RA for 13 Years

Hello

Im a new member on this site , but felt it was the right time to share my experience of being diagnosed with RA over thirteen years ago.

My initial symptoms were about 14 years ago and seemed to come out of the blue and were very extreme at the time and had a massive impact on my life prior to be diagnosed , I would suddenly feel really unwell like I was going to get a really bad flu then a couple of hours later my hands and feet would swell up making everyday tasks impossible, in the end it effected just about every joint in my body, I had the usual battles with the GP I had at the time and unfortunatley it took them about a year to eventually get me refered to my local rheumatology department by which time Id suffered a fair bit of damage to my hands and feet.

After being told I definatley had RA I had a fair bit of contact with my local RA clinic and had an amazing doctor who really did me a lot of good he was very honest with me which was great, he told me RA was a very nasty condition that had many forms and had many unpleasant side effects , he did also say with the right attitude , good treatment and a healthy lifestyle I could hope to lead a resonably normal healthy life and enjoy most things that we all sometimes take for granted.

Im pleased to say for over ten years Ive been very lucky and most of the time managed my RA reasonably well and think that was a combination of the meds and my addiction to my fitness and running :-)

Im now 45 and and earlier in the year had my life turned upside down after a combination of a fairly serious accident at work and my RA re appearing in many different forms following the trauma of my accident.

I went from being able to run 3 miles a day and a 2 hour gym routine to being able to do nothing , I ruptured my achillies tendon and had surgery and had been at home in a leg cast and on crutches for a few months but I started to feel really unwell just like I did 13 years ago when I was first diagnosed with RA , I have to say it came like a bolt of lightning out of the blue and it really knocked me , I live on my own and didnt really notice how ill I was getting and mistakenly thought I could cope with it on my own, after much presure from family and friends I went to hosptal and was quite shocked with what they told me , they told me Id been foolish ignoring all the symtoms and feeling unwell and I was now seriously ill and for some reason Id lost the circulation in my toes with no detectable pulse in my foot (Ive since found out I have vasculitis and also have chronic raynards sydrome both of which are linked rheumatological conditions , and I had suffered a DVT in my foot) I spent a long time in hospital and was very poorly, but Im really pleased to say that despite being told I would loose my toes 3 months later Ive still got them. :-)))

Daily visits to hosptal now for past few months and Im on high dose of warfarin to prevent a future DVT for a while and many visits to rheumatology and physio therapy , been told my RA is now chronic and Ive got badly damaged joints in my hands and feet but Ive made the same decission I made 13 years ago when I was 1st diagnosed that Im not going to let RA take over my life and I have every intention of going back to work in the near future and hope to start being able to return to my training eventually, all be it in a different form as I'll be unable to walk without crutches for quite some time to come yet , but def wont let this stop me only this time Im not going to be so proud that I feel I can't ask for help !

Reading the blogs on this site has empowerd me and made me release that its a stronger person that can ask for help when needed , and have I found the posts concerning methotrexate very inmfomative, as the tablet form has made me feel really nauseous , Im due to start self injecting in the next few weeks along with sulfasalazine and lots of ibuprofen retard and stomach protectors.

I owe my frinds, family and work colleagues a big thank you along with my employers who have been great despite RA being a very difficult condition for people to understand due to the fact that I can seem to be very healthy and physically fit one minute to being very ill within hours.

God bless the NHS , despite their faults we really are very lucky to have such an amazing instituation.

Stay safe and with the right attitude , treatment and help from others we will togehter give this RA thing a good run for its money :-))

Regards ;-)))

Matt

19 Replies

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  • Hi Matt - good to get an experienced RA sufferer on here although of course I'm sorry you've had to find this site as well. Your blog made interesting reading for me and I'm sure many others besides. I'm sure that once you are fully mobile and able to exercise again - as well as taking the Methotrexate - you will be working out once more. When RA hit me it did seem to knock me off my feet but I didn't really get the fatigue and general flue-like symptoms until I was diagnosed and on Methotrexate - which meant that I blamed the drug more than the disease for a while. I'm still not 100% sure that RA is to blame for anything other than causing me to take these drugs I've been on for 18 months now. However I do know that it hasn't gone away, having taken a month off them and found it came rudely back to reek havoc.

    I do agree that taking regular exercise is the secret for getting RA under control but only if you are fit enough to undertake it of course. I feel that I've turned things round for myself by losing a lot of weight and doing regular exercises so I really hope that this trauma brought about through an accident can be put behind you and once again, with some help from DMARDs, you are able to get back to some kind of normality - even if it's a slightly altered one. Keep giving RA the runaround - may the force be with you! Tilda x

  • Thanks Tilda know what you mean about the Methotexate , it really does have some unpleasant side effets , but suppose if the benefits outway the side effects its worth staying on it , I know that decision is different for everyone tho.

    Regards.

    Matt x

  • Hiya, your blog made interesting reading. I like your courage and your wish to stick to a normal life. I do agree with this strategy, even though at time, I would rather cuddle up in bed and leave the world behind.

