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22 Replies
englishrose - April 30

Hi guys just wanted to say hello to you all..New here but have been reading some of your posts and like most of you i suffer daily the symptoms of fms and was diagnosed almost 2 years ago after many hospital visits to find out what was matter with me ..Can i just ask are you all americans as i'm from the uk ..

 

Noca - April 30

Welcome to the forum! I'm from Ontario, Canada.

 

englishrose - April 30

Thanks for the welcome Noca

 

ptalana - April 30

Hi englishrose and welcome to our fibro family, I like Noca reside in Ontario Canada. I was also diagnosed with Fms two years ago, following a work accident. I hope that you find this forum as supportive and informative as I have. There are so many fellow sufferers here who not only offer medical info, but help in handling the emotional side effects that we all experience.
Looking forward to getting to know you, Patty

 

fibromite.u.k. - April 30

Hi englishrose, I am also from England and only joined the forum earlier this month. Everyone on it seems really friendly. I hope you are getting the help you need, as I don't think doctors over here seem to know so much about fibro as in the U.S. Even when they do, they don't really seem to know what to do for us. Whereabouts in England are you? as there are some good fibro groups about. I live in the east midlands and go to a very active and friendly group which has helped me a lot.

 

Fantod - April 30

englishrose - Welcome to the group! I'm Canadian living in the USA.

 

englishrose - April 30

Hey Ptalana thank for your response..Sorry to hear your a fellow sufferer would not wish this on anyone..I find comfort in the thought there are others out there with some of the same symptoms as myself makes me think i'm not crazy after all..Looking forward to getting to know you too Patty..Wishing you all the best Maria

 

englishrose - April 30

Hey fibfomite.u.k nice to hear from you..Seems you have had much the same response from doctors as i have here in the UK not great is it ..The US certainly seems to lead the way..I'v not had much in the way of help to be honest but have been looking for some kind of group to join for a little support.. Have you tried anything that works well for you? I live between Halifax and Leeds..

 

englishrose - April 30

Hi Fantod thanks for the welcome

 

kentucky girl - May 1

Welcome to the forum englishrose. I am also relatively new to the forum, but like you have been reading the posts for some time. I have learned so much from the participants here and hope to be able to share info that may be helpful to some. We are here for the support this forum gives us. Hope you find the info and support useful for you.

Again welcome!

Kentucky girl

 

powderblue - May 1

Hi Englishrose

I'm from New Zealand but my mother is British and my brother lives in Southhamptom. I think most of the people on this forum are from America but there are a few from other countries. Different things work for different people and it is often confusing when there is so much information out there and false promises of cures from companies that want to make money out of people with this condition. Hope you can find a doctor that takes an interest in fibromyalgia and get some useful suggestions off this forum as you'll probably learn just as much (if not more) from the fibromyalgia communinity :-)

 

englishrose - May 4

Thanks Kentucky girl for the warm welcome ..nice that so many take time out to help fellow sufferers..your so right about the ammount of information you can get on here.I'v learnt so much more already ..Thanks everyone

 

englishrose - May 4

Hey powerblue thanks for the reply.. Its true everyone here seems so well informed and it really does help me to understand it the more i read here.. good wishes to everyone

 

Suzi R - May 4

Hi, iam a new member too...and iam from the Uk. i have recently been diagnosed. I'am still waiting for help with the pain, which is constant, and claim from DLA...as i have had to stop working, as i cannot walk far now. So hi to you all XXX

 

englishrose - May 4

Hi Suzi R sorry to hear your joining an ever growing club of sufferers.. I know just what your going through i'm getting nowhere near being sorted out either sad to say..I dont think they know enough about it here in the UK ..Good luck with your quest and hope things improve for you very soon.. :)

 

fibromite.u.k. - May 4

Hi again Englishrose, sorry I have taken a while to answer your question. If you look at the website info at fibropals dot co dot uk there is a list of groups and hopefully there might be one that you would be able to get to. You asked me what I take. I take tramodol first thing in the morning when the pain and stiffness are at their worst, and then if it is a particularly bad day, I take more of them later in the day. I also take pregabalin (Lyrica) and this is very good for helping with pain. Before I was on it, the pain was so bad that I was walking aound on walking sticks and crying with pain. I was told I could take up to 300mg a day, however, they do make me very tired, so I keep the level I take down to the lowest I can. I take 75mg at night (when it doesn't matter if it makes me tired) and then 50mg in the morning. When my pain gets very bad I have occasionally tried upping them, but I am so tired that I am asleep all the time, so have to cut them back again. I had a nasty experience with the drug gabapentin just over two years ago. I was put on them for pain, before I was given the pregabalin. At first they seemed like a wonder drug as the pain was almost gone. However, after about three months, I became so tired and drowsy that I didn't feel able to cope with anything and certainly wouldn't have trusted myself to go across a road etc. So after five months I decided to come off it, unfortunately, I had no idea that you have to come off it very gradually, and so just stopped it. I had the most terrible withdrawal effect, shaking uncontrollably and what felt like the worst restless legs possible. This happened over a weekend and on the Monday the feeling had eased, but I visited my doctor. She told me that I should not have come off them like that and I was having cold turkey, however, since I was almost over those effects, I just stayed off them and by the next day, I was ok. So I imagine that if you came of pregabalin as quickly, the same thing would happen, so I am just warning you of that. I would say, to certainly ask you doctor if you can try pregabalin. Wishing you a good and pain free day.

 

kentucky girl - May 4

Welcome Suzi R.! I am relatively new here too. I think you will find that being new doesn't matter. Everyone welcomes you with open arms. Hope you find the support and information that you need to better cope with FMS.

Again, welcome.

Kentucky girl

 

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