newbie from UK

Discussion in 'Fibromyalgia Main Forum' started by Racheleliz, Aug 27, 2003.

  1. Racheleliz

    Racheleliz New Member

    Anyone else from the UK? Hi, ive just found this site and think its great. I was diagnosed with CFS a year ago and am under an immunologist who recommends nothing but the old 'graded exercise programme'. I've tried but after a few days of swimming ten lengths and trying to be a full time teacher i will be reduced to an aching, nauseus and depressed person that everyone just thinks is a lazy miserable cow! I'm not on any medication having come off antidepressants after four years, could anyone recommend anything to get me started back on the right track? Im only 23 and would like to have some of my life back!!!!
    You all sound like really great people and the US is moving on with this disease when compared to the stiff upper lipped Brits, including doctors. You all recommed things but i don't know how to get them over here, it would be a year before i could see a specialist!
    [This Message was Edited on 08/27/2003]
  2. Shirl

    Shirl New Member

    Hi Rachele, welcome to our world! Great site here, and yes we do have quite a few of your countrymen/women here.

    So sorry you are having problems with the doctors, thats hard to deal with.

    I have Fibromyalgia, not CFS, but we have many members here who have both.

    I do not take meds, I am so allergic to most medications. But we do have others here that can help you.

    Good to have you join us, and I do hope you get some help soon, its terrible to be 23 and ill.

    Shalom, Shirl

    PS If you change your 'Title' and put "Newbie" from UK on it the Brit's will all answer you quickly!
  3. tansy

    tansy New Member

    Seems like you got the only treatment and advice most of us have been offered.

    There's lots you can do for yourself but it will take some researching, most of what you need is on this board. You could start with diet, high protein/low carbs suits most, and making sure you drink enough water. Then look at digestive enzymes and magnesium.

    Many of us Brits here got tired of the attitudes to living with these DDs, and lack of any real medical intervention. Nickname and Slowgirl go the best doctor in the UK, Dr Ian Hyams, but he is expensive.

    The rest of us have researched and use a few drugs but mostly the natural alternatives, I'm just getting to the stage now where I know my very extensive programme is making a difference, and I've been ill for 22 years.

    Good luck and I'm sure you wil soon be so glad you found this board.

    Cheers

    Tansy
  4. PatPalmer

    PatPalmer New Member

    Hi Rachel,

    Welcome to the board. I agree with Tansy and would add pure unrefined Sea Salt and Flaxseed Oil to the list.

    Again, tap these into the search messages at the top, a long list of past posts will appear but you`ll find articles there somewhere - be prepared for a long spell of reading.

    Look forward to hearing from you more,

    Love Pat.
  5. Shirl

    Shirl New Member

    Shalom, Shirl
  6. pixipip

    pixipip New Member

    I agree with Tansy too, I have fms and I find co-enzime Q10
    has really helped my fatiuge, it makes the difference between being able to get of bed or not, I take a high dose though.

    Hope you like it here it's a home from home where people truley understand and try their best to help you, but still give affection and encouragment if they can't.

    Love & Light,
    Jacqui
  7. Fibrolady37

    Fibrolady37 New Member

    Im sharon another Brit hi & welcome you"ve found a great site here girlfrend it"s a real lifeline.
    Im 37 next month & have Cfs & Fibro & have been dx 8years next month.
    The docs here are hard work & most treat you like it"s all in your head,they have no idea what we go through.
    Im really giving my new docs what for!I joined pratice in April & ranted & raved at senior partner a few weeks ago he was great & told me he probably knows as much about Fibro as he does,i agreed.Im very straight & speak as i find & when i stand up to the doctors i find they respect me more for doing this.
    My symptoms may be severe but i can still open my mouth & give them what for it"s what they need every now & again!
    Very gentle hugs (((((((((((((((((((( take care sharon d(UK)
  8. Chrissy3

    Chrissy3 New Member

    Hi Rachele, Im a newbie too only been here a couple of weeks. This is a great informative place. I was hesitantly diagnosed with CFS a couple of years ago. I also did the graded exercise thing - NO good!!

