Hi, I'm another new member!

I'm a 27 year old female, diagnosed with Rheumatoid Arthritis 2 weeks ago. I've been having pain and problems with my hands since January this year but put it down to overuse (I knit a lot). I finally realised something was very wrong in March this year when they were still hurting me and I hadn't been doing anything to blame it on. I then started with pain everywhere and really bad fatigue. So I took myself off to the doctors and started the never ending doctor/hospital/consultant appointments and tests. We were going along the route of Fibromyalgia as none of my x-rays showed any joint damage, but then an ultrasound showed inflammation and I was diagnosed with Rheumatoid Arthritis. It was a bit of a shock as over the months I had 'come to terms' with having Fibromyalgia. We're now looking at Fibromyalgia as a secondary condition, but have been told the RA needs to get sorted first.

Over the last few months the pains have mostly hit my toes, feet, ankles, knees, hips, lower back, upper shoulder, wrists, knuckles and fingers. I've started on Methotrexate and am terrified of getting the side effects such as hair falling out etc. The kicker for me was when the consultant told me if I got pregnant I'd have to terminate, as we were thinking of starting a family next year. So basically the plans for the next few years of my life have just been shunted completely out of view. I'm finding that hard to come to terms with. I'm also finding it hard to come to terms with what feels like losing a bit of myself and a bit of my identity. Knitting was very much my 'thing', and my kind of stress relief and therapy. Some weeks I can't even pick up the needles, and then sometimes I can knit for a run of a few days. I've also never been a big fan of taking painkillers, but these days I seem to be existing on Diclofenac and Codeine.

I'm managing to slog along with working full time. I work 10 hour shifts though in quite a high pressured environment. I have been moved to a 'lighter duty' role that is less pressured, but it still involves sitting in front of a computer clicking the mouse over and over for 10 hours. I'm struggling with working my current rota which involves working 80 hours in 8 days every month, but the pay off for that is that I get about 6 days off in a row. Even on the normal weeks I still work 4 10 hour shifts a week which I struggle with. It also means I have a lack of a routine as I work a mix of early shifts and late shifts. We're having to keep in mind that if I continue like this then I'm probably going to have to drop some hours as the fatigue is just so hard for me to deal with. I've suffered with depression previously and I'm also worried about that surfacing again, but so far so good. I'm trying to keep a positive frame of mind but it's hard to do that when I think that I'm only 27 and now have a quite painful condition that I will have for the rest of my life. I haven't yet had a crying tantrum about 'why me', because I don't think it has hit me yet. Asking 'why me' won't help I suppose, but it'll be good to get the self pity over and done with and start looking forward to the future.

I'm very lucky as I have a wonderfully supportive partner, who says he doesn't want to swap me for an unbroken model (haha), and still wants to go ahead and marry me next year. No doubt our sense of humour will get us through it. It's still hard though when he asks me how I am, or how I'm feeling today and I spill out all the aches and pains I've had all day and he just sits there looking at me, because he doesn't completely understand and there is absolutely nothing he can do about it. Of course, that's not his fault though, and I certainly couldn't get through this without him.

Sorry for the ramble, but I'm hoping to be an active member of this forum.

Hi Gempud, ( you ll have to let us know your real name ! )

Thanks for your message, and sorry to hear that you have RA but really pleased you have joined us as you will have some much help and support here. It is very early days and you are doing really well and very positive which is so important. I have had RA for about 18 months so I don t have the knowledge on many issues but be assured that in time the medication will work and life with get back to some sort of norm if never quite the same. I feel that it is down to adapting to a slower pace of life, which isn t always such a bad thing anyway. You will get lots of advice about pregnancy, I am 54 with two older children so not alot of help there !

Really good to know you have such a kind and caring partner, we can all relate to your thoughts about their understanding I don t feel anyone can truly understand unless you have RA, but they do their very best and thank goodness you can laugh together.

Remember never say, we all understand what you are going through and we are here to support you.

Take good care of yourself and looking forward hearing from you again.

Julia xx

hi Gem ( will call you that for now )

so sorry to hear you've developed this awful disease at 27 ... i was diagnosed in June at 57 and still haven't really come to terms with it although the pain tells me different.

really feel for you that you have had to put any thoughts of having a baby on hold that is a double whammy.

i was also terrified of starting Methotrexate and i lost over half a stone in a week with the stress of it and it took me 2 weeks to build up the courage to swallow it, NRAS Helpline were so supportive though and said i could ring as soon as i'd taken it if needed.

but i did take it and my world didn't end !! so far it hasn't worked for me and i will be reviewed in the next couple of weeks as to where to go next.

you have such a long working day ... a supportive partner really helps. couldn't manage without mine we've been married 38 years ( gulp !! ) and i know he's there for me.

you will find a wealth of supportive and information on here, and i know i don't feel so alone since joining the Forum.

keep posting and let us know how you are doing,

take care

Suzanne x

Hi all

I'm so sorry I forgot to end the post properly. My name is Gemma, but Gem will certainly do. I had to rush off somewhere as soon as I'd written it, and I knew if I didn't post it right away I probably wouldn't end up doing it ever. I love it being called the club that no one wants to belong to!

