New girl form the uk,profile & pic

Discussion in 'Fibromyalgia Main Forum' started by Artyfarty, Jul 30, 2006.

  1. Artyfarty

    Artyfarty New Member

    Hi everyone, I'm newly diagnosed but have had chronic symptoms since I was 27 just had a Birthday, Saturday just gone now 35!

    I do,meditation, cds etc Reiki Healing, hot baths, vibrating back pad (life saver)
    I take multi vit iron, soy protein shakes, evening primrose, fish oils (cant function with out ) just tried Dong qui (Tang Kuei) for muscle cramps and spasms check out B4 you try as you cant take with aspirin but you should fully check out anything your going to take anyway.

    Just come across Holosync, centerpoint and tried their demo cd and when Iv'e managed to complete my benefits form (DLA in the uk) I'm going to give their meditation course a go but I thought I spend the energy typing this up for you guys.
    Has anyone tried Activive?

    I believe in positive solutions and that drugs have only sent me bonkers in the end.

    Supper tired today
    love N good health
    Arty Clare, Tunbridge Wells, Kent. England

    What a cool site! (thank you all)

    [This Message was Edited on 08/01/2006]
  2. NyroFan

    NyroFan New Member

    Arty:

    Welcome!

    You will surely get an education here and also have your questions answered. I usually check in once a day if I can.

    It would nice to see you here on a regular basis!


    nyrofan
  3. CockatooMom

    CockatooMom New Member

    Glad you found us! You will enjoy this website and all the people very much. I know I do. I have learned so much about myself and my ailments from the knowledgeable people on this board.

    Take care!
  4. gingercat77

    gingercat77 New Member

    Hi there! Great to find someone in the UK!!! Ive been ill for around 6 months now and have just been diagnosed with CFS. Ive been on this site for a week or so now, and everyone is absolutely brill, really supportive- just like a big family!!! The only drawback is that there aren't many folk from the UK and the american medications all have different names to the ones in the UK, so sometimes Im not sure what the equivalent is here.

    I'm actually in Northern Ireland!! Im 29 years old and to be really honest Im a wee bit scared as a result of this diagnosis!!! My family and friends don't really know what it's all about, and because I dont look like Im ill, they think Im ok..

    Can I ask you about your coping secret? What are your worst symptoms??

    I agree with you 100% about not stuffing yourself with drugs- my GP has tried to fob me off with everything from beta blockers to antidepressants, diazepam and everything in between! So Im now waiting to see a specialist- goodness knows how long that will take knowing the good old NHS!!!

    Anyways, thanks for your post, hope to hear more from you,

    best wishes
    Gingercat (Suzanne)
    Belfast
    N.I.

  5. Artyfarty

    Artyfarty New Member

    this is my first day so haven't figured out this site works, and how to get in touch with people and passing on e-mail address etc but I did see something posted about this.

    this is such I life saver, i'm so glad I put the computer on today.

    keep in touch
    Ta Ta for now
  6. Shelbyeatenton

    Shelbyeatenton New Member

    Welcome.... I hope you get all you need from this board and website. I know i have and some.

    I live in North West England, Blackpool. Not so sunny today. Rainy and cold and so feeling pretty bad today. :-(

    However... I am going away with my mum tomorrow to London for a few dews and so i can't be too sad. I am 24 and have FM and have been ill for 19 months.

    I agree with suzanne in that it's sometimes a little confusing with drug names but if you get confused just ask. There is ALWAYS someone who will know the answer.

    There has recently been a post about sending your email address privately through chat rooms. I can't remember the name of the post but you can search for things by typing what you're looking for in the search box above.

    Hope you enjoy yourself and find some friends,

    Look after yourself,

    Shelby
    xx
  7. deliarose

    deliarose New Member

    I'm also from the UK ....but I live in the states now..

    Anyhow, i finally seem to have found my road to recovery after more than 10 years with this bloody illness, and i'm so overjoyed i just want to scream about it.

    I had actually come on the site to post something about Xyrem.. but I saw your post..and thought I would drop in and give you my 2 cents worth.

    Like you, i had tried a fistful of medications with little to show for it. They're all symptom-management anyway.. so it's not like they offer lasting relief.