    I am from Yorkshire and have made an appointment to see a private Doctor that deals in thyroid adrenal problems and hormones. My own GP wants to give me antidepressants and send me to a pschologist.

    I am struggling to do a full time admin job. That must be hard work for you teaching.

    Nice to meet you,

    Chrissy x
  9. RENA0909

    RENA0909 New Member

    Nice to meet u on here.I love this site its so easy in informative and everyone is so nice.I had fibro but i still could work but then had an op 4 years ago and now have it severe so coming on here helps me keep my sanity when no-one else understands what it is all about!!
    Which is sooooo depressing sometimes.
    Take care
    RENA UK



    [This Message was Edited on 08/28/2003]
  10. underwhelmed

    underwhelmed New Member

    I'm also from the UK, although north of the border. I'm 27 and have suffered from CFS in varying degrees for a number of years. It does seem like the USA is well ahead of us in treatment ideas for CFS and FM, but hopefully we can learn from all the information available from sites like this. I find it helpful to do some research here before a trip to the doctors, so that I can go armed with more information than I would otherwise have had.

    I haven't seen any specialists who are dedicated to the treatment of this disease, although I have had to see specialists in certain fields in order to treat some of my symptoms. Like many others that you will find here though, I am beginning to feel that holistic or alternative therapies may be the way ahead. I'm currently seeing a homeopathic doctor who my gp referred me to on the NHS - it's early days yet, but I have my fingers crossed.

    I did try the graded exercise program and I'm currently trying to increase my exercise, however this route often seems to cause me setbacks as I just seem to get exhausted. It's SO hard to find a happy medium!

    Good luck with everything and well done for managing to continue teaching! It's so hard to keep it all together, but it sounds like you're doing a good job.

    Bud :)

  11. averilpam

    averilpam New Member

    I live in Yorkshire also.
    I was diagnosed with fm by my GP. I haven't even asked to see a specialist, I don't want to be fobbed off with anti-depressants etc! I've always preferred to use natural/alternative treatments.
    I currently take magnesium, flax oil and bee pollen. I take ZMA to help me sleep, it's made a big difference. I'm fortunate not to have severe pain, it's worst in my legs when i walk or stand too long. The fatigue is probably the hardest to cope with at the moment.

    I'm currently having homeopathic treatment which is helping me - very slowly. I've also seen a physiotherapist who has given me a useful set of excercises for fm, very gentle excercises, she also encouraged me to walk as much as poss., which I do as I have a dog who needs walking every day.

    I'm on my feet most of the day at work, so most days I can't cope with
    much more.

    hope you find something here to help, Rachel
    pam
  12. loopyloo

    loopyloo New Member

    I am from the UK too, Milton Keynes East Anglia area i was diagnosed with CFS or ME as the british doctors call it and i think i also have fibro as i hurt so much but no one has diagnosed it yet, the board is good nice people and lots of info
    ((((((((((((big hugs )))))))))))))
    Loopyloo xx

    i have now been diagnosed with fibromyalgia 2 weeks ago some of use have an idea what it is but have to wait till the doctors say what it is
    welcome to the board
    Loopyloo xx[This Message was Edited on 09/16/2003]
  13. HuggyMummy

    HuggyMummy New Member

    Another UK-ite here - live near Leicester, East Midlands. Have had FMS/CFS since childhood - no 'official' dx from docs, just that 'its all in yr head' attitude and looks - but never mind you learn to deal with these things over the yrears (NOT!).

    I really hope you can get the care you need; it must be really hard being a teacher as well. What age group/subjects do you teach? I'm just about to start a degree in Psychology w Neuroscience in order (eventually) to become an EdPsych. Will need to teach 2/3 yrs first, and I haven't yet decided whether to train as an 'Older Years' Prinary teacher or a Maths/English/Science Secondary teacher; fortunately no hurry yet - that's 3 yrs away. And only if my brain hasn't totally degenerated to complete 'mush' by then!

    Please excuse typos/spellings etc; in a flare and it takes too much effoert to go back and correct everything - know how to do it right really - honest:) (At least I think I do - whenI'm NOT flaring).

    All the best and come back often
    Hugs
    Ruth
  14. CHRIS(uk)

    CHRIS(uk) New Member

    Hi,

    Sorry you have had to join us here!

