Hi, just been diagnosed with RA and vasculitis

slomo

Hi everyone,
I've just been diagnosed with inflammatory RA and large vessel vasculitis and came across your website and forums. I've never really been a forum kind of person but thought I'd join as you guys sound like you understand the practicalities of the illness. I've been blessed with good health up till now so this is a bit of a learning curve to-ing and fro-ing to the doctor. I'm just over 60, live in the north of Scotland and work part-time (won't get my state pension until I'm almost 65.)
I've found the rheumatic fatigue hard to deal with - more like total exhaustion - and my GP has signed me off for a couple of weeks and I've just started Methotrexate. Me and Google have become best buddies since I first went to the GP a few months ago and he remarked that I wouldn't understand what the c reactive protein was! well, now that I've seen the rheumatologist and been tested and x-rayed and scanned it seems he was right in his first tentative diagnosis.
I'm not doing very well at pacing myself but I'm trying and my husband's not doing very well at knowing when to help and when to let me do things myself but he's trying too (!).

hope I've not inadvertently made any dreadful forum etiquette blunders

best wishes to you all

slomo

moderator

Hello
Welcome to the forum, I am sure you will find support, advice and light relief.
I am one of the moderation team, and we all have one or more arthritis conditions or are looking after family member with the same. If you need help with any technicality of the forum just get in touch via a personel message.
Best wishes
CK Moderator.

stickywicket

Hi slomo and welcome. I'm not a 'forum kind of person' either. In fact, you'll find that, for many of us on here, this is our one and only – for obvious reasons.

Well, this certainly must have been a steep learning curve for you. Inflammatory arthritis and vasculitis after what sounds to have been a healthy life up until now. Well done on sounding so upbeat.

I do hope the meth will allow you to continue working. As you'll see from reading posts on here, it's a bit of a lottery which meds work for who but, just to encourage you, I've been on meth and hydroxychloroquine for about 15 years now for my RA and they've done a very good job for me.

Learning to pace oneself – and continuing to do so – is one of the hardest things. I'm 54 years in now and I still get it wrong at times. Often just by overruling my wiser instincts :roll: As for husbands – oh, they can be very trying Let's be honest, it's tough for them, too. We can't expect them to intuit when we want help and when we prefer to soldier on. Arthritis affects all members of a family but in different ways.

Do beware of Doc Google. Some sites are much safer ie accurate than others. You sound as if you're on the ball though.

As for 'forum etiquette blunders' – I'm not sure we have any but, if we do, I've probably been there and done that long before you Welcome aboard

theresak

Hello Slomo, and welcome, though I`m sorry you have had to find us!

I think the fatigue which comes from the inflammatory arthritis is very hard to handle - I think most of us on here are inclined to push ourselves in an effort not to give in to what we`ve got. Pacing yourself is an acquired skill, but a valuable one.

As Sticky said, finding the right drug can be a lottery, and a very frustrating process, but once you find it, hopefully things will improve.

Which part of N Scotland do you live? We usually go to Scotland in spring & autumn, either to Nethybridge, in the Cairngorms, or Lochcarron/Plockton. Not so many midges about then! We live in NE England, in Durham.

Do keep posting & let us know how you are getting on.

Tezz x

slomo

thanks stickywicket and teez for the welcome.
yes, I do still need to learn how to pace myself - even in the sense of walking pace! I've just 'nipped out' to buy some milk and although my head is saying to hurry along, it'll only take a minute, as soon as my feet make contact with the pavement, my bones rattle all the way up my spine. Looks like I'm going to have to practice being one of those rare elegant people who appear to just float along! :lol

many years ago we used to caravan in the North of England often in the Durham area so I know roughly where you are teez. Equally long ago we used to live in the Aviemore area so again I know where you're meaning. We now live in the North East of Scotland, west of Aberdeen, so we're in the Grampian Health Board area. So far, nothing bad to say about them as I only went to my GP in April and that's me diagnosed by July - pretty decent timescale, I think.

all the best
slomo

stickywicket

I'm glad all is well with the docs. Having a good relationship with them is so important for those of us who have an incurable disease.

Yes, it sounds as if your head hasn't quite got to grips with the slower pace of your body. It will

Saltdog

Hi Slomo,

I thought I'd catch up with your thread since you were very kind to visit mine. Sorry to hear that you feel the need to come to this forum at all but it seems to me that it's a good place to be. Certainly everyone I've had contact with so far has been very helpful and friendly.

I too live in North Scotland although I would definitely call where you live, 'Doon Sooth'. I have, however spent many an hour in both ARI and The Albyn Hospital since first experiencing pain in my shoulders. I can't really fault either although for the Albyn I'd say that I've stayed in worse hotels in Aberdeen!! It makes the whole process of having medical treatment that little bit easier.

I hope you and Stickywicket can learn to be patient with your husbands. I myself have a very caring wife who is of the opinion that the more physical jobs around the house I do, the better I will feel. She means well though and more than once has stopped me getting in to a terrible black hole of self pity. My kids are also the best drug I could possibly ask for to make me feel better.

I hope your meds work for you Slomo and you keep enjoying life.

Kev X

Elgnay

Hi Solmo

The fatigue is horrible isn't it? Have you heard of the spoon theory? https://en.wikipedia.org/wiki/Spoon_theory It's been quite useful for me to help plan my days/energy.