    Anyway, i'm rambling ... so cut a long story short ...the things that seem to be turning it around for me are Vit D and antioxidants, anti-virals and Xyrem, which is a relatively new and highly-controlled sleep medication.

    After 3 months on Vit D and antioxidants the "hit by a mack truck" fatigue was pretty much gone.

    I still felt a bit sluggish and I still had major cognitive problems, and it was at that point I went to see a new doctor.

    This doctor prescribed anti-virals (the Herpes drug Valtrex) even though my bloodwork did not show any current or active infection.
    My bloodwork showed prior EBV (Epstein Barr Virus) and CMV (cytomeglavirus)infection.

    Basically, I think he did it empirically.. I can trace my CFS back to an acute viral infection... tests show previous viral infections....the theory of stealth viruses suggests these viruses are chronic and reactivate...hence the anti-virals...

    Well, the fog and cognitiion problems began to lift in days. It was astonishing. It sounds cheesy, but it gave me back hope. I had begun to believe I was brain damaged.

    I finally started Xyrem this week (see the other Xyrem threads) and it's only been 2 days...but I can see a huge difference in my overall well-being already.

    Of course, the big question is are these improvements sustainable, and are they generalizable to you and other CFS sufferers?

    In my case, time will be the judge, but I would argue yes, because there are doctors and patients out there using the same treatment models and getting results.

    If you surf these boards, and search under Stormyskye, Elsa, and FFC, you will find feedback from some folks using similar treatment models who say they are improving, or in remission.

    FFC stands for Fibro and Fatigue Centers... a new line of private clinics here in the US specialising in the treatment of these diseases.

    There's been a fair amount of debate/controversy about these clinics on the board which you can research.

    I haven't been to one ...but I think the interesting thing (esp. for people overseas) is the protocols they are using.

    Basically, it seems to me, and you should probably check this with someone on teh board who has been to an FFC, they are using the protocols developed by researchers who believe CFS and to some extent fibro.. are the product of stealth infections (either viral or bacterial).

    The infections are often accompanied by hypercoagulation problems, and I'm not sure of cause and effect, but then you get hormone imbalances, sleep disturbances and oxidative stress among other things...

    Anyway, I don't want to blind you with science and some docs seem to think (includnig mine) that if you fix a couple of the major things.. give the body the right tools, it will heal the rest...

    And that's where Xyrem comes in..Xyrem gives you stage 3 +4 sleep,(or maybe just stage 4 ?),and that's when the body produces human growth hormone...which is critical for helping the body to do its repair work.

    I have taken various sleeping tablets and combos of sleep meds over teh last 6 years.. and while they helped enormously...I don't think I ever got refreshing sleep.

    A sleep study done while i was on sleep meds showed that I didn't get Stage IV sleep...hence my doc prescribed the Xyrem.

    Another woman Julieisfree.. says she was cured of/went into remission from her fibromyalgia of 15 years after 10 months on Xyrem. You can search under her name for her posts.

    I have found this board invaluable for feedback on certain drugs and supplements..their side effects and camaraderie etc.. but for the background on the various protocols out there I would recommend Ken Lassessen's Zero-Based Protocol for CFS.

    Just google it ... it should come up

    A bit technical, but just keep going back and reading it.

    I'm only at the begining of the end....but it feels like a good place to be if u know what I mean.

    Also, one caveat lastly, I know we are all different ..what works for me may not work for someone else.. but that's why it's important to understand the protocols.

    For example, some people seem to do better on an antibiotics protocol (not just any one ..the Garth Nicholson or Cecile Jadine protocols)...Maybe their bacterial infections are more dominant.

    Dunno....But I wish u teh best of luck.. ah and Ken has a sitte called "Cheap Help" ...what u can do if you're doctoring yourself on $100 a day .. or is it a week?

    Again google Ken Lassesen adn Cheap Help.

    All teh best
    Delia
  8. Cromwell

    Cromwell New Member

    welcome I live in USA but am UK citizen. You sound like you are doing neat things for the fm. Is it all working for you?

    My sister used to live in Kent Ashsomething-Ashington? Ashford?

