ive never met anybody with ra

ive never met anybody with ra.when talking about it they say they suffer with it but its generally another form of arthritus or something else.This may sound weird but i would love to meet someone with RA so i know im not the only one who is suffering,

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  • Hi Stu....hope you're ok...it's soooo late but I can't sleep! I've only met one other person with RA....a lovely lady that I dealt with at work whilst I was waiting for my first appointment, she'd had it for 13 years and gave talks to medical students on what it's like to have RA, she said for me to ring her anytime especially if I was diagnosed with RA to keep in touch but I lost her number and haven't seen her since! I know of people with it but that's it but a friend at work has just been diagnosed with another form of inflammatory arthritis so we compare stories.....good thing for this site eh!? Maddie x

  • There are a lot of different arthritis support groups around, and most of them have a fairly strong social and networking function as well. See if you can find one near you. If you don't know where to start, ask at your CAB if they know, and if they don't, ask for the names of any national organisations, then contact them. Or just try googling "arthritis support" + your county or city name and see what comes up.

  • Hi :) I can relate to what you're saying! I do know one person with RA though - the mum of one of my childhood friends. She's had it since she was 25 and I've never noticed there was anything wrong with her as a kid. Her RA has developped differently though and one reason I like this forum so much is that you meet people who have almost the exact same thing going on! If you are more looking for face-to-face rather than online support I wholeheartedly agree with earthwitch's suggestion :) xx

  • rheumatologist has put me on prednisilone, hasnt worked much, has anybody else had any success with it? x

  • response that is obviuos can take up to two days for injection and sometimes up to two weeks for tablets x

  • Yes I have a lovely what I call steroid holiday with prednisolone, it really damps down the inflammation with the jab within 48 hours for me, lasts 6 to 8 weeks for me. Don't stop taking them Hugh you have to slowly come off them as directed. Good luck xxxxx

  • hi welcome im up early us sufferers dont sleep well!!, ignorant me in my 20s I worked with a girl in research labs and she had it, she said something about gold injections, but it meant nothing to me then!! only after retraining plus side ways care move( studying pharmacy in late 30s!!), then developing an auto imune disease at 45 years old did I UNDERSTAND, I am now very ashamed to day!!

  • morning

    ,thanks for your replys,i suppose one positive of suffering and not being able to sleep is being up for the sunrise, this morning,im currently sat at my patio doors with the sun coming in on me

    ,Hope you all have a good day.

    stuart

  • What part of the country do you live in Stuart,then you might be surprised who does live near you.xx

  • Or phone the NRAS helpline and ask to be put in touch with a phone volunteer, so at least you can talk to someone with this? Halfway between the virtual world and face to face? i never met anyone with this, so finding a forum full of RA'ers was great and I promise you, we do all have RA on here! Polly

  • I've only met Cathie from this site when she had me to stay for a night last year and then again when she was visiting on holiday last year. She's lovely so that was a positive experience! Tilda x

  • Aaah thank you tilda, so are you!

    I did know people with RA my mother had it, so did my aunt and grandfather. That has made me aware of how much things have changed in terms of treatment. I suppose it helped to convince myself that's what I had, although I never accept the limitations. I had a colleague at Warwick uni who had it too and I'd love to find her again. I wasn't terribly nice to her. She was called Di, but I won't give her whole name.

  • Hi Cathie. It's hard to relate to stuff that fills you with dread isn't it? I have had to face my fears on a few occasions through the experiences of others and I think I would have evaded some of these if they hadn't been pretty much forced upon me. I know I hide my head sometimes now when it comes to my sisters asking me to get more involved with deaf people and their families - partly why I don't have Facebook i think.

    You probably thought about her RA and then thought of your mum and said "no thanks" under your breath? Could you look her up on Facebook or online now perhaps? It obviously preys a bit on your mind. Tilda x

  • the first attempt got lost and I've just realised this.

    Just to say that its important to remember that everyone is different and the outcome/ present situation depends a bit on treatment as well as the severity of the illness. So its good to remember that and not be unduly disturbed. Many of us have had the experience of waiting to see the rheumy with very disabled people, and also without!

    And Tilda, apropos of Di, I wasnt kind when asked to move offices once so that she could have easier access. There were several male colleagues who could have moved upstairs though so I wont worry too much. I would like to be in contact with her tho, she was very nice, and I've tried all the relevant sites XX

  • i know what you mean, I have met 2 other people one had juvenile Ra and has the war wounds to show but has it all under control now he is 40 and the other is in very early days and doesn't have it like me yet (hopefully she won't) but sometimes you just want to see someone else physically face to face that you can identify with in a weird kinda way. I live in the channel islands and we dont have any support groups here for RA, my nurse suggested I could start one, but thats the last thing I would want to do until I am more comfortable long term, thank goodness for the internet :)

  • I had previously only seen my grandma suffer with it as I grew up.

    However after diagnosis I contacted NRAS and I go to the monthly meetings in my area so now I have loads off friends with RA lots off surport from them all, also my rheumatology department held a eight week course to learn fully about every aspect off RA I was enrolled on that too and met more people, NRAS also do similar courses. I've also just joined up with NRAS for a training day in may which is to train you more about NRAS and how they work and how we can help.

