive illness...  Any improvement is worthwhile in my book.

      Well done, I know it's not easy to have to make extra effort, especially when you feel so ill.  But it's all about quality of life and if that can be improved, the effort is worth it.

      I feel heart warmed that something I have posted has been helpful.

      With that said, I would also urge you to try to impliment as many changes as you can...  Because, it is only when you remove pretty much all the triggers that you can really see the best results...  And you can then identify clearly if something becomes a problem or things that just haven't been identified ( they can't test for everything ).

      I also have a bit of a secret weapon in the identifying problem substances department.....  Which is very left field and I don't generally like to broadcast but is invaluable to me.  My hippy Mother suggested it way back and, although, I was sceptical, I tried it...  She suggested I use a pendulum to determine what was OK and what was not.  It works on the princple of water divining or "dowsing" and that really, underneath our understanding, we actually know what is good for us and if we let our body choose, it will know.

      Basically, you get a small heavy object on a piece of string ( you can buy them quite cheaply from crystally hippyish shops ) but anything that hangs freely will do.  First you have to determine what is a positive result by hanging the pendulum over a glass of water (which it would be assumed would be positive) and by just hanging it over the object in question and saying to yourself "is this alright for me?"...  Your arm should be loose, not resting on anything or tight to the body and the pendulum should start to either swing in a straight line or swing in a circle, for me with most pendulums a circle is yes and a straight line is no but I have to check each pendulum.  My son has the opposite result with the same pendulum!

      I know this sounds completely bonkers but with the "eliminatine" stagegy, I have found it both reliable and in valuable.

      Obviously, you are doing great as you are, so that is brilliant... I just thought I would elaborate in case you felt like taking this further.

      Good luck whatever you do!

      And trhanks for letting me know that something I said helped you.

      All the best.

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