No more lurking

No more lurking

Hi my name is Louise and I've finally found the strength to stop lurking in the shadows and write a blog. I say strength because every time I've gone too write I would just get too emotional. I was only diagnosed in March this year and I'm still trying to get my head round this unpredictable disease. I didn't know much about it so when I was first told by my Dr I had RA the first thing I did was research, where I came apon this site and have been hiding in the shadows ever since. After reading other people's stories I realise I'm very lucky, because from going to the Dr, to seeing the consultant it took only three weeks and have had a steroid injection, on mtx, folic acid and naproxen. 48hrs after having the injection I felt a big improvement, swelling for the most part has gone down. The fatigue tho and lack of strength in my body is what I'm finding hard, but enough waffling from me, I just wanted to say a MASSIVE thank you to all on this site, I've cried and laughed at posts, which have made me feel that I am not going mad. Don't get me wrong My husband and kids have been amazingly supportive, but it's hard for me to explain to them how I'm feeling,especially since the visible signs are no longer there, bugger I'm crying again. Gentle hugs to you all x

23 Replies

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  • Welcome to the site Louise. I was diagnosed in March too and everyone on here has been amazing with their support and information. It just makes such a differnce talking to people who actually understand. Tracy xxx

  • Welcome from me too. RA can be a long tough journey but it sounds like they are throwing the same drugs at you as they did me, so persevere. I lived in costessey/sprowston & norwich for 3 years when I was working at the old west norwich hospital, And still visit the new N&N for work occasionally, so know the area well. Now back in Herts where we started. All the best. Stuart.xx

  • Hi and welcome to this wonderful site...i found out a year ago that i had RA, no one really knows what it is like unless you have it yourself...like if im on the bus and an elderly person gets on,i can not get up to offer my seat and people look at me as if to say im wrong, all because RA doesnt show...This site is wonderful though. x

  • Hi Louise, welcome to the site, I'm with everyone else who has replied. Sorry you are struggling but pleased you found this great bunch of people who understand all that we go through. So the love & support is priceless. Take care of your self, love Alison x

  • Louise welcome to this site and thank you for being brave enough to use it. Its quite scary the first time you use it. As others have said your rheumy is doing the job well. Any questions you need answers to there's normal someone who has the answers xxx

  • Welcome, sorry to hear that you have started on this journey that we are all on. As you can see we all help each other and someone is always here even in the middle of the night! Take care.x

  • Yeah, lots of " lurker s" coming on recently and I am so glad! Lol!

    I got RA 2 years ago and I found the site whilst looking for information and the Same as you enjoy the laughs and the tears as well.

    It's great your family are amazing , mine r too but sometimes I just don't want o burden them anymore, so I come on he and feel comfortable talking with the lovely people here.so keep blogging and looking forward how it all goes , hugs Axx

  • Ps love your photo xx

  • welcome Louise, and i also love your photo,

    Ali xxx

  • Hi. I'm a lurker too , just waiting to be diagnosed with ra I don't know much about it at the moment but I was wondering what you mean by..the signs are no longer there..sorry for my ignorance

    Thank you

    Jan

  • hi Jan!! if you want info theres loads on nras.org for you just looking at RA. good luck and keep blogging.

  • Hi Louise

    Welcome, though sorry you have to be here with the rest of us. I'm so glad to hear you've seen a doctor quickly and started treatment. I think most of us can probably identify with the crying. It's partly the shock, but also an effect of having active disease busying itself around your body. Like everything else, it will most probably settle down with time.

    Good luck.

    Dotty xxx

  • Thank you all for the welcome, I've always been a very independent person, my husband sais too much so, about 8 years ago I started having serious problems with my back and it was not until 18 months ago that a new Dr at my surgery took me seriously and helped get the medical attention I needed, I've learnt to live with and adjusted my life to cope with it. Switched to night work, tends to be less demanding as I'm a health care worker. I cut my hours down to 3 nights, well mostly. But my family could see the pain I was in and when the RA really presented itself and spread to swollen fingers, feet and knees, shoulders, I could hardly move, couldn't sleep, miserable, losing my temper, this what I mean by visible. Now swelling just in some fingers and toes and not as bad, I'm having good days, bad days, but feel 50% better than I did 2 months ago. I feel like I have permanent flu, aches and pains come from nowhere, but it's not obvious, so they think I'm ok, trying hard to get on with everything, then realise that I just can't. My husband keeps scalding me, but he has osteoarthritis in his knees, needs to have both replaced, but he keeps going, never really complains, also with my patients, seeing what they have to deal with on a daily basis, (all complex care cases) I feel a bit of a fraud, silly I know so seeing people's posts has just helped so much, sorry rambling, now I've started, can't seem to stop lol you lot my regret welcoming me ;) oh yeah the photo is of my two beautiful children taken my brother in law about 5 years ago x