    I suggest you phone NRAS or look on the website for your nearest meeting, I've not looked back since joining the group and if there isn't one in your area why not try setting your own up,

  • Aww my lovely friend Mike has it, he is much further down the road than me and is hospitalised regularly. He has been on all the biologicals humira, Rituximab, tocilizumab, abatacept etc etc over the last 8-10 years and has now had to come off them all because of infection. He is not sure what he will be offered now, I regularly ask him for advice so it is nice to have a friend like that but I wish so much that he didn't have it - he was hospitalised last week and he confided that he really thought he was going to die. Oh how frightened he must have been, and how frightening the future must be - he is such a lovely lovely person and copes wonderfully well. Really it is a mixed blessing personally knowing someone worse than you, it shows a scary future, is helpful from a support point of view but horrible to see a good friend being ravaged by this monstrous disease.

    Tilstongal

  • I think its important to remember that your poor friend's experience is relatively rare these days. Very unlucky but your own prognosis will hopefully be very different and it probably helps him a lot that he can advise you and that you can empathise with him to a degree also. Xx

  • after a very minor injury I had pain in every joint which was first diagnosed as gout but after waiting for one month for an hospital appointment I was told that it was RA, After 1 month of

    nearly unbearable pain I was started on medication & now I am improving slowly.

    Have been told to pace myself which is very difficult as we have a small holding but if I overdo things RA soon lets me know .I would say that compared with when RA started I am

    70% better & improving every week so I hope that this carries on. I never thought that

    anything could strike as suddenly as RA,to start with I could not even get my shoes on but have been told that I am responding to treatment very well ( this all started end of last September) it's been a long 7 months so all I need now is some warm sunshine !!

    All the best for the future, Johng

  • Hi yes i do know people with ra. To be honest i really not sure if thats good or bad. As i do know someone who i would say is at the extreme end of this disease. The poor man has got some very big problems. On the other hand their are some others who have had it for years who are not so bad. Maybe the south has more suffers!!! coz i know five who have the disease. I even don't go to NRAS due to the fact i still work at present. Meeting here start at six which is to early for me. I will go to the meeting but will have to wait until i retire .Thats if this government ever stops putting the retirement age up !!!!!!!!!

  • I don't know of anyone who has been diagnosed with RA, even though I have did it for many years. Still work part time and find everyone I try to tell how I am feeling have got worse pain somewhere or other, so I gave up trying a long time ago. People have no idea what it is like, do they? That is why this site is such a good place to let off steam and get advice from people who understand.

  • You're soooo right Whitworth! Xx

  • Well you now know another Stuart with RA....Me!! Welcome aboard. Great support group here. All the best Stuart. From Stuart. NEVER Stu by the way.Lol.

  • my arthritis is the psa rather than ra but it's so frustrating when people tell you 'oh i've got a bit of arthritis in my knees too so i know how you feel' - i'm sorry but they don't!

    it's not just the pain - it's the fatigue and exaustion after doing every day things 'normal' people take for granted. trying to keep my home tidy and do my shopping is like running an uphill marathon :(

    i get so jealous of people who can just jump up and hoover or put their coat on and have a day out - i wake up wanting to go back to bed!

    i stupidly decided i needed a little break from my gabapentin and i found out just how feverish and dripping in sweat i am without it - and i'd been sleeping at the time so it wasn't exertion sweating! tempature control seems to be a big thing for me - i can be like a radiator but so cold at the same time. it makes me feel so lousy and drained.

    there is local arthritis group meeting in my local hospital once a month and i keep telling myself i'm going to go one day, but i never seem to have the energy to actually get there!

  • I have PsA also so i know just what you are going through. I try and carry on as normal because my husband has some form of arthritus and ME, so i dont get much help in the house from him. My motto is do what you can and leave the rest till i feel like doing the rest, wether its today or tomorrow it will get done eventually.

    Chris

  • Hiya, I called the Rheumy hotline and they set me up with one of he telephone volunteers and we have met up and been friends nice, we. Going to the movies on Thursday. I love in North Yorkshire if u r close. Also if you look Nras have support groups where people with RA meet up, give the helpline a ring or go on the main Nras site and hey will let u know your nearest group. It really was the biggest help meeting other RA sufferes xxxx

  • LOL Allanah. What are you offering??? You've put 'I LOVE in North Yorkshire if you are close'!! I know you volunteers help fellow RA suffererers but that is above and beyond the call of duty!! :-)

    PS. Am thinking of moving to N.Yorks:-)

  • good to read all responses,i live in Basingstoke ,Hampshire.i checked on the directory and there actually appears very few people in this area with RA that are registered on this site.

    Reading through some of the posts/questions on here i think im one of the lucky ones at the moment as i am still working full time in the building trade thou some days i struggle and i generally come home and go to bed for an hour.I have been told that i wont be working by the time im 50 (1 year 2 months and 24 days to go lol)but i intend to prove the drs wrong,as im aching/hurting if im working or resting so i might aswell get paid to be in pain.

    Thanks again for your replys .

    Stuart

  • in the past 2 years i have met three people with ra, one in the local shop where she works part-time, she noticed my hands, the second was a cosmetics lady in Boots who apologised that she was sitting and the last was at the hospital last week, the nurse who was seeing to my daughter asked what the problem was with me and told me her husband suffers from ra from he was 19. Each time, I loved exchanging chat about medication, lethargy etc.

  • Thanks to modern medication. I am hopeful of finding its treatment. It may be a longer medication period. One has to avoid worrying and fight through making changes in life style. Also dietary precautions along with meditation might be necessary. Better be optimist and think more about yourself only and not others. Take longer leave from present works and enjoy the break in liked environment and pollution free atmosphere.

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