Diagnosed with Rheumatoid Arthritis...........house falling down around us!!

LoopyLinz

I am so touched by all your lovely replies. It really means a lot to know you have all taken the time to reply with all your good wishes and handy tips and hints. All of which will definately be taken on board!!

Going to pop over to the flylady thread and hopefully get my house in some sort of order. And definately going to use my 'good times' to do some batch cooking and freeze.

Think my big fear at the moment is fear of the unknown. Im scared that things are going to get ontop of me and I wont be able to cope. Trying to convince myself that I will find ways of adapting and hubby will be getting lots more little tasks to be getting on with!

xoxoxox

luxor4t

Hi there,
I have rheumatoid arthritis too. This time last year my hands/wrists were badly swollen and my feet were very painful. At the worst time I could not walk any distance and had to have help dressing & cutting up food etc etc. I was off work for eight months.

I am back at work part time now as I still get very tired, but am far more able in the kitchen so we don't have to live on OH's cooking anymore . It felt like forever, but my meds did eventually kick in & I learned how to get the best out of each day - usually the hard way .

When my wrists were very painful I bought a battery powered can opener and a couple of jar opener things, and my dad made me a little wooden block to stick on the end of my sharp knife so I could use two hands to chop. The food processor a was great help, if somebody opened it for me :rolleyes:

I found the Arthritis Care website the best for advice on living with this horrible condition: http://www.arthritiscare.org.uk/Home. Their forum is great: I don't post on it but have found lots of ideas there, including how to deal with people who assume that you can 'just change your diet and be cured' etc.

This site is also helpful: http://arthritis.about.com/od/inthekitchen/ss/cooking_tips.htm

You have already been given some good advice, I second 'keep warm' and add 'keep moving' as it is vital to stay as active as you can. Stairs were hell, & I had to go up 1 step at a time but I can climb up foot after foot now (well sometimes )!

McKneff

i know what you mean about the fear of the unknown, i had always worked full time, had a busy life, with 2 kids, and when i was diagnosed and in complete body pain i could see myself in a wheelchair, i didnt get a nights sleep for the pain for over 4 months, i didnt want to go on, i could see no work, pain for the rest of my life, but as time went on and the doctor gave me different anti infls and when one didnt work we eventually found one that worked and with those along with cortisone injections which were magic for me my life took on a completely different meaning, In my head i was 75% back to normal, and i just had to adapt to not going hell for leather anymore. It will get easier in time. as you adapt. I feel for any of you youngsters who have got this awful painful disease, i was 39 when i was diagnosed but i have seen even children with this and itis truly heartbreaking.

LoopyLinz

anniehanlon wrote: »

i know what you mean about the fear of the unknown, i had always worked full time, had a busy life, with 2 kids, and when i was diagnosed and in complete body pain i could see myself in a wheelchair, i didnt get a nights sleep for the pain for over 4 months, i didnt want to go on, i could see no work, pain for the rest of my life, but as time went on and the doctor gave me different anti infls and when one didnt work we eventually found one that worked and with those along with cortisone injections which were magic for me my life took on a completely different meaning, In my head i was 75% back to normal, and i just had to adapt to not going hell for leather anymore. It will get easier in time. as you adapt. I feel for any of you youngsters who have got this awful painful disease, i was 39 when i was diagnosed but i have seen even children with this and itis truly heartbreaking.

Thank you so much, hearing about how other people cope and deal with this makes me feel just that little bit more positive!

One of the big things for us at the moment is that we had just started trying for a baby and obviously now that has had to be put on hold. Keep thinking that it will never happen but hubby says I just have to learn to be patient, take one day at a time (not something Im all that great at!)

dronid

So sorry to hear about your condition. My grandmother suffers from it as well and to have to cope with it at 24 must be challenging to say the least. Marguerite Patten, the cookery writer also suffered from crippling arthritis which left her pretty much incapable but managed to treat herself with diet and released a book with details of the diet. I'm hoping it might help in some way. It's called Eat to Beat Arthritis and you should be able to find the cheapest copy of the book (apart from second hand) on the link below.

http://www.find-book.co.uk/0007169663.htm

I got a copy for my grandmother and she said she found the diet a little difficult to adapt to, particularly since she's 90 this birthday and has her ways but I'm hoping you might benefit from it.

I hope it's helpful.

SUESMITH_2

LoopyLinz wrote: »

Wow again thank you for the very practical advice, chopping/prepping whilst sitting down would never had entered my head.