  • Hi Louise reading your post reminds me of how I sometimes feel. I have rhematiod arthritus secondary sjorgens and chronic dry eyes for a couple of years now and found it hard to accept. I joined this site last week and it kind of cheered me up relating to people who understand. I have a loving supportive family im lucky but people who dont suffer like ourselves dont fully understand. There are days i look well but on the inside feel so weak and have no energy. I'm 44 years old married with two amazing sons 18 and 14. Love your photo of your children. Its hard on our family watching us suffer. It was my sons 18th birthday couple of weeks ago and we all wanted to celebrate as a family and have a meal out. Unfortunately i was poorly couldn't go i thought theres always another day but at the same time its not fare. I was suffering so bad from flu like symptoms my ulcer re appeared on my eye :( my methotrexate was making me feel sick and like you mentioned the tiredness is my worst enemy. I've only been on meth injections 6 weeks so I'm hoping I have more good days. Anyways good luck on here...I've read and shared some understanding comments. Prairie x

  • Hi Louise, I'm Jill, 29, married to a wonderful man and 2 beautiful boys aged 3 & 5. I was diagnosed with RA in march also with symptoms from Aug 2012 in both hands. Luckily for me I have a wonderful GP who sent me for X-rays and scans and bloods 3 weeks later, positive RF of 360 titre so rheumy did all examinations and ultrasounds ( thickened synovial membrane & tissue damage) he diagnosed me Sero Positive Rheumatoid in the office. He started me on MTX, naproxen, Folic acid, domperidone & omperazole. I found this site amazing, I have asked lots of questions and the response has been such a god send and also have a wonderful rheumy nurse who explained everything that could happen, what happens next. I wish you a gentle journey through this rocky road xx

  • hi. just wondering how you are today?

  • Welcome Louise. I found that the first year was a bit of a roller coaster ride, lots of ups and downs. The drugs you are on now are the first step that the rheumys try. If you do well on MTX that is great, you should find yourself being able to go on with your life as well as you can. Let us know how you are getting on with it. Good luck and keep in touch. Jean.

  • I'm doing ok, thanks Allanah. I have taken this week off, only had one shift, due to my client going into Great Ormand St Hospital today, so took the opportunity for time off. I actually went for a walk with the dogs yesterday afternoon down to the shops, hard going coming back, but I did it. My husband sat by phone (bless him) in case I need a lift back. He is off work for two weeks gutting our bedroom and making it a haven for me, 13 years of living in a room that was awful, you know what it's like, everything else always came first. Can't express how excited I am. Feel my spirits lifted today after everyone's lovely welcome, also had the last of my weekly bloods today, yeahy, now going to be just monthly, I'm not very forthcoming with my veins, poor nurses get so frustrated and concerned about leaving me looking like a pin cushion. Lol Going for another little walk round the block now, electric blanket on ready for my return, a nurse friend recommended I get one, why I never got one before for my back I don't know, but it has been a brilliant investment. Hope everyone else is having a better day x

  • Sounds good! Glad you are getting some time to recover and relax a bit. I LOVE my blankie!! It really helps my joints a lot having heat. I wish my hubby would decorate though!! he never has time...he says lol xx

  • Hi, I'm a bit late to the party but wanted to welcome you. I was diagnosed in July last year but just found the sit a few months ago. Like you it took me a while to build up the courage to write. I find RA quite overwhelming! Everyone here is so kind & supportive. It's a good place to let it all out & get some fab advice. Really hope the mtx works for you & things improve soon. Sending hugs xx

  • Hi Louise, sorry I'm coming to this late, after day at work Just wanted to say welcome to the site. I was diagnosed last year after nearly a year of symptoms. Started mtx in May and am now feeling so much better.Although only work part time am now back to doing extra hours. Hopefully your treatment will be really effective once the mtx starts to kick in. Am not so far from you, living just across border in Suffolk. Maybe will bump into you at the N & N sometime!

    Good luck.

    Caroline.

  • Hi Louise, welcome. I was a lurker for a while too but like you, recently decided to come on board. I know everyone here will help you with support and advice.

    Those blankets are wonderful aren't they.... I hope your bedroom turns out exactly how you want it. Its the little things in life that give us the most joy and I can see this will be one of them!

    Glad to see you here and hope to talk to you more.

    -gail

  • welcome to our happy little site x

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