New member, Question about England?

Discussion in 'Fibromyalgia Main Forum' started by foodisyummy, Mar 15, 2006.

  1. foodisyummy

    foodisyummy New Member

    Hello,

    I'm a new member to this forum, and I'm so glad I've found it! It's always such a great feeling when you find people who can understand what you're going through, when no one else understands. When I go to FMS forums and read other people's experiences, I am always surprised and think, "That's me!!", even down to the smallest detail.

    I am 20, and I got FMS/CFS right before college. This was devastating, especially because I had to head to college that coming fall and I had never dealt with a chronic illness. This debilitation was and is very hard for me because it prevents me from doing the simplest things and I am so young.

    Up until i got FMS i have been ambitious, interested in many things, and outstanding in a lot of things. I have been really really motivated. I have been a very successful musician and i have been the top student. I did so many things and was so healthy.

    However, this has all gone downhill. The FMS symptoms of widespread muscular pain (of all types), fatigue, muscle spasms the list goes on and on, have reduced me to not being able to do the simplest things. The summer before college was terrible. I could not even get out of bed.

    I went into college in a bad condition. It has been hard at college, with lots of pain. Having been able to pursue my ambitions and passions before and being outstanding, I now have difficulty doing the simplest things such as walking to class, carrying my books, or sitting for more than 30 minutes and so far, i have been in school working hard just to stay afloat.

    I've given up the extracurriculars i have always enjoyed before (music). It is physically impossible to play the instrument :( I can't write or use my arms now either. On top of FMS, i have RSI in my arms.

    It's especially during the flare ups that i have so much difficulty. No one here understands- which is understandable because they themselves have not experienced FMS. I often reflect back to my "old" days 2 years ago when i was perfectly healthy. My college experience so far has been tough because of my health.

    FMS has debilitated me so much. However, it has always been my dream to study abroad, and I got into the study abroad program in UK i've always wanted. I have to decide whether i should go and im having so much difficulty deciding because i can't predict what my health will be like. There is no basis on which I can make my decision. It's scary!

    Even here at school, i am having trouble keeping up and suffer so much during flare ups, which come really frequently. I feel like a slacker because before I'd be so enthusiastic and motivated to do work, now just the effort of looking for a pencil may seem like a battle.

    I can only imagine it'll be so much worse in a foreign country where I know the accomodations are not as good as here. For example, although i live a floor above the laundry facilities, its hard to do laundry- however there, they dont even have washing machines in dorms. Here, i live really central to campus. There, dorms are far and walking is required all day. The list goes on...

    I feel like so much is going to waste because of FMS. Me two years ago and me now? Completely different. Thanks for letting me vent and thanks for understanding :) Only people who are experiencing this too can really understand. Anyone have any suggestions?

    In particular, to the Brits out there, how is FMS/CFS awareness in England, relative to the US?
  2. Cromwell

    Cromwell New Member

    You need to post to Prickles who is a student in UK. I am familiar with two USA schools in London, one is Ithaca College and the other TASIS and also Emerson College(Waldorf).

    I am a Brit living in the USA,

    Life is very different there for sure. There is a lot of binge drinking with students and all young people. As for laundry facilities, well there are Laundromats (called Laundrettes there) A lot of student go home every couple of weeks and lug their laundry home. Many students live in student "digs" these tend to be what you wouyld call rooming houses here. Some "digs" actually you live with a family and have your own room. I think most American schools you live on campus(there).

    Would you care to let me know what part of the UK it is, as I know a few Universities and some have nice dorms. My SIL taught at TASIS and Ithaca College in London. Used to be reciprocal medical for USA people in England but I think you may need your own insurance nowadays.

    Good luck.


    Anne C
    [This Message was Edited on 03/16/2006]
  3. KelB

    KelB New Member

    Hi there.

    I'm in the UK and sad to say, the UK is somewhat behind the USA in both recognition of, and treatment for, FMS/CFS.

    The National Health Service treats them as psychological conditions. There are still doctors who refuse to recognise that they exist as anything other than an elaborate form of hypochondria.

    The NHS only offers Cognitive Behavioural Therapy and/or Graded Exercise Therapy. Sometimes you can get lucky (like me) and find a centre that gives useful CBT, but a lot of people have had bad experiences with it. GET only seems to make people worse, but the medical establishment is a long way away from acknowledging this.

    There are some private FM/CFS centres, but again these can be patchy and you need to check their approach to treatment before booking an appointment.
  4. eeyoreblue02

    eeyoreblue02 Member

    Start a new thread with a title that says something similar to: Calling Prickles

    Prickles is a lovely young college student in the UK. She is full of good information and I'm sure she would be happy to help you if you only ask.

    Linda
  5. lenasvn

    lenasvn New Member

    to say this, but I LOVE Brits! My nose is turning so brown,,,LOL! No, but let me say "hie" anywho, I am a Swede living in Washington State and wish to say "Welcome to the board"!
  6. foodisyummy

    foodisyummy New Member

    Hello,

    Thanks so much for your support! :) I really appreciate it!