Another probably totally stupid question on my part but can you freeze mash potatoes?? Do they not get really wattery when you defrost them?

xoxoxox

mash freezes really well, if any left over i always chuck it in the freezer either just to defrost and eat as it is or until i get enough to top a shephards pie.

if you like mushy peas (i dont but everyone else here does) they also taste just as good after being frozen so i always make loads and batch freeze them.

hope this is some help:o

SUESMITH_2

just seen as well you were talking about babies - you will probably find that when you're pregnant you go into remission and fell much bettter, this is because as you're prob aware rheumatoid arthritis is a an inflammatory condition to do with your immune system and obviously your immune system is suppressed otherwise your body would reject the baby. does that make sense? (used to work in orthopaedics)

hope this isn't seen as medical advice, please go and see your specialist and ask

ceridwen

I dont have personal experience of this illness and I do note the comments re diet not improving things from one poster. I guess its horses for courses. For some people it obviously does at least help. For others - maybe not. Having said that - the books I have come across on this theme are:

"curing arthritis diet book" and the rest of that mini-series by Margaret Hills, SRN

Well - you have nowt to lose by borrowing them from the library and having a looksee.

kittycat07

In some ways a diagnosis is good - at least now you know the nature of the beast and can have a reason for feeling bad when you do.

Most people do not know what it is - they think that it is the same as osteoarthritis. You need to be careful about accepting advice because some of the advice differs between RA and OA (particularly about diet and types of exercise). I was diagnosed at the age of 19 (having had 4 years of wondering why I constantly felt tired and rubbish) One of the most difficult things about RA is the unpredictable nature of it. Have you been referred to a specialist? If not push for this as they really can help with questions and advice on what to do as well as having specialist knowledge about the best - and most modern treatments. It's worth doing your research about the illness and also showing people around you. That way if you're having a bad day people will have a greater understanding about what you're going through.

It'll take time but you'll be able to figure out your triggers - those things that make a flare up worse. For me white wine is an absolute killer (red wine less so). Having said that if I'm not too bad sometimes I'll have some and be damned!! I disagree with anyone who says that diet has no bearing on it!!

As for trying for a baby - as a previous poster has said from what I understand (having not yet had kids) you are likely to go into remission during pregnancy though may relapse after. You, of course, need to be careful about what drugs you can take for RA when trying (and if you've been prescribed some of the stronger drugs you may be advised to wait a while before trying - check with your specialist / doctor).

The one good thing is that for some (I'm not a dr so don't know if it is all / many / a few) it is a disease with remissions. That is to say there have been times when I've been having to take tons of tablets each day and have steriod injections, then literally within a couple of months later suddenly it'll go. For me anyway, there doesn't seem to be any rhyme or reason as to how long it'll be bad for and how long it'll be fine for!

As for day to day it's worth doing what you can when you can. I batch cook and freeze down so that if I'm not great we always have nice food ready to be heated up. Ironing I do when I can - if not I get hubby to do it!! I like flylady and have a timer for her "you can do anything for 15 minutes". Even if I'm feeling rubbish I try to do the 15 minute thing - even if I need a rest after and I feel better for it.

Good luck!

pinknfluffy

Hi Loopylinz

I have RA and was diagnosed with it at 24 like you. I was pregnant with my second child when it started and very nearly bedridden for the first few years of his life.. then told i would be in a wheelchair by the time i was 40 (then the children's dad left me with a child of 10 and one of 4)don't be too proud to ask for help, Fast forward 20 years i think i have swallowed or been injected with every drug known to man and tried every fad diet going looking for a 'cure'...I am remarried now work full time and am studying for a degree with the ou and i am NOT in a wheelchair...positve state of mind is the key. i'm vegetarian which i think helps, i don't eat citrus fruit or drink wine as this does affect my joints (everyone is different) my oh does most of the ironing and heavy housework.

We have a slow cooker we batch cook veggie or mince bolognaise/shepherds pie and freeze it. i can't peel or mash veggies as hands are too weak so oh does it and i freeze leftovers or sometimes i buy stuff already prepared (not very mse but needs must and all that...)

Make sure you get to see an RA consultant and tell him/her exactly how you feel don't try to put a brave face on it...About 6 years ago i was prescribed an anti tnf drug and my life changed radically for the better i'm now on one that i self inject at home it is not quite so effective but still helps...

The arthritis forum link that was posted is very good for finding out all sorts of things about RA from drugs to gadgets to make life easier.

Sorry about the long post but as have suffered with RA for so long have plenty to say