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Date: 03.01.2011
From: daniel

Subject: newby living alone and confused

hey their ive be diganosed with a spondyloarthritis 8months ago and have been on sulfasalzine for 6 and all sorts of other anti-inflamitories too, non of which seem to do anything. my rheumy has given me methatrexate but i am reluctant to take such an aggressive drug,ive read stories of hair falling out,sickness etc. im only young 25 and guess i just dont believe whats happening to me i live on my own and cant do anything i enjoyed previously in my former life. i just cant relate this to anybody and find myself on here.
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Date: 03.01.2011
From: kylee

Subject: Re: newby living alone and confused

hii daniel i am 24 yrs old and found out i had ra 5 yrs ago i understand how you must be feeling as i couldnt believe it when i was dignosed. regarding methatrexate its not as bad as it sounds as side effects to ffect every body my only side affect was headachs but came of the drug 10 weeks afer starting it as it was not inproving the swelling pain or making any difference to my bloods. me and my rhummy have always been more concerned about long term affects regarding the drugs as what ever drug he finds for me that works isnt gonna be used for a few years its going to be part of my life for mant many years to come so we need to look at any damage these drugs could have regarding health in the future maybe you should also have this chat with your rhummy. i m currently on the anti tnf enbrol injections once week and also take laflunomide every day which asnt had any side affects been on them over a year now.
im affraid with arthritis and the drugs its just gonna be trial an error some will work somw wont you will have side affects with some and not others.the thing i have learnt is these side affects dissapear dissapear once you stop the meds so i dnt worry myself over them any more.
you will find ways to cope and adapt to not a different lifestyle but you will manage yourold one for example i love my horses to bits loved to jump used to ride most days but cant manage that now dnt ride as often as id like but i still love being round them so i just spend time with them rather than ride which i am greatful as id rather have the injoyment in my life than not have it there at all. hope my rambling has been of some help to you
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Date: 03.01.2011
From: katknapp

Subject: Re: newby living alone and confused

Hi Daniel,i have also been recently diagnosed with spondyloarthritis and im on sulfasalzine and im also on steroids,i have also felt they are not working although im not really sure what they are supposed to do completly no one has exactly explained it all to me i was just given a prescription and a leaflet and left to get on with it im not even fully sure what spondiloarthritis is,it is a struggle coming to terms with it all and realising that theres things you can no longer do and also that feeling of being alone im 42 well 43 in a few days but i dont know anyone my age that has this i always thought it was something you got when you were 60!!im here if you want to chat we can compare notes lol!!!
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Date: 03.01.2011
From: Daniel

Subject: Re: newby living alone and confused

thanks for the feedback guys..feels strangely comforting knowing there's people out their willing to take time to reply :)
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Date: 03.01.2011
From: Laura

Subject: Re: newby living alone and confused

Hey Daniel,

Keep your chin up, it's hard when you first get diagnosed and coming on here really helps :)

I got diagnosed with RA earlier this year, I'm only 24 so it was a bit of a shock considering I was really sporty too :( but you do learn to adapt n look at things differently!

This site really does cheer u up when u feel fed up cos ppl really do understand how u feel :)
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Date: 04.01.2011
From: Daniel

Subject: Re: newby living alone and confused

hey id really like to talk more to all you guys n galls is they a facebook page or instant chat type thing u lot go on???
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Date: 06.01.2011
From: Laura

Subject: Re: newby living alone and confused

Hi Daniel,

You can add me on Facebook if you like, it's Laura Wilson...my profile pic is me dressed as an Oompa Lumpa (the things we do on crazy holidays lol) so it shouldnt be too hard to find lol :)
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Date: 06.01.2011
From: x kerry x

Subject: Re: newby living alone and confused

hey guys, im 25 and have just been diagnosed with psoriatic arthritis, hyper mobility syndrome and tenosynovitis. I totally understand how you feel too, although i live with my partner and have the support of my family and friends, i struggle on a daily basis to cope, nobody understands the effort it takes me to do simple tasks, and alot of the time i feel people forget im poorley and not as strong as i was and expect me to be able to do everything i used to do. I just get so tired doing the smallest of things. Ive been on sulfasalazine for just over a week now and im finding that makes my fatigue much worse, along with making me feel dizzy and spaced out. Feel free to add me too, my name is kerry-lianne davison x
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