    Love Anne Cromwell
  9. Smiffy

    Smiffy Member

    Hi Clare! Welcome to the board, I'm in Wiltshire.
  10. Artyfarty

    Artyfarty New Member

    yeah I had a kind of remission for about a year 1/2 but I have never been as well as pre 1998, I have collapsed lungs as well, which is not ment to be connected but when it all kicks off, it kicks off if you know what I mean.

    I've been sick since Feb this year and I've got people coming in doing the cooking etc and i'm managing to strain something about every other week, But my body knows how to be well and I can do it again, i'm feeling up beat having found this site.

    The thing is that when the benifits stopped B4 I took on more and more stoped Meditating and I just found that 2 days would come up and smack me at once, that and a very stressful past year (took my ex husband to court) basically the world moves to fast and I couldn't keep up and just couldn't relax my body enough for long enough, I think this fibro has gone to a new level because what was working is now not enough, its working because if I stop any of the oils I take I have a nose dive and I'm not taking an anti oxidant at the moment, which every one needs in my humble opinion.

    I fell asleep on a train once and ended up in ashford Probably early signs of FM fog & cfs.

    I have read your profile and Look forward to chatting to you again!

    love for now, Clare
  11. KelB

    KelB New Member

    Hi Claire, I'm in the UK as well, on the South Coast. Been ill for coming up to 2 years now, but have learned to cope better with the symptoms using techniques I was taught as part of my Cognitive Behavioural Therapy (an NHS course). It's by no means a cure, but it has given me back a measure of control over my life.

    I had a brief spell on a low-dose antidepressant to help me sleep, but my Occ Therapist wasn't keen so I dropped them. Didn't notice much difference either way! No other drugs have been offered, which I'm happy about.

    Keep us updated with how you're doing!

    All the best,
    Kel
  12. lenasvn

    lenasvn New Member

    I MUST say I love your "artyfarty" name!!

    Welcome to the board!

    I am not from UK, but Sweden, and live in Eastern Washington State. I intend to go back home by next year.

    I hope you'll enjoy it here.

    Lena
  13. kriket

    kriket New Member



    We had a post a while back for people to explain how they came up with their screen name. Hate to put you on the spot, but I just have to know. How did you come up with Artyfarty? I think your name is hilarious.

    Kriket
  14. Artyfarty

    Artyfarty New Member

    Thanks for your message, what part of the south coast do you come from.
    Yeah for the first time I did 3 days on amitriptyline wasn't to bad and did the the trick I strained my lumber driving the car and not very far, I wasn't sleeping and the pain was driving me nuts.

    My profile is up now I have put a pic of some work I made this year.

    I've had a couple of good nights so feel more human but I have had years of not sleeping properly and used to think it was my fault for some reason, Now I know why and it all makes sense.

    Lots of love Kel
    take care, type soon, Clare
  15. Artyfarty

    Artyfarty New Member

    Look at you, your drop dead gorgeous, their must be some statistics some where that say FM affects the most lovely of people?

    please tell me what is 5-htp?

    Love your profile, Draw with the other hand, failing that use feet or your mouth. Raising awareness, your doing it every day you choose to get up and fight for a better quality of life! Lets design T shirts.

    My profile is on now take a look.

    Take care be well and type soon.
    Clare
  16. Artyfarty

    Artyfarty New Member

    I think the fact you collect arrow head is very interesting! Do you have any photo's? I love the Celts they made some beautiful things.

    I have put my profile on now so take a look.

    Arty farty is about the kind of person I am and that I love making things. Does that answer your question? Might change it to Jung, Analiese that. Come on you have to tell me whats behind your name.

    Clare. x
  17. rockgor

    rockgor Well-Known Member

    Lots of nice people here.

    I looked at your profile. What is the picture? Some of your arts and crafts? Is it one of those 3D pictures w/ a hidden image?

    There seems to be a pretty strong UK/American connection here. My ancestors came from all over the British Isles to the New World. My granddaughter is a 12th generation American.

    I'm sure you'll find lots of help here.
  18. Artyfarty

    Artyfarty New Member

    Bless you thanks for message, its a poor photo but its lots of small prints mounted on mount board then glued to a canvas.

    I love Americans, I think every one on the message board should get together for a massive sleep over.

    Clare
    [This Message was Edited on 08/01/2006]