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Date: 23.02.2011
From: Loz Reed

Subject: Rheumatoid Arthritis and Fibromyalgia

Hi all, i have had ra for the last 6 years and am on Humira injections every fortnight and Lefluedamide which have stopped some of the pain, but have just been diagnosed with fibromyalgia (all probably spelt wrong) which is muscle and ligament pain which is just as bad as the arthritis but there is no cure just take paracetamol and anti inflams just cant win, you get something bad then something worse follows, is anyone else going through something like this as need a chat with anyone. Feeling really fed up. loz x
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Date: 23.02.2011
From: dolly

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

hi loz reed. i've had RA for 41 yrs, and fibromyalgia for quite a few yrs also. the specialist just recently diagnosed the fibro a few months ago but said he thought that i've had it for years. and yes it's just added more pain and more problems. alot of the time i try and i mean i have to try very hard to do things by mind over matter. if i didn't i would not get much done or go anywhere. i'm also on humira and have been for about 4 or 5 yrs. im on ant-inflamatories and pain relievers too. feel free to ask any questions. take care now
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Date: 23.02.2011
From: KayJay

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Hi Loz I was the other way round I started with Osteoarthritis then Fibromyalgia about 3 years ago then recently MISdiagnosed with Inflammatory Arthritis !! Even took Hydroxy for nearly a year for IA uneccesarily!!. Had an Isotope scan which shown the Osteo and the Rheumie has discharged me with no further meds for the Osteo or Fibromyalgia. I have to be honest and say the Fibro pain is never ending ie you ALWAYS hurt somewhere in the body. I get sick to the point of suicidal sometimes as it never lets up. And the tiredness makes me feel about 80 years old !!I take strong Codeine but it never gets rid of the niddling, sharp, shooting and burning skin pain that is there more usually at night. It's like you are randomly being stuck with needles. I was very disappointed to be told there is no meds for Fibro in other words just live with it. I'm on Amytriptylene from the GP and that has improved the neck pain but now I find I can't stand even for small periods of time as my legs just feel like they are going to give way and my hips are extremely painful. Sorry to moan but I have to sort this out I go to see the GP next week but don't have any faith anymore in Rheumies at all. Even though they say you dont get swelling fingers etc with Fibro - you do - mine do it all the time.
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Date: 23.02.2011
From: KayJay

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Well Loz + Dolly have been researching Fibromyalgia meds and come across some that are used for it !! Now I'm even angrier with my Rheumie than before - talk about a big fibber !! [ or is it because I'm too old at 57 to have money spent on me for NHS meds??? ] The Meds mentioned are : Gabapentin, Lyrica, Elavil [ to name but a few ]. So I'm going armed to the GP's with this info next week and see what she says. Have also found a Fibromyalgia UK Forum here is the link:

http://www.ukfibromyalgia.com/forums/viewtopic.php?f=7&t=50&start=30

Will update this link when I've seen my GP.
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Date: 23.02.2011
From: Lynn B

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

HI kayjay, I am sorry you are so down.. hey come on it used to be you that bucked me up, and got me to carry on. you sound so down at the moment, dont wont to intrude, but you are worrying me a bit are you ok? I have PA as you know but god please help me I know what you mean about the hips!!! The pain is awfull with the burning in the groin, thigh, and knee, then the constant pain and ache. I do feel for you I have been told I have to use a walking stick to help, I my self DO not Believe In Rheumies, My daughter has fibro and she has swollen fingers and hands. I realy hope your GP can help you in some way. SO Sorry you feel so bad it might be a bit of a cliche but hey I am here and will listen, please dont feel so sad... xx Take Care
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Date: 23.02.2011
From: KayJay

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Hey Lynn B thanks ;0) but don't worry luv I've come round from earlier it's just that when they say there is no meds available and then you find out there is well !! I could swear but won't ....... Anyway my 3 kids visited me tonight and they are the best tonic ever for a Mum !! Sorry to hear about your daughter and you having to use a stick. Don't worry about that as well you soon get used to it and it does help.

Thank you so much for talking to me Lynn hope you have a pain free night xx
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Date: 23.02.2011
From: dolly

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

loz i forgot to mention that i was given amatriptyline for my fibromyalgia. i take only 10 mg every night. i was having problems falling asleep because of pain. it would take me anywhere from 2 to 3 hours to fall asleep then when i would roll over to change position i would wake up from the pain. since i've been on the amatriptyline i get anywhere from 6 to 8 hours sleep now and that part is great. the first 3 weeks i woke up a little "groggy" but now 2 months later i dont wake up that way any more and still get a good night sleep. amatriptyline in small doses is used for fibro and in high doses 50 to 100 mg for depression.
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Date: 23.02.2011
From: Lynn B

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Hey Kayjay, know what you mean about the kids, I also have 3 and they are a god send... Glad your feeling a bit better, Dont want to be a pain in the beeps!! But Dont be a stranger.. ok Take Care. xx
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Date: 24.02.2011
From: KayJay

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Thanks Lynn ;0) Went to the Mobility Centre today for my new ankle brace - got back and fell asleep for 2 hours !! It just wiped me out. Thank goodness the sunshine is back - well here in sunny Sheffield anyway lol xx
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Date: 25.02.2011
From: lozreed

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Thanks everyone its nice to know there are friends around that are in the same position as me and i can talk to someone...xx
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Date: 28.02.2011
From: KayJay

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

Well the Rheumie was wrong about other meds avaiable other than Amytriptyline for Fibro !! The GP has prescribed me Gabapentin today for it !! And some more Physio for the wasted muscle on my left leg.
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Date: 28.02.2011
From: JOANNA SALMON

Subject: Re: Rheumatoid Arthritis and Fibromyalgia

I AM A STUDENT PARAMEDIC CURRENTLY STUDYING AT WORCESTER UNI. I AM LOOKNIG FOR A WILLING PARTICIPANT TO HELP ME WITH MY CHOSEN PROJECT "RHEUMATOID ARTHRITIS". I AM WRITING A BROCHURE/BOOKLET ON THE SUBJECT AND I NEED A WILLING PARTICIPANT THAT I COULD INTERVIEW. I WOULD BE ASKING A NUMBER OF QUESTIONS REGARDING YOUR DISEASE. YOU WOULD FEATURE IN MY BOOKLET. I HAVE TO HAVE AN INDIVIDUALS VIEWPOINT ON THE SUBJECT. I COULD EITHER DO THE INTERVIEW VIA E MAIL, MSN, OR PHONE. HOWEVER I WILL REQUIRE CONSENT FROM YOU TO PUBLISH YOUR INFORMATION. MAY BE A PHOTO.
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