New to the forum: Hi everyone - I'm new to the forum... - NRAS

NRAS

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sarahsgirl profile image
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Hi everyone - I'm new to the forum but have been a member of NRAS for 15years. Diagnosed with RA in 2000 when the most popular treatment was the cocktail of Methotrexate, Sulfasalazine and Hydroxy..... I have to say they worked really well in keeping the flare ups at bay but the fatigue was the pits. The last five years have been the worst though after having shingles and for some reason I now have three days of nausea after my methotrexate - give me the fatigue any day!! RA is also a condition that leaves me feeling quite isolated on some days - people automatically assume that I won't be able to do a certain activity so I don't get invited!! In fact I can do all sorts on any one day knowing that I will feel as if I have been hit by a bus the next day so I plan my activities accordingly and life goes on - never say never!

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sarahsgirl profile image
sarahsgirl
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sylvi profile image
sylvi

I agree with all you have said and the fatigue is the hardest part of all thats wrong with me.There are days when i don't leave the house at all. Also i find it hard to go out at times. I could quite happily stay in my home and garden and not go out of the close i live in.xxxxx

sarahsgirl profile image
sarahsgirl in reply to sylvi

I did go through a really dark time like that and my husband was so worried that I was becoming a recluse so I made the effort just to go to the local supermarket and have a coffee. I had forgotten that I had made a promise to myself that I would try my best not to let my condition affect those around me and the way I was feeling did exactly that. I try not to use the words 'illness' or 'disease' and I adopt a method used by a friend who survived cancer. She imagined her cancer as an evil little devil sitting on her shoulder and used to tell it to .... off!! on a regular basis.But when I am really feeling sorry for myself I think of all the children that are struggling with similar conditions and remind myself that I was lucky I was diagnosed at 46 and not 6,16,26,36.I think of young mums who have been diagnosed and who have young children to look after - my sons were 17 and 19 and could look after themselves - so yes I am thankful for small mercies. Don't get me wrong - I get frustrated at the general lack of public awareness of RA and would love some more support and tlc but I refuse to let this horrible 'auto immune deficiency disease' get the better of me and I will fight it to the bitter end. I'll now step off my soap box.

Hope you all have a day where you can find some respite from your daily battle.xxxx

sylvi profile image
sylvi in reply to sarahsgirl

I have had this disease for 14yrs,fibro for 6yrs and cfs for 5yrs and now just to be greedy i have a compressed disc which is causing a lot of pain in my back and leg.Hence why my hair and nails are multi coloured, refuse to let the bugger beat me.xxxxx

helixhelix profile image
helixhelix

That cocktail is still the most popular! It's served me very well for years now with no side effects. So I'm going to be very careful I don't get shingles - what a dreadful after effect! Do you inject MTX or take the tablets?

sarahsgirl profile image
sarahsgirl in reply to helixhelix

I have tried the injections as it was thought there was less likelihood of the nausea but it was still the same so I went back on the tablets - needles are no fun but I am used to them after 17 years of monthly blood tests!!

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