Coping With A Ra (Potential) Diagnosis

[Retrochic]

Following a few random symptoms such a a rash that appeared and was diagnosed as stress related psoriasis, and swelling of feet I thought was the result of rushing around doing too much, the GP took tests and on Friday I got some back. My Rheumatoid factor which is supposed to be less than 20 -was 650. He remarked this was the highest he's seen on first presentation of possible signs of Rheumatoid Arthritis. Well I don't 'do' doctors and looking back perhaps should have gone sooner but it was the inanimate objects that were ganging up on me, the typing keys not doing what they should, the jar lids welded on, the cart food pouches being made that much tougher to open. Because of the holiday weekend he could not get me in to see the Consultant, but following an appointment with GP this morning I'm hoping to see him later today or tomorrow and he's temporarily put me on 30 mg of Prednisolone taken all at once daily.
My question is not so much a medical diagnosis, as advice on how this condition (should I have it) impedes on daily life. I am very active and when not working I'm gardening in the summer,horse riding,swimming playing tennis. Is there anyone on AB managing to cope with RA and lead a fairly active lifestyle and what are the best coping strategies? -Any food or supplements you have found useful? And has anyone tried Complimentary things such as Acupuncture? Thanks in Advance.

[anneasquith]

I can't really answer your Q retro. but hope your appointment with the consultant is productive.

[Eve]

Hi, I have RA, as do some others on here.

That's a bit of a huge question really and no easy answer. There are all kinds of variables, it affects people differently, your state of health generally, how early they caught it, how well you respond to medications, side effects, any linked conditions, how long meds work for, your age... so many things. It doesn't follow a defined path really and there are new developments around coming on.

Sorry that doesn't really answer much of your questions but if you do get a diagnosis of RA, and that isn't necessarily straightforward, then I can help answer other questions for you that I can.

My personal story may not help you as I have had it for some time how and it has had a significant effect on me (though I have other conditions too) but I've met other people who it hasn't affected nearly as badly, some worse, it's a bit of a wait and see and a lot of trial and error with meds.

Pred is good stuff (though beware the munchies :)). Just make sure they look after your dosage and wean you off slowly if you are on a high dose for a while.

NRAS and Arthritis UK have a lot of information on their website and I have a few groups on Facebook who post some useful information if you want the details at any point. Firstly though, investigations need to be done and a diagnosis made before getting yourself too much into the mindset of having a set condition.

I'm sure if it is that there will be plenty of questions along the way. Don't go scaring yourself reading up too much on it and the medication and you can scare yourself silly online when you don't need to.

I hope this helps, I feel like I'm not being too helpful but I hope you will get what I'm saying.

[Eve]

Another thought, if you have any signs of inflammation (and patches of psoriasis) etc... then it might be an idea to take photographs to keep a record, especially if it is things that may settle down before you get some tests done, similarly things like inflammatory markers via blood tests, ultrasound images...

Not a bad idea to keep some kind of diary/track of symptoms generally.

Am very impressed if you are seeing a consultant today! Took me months from what I remember, on the NHS.

[Retrochic]

Thanks for your great input Eve. I saw the GP again today and have a consultation Friday as that's the only day the consultant is at my nearest private Hospital. Yes I'm going private as I have insurance. At the moment the steroids are keeping the inflammation of my hands and feet to acceptable levels but I've been advised to take pics in case the swelling goes down,just to show the Consultant how bad it was when I went to the docs.I don't really know what they will do on Friday but I'm remaining positive and thankful I went to the GP when I did. Thanks again Eve your input I'm sure will be invaluable, its easy to find things out on the t but better to listen to real peoples experiences. I shall update when I get some sort of diagnosis.

[Tilly2]

Best wishes, Retrochic. I can't help at all but my Mum was diagnosed with RA at 36 and, consequently lived a life of pain. I hope that your early diagnosis will mean that it can be held at bay for some time.

[Prudie]

Best wishes from me too. I know little about it but on a positive note I work with 4 people who have this and they all hold down full time jobs and full lives because they've been lucky enough to have good medical management although I believe it was a struggle for them at first. Obviously others may not be so lucky.

[Retrochic]

Thank you, I really appreciate your encouraging words. Its been a bit of a shock going from a very active,independent busy person to one that can't get her shoes on, or walk without pain, within a matter of weeks. Scary stuff roll on Friday .

[bednobs]

hey retro, i too was diagnosed with RA that had had a very sudden onset - i was 24 and went from working as a nurse on a busy ward doing 13 hour shifts to not being able to get out of bed easily. As i remember it it was overnight almost, although my common sense tells me it couldn't really have been!
I am with Eve in that it is different for everyone, AND different for each individual at different times. I am on some fab medication atm which is making me feel well, but it's been rather up and down over the course of the last 17 years. At times i've had to use a wheelchair, at times a frame, at times i felt so well i've practically been skipping :) You msut learn how to protect your joints - for example use bigger joints to do things

[bednobs]

ps i am still working full time all this time later

[Eve]

No worries. I've found it a huge relief to be able to chat with people on here and get some great advice, from medical people, fellow sufferers, bednobs especially has been a huge support, and generally, even just having well wishes and somewhere to get things out.

Just wanted to wish you well for tomorrow and just remember we are here whatever they say. It can be good to have others to ask about things, tests, meds etc... as it can take a while (unless maybe you medical or other knowledge of the condition) to get your head round some things or, depending on your support network, just knowing other people are around to ask without the potential issues with googling things.

I hope it all goes well for you. Can you take someone with you as an extra pair of ears and not a bad idea to make a note of things you want to ask before you go in (helps me) and ask if they have any guidance booklets about things you might take about. My clinic have all sorts of booklets, mainly NRAS and Arthritis UK ones.

