Newly diagnosed and first post...

[shasmac]

Firstly can I offer a heart felt thanks for all the information and first hand experiences you all kindly share on this forum. I have found this a godsend as I've tried to get my head around this disease. I thought my experiences, so far, might help others just diagnosed to know they are not alone as this has been my biggest challenge.

I returned from a one weeks holiday in Tenerife in May and the next day I started to get bad pins and needles in my hands in the morning. Ignored this, as we often do, and just got on with life as normal. Within a couple of days the pain started and quickly spread from my hands/wrists to my elbows, knees and ankles. Two weeks later and still in full denial that anything could be seriously wrong with me, I was in agony (little realising that this was only a foretaste of things to come). I had to call my daughter to come and take me home from work as I could no longer drive.

GP prescribed Diclofenic and said that would deal with the pain. Within a week I was bedridden with levels of pain I had never experienced outside a labour ward, GP suggested over the phone that I could take paracetamol as well. If I could have got a hold of that GP over the next few days I would have shown him exactly where to shove that paracetamol. I was trapped upstairs for days as I couldn't manage the stairs, every movement was agony. I managed to get an emergency appointment with the new trainee GP who immediately sent me for bloods and prescribed co-codamol. It did nothing to help the pain either. By this time I felt as though I was going mad with the pain and lack of sleep. Two minutes on google had given me an idea what was going on by now but obviously my own GP had never heard of RA before. I started bypassing him and phoned the other for my blood results. Off the scale for inflammatory markers and RA score, etc. Had to see my own GP the following week and he appeared to be almost reluctant to refer me to the Rheumatologist. Said it would take up to twelve weeks to get an appointment but when he went to his computer to do this he noticed that it had already been done by the trainee GP. Don't know what he said but I was seen within 10 days.

It was great to have someone that actually listened and understood. Rhumy was great and explained what was happening in detail. Big shot of steroids in the rear, x-rays, bloods, full physical and Methotrexate with folic acid. Took a couple of weeks to truly kick in but what a difference. It helped to have a definite diagnosis so I could begin my research in earnest. Finding forums like this one has helped enormously, to know that there is a community of support from people who really understand. Work has been very supportive so far and I actually found out that two other colleagues have had RA for years and are willing to support me when I return.

So this is me 10 weeks after the first symptoms appeared and I now realise how lucky I have been considering how long others have had to wait. I've been waiting with trepidation for the side effects to arrive but none so far. Every day is a bit better than the previous one and I'm almost back to normal now. Every twitch and ache has me scared that the pain is returning and I truly don't think I will ever lose that fear. This emotional roller coaster is something else...

Early days yet I know but things are looking positive so far.

kind regards

Shasmac

[allanah]

Hi Shasmac and it is great to see you blogging and I am glad you get help when you needed it ...eventually!!!

I am glad the pain is easing up but it can be so bad and difficult to explain as you said. Did they diagnose RA and it sounds as though the mtx is helping you which is great news.?

Emotional rollercoaster well yeah! i did find that, one day up and the other down! Do you get fatigue as well, that is the hardest symptom for me as i hate having to stop doing things when i am exhausted.

Well good luck with the treatment and keep blogging, its great to hear positive stories and good outcomes but if you do get an ache, come on here and moan, loudly about it lol Axx

[shasmac]

Hi Allanah, yes Rhumy diagnosed RA straight away. I've had quite bad indigestion twice but it went away, also had hay fever symptoms for a couple of days and have never had that before either . I'm not sure if I'm feeling genuinely fatigued or just because I'm sitting about the house most of the day. My laptop is almost welded to the end of my arms and I mis-spend my day playing farmville and world of warcraft. In fact, exactly the things I nagged at my daughters for doing when they were teenagers, lol. Perhaps I'm regressing...

[allanah in reply to shasmac]

got a serious candy crush addiction too !!! oh and watch Jeremy Kyle, oh the shame!!

[helixhelix]

That's so good that you pushed to get seen, and got a quick appointment. Looking back I wish I'd jumped up and down more (not that I could as also bedridden) and got treated more quickly. But like you I responded well to the drugs, and several years on am still doing well. Do try to stay with your positive attitude. I think it really helps... Polly

[Hidden]

Firstly welcome to this forum Shasmac. I would recommend you join NRAS too if you haven't already. Its a great charity and needs all the support we can give it. Your story of a quick diagnosis is pretty unusual I feel and is absolutely what NRAS and other charities advocate. I hope the symptoms of RA stay away from now on but as Polly says, it really helps to have a positive attitude and to be well informed and proactive about RA. Thank goodness for that trainee eh - so much for experience?! I find that the fear of pain is quite long term but it does at least serve as a reminder to keep taking the drugs. Tilda x

[summer32]

welcome and well done on being persistant ans seen quickly xx

[Sue8]

Hi Shazmac, So nice to hear that you got diagnosed so quickly and especially that the MTX is working quickly also.

It has took a few years for my own diagnosis as I was negative for the RA factor. One of my GP's diagnosed me with PMR (polumyalgia Rheumatica) in March 2012. He could not treat it as the treatment is steroids and they increase sugar levels. (I am diabetic) By the end of June 2012 however they had no choice but to try as I was almost bedridden with hubby having to get me up and down the stairs before he went to work. The steroids worked and I was like a new woman but still had very painful hand. I saw a new doc at our surgery who was young and did a squeeze test. Well I could have threw him out of the window lol. He said he thought I had RA but I told him my RF was negative. He then went on to tell me there was sero-neg and sero-pos so just because it was neg didn't mean I didn't have it. I saw a rheumy 7 weeks later who confirmed it. My CRP has been in the 20's for years and not one doc had thought to send me to a rheumy. Last Oct I was finally diagnosed and like you got an immediate steroid injection even though I was still on pred. 9 months later I am still not under control. MTX is not working for me so they add hydroxychloroquine. Neither are reducing my cRP so now awaiting MTX injections to see if they make a difference.

I was guilty like many thinking it was just arthritis but it so isn't. I am still scared of what is to come as it is a progressive illness. Now I have read it can affect body organs also which is also scary. I now have a mobillty scooter to get me out and about as I don't drive. I also have a blue badge and get high rate mobility on DLA. People are so shocked when they see me as I used to walk everywhere.

I believe it is still early days for me but my nurse said last week that they should have been on top of my pain by now. I can't take codene and they are reluctant to give me tramadol so only have ibuprofen.

Keep blogging and let us all know how you are coping and above all keep smiling if you don't you will cry.

Sue x