    I'm 28 and was d'x with CFS in 99, although managed to carry on working until 2001 when i hit rock bottom. I'm not sure whether it was a good idea to continue working when my body was crying out 'stop' but I felt that I couldn't give in.

    I went through similar problems with GP's, being referred as an outpatient for numerous tests until finally getting a diagnosis 1 year later. I feared I had ME, (as I have a relative who has suffered with this for some time & knew the symptoms), but I was really hoping it would be something else. In fact, I think i was probably labelled as a hypochondriact as I would focus on symptoms that could lead to a different diagnosis (e.g lyme, thyroid etc)

    I'm getting better, though still not ready to work. I now have an good GP - he's understanding, but obviously not an ME expert. I saw Dr Hyams for a year, but haven't seen him since Jan this year. To be honest, from reading this board, the so called guru's seem to be excellent at bringing around dramatic improvements for those who are unlucky enough to be seriously debilitated by the illness, but i only noticed a mild improvement, despite trying various injections & supplements. I still take the prescribed supplements though. I found I was losing interest with seeing a specialist, my hopes were being raised and my wallett severely battered!

    However, I would reccomend Dr Hyams.


    There seems to be a lot of UK peeps here, is there anywhere dedicated to UK ME/CFS where we can chat? I know this board is great, its just there is so many posts, its difficult to find the ones local to us.

    Bye for now

    Chris



  15. nell-UK

    nell-UK New Member

    Hi Chris, it's nice to see you again. I don't post on here much now but I have been looking in the archives and noticed you saw Raymond Perrin? I have an appointment with him at the end of Septemebr, did it help you at all?

    I am also not seeing Dr Hyams anymore, purely because I am so sensitive to everything that I couldn't do or take anything he wanted to give me. I would loke to chat to you about your experience with Raymond Perrin, could you e-mail me please (only if you want to...lol), my address is nell_UK2002@yahoo.com.

    There is another board called smartgroups message UK, if you put that into Google you will find it , that is English, I also know of a couple of other good ones on Yahoo but can't post them here, e-mail me and I'll give them to you.

    Take care...

    Nell.

    PS Hi Barb :)
    [This Message was Edited on 09/13/2003]
  16. CHRIS(uk)

    CHRIS(uk) New Member

    Hope you are both well (or as well as can be expected)

    The reason I mentioned the UK board is that if we really want to discuss things, posting on this board (great though it is!) is a very longwinded way of going about it.

    Barb, I have my Hyams files here. V/difficult to say what worked what didn't - love to chat about it though.

    Nell, I saw someone someone who performed the (forgotton his name now - Raymond/Reggie Perrin?) excercises and had worked with him previously. My initial response is that it is unlikely to do any harm, and it is relatively inexpensive. The problem I have is that all these theories seem plausible.
    Did it cure me? NO
    Did it make me feel any better? Well definitely not worse!
    Is it painful? I actually quite enjoyed it!

    My e-mail is charri42@totalise.co.uk

    I would send you an e-mail Nell, but I think its probably best to chat direct online so I can give you the info you really want - It would also be nice to get to know some UK peeps better.

    Do either of you have Yahoo chat? / messenger?

    I have a Yahoo chat handle - 'charri42'

    Maybe if we arrange a suitable time, we could have a regular weekly chat for us UK folk to discuss docs etc. I think its quite easy to create a chat room on an adhoc basis.

    Bye for now

    PS - updated my profile, so you can see who you are talking to

    PPS - also be interested to know what supplements (the expensive ones) people in the UK are taking. I thought about organising a bulk buy at discounted prices.
  17. nickname

    nickname New Member

    ....I'm from the South East, (actually I just took a squint at your profile Chris-uk and saw you used to live in my home town of Brentwood) and am patient of Dr Hyams too. Not posting here much lately, because have been too ill to do so.

    Nell-uk - so good to make contact again. I too was very interested in the work of Raymond Perrin - you know how bad I am, and that was yet another avenue that I tried to pursue. Obviously could'nt see him personally as too far for me to travel, but he is interested in working with other specialists all over the country so as to widen the use of his protocol.