[jomifl]

The wife of a friend of mine was diagnosed with RA, she found the least task an effort and was to exhausted to do very much. A friend suggested she get a dog as gentle walking would help. Well she got a border collie, the RA vanished and she and her dogs now an enthusiastic dog agility competitors.

[Eve]

RA can go into remission and some sufferers can live pretty normally between flares. It is different for everyone.

[Tilly2]

How did you get on today, Retro? I've been thinking about you.

[lcg]

you can still do everything you usually do, but in moderation! my arthritis causes me chronic pain, which is not fun but i have learnt to live with that and take loads of meds to alleviate things. i can't walk/cycle as far as i used to, but i still work as a nurse and have to rest adequately to ensure i am fit to work. if i do things like paint the living room in a day, it causes agony and lots of swelling for a few days, but it does recede after a while. the less fun part for me is falling up and down stairs at times, tripping up and banging into things - i have definitely got more clumsy since my diagnosis. it is frustrating if i have a 'droppy day' (where i drop absolutely everything i pick up) but can be fun if i pass things to people and end up throwing stuff at them instead!

no foods or supplements will help. meds will, and so can physio, gentle exercise, massages and acupuncture (but everybody is different!). it is life changing and a lot of hassle......but you will learn to live with it and alter your daily living/routines to cope with it. my ONLY advice is to be good and take all of your medication (keep going back to your gp to get meds right, or request a referral to a pain clinic if it is bad), pace yourself with all activities (it will be no good stopping and starting intense periods of activity, work or exercise- it will just hurt and cause swelling/oedema), and be kind to yourself - learn to relax and take periods of rest where you do things that make you feel good.

and if you find that your illness takes a toll on your mental health, fess up and tell your gp, get it treated. depression and pain are intrinsically linked in the brain and they fuel each other; the more rubbish you feel, the more pain you will experience; and the more pain/struggles you have will make it more likely that you will develop/increase levels of depression. i have both and take 34 pills a day......but i will carry on with my life and do as i please. yes my life is more difficult now, but planning ahead and taking more time helps enormously - i will be dragged off kicking and screaming before i give up on my life, what is important to me and letting my illnesses win.

google your illness, coping strategies, medications and talk to people......knowledge will help you decide how you want to manage things......and try everything you can until you find things that work! it will be ok, but it is obviously a shock, very new to you and a it overwhelming. but you can have this illness, an still have a life. good luck x

[Tilly2]

Let us know how you got on, Retrochic.

[Buenchico]

Information from relevant charities:
http://www.arthritiscare.org.uk/LivingwithArthritis

http://www.nras.org.uk/ra-self-management-programme

https://www.arthritisaction.org.uk/living/self_management

(There are lots of links from those pages which might be helpful to you).

[Retrochic]

I went to see the Consultant Rheumatologist yesterday who after examining me and reading the history leading up to problems said there was evidence of pain and swelling in joints of the hands feet and neck but he is unsure as yet of the cause. Best scenario is that I've had a virus that has sent my immune system into overload (RA factor of 650) and it will settle between 6-8 weeks. He has advised to continue with Prednisolone for 5 weeks starting with 25mg (5 tabs) gradually declining to 5 mg ( 1 tab) then he will see me the following week. Meanwhile he will take further blood tests. If after 6 weeks, my symptoms are better, or greatly improved, he may put this down to a virus, though I've had no real signs of virus I can think of. If my symptoms return following cessation of the steroid then he will presume its either Psoriatic Arthritis or Rheumatoid Arthritis and will commission further tests. He said its pointless starting any other meds than steroids until we know what the cause of the inflammation is. If my symptoms get worse while taking the steroids he wants to see me straight away. He added he's not a betting man but if he was he'd put money on it being RA with me having two aunts and a grandmother suffering with RA. The steroids are giving relief, but its still painful to walk and struggling with dexterity of hands,taking off lids,opening pouches of cat food. All I can do is remain positive and take all my meds . The Consultant was very optimistic that even if its the worst scenario and I have RA the prognosis is good as its a first flare up and hopefully can be treated to allow me to continue as best I can with my activities. Fingers crossed (even if its a bit painful to do that at the moment ) lol!

[Retrochic]

lcg thank you so much for that long reply, this is just what I need,real peoples personal experiences and I really appreciate you taking the time to write that. Very useful and you have hit on a few pertinent points -especially about taking meds as I'm of the type that will only take anything when I'm on my last legs but will have to take these to stop me being on my last legs. Last week I felt 20 years older than I am,shuffling along with pain at every step, this week my feet feel a bit better and will NOT give in!

[Eve]

I've been looking out for you to reply and thinking of you.

It is a difficult time, lots of stuff going on in your head and no definite resolution to be able to get on with a treatment plan as such, save it being a nasty virus. I wondered when you mentioned the psoriasis, I have a cousin with PA and quite similar to RA.

Sounds like a pretty sensible course of action. Pred is good stuff and glad he is going to wean you off generally. It is amazing for inflammation but can have other issues.

Please ask if you do have any questions about coping in the meantime. It can be so frustrating and get very upsetting when you are stopped from doing things you wouldn't even have thought about doing before. Take it easy and try not to aggravate any joints, preventative action is also important.

Good for them to have a number of results to look at such as bloods, especially as pred could mask some inflammation, especially if it isn't at a high level at first. Similarly with ultrasounds, did they do one on your hands?

I remember that was a turning point for me, when a GP had put me on a high dose of pred for a flare but they could still see the disease activity in my hands on ultrasound.

I've got to get going as need to get out (hence the rather garbled message) but will be back and about later on.

You are not alone so please if you need to, however, daft you think it might sound.

Take care x

[Retrochic]

Thank you Eve x