As of today I'm on the 3rd dose of Methotrexate and I can't say I've noticed much happening so far. I know it's supposed to take weeks and weeks though. I swear that more hair has been coming off my head when I wash it, but that just might be my paranoia. I've had some sharp stomach pains in the couple of days after I've taken the tablets, but nothing too serious. The main problem I have is with painkillers such as codeine. I can't take it when I'm at work as it makes me dizzy and very drowsy, so have to rely on ibuprofen which takes the edge off very slightly but not enough to help very much. So most of my days when I have to go to work are spent feeling miserable because I know what the rest of the day will bring. Obviously having the pain and the tiredness and being uncomfortable at work just makes it all unbearable and when I know I have to do it for however many days after, that's when I start to feel pretty miserable and negative. On the good days it's easier to be positive I suppose. I've just had nearly 3 weeks off work on annual leave (another perk of the job is that when we have our annual leave, if you work it so it falls inbetween a lot of rest days then you end up with loads of time off!), and have felt much better in those few weeks because I can do things at my own slow pace and there's no pressure on me to act normal or try to live up to the pace of other people.

Nothing has been said to me about any options at all. Thinking back on it, on the day that I was called into the hospital and diagnosed I feel very much like I was plonked on a conveyor belt, given realms of leaflets, and a lot of things were said at me but no discussions took place. I went in to see the consultant who basically said I was only seeing her so she could tell me that I had RA, then she said her colleague would tell me about the medication. I waited in a corridor for 15 minutes armed with a couple of leaflets about methotrexate and then was called in to speak to a man who didn't seem particularly engaged or bothered about being there. He went through a check list of side effects he had to tell me about. The list was written in very small font on a piece of A4 paper, with boxes at the side that he ticked off after telling me each point and there was so much information there that I can only remember a little bit of what he said. Plus it was said in such a monotonous 'I have to tell you all of this but I can't really be bothered' kind of way. I do remember being extremely sarcastic with him at one point and saying was there really any point in me going on this drug if there was a chance of all that stuff happening to me. When I did ask a few questions regarding the pregnancy aspect of it he did say that when the time came there may be a possibility of trying other drugs but he didn't say what/how it could be done. Whenever I mention that aspect of it to people, whether they are professionals or not, they say 'Oh but there's plenty of time think about that and deal with that'. Well yes, there may be plenty of time to deal with having a family, but I want to know my options now so that I can have some feeling of control.

I think one of the main aspects I struggle with is simply the lack of control I am left with. The lack of control in being able to plan the rest of my life. The lack of control over what my body is or isn't doing for me. The lack of control over the side effects of the drugs. And the lack of control over the feelings and thoughts that sometimes cross my mind about it all.

On the other hand I'm very glad I finally have a diagnosis and when people at work ask if I'm okay or whether my pains are still plaguing me, I can say that I now know I have RA. I used to feel really silly trying to explain to people that I had pains all over my body but no one knew why. They'd look at me like I was a hypochondriac. There is one other person I know of at work (it's a very big place), that has RA and has had it for about 15 years. I did start speaking to him about it but it's hard because he makes me feel so inadequate. He has it quite severely but managed to have 2 kids, and works full time night shifts whilst hardly complaining about any aspect of his RA. And then there's me there asking to be put on 'lighter duties', and saying I can't handle the shifts/work.

Thank you everyone for being so welcoming. It's nice to know there are people that have had this for ages who haven't been driven insane by it! I plan to go through all the forums and read up on everything, but for now I'm going shopping for a winter coat, and then it's bedtime as I have to be up at 4:30am for the first day back at work, and the first of 7 shifts in a row. Whoopedoo!

Hi Gemma,
Welcome to the club. I am aged 54 and have had RA since 2004, Still not sorted out right meds yet but ever hopeful that it will be soon, I took MTX for just over 2 years, both tablets and self injections but came off it in july this year and am struggling with Sulfasalazine at the moment.
This site is a great way to find out info or to just get things off your chest, I'm still new to it myself but am so glad i joined. I look forward to reading your posts
Eileen. x

Hello Gemma

Welcome to the forum....pity you have to have RA to join.

