anyone else: Hi all, this is my first time on here, i... - NRAS

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anyone else

micky40 profile image
7 Replies

Hi all, this is my first time on here, i became ill last june when i just couldnt get out of bed, i went to the doctor who stated i had a virus but did blood test, for 2 weeks i didnt get out of bed i went back to the doctors and was told it was still a virus as all my bloods came back fine, 1 week later i got a call from and RA nurse who said i needed to come and see her asap, which i did.

she then assessed me and said that she felt i had RA in every joint and got an emergency appointment with with a specialist consultant who confirmed that i had full blown RA, i was put on a mixture of meds MTX 25MG INJECTION, hydro, folic acid, dicolfic,co-codomal, 15mg daily of steroids which i feel is alot of medication but i have relised if i do not take them within 2 days i am completely back in bed.

although it seems to keep me at a level the pain never seems to go, im always tired and get very frustrated not being able to do what i use to do i am unable to work anymore and feel that my now lack of independance is hard to deal with although everyday i get more use to it.

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micky40
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diane_83 profile image
diane_83

Hi I am in the same position as you, you are not alone!! Last January I had a little pain in my hip and I thought it might have been my age (this was of couse ridiculous since I was only 28!!). And to cut a long story short by the end of Feb I needed a walking stick and had lost the use of my right arm. Since then it has spread rapidly and the medications I have had, have had very little effect.

You are right in that the pain never goes away but my trick is to distract myself with puzzles like sudoku or mahjong. I know it may sound a bit nuts but it really helps me to focus on something else. Maybe there is something you could try to distract you?

As to the feeling of frustration there isn't much you can do with that. I have just tried to stay focused on the positives thinking "at least I can still manage this.." but there are days where I have a "moment" and feel a bit disheartend with the whole thing. Do you have friends and family to support you??

The tiredness is the killer for me. Simple things like having a shower make me exhausted, but I have learned to gauge what I can and can't do and that if I push myself I will pay for it.

I hope this makes you feel a bit better to know you are not alone and that there are others in the same boat!!

micky40 profile image
micky40 in reply to diane_83

Thank you it does help, i still push myself but am learning not to with the nagging help of my husband.

Hi Micky and welcome - thanks for your story and Wow things did move quickly for you! Good for you also that you have a nagging husband to stop yourself over doing it!! Best wishes Maddie x

earthwitch profile image
earthwitch

Don't give up hope. It can take quite a while to get you on the right balance and combination of meds for you, but be reassured that a lot of folk end up going into remission with this and back to normal activity, once the meds are working well. Even if you hit on the right ones first off, they can take a minimum of 12 weeks to kick in.

You arent alone on this site, welcome xx

micky40 profile image
micky40

Thanks everyone xx

allanah profile image
allanah

Hi MICKEY, my RA started the same way, went to bed saturday, woke up Sunday couldn't move, pain and swelling in every joint. Saw doc Monday, saw consultant Monday afternoon, diagnosed...loads of meds.

Bit of a shock. Yu had a steep getting well and learning curve ahead but make

Lots of use of ur docs and nurses. The NRAS helpline, on their main page nras.org is amazing and when you are feeling miserable or just want a question answering they are magnificent. They also have telephone support from people who are patients with RA, I actually meet up with mine and we had a 4 hour lunch the other day. Welcome to the site and hope the meds kick in quickly and just try to rest then do a bit, that helps with the tiredness, hugs Axx

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