Bunchy...are you out there?

Discussion in 'Fibromyalgia Main Forum' started by shelbo, Apr 7, 2009.

  1. shelbo

    shelbo New Member

    I, like you, have dreaded MCS symptoms.... When I was looking on your profile and read your journey has been...'very, long, weird and complicated' I thought....'a kindred spirit!' My symptoms are so weird and perplexing I feel embarrassed sharing them with others lest they think I'm visiting from a distant planet...

    Anyhow, I saw that you were trying to get an e-mail swapping system going but it looked like it didn't work out from what I could see looking back on your posts..
    I have I am not contravening the rules here but I thought there may be a way around this... I am on another board called makeupalley (if you do a search you'll find it....) I've been a member for years (just before all this rubbish started in earnest!) I still pop on... It's free and there is a private post facility which we could use to share our e-mail addresses (if this isn't allowed, I apologise...)

    I notice too that you are in London...I'm in the UK (Liverpool)...so we could perhaps be phone buddies too?

    My CFS/ Fibro/ Chemical Sensitivity is not straightforward, it seems.... I'd love to write/ chat :)

    I am struggling right now with my situation since I have rosacea too (also affecting my eyes) and the products I rely on to care for it (which are ok with my chemical sensitivity) have been changed and now I can't tolerate them....the pressure is on to find replacements (thankfully, I still have a tiny stockpile of the stuff I tolerate but the pressure's on to find stuff to clean my freakily sensitive eyes and skin without upsetting the chemical sensitivity (nausea, headache, breathlessness, fast heartbeat, extreme fatigue).... Right now, I have this weird symptom (even with the cleanser and moisturiser I tolerate) which is that if I don't get ready by a certain time of the day using these products I feel horrendous.... I used to be able to tolerate a mineral powder foundation which made life a little more bearable but out of nowhere that started to bother me and so I am now prevented from being able to go out (skin gets way too sore)! But, as I said, my MCS situation is not straightforward...
    Anyway, enough of my gas-bagging... I just thought it'd be nice seeing as we're both in the UK..
    I think I am about to test a diet (it is based on a book I saw here called Sugarettes) to see if I can detox... I have some milk thistle...have never heard of nac though...I take a green food supp too called Barlean's... On Jam's recommendation I am also trying Pycnogenol..
    I may see you around later as I'm gonna try to post (again!...feel so embarrassed) to ask for skincare recs.... there are some on the MCS board but most of them I've tried and can't use...
    What do you use?
    Take care and hugs...hope to hear back from you :) Shelbo
    Ps I saw, in one of your posts actually, that Jeanne-in-Canada was almost MCS free and there is currently a message by Munch1958 on the MCS board saying she is cured from MCS...I replied to Munch but haven't heard back yet.... MCS and cure in the same sentence.....that gives me hope....

    [This Message was Edited on 04/07/2009]
  2. Bunchy

    Bunchy New Member

    OMG someone wants to be my buddy..LOL!

    My illness involves a lot of weird nervous system problems, pains and sensations and things like chronic thirst, badly affected enteric (stomach) nervous system, weight-bearing pain in my back (you might have seen my post on that), an extremely weird and terrifying nervous system reaction to heat etc etc as well as the usual CFS, FM and MCS symptoms.

    I would say the more complicated CNS stuff is far worse than the CFS/FM for me.

    I'm flattered you'd like to be my friend although I am terribly shy as I have been a virtual recluse for many years having little to do with anyone except for my DH and sister and occasional visits with family (with whom I have a difficult relationship due to them not getting or being supportive of my DD's).

    Perhaps we could arrange a time (afternoon or evening) where we could quickly swap email addresses and delete the posts immediately?

    What time and day is good for you?

    Love Bunchy x

    PS Are you a footy fan? I support LFC!!!
  3. shelbo

    shelbo New Member

    I'd love to do that..... I could swap tomorrow (Thurs) at about 3 in the afternoon.. We could've tonight but I don't know whether you'd see this in time so I thought tomorrow offered a bit of notice).. :)
    What do you think?
    I'm sorry about all your horrible symptoms... it really is a nightmare, isn't it? Also, sad that family member don't understand...I sort of gave up trying to explain to some of my family...I've pretty much accepted that some people won't get it unless, tht is, they develop this DD themselves. I'm not sure about CNS involvement ...although, as I explained, I feel disastrous if I don't get ready with my usual cleanser and moisturiser by a certain time... the longer I put off doing this, the worse I feel...it's really odd and something I need to get tot he bottom of.... it's almost the same as when I am exposed to chemicals, that kind of chemical sensitivity reaction,...weird...maybe this is CNS disturbance...I dunno
    Anyhow, I won't bore you with the details (just yet LOL)
    Not a big football fan, I'm afraid... my dad (God rest his soul was though!)
    Let me know what you think about 3 tomorrow then.. :)
    Ps...Don't worry about being shy....I can be a bit shy myself... Like you, I am pretty much housebound and don't see too many people....

    [This Message was Edited on 04/08/2009]
  4. lukro

    lukro Member

    I read the message where someone said they were nearly cured (or some such language) of mcs because they were nebulizing glutathione. I have been doing this for about 4 years and am not close to being well. This shows how individual we are. Also I think it important to exchange info--what works for one may not work for another so don't rush out and buy nebulizable glutathione.

    I would love to exchange info on the mcs message board. I have been having discussions with others (off board) regarding mcs.

    Any chance we could visit about our chemical sensitivities on that message board?
  5. shelbo

    shelbo New Member

    I'd never even heard of nebulizing glutathione... :)
    I'm sorry, though, since others have had success with it, that you haven't experienced the same...
    You know, I came over here to ask questions because the MCS board seems not to be getting off the ground.. I wish more people visited it more often... there must be lots of people here with MCS or chemical sensitivity as a component of their condition... I'd love to use that board to talk and exchange info about MCS if there was more activity there... I do also have CFS/ Fibro so I like coming to this board also anyway...but I would love it if the MCS board was more active..
    I wonder if there is a way we can get more people with chemical sensitivities to post there..?
    Shelbo :)
  6. lukro

    lukro Member

    I agree about the mcs board being inactive. I also have fibro and cfs, so I read this board. I do not post very often.

    I visited w/ someone last night who has mcs and is unable to work outside his home. He does not have any other conditions (e.g., fibro and/or cfs). He has not tried any experimental protocols, but I have. I did the Martin Pall, Grace, Zeim, another refined by a compound pharmacist, etc. I may be a bit better but I am far from well.

    I continue w/ the glutathione because it helps my allergies.

    I use all green products--from household to toiletries (more expensive, I know).

    I am a hermit most the time. Travel is impossible. But my relatives are very understanding and do not use chemicals around me.

    Anyway, nice to meet you. I hope to exchange information. Google this name, "Pamela Gibson." I just found her and she wrote a book that we need to buy (and it's not expensive!).
  7. Bunchy

    Bunchy New Member

    I'll come on at three tomorrow (Thursday) and title the post "Shelbo"

    Meet you there...

    Love Bunchy x

    PS sorry I didn't get your message emailed to me earlier - hope nothing's wrong with that function on the board.
    [This Message was Edited on 04/08/2009]
  8. shelbo

    shelbo New Member

    Sounds great! :)