Mostly good days, am I a minority?

I have only been diagnosed for a couple of months, my blood results suggest the meds are not working yet but although I'm hindered by swollen hands, wrists, shoulders mainly; I think I'm lucky not yet to suffer from fatigue or side effects but I do understand RA being un-predictable.

The worst for me was (still is) coming to terms with it all.

Also, I have read somewhere the first couple of years is when the most damage can be done, Would you agree?.... although I've just been diagnosed the first signs started 16 months ago, with the first flare in Jan this year; again, I'm lucky not to have any permanant damage yet.

Last question!

I understand if I do too much I will get tired but if I walk too far (I used to walk for miles and miss it) and there is little discomfort in my feet to start with, could I cause my feet to get inflamed? I did ask nurse but she said if they are inflamed then rest but I feel lucky not to be effected in my feet at the moment and I don't want to 'bring it on'

This Question section is a fantastic idea!

Many thanks for any replies :)

9 Replies

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  • Hi Wiliby, the hardest part of RA is accepting what is happening to you, don't think about what could happen as everyone is different.

    How much damage is done generally depends on how aggressive your RA is to start with, it's when the disease is not well controlled that the damage occurs.

    So many new drugs are available now, mine was never controlled years ago so know I have lots of joint damage hence all the ops I have since had.

    Much as been learned over the years and consultants have made many changes in treating the RA.

    If you feel ok and not got the fatigue yet then that's good, don't automatically think you will be the same as everyone else, we are all different with our RA, and therefore treated with the drugs that will control our symptoms of the disease.

    The feet are not always affected, and if you can manage long walks then go for it you know how you feel, I know I would, just listen to your body you will soon know if you have done too much, then you start to pace yourself. Your nurse is right if your feet were inflamed you would know then of course you would need the rest.

    Just remember we are all different, some of us affected more than others and some able to live a good life with RA.

    Take care and try not to worry.

    mand xx

  • Thanks for that positive reply, I was a bit apprehensive about posting this question, your reply especially as you have had such a bad time but are able to support the less affected like myself.

    I agree, accepting is the hardest part but I'm glad to say I don't feel so self-obsessed as I did only a few weeks ago, the answers I got from this really helped, so much so I rang work and told them I was looking forward to going back in August! (after maternity leave)

    Yep, makes you really appreciate the good days and what the consultants can do!

    Thanks again x

  • Hi Williby,

    I feel I have mostly good days too. I did have a difficult time at the start, diagnosed about 3 years now. They say the earlier you are diagnosed the better the outcome, and the less damage. I was lucky to be diagnosed realitively quickly, from a very agressive form. Damage is swift & severe for most people. I had it worst in feet, and have damage in right ankle & foot. Also hands and in the early days shoulders and knees. My condition is now under control (fingers crossed, Touch wood etc etc)

    and I am able to take long walks, there was a time I thought I would never walk again!. Well I could go on & on, but a diagnosis of RA does'nt mean what it used to with the correct medication for you, and a good Consultant there is no reason why you can't have a good life. I thought my fatigue was from meds, my consultant said mostly was caused for me coming off steroids, she said my back ache was my weight gain again from steroids & change of lifestyle, and I now think this was true, but I needed to be on them at that time. Anyway, I am going on. My point is take each day as it comes, and don't be scared about things you read. My consultant told me it would be rare nowadays for me to be in a wheelchair. Stay positive & strong.

  • Thats really amazing, you've come a long way, these are the sort of experiences I've been desperate to hear, your story really gives hope, also the fact that it was so severe and was then controlled, oh would could go on but baby Amy has just woken up! it's a gorgeous day and I'm going to take her out in the pram!! :)

    Thank-you x

  • good advice from the ladies as usual x

  • It is a minefield isn't Williby. I was only diagnosed in October and on MX since December. I find I am having more good days than bad now. I do suffer with my toes and ankles and the bottom of my feet. It is so difficult to know like you say, how far can you go, how much do you do before you "cause" a flare which could then damage the joints??? I am in the same boat. The advice above is so good, and staying positive and keeping ahead of the RA is best. You have to learn what your body is telling youl.

    Take care Julie x

  • This is a bit of a change of subject but when you mentioned staying positive I had to have a giggle, I must have driven my husband potty as I noticed he 'googled' manic depression the other day!!!! I mean as you understand it takes a bit of getting your head round but I have had a complete turnaround recently and feel more like my happy positive self again...... I can't win :)

    So, yes still good, popped into work yesterday and ended up working for a couple of hours (I'm on maternity leave) and still felt good today.

    Can I ask, is the MX working well for you?

    cheers x

  • Hi Wiliby

    I have had RA for 9 years now and although I get bad flare ups (which of course are all relative) I can still manage to go out, go to work part time and do what I love doing, birdwatching. A word of warning. Don't push yourself or you will suffer for it. I went to an RSPB site the other week and felt really good. I walked and walked and 2 days later ended up in A + E with my ankle and shin very swollen, red hot and very painful. It turned out to be over use. Better to stop short of what you want to do and that way you will be able to do it again the next weekend.

    Best wishes

    Sheila G x

  • I'll keep that in mind, I forgot until you brought up you ending up in casualty, before I was diagnosed I was becoming a regular in our casualty dept but then I thought I was just clumsy...

    We have red kites (is that right) nesting not far from us but rarely see them, amazing birds :)

    Thanks Sheila x

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