    Wow, Prickles, we have seem to have much in common! Is it possible to message you or e-mail you with more specific questions?

    I'm sort of discouraged by the fact that FMS awareness is much behind than the US in the UK, and how it is labeled as a psychological condition. I mean, I thought even US is lacking in awareness! I have been to countless doctors here, specialists, and when I mention FMS, they seem to dismiss it as a "non-existant" thing. It's such a terrible feeling when you're in so much agony!

    Does that mean, when I inform people at the university about my condition, that they will not take it as seriously as they should?

    Thanks :) God bless!

    Most Affectionately,

    Foodisyummy (I should have chosen a less ridiculous screenname, lol)
  7. smiffy79

    smiffy79 New Member

    i too am from the uk. unfortunatly awareness is still pretty hit and miss for fm and m.e.
    i have been very lucky in that i have a good gp who goes out of his way to gain knowledge on fm and takes on board everything i give him.

    we do have fms clinics in london, bristol, cardiff and newport with a network of supportgroups. i subscribe to FaMily magazine a mag dedicated to the awareness of m.e and fm and i think fmaware produce one.

    we also have a national helpline run and manned by fm/me sufferers. college services are getting better here and fm is getting better recognised by the day.

    i think you should email for college and uni perspectus and those you like email back about disability services they might have.do some research it might not be as bad as you think.
    incedently i will soon be attending a college course i will pay for myself and the head phoned me in person to chat to me, anything i need or want changing to help she will accomodate me as much as she can.

    goodluck in this i hope you find whats right for you, xx
  8. Cromwell

    Cromwell New Member

    In UK makes a difference. Some places have good FM (they call it ME too there) awareness, doctros and clinics, and a lot of help, as posters here on other threads have said. They even have a magazine.

    To be honest,here, I live in a New York, progressive community that barely acknowledges FM at all, there is nothing zilch and no interest, as many people in the USA will testify. When I lived in a little village in the UK I was treated very well with the doctor coming out to our farm on house calls etc. All free. Well one pays a contribution but it is low.

    Until you live in both countries it is hard to judge. Personally, despite my $5,000 pa health insurance here,that also has deductables, I feel I get terrible doctors in the main and yet when I lived in the UK I thought the doctors and nurses were really good in many respects as they were not in it for the money but for the love. I know this has changed a fair bit, due to funding, but I think that the NHS is pretty good really, considering the lack of funding in the 1980's and early 90's, they are having to make up a lot of that plus no one wants top pay for NHS contribution.

    Also, Brits only just started having to pay for Uni tuition last year, and it is really low, like three thousand pounds a year. Mine there was free plus I got a grant that covered all my expenses(some years back). I was so shocked that even a State University here is now on average $18,000 pa for tuition.

    So one has to actually live both places to know. My sister is always writing to me and griping on about the UK but she has no idea what it is like NOT living in a welfare state....she is currently mad about water meters maybe being introduced, and I write and say we had them for years here. So I think you will do fine. As a Brit I think we tend to err on the side of being a little eccentric but rather nice, polite folk, in the main. Get a list of foods though!!! Prickles will be a great resource.

    Love Anne C....Hey Prickles I had to laugh that you said Keele was very, very cold, it gets to loads below zero here, even Inverness is not cold compared to a great deal of the USA. I don't know where foodisyummy lives in the USA, but I was shocked when I came to live in the USA and it was so bl......y cold and then so bl.....y hot.(LOL)
  9. shanwill

    shanwill Member

    Hey there,
    I'm a Canadian, who - up till I came down with CFS/ME was living and working in England (London). What I think you really need to think about - in your current situation - is the fact you will have no friends or family there, the country is completly different from North America and will take a lot of time to get adjusted to. And the cost of living is very high. Hence why I returned to Canada.

    If I was you, I would try and get my health under control here first, and use the UK as your incentive, or dream for the future. You are still young and have time.

    When I first became ill there I went to the doctors right away and they really didn't have anything helpful to give me, so I wouldn't bank on the UK being more advanced or able to cure you unfortunately. You would maybe have better luck here with the clinics that specialize.

    If you have any more questions - I'm happy to help.
    Shannon
  10. foodisyummy

    foodisyummy New Member

    Hi Shannon!

    How are you?

    I'd like to ask you some more specific questions, but I was wondering if there was any way to message you or email you?

    Thanks!
  11. shanwill

    shanwill Member

    hi again.
    i don't think we can give out our email address's - they edit them out i believe (?)
    you could always post it here and i'll reply to you.

    let me know.
    :)
  12. foodisyummy

    foodisyummy New Member

    Hi Shannon,

    The thing is, even the US, I don't have a doctor who I can go to seek a cure or treatment. To tell you the truth, I've been to countless number of specialists, none of which who I have found to be knowledgeable or sympathetic with FMS. Instead of accepting the analgesics, anti-depressants, anti-inflammatories that they dished out to me, I decided to seek supplements and alternative medicine (such as chinese medicine). I have still yet to find a good doctor who understands FMS.