I was diagnosed just over two years ago and currently taking SLZ and MTX. The MTX was added last May and I was terrified about taking it, kept thinking was I bad enough to justify taking such a toxic drug, so worried about the side effects, but I can honestly say that I haven't had anything that I can directly say was caused by the MTX. I too sometimes think that my hair is falling out, but it is normal to have some hair loss anyway, just think I'm just looking for it. I have felt on the odd occasion a little dizzy or nauseous but something else could of caused that. I am taking 15mg at the moment and are soon to increase it to 20mg. A little worried about that but will have to wait and see if I can tolerate that amount.

You said you are taking ibuprofen and it only taking the edge of the pain, is it the one that you buy at the chemist? I ask because I was prescribed with brufen retard by my consultant, they are slow release pain killers, I take 1 in the morning and 1 in the evening, was told by the consultant at the time to take them like this so I would have constant pain relief in my system. The normal dose for ibuprofen is 1200mg but each of the ones that I take are 800mg, so I take 1600mg per day. I also have to take a stomach protector.

You do seem not to of had much support at the hospital, at my hospital there is three specialist nurses, I've only seen two up to now and they are both lovely. I feel that I can talk to them better than the consultant. Have you been offered an appointment with the OT or physio? I was, I had an appointment with my specialist nurse six weeks after I had been diagnosed and I was referred then. OT gave me lots of advice of how to protect my joints, gave me wrist splints and numerous booklets about RA.

When I was first diagnosed with RA, initially I was relieved that at last I knew what was wrong with me and was being treated for it. I then started to do research on the internet and frightened myself to death with what I read. I thought my life as I knew it had come to an end and I would end up in a right state. Yes, I do understand that there are some people that suffer really bad with RA but there are thousands upon thousands who once the treatment starts to work do carry on with more or less a normal life..........do remember this. One of our lovely members Amanda who was diagnosed with RA when she was a young girl is currently in hospital awaiting baby number 6, yes SIX, so don't give up hope of babies yet. There is life after being diagnosed.

Have you thought of ringing up the helpline and asking for a volunteer to ring you up? They have lots of people who will ring you up to talk to you about RA and their experiences with it..............someone who knows what its like and will listen to you and all of your fears.

Keep posting and reading forums. I read lots of forums, this is the only one that I do post on, but do remember one thing when you read what others put. Alot of people post on forums when they are having a bad time and need some support, don't think that what you will read will happen to you. I was told this by the NRAS helpline when I first joined.

Take Care

Paula x x

Hi Gemma

My name is Lisa and I have had RA for 9 years, since I was 33. I can honestly say, looking back it took me about 12 months to fully accept that I had RA and how it was going to affect the rest of my life.

I have a very supportive husband and it is good to hear that you have loving support as well.

I sincerely hope that your RA team can work out the medications you need to at least manage this horrible condition on a day to day basis.

You will certainly get lots of support on this forum from people who know exactly what you are going through.

Best wishes
Lisa

Hi Gemma

I am glad you are finding support from the forum. Though feel those getting such a diagnosis should get offered counselling as its such a lot to take in. I suppose we all come to grips with it in our own way. It will take a while to learn the ins and outs of RA and adjusting. Nothing worse than someone being empathic when you feeling vunerable.

BTW I would check the pain killers as when I was put on mtx I was told not to take Ibuprofene but paracetomal. Reason being is that ibuprofrene bumps up the mtx. It takes a while for these drugs to build up in your system , and you will feel a difference when they start working I was in bits before I started my medication and I was put on steriods as it has an instant effect and went on to mtx, which didnt agree with me and I am now on hydrochloriquine.


Yes there are other drugs if you want to have a baby and your partners sounds very supportive.

Take care

Mari

Hi Gemma

Mari is right in away what she said about taking ibuprofen along with MTX. When I first went to get my prescription for MTX the pharmacist told me to check with the hospital that it was OK to take them together because the drugs inter reacted with each other. I did ask and was told that the benefits out weighted the problem and I was being closely monitored with all of the blood tests, so anything would be picked up early.

Paula x

Hi Gem,

I'm Lorna, married to Ken and have 3 lovely daughters. I have had RA for 3 years now and I was very ill at the start, like you it started in my hands, then my arms, neck, shoulders, then everywhere there was a joint. But the good news is it does get easier, you sound a positive person and thats what you need with RA. Try taking you MTX at night then you are sleeping when the effects hit you. I was put on the triple therapy, It was a long haul but I always tried to remain positive. I was also given 3 different Depo Medrone steroid injections which helped lots. You will get there, thinking about you. Lorna x