    RA is a painful and annoying disease. I have found that the many people who do well with methotrexate will do well in controlling their disease.

    Keep chin up and I hope that you will be back to work in no time.

  • Thanks very much for your kind wishes ,

    Matt ;-))

  • I loved reading your blog. As a fitness fanatic my fear is always how will I be later down the road. Most of the time bar a painful shoulder and aches I'm very active. Great new s you have kept going to 13 years being sporty I feel greatly reassured and very happy. Good for you keep it up and hope you recover soon xx

  • Many thanks for your kind wishes , Im sure if you can continue being as active as you feel you can it will be a help along with treatment and support.

    Its a very difficult condition for people to understand as Im sure a lot of people like me can seem really fit and well one minute and the next minute have difficulty with even normal day to day activities and walking.

    Feel like Ive learned a valuble lesson the last few months in that theres no shame in asking for help when you need it :-))

    Regards

    Matt.

  • Love your blog it has cheered me no end. If i'm honest thought i was done for after being told i had RA Like you i try to keep reasonable fit not as much as you do. I walk and swim.I do feel okay. Most of the time.

    Hope you are soon back on your feet,and back to normal xxx

  • I felt exactly the same all those years ago .

    Just go with how you feel and excersise when you can and when your struggling with things ask for help. :-))

    Matt x

  • Great blog and I agree Attitude is Everything xx

  • Thanks for much

    Matt x

  • I always feel for people who get this young, as things are hard enough without having to cope with chronic disease too. I'm really not sure how I'd have amanged as I found being diagnosed in my 50's hard enough. And well done you for listening to the advice of good attitude, right treatment and healthy lifestyle - as sounds as if you managed extremely well, so v sorry that it's rough for you right now. thanks for telling us your story. Polly

  • Thanks Polly :-))

  • Amaizing story Matt, you've got a great attitude and like the last time I'm sure your going to make a great recovery again.

    Good Luck. :)

    Tony

  • Cheers Tony :-))

  • Thank you Matt, I have been dealing with RA undiagnosed for dome time then had the bombshell dropped last November move from Oral mtx to injectable. Worse thing is still in lots of pain do may need dome tweaking at review but I still work full time slightly changed duties. I have gained at least three ston in last year since stopped training 4 times weekly which I know impacts, motivation has been low but at slimming world tomorrow and getting my fet ass on my bike. I used to pump lot of iron which no doubt didn't help. Your story is inspiring and one I can relate to more then most.

    Will

  • Cheers Will,

    Yep RA really does have a massive impact on your life , and Ive had to accept Im probably not going to be the same again as Im likley to be walking with crutches for quite some time to come and I will find walking difficult at times , but I will adapt my excersise to suite the fact that Im struggling with walking , I can always sit down and do upper body stuff Lol

    Keep your chin up and accept the fact that sometimes we have to adapt exercise to suit our condition.

    Regards

    Matt

  • Matt..what a truly inspirational blog thank you. I too have been diagnosed with RA for about 13/14 years although also for most of my life i had Palandromic Rheumatism, this was intermittent and whilst wasn't particularly bothersome, i was told it could develop into RA later on.

    I have also like you been extremely active in my life with horses - i.e. showing and eventing. I also am a piano teacher, so my hands need to be working to the extreme!

    Unfortunately it then became Progressive RA and was put on Sulphazalazine (along with Diclfenac/Ranatadine) which was nothing short of a miracle drug for about 6 years. This then stopped working, so my consultant put me on MTX of which i am sure most will agree too, is a love/hate relationship!

    They put me forward as a good candidate for Embrel and it was whilst waiting for this to go through all the loopholes, that my right hand developed the usual horrible characteristic look of the dreaded RA. It now swerves to the right and doesn't look terribly attractive, although family and friends say they don't notice it, I KNOW - and also now sadly my piano playing has diminished in quality, but i refuse to let it stop me and have developed a way to keep playing, although with much more difficulty now.

    I am now 51, I still ride my horses and do all activities around them, which is hard work even at the best of times but i will continue to do this with as sunnier nature as i possibly can, but some days it can really get you down, but i try not to show it and carry on, this alone helps me to continue.

    I really do feel that we are in a war with this disease, we have to be strong and supportive, and it is people like you and everyone on here, that give us all hope.

    Thank you

    Sara

    stable-antics.com

  • Many Thanks for your kind wishes Sara , very true about adapting what we do to suite our condition

    Regards

    Matt

  • I read your blog & agree with everyone else, you are inspiring, you have such a great positive attitude. I feel a bit of a fraud as I have not been diagnosed with RA yet but have a lot of the symptoms of RA & a strong family history. My sister who has sero-negative RA is convinced I have it, especially because I am now starting to show a lot of damage in my hands & wrists. I was diagnosed with fibromyalgia & osteo arthritis 13 years ago which makes me feel exhausted at times & can be painful. I turned 60 a week ago & think myself lucky that I didn't get these problems at a young age like yourself & some of the other bloggers on here. Hope you get to feel better soon. Franbie

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