    In the UK, I'm hoping to find a physician who understands FMS and a general population who is receptive to it and willing to accomodate/help out in response to the condition. However, I'm not expecting a treatment of sorts as I haven't even been able to find one here! I'm a little discouraged by the fact that they consider FMS a psychological disorder, however. I've encounted such frustrations when doctors, and even loved ones, tell you to "put your mind to it and mentally overcome it", or "calm down", because as you probably well understand, FMS is a scary, physical syndrome like any other physiological disorder.

    In terms of a specific question, how might the damp, cool weather in UK affect FMS flareups? Also, how are disabilities accepted/accomodated in the UK compared to the states?

    Thanks!

  13. shanwill

    shanwill Member

    firstly, i understand the frustrations all too well. unfortunately you will be met by the same opinions, treatments (meds for depression, muscle pain etc) in the UK medical field. from what i understand about FM the best thing is to pace all your activities, not over do or under do.....funny balance to find when you used to be so fit right? i have CFS but it seems the same principles apply.

    now as for the weather, they're just isn't any getting around it - it sucks - big time!!! (sorry brits;) but it rains year round and is often grey and cloudy when it's not rainy so full days of sunshine day after day are not the norm. i find the weather a HUGE impact of my symptoms, defiantly worse in the rain...more aches etc.

    as for disablity, i would suspect you'd be considered a foreigner which means you wouldn't have access to these benefits and have to pay - thru the nose!

    i know you have to pay in the US for medical care and in the UK you have coverage to see doctors, but that would depend on your Visa. not to mention, to see specialists there are huge waiting lists. to go to the UK for better treatment i would say is not advisable, i fear you'd be disappointed, more stressed, thus worse symptoms.

    i know this illness sucks, but don't give up. search around the board to see if there is any advice people have for FM supplements etc.

    it's a journey my friend. but i'm still not giving up hope!

    ps - where are you in the states?
    hope this helps some,
    shan
  14. foodisyummy

    foodisyummy New Member

    Hi Prickles,

    Good to hear from you. I'd love to be able to email or msg you to discuss the details, if that's okay with you!

    Are you, perhaps, a member of www.fibromyalgia.md? Through that, you can send private messages. Please let me know if you are-or if you join- and perhaps in a couple of days (I have exams, yuck) we can correspond?

    Please let me know.

    Best,
  15. becc

    becc New Member

    Hi foodisyummy :)

    I'm in Australia and have had pretty severe ME/CFS & FMS for about 11 years. I've been studying part-time for the past 5 years and have just about finished my degree now. In 2003-04, I did a one year exchange programme in England, just outside London.

    If you think there's any way you'd be able to study in the UK, I'd say go for it. It was the greatest experience I've ever had. I, too, had always wanted to study abroad and while doing it with ME/FMS was hardly ideal, I'm so glad I'm able to say I've done it. It's certainly hard - just studying with ME/FMS is difficult enough and when you add living in another country to it, the idea can be quite overwhelming. Honestly, before I left, I thought I'd be home again within 3 months. But I managed to keep going by not pushing my body to do things I knew it couldn't - that's one of the more frustrating parts of studying overseas with ME/FMS. Other friends on exchange with me quite often went away for the weekends and would go into London a couple of times a week to shop and do tourist-y things. I did everything I was able to do but didn't force myself to keep up with them. The UK, Australia, the US etc are really all very similar so there won't be a huge culture shock when you first arrive.

    Overall, knowledge and acceptance of ME & FMS is behind Australia and the US but it was my impression that this was due more to a small and *very* vocal group of psychiatrists rather than a general disbelief in the conditions. If you can find doctors who believe in FMS and are prepared to treat you properly - don't take part in Graded Exercise Therapy programmes, for example - I found little difference between the care I received there and that I receive in Australia. Doctors are more conservative, perhaps, and not as willing to try experimental treatments as in Australia. But there are definitely doctors who consider ME & FMS to be serious medical conditions and will treat them as such.

    You'll need to take letters from your doctors at home, outlining any treatments you're currently on and stating that they need to be continued while you're in the UK. I would also take copies of results for any recent tests you've had done. My doctor was based on the university campus so it was very easy to see him whenever I needed to. He ended up sending me to a rheumatologist at a nearby hospital as he needed a second doctor to authorise my medications and he wanted to have me checked for other illnesses. So while I didn't come away from my year in the UK with any advances in my treatments, I didn't have too much trouble maintaining the level I had reached in Australia.

    It might be a good idea to find out who the campus doctor is and contact him/her before you leave to explain your situation and confirm that they will be willing to continue your treatments.

    I was eligible for the NHS as I was living in the UK for more than 6 months. You will hopefully be eligible for this also - doctor's appointments are free and medications are about £6, I think. There are positive and negative aspects of all systems, of course, but universal healthcare as in the UK and Australia is very effective. And if you're not happy with your NHS doctor, you can go to a private FMS specialist.

    Wow, this is long but I hope it helps a bit :)

    Feel free to ask any questions!

    Take care,

    Bec