    I got together with someone local who had been at University with Perrin and who was training to use his protocol. Upshot was I could not continue because yet again manipulation in any form laid me out flat exhausted the three time he came here. Would have loved to continue with it, because I believe totally in it. I have a spinal fusion on the lower lumber, and spondylitis and curvature of the spine in my neck, so I reckon it all plays its part.

    Barb - have u ever looked into Dr Jean Munro at the Breakspear to deal with your MCS?

    Will come here when I can.

    best wishes
    nickname
    [This Message was Edited on 09/13/2003]
  18. CHRIS(uk)

    CHRIS(uk) New Member

    Sorry to hear you've been so unwell,

    I enjoyed my time in Brentwood, I lived in Hutton Mount for a year, just near Shenfield station.

    I can imagine the Perrin treatment is quite physically demanding. It was OK with me, But I guess I am quite 'lucky', as ME hasn't affected me as badly as many people. I suffer from feeling groggy, sometimes flu like, achy, lethargic etc - this varies, and sometimes I feel quite normal. When I 'crash' it usually lasts a week or so, I still have energy to move around the house, but feel generally very crappy.

    Have you both got the Perrin protocol handbook (available from one of the charity / support groups - can't remember which) I seem to remember he was based at Manchester Uni (poss Metro Uni in Manchester) I haven't got it to hand, but seem to remember the theory of blockages in the lymphatic glands seems very plausible, but then again many of these 'theories' seem to be logically concluded. The specialist osteopath who I saw seemed very clued up and had worked with Perrin previously. She had the advantage of being cheap! @ £15 for half hour session - but obviously way to far for you and Nell (Manchester). It may be worth seeing Perrin initially, but maybe he is very pricey for ongoing treatment????

    I'm sure any decent osteopath could perform the exercises.

    Hope you're feeling a bit better soon.

    Chris

  19. nickname

    nickname New Member

    ....just had another thought re bulk buying of supplements. I personally think this might be a bit too awkward to set up plus we'd still have to pay UK postage from a central point, but how about sharing supplier information? I generally hunt round to find the best possible price. (I was a buyer by profession, so old habits die hard!!)

    I use the: Nutricentre and get 25% off as a ME Assoc member. IP Graham gives 30% off all Lamberts supps for any quantity. There are others in the ME mags that give generous discounts, but I think there are minimum orders.

    I sometimes buy from the States where it is hugely cheaper, and thankfully have not yet been clobbered with import tax. If I can get it in the UK, I will trial it first and then if I am going to continue, I will then source it in the USA.

    ProhGH was the most expensive UK supp at £145 per box from Dr H's Guernsey pharmacy, but I sourced this from another UK supplier at half that cost. Unfortunatley, they have now discontinued the brand I wanted, so am just about to order this from the States at $135 for 2 boxes (plus $24 shipping) - huge difference eh!

    Sorry, I don't have the Perrin handbook, and I think you are right about Manchester Uni. £15 was very cheap - my chap charged £45 per session for laying me out 3 times!!!!!

    Best wishes
    nickname



    [This Message was Edited on 09/13/2003]
  20. CHRIS(uk)

    CHRIS(uk) New Member

    Guess we're both up late!

    Coincidence, I'm (was) a buyer to. One time at that American Motor Giant not too far from your home town.

    I use Nutri, but didn't know about the discounts available.

    I once had to source from Guernsey when with Hyams (mainly for injections) & didn't realise i could find this elsewhere. The ones that hammer me at the moment are

    Immune Pro RX Whey Protein - c. £40-£50 per tub from Nutri, slightly cheaper from E-Revital online (think they're in London)
    &
    TTP Digest - about £40 for 60 capsules, at 3 a day works out quite a lot.

    I would be grateful if you let me have the info re. discounts from various suppliers. I was thinking of getting a price on c. 200 tubs of whey protein direct from the US. As far as import duties were concerned, I was seeing what i could get away with! (do you know the rate of nutritional supplements?)

    If you have the energy, i would really appreciate an e-mail with what your research has uncovered re. discounts. I'd prefer to spend £200 per month on something else!

    Thanks, Chris

    charri42@totalise.co.uk



[ advertisement ]