New to RA and scared

happymoocow

Good evening everyone!

I hope you're all well this evening.

I was diagnosed with rheumatoid arthritis on thursday. It's all happened so quickly, and I'm only 33. I know thats not young, but still! Lol. Started having trouble with my knee about 12 weeks ago. It felt weak and as if it was going to snap forward and i felt like I was going to fall. Went to the gp and he said it was a damaged tendon and to rest.

Well life went from bad to worse! My other knee joined in and i had a lot of pain when walking. Since then my feet, ankles, hands, wrists and fingers all swelled up to crazy proportions. Very uncomfortable, and my fingers are very sore.

GP did lots of tests and arranged for me to see the rheumatologist which i did on thursday. He gave me a quick check and confirmed RA. I was given a steroid injection in my bum, does anyone know how long it usually takes to work? I think it is my pain is significantly reduced but i have bad shoulder and top of my arm pain so much so that i can't lift my arms. My feet and ankles are still huge.

I've started on the sulfasalazine, he's going to give me the drug that starts with an M soon but can't right now as there is some inflammation round my heart. Im really hopefull that i'll respond well to the treatment, i just need to get over this initial couple of months.

I hope to make some new friends who understand what I'm feeling right now.

Lots of love

Mhairi.

trepolpen

hi Mhairi , welcome to the forum , you are not alone here & some of us have put up with RA along time , almost 20 years myself

the drugs they are putting you on is pretty standard , been on sulfasalazine & Methotrexate for all my RA + they got some new drugs but we have to try these Disease-modifying antirheumatic drug first , so looks like they are fast tracking you which is good , but they will take some time to work & thats why they given you the steriod injection

realy hope you start to feel a bit better soon

dreamdaisy

Hello, welcome to the arthritis rollercoaster, it's nice to meet you but I am sorry you have had to find us. I am eighteen years in now but unlike you didn't get any meds for the first five years because my then GP was a dolt and I was too trusting. Yours sounds very different and that is good.

Right, the meds. Steroid injections sometimes work and sometimes don't. I've never had much joy from them but others get on far better and I hope you fall into that group. The injection may help you to 'feel' better (which is always a good thing) but they are not a long-term solution. It should, hopefully, help to reduce the inflammation which means you can start methotrexate sooner rather than later. I inject my meth and have very little trouble with it but you will probably be started on the tablet version. Ask about folic acid and ensure that you have your bloods done regularly, that is very important.

Welcome to the weird and not-so-wonderful world of auto-immune arthritis, no question is too silly or too small so ask away. I wish you well. DD

LignumVitae

Hello from me

I used sulphasalazine for a few years to good effect but eventually settled on meth which worked amazingly for 7 years. Until recently I always got a very good response from a steroid jab, the problem often being that I felt so much better I started over doing it which then sort of tired the use of the steroid out so if you do feel better please don't see that as a green light to go mad! They usually last for 3-6 weeks by which time hopefully the sulpha will be helping you a bit.

I've made lots of friends on the forum and asked lots of questions, some stupid! Feel free to join in, the forum was a lifeline for me after dealing with arthritis alone in a bubble for quite a few years. It makes a huge difference being able to share problems with people who understand, have been there and can offer ideas.

LV

happymoocow

Thank you so much for the warm welcome everyone.

Yes my GP was very good in getting me an appointment with the rheumatologist so soon. I've read lots and I know that I'm very fortunate to get started on medicine so soon. I'm confident that my condition can be controlled.

I have to say you're all so brave in the way you handle things. I hope to be as brave once it sinks in! I've went from a very active full life to being unable to walk in a matter of weeks. It's scary and devastating! I'll be fine tho, I'm a very positive person.

I had the steroid injection on Thursday afternoon, should it be working by now? I'm still in a lot of pain and the inflammation doesn't seem to have changed at all.

Thank you again for the lovely welcome. I'm so glad i came across the forum

xxx

theresak

Hello Mhairi, and welcome - though I`m sorry you have fulfilled the criteria to join us!

Sulpha was the first drug I was given after diagnosis, then methotrexate - neither did a great deal for me in terms of controlling the RA, but there are many other drugs out there these days which can help. I benefited from the steroid jab while waiting for drugs to work, and have usually had a positive response to them, so hopefully yours will help you.

The period after initial diagnosis is a frustrating one, as it can take up to 12 weeks for meds to kick in, and you are also dealing with a whole new set of circumstances and anxieties. Is there a specialist rheumy nurse you can talk to if you have questions?

All of us here can understand how you must be feeling. I`m several years into my RA journey now, but can well remember feeling quite bewildered and scared about the future - which I now know was perfectly natural. You need good pain control, so don`t be shy of asking your GP. You should also be entitled to a flu jab, as you are immune-suppressed, which will make you a bit more vulnerable to infection.

Do keep posting and we`ll try to help when we can,

Tezz x

villier

Hi and welcome to the forum as it is OA and PMR I have I am afraid I cant help on the RA. I just wanted to say hello and wish you well................Marie x

barbara12

Hello Mhairi and a warm welcome from me,you will find this forum so full of information and of course support,it is scary when you are first diagnosed and many find it helps a lot to talk to people that understand.. and we are always here for that..

mig

Hi ,Welcome from me too,check out the chit chat page you will see we are all happy madcows,its nearly halloween join the covern if you dare. Mig

happymoocow

Thank you everyone, you're all very kind. I just wish this injection would start working so I could feel at least a little like myself again!

I'm looking forward to getting to know you all.

Xxx

dreamdaisy

This is your introduction to the very odd part of an auto-immune arthritis and the meds that deal with our conditions: sometimes they help, sometimes they don't. Before something like this strikes we are under the impression that if we take a few tablets we will get better. Arthritis doesn't work like that but you are in with a very good shout of something better happening for you because it has been recognised so quickly.

I know from reading other posts on here that RA can progress very quickly, it appears from nowhere and you don't know what's hit you. My auto-immune (psoriatic arthritis) began in my left knee in 1997 but I didn't begin my first med until early 2002. I'm now eighteen years in, I am on a triple therapy and have around forty affected joints (and osteoarthritis too in some very useful ones) so it's been a slow deterioration for me.

One of my key 'treatments' is laughter - my Dad gave me the psoriasis which turned up after the arthritis but he also donated a sense of humour for which I am very thankful. I do not focus on the pain because that makes it worse, I divert my thinking into other areas of life such as reading, telly, I am trying to get into cooking (which I dislike but am beginning to slightly enjoy) and, in the dead of night when my arthritis orchestra is doing its Schoenberg best, concocting ridiculous alphabet lists (here's an easy one to kick off, animals, for 'x' you can either have ox or fox).

We know what it's like whereas those around you may not have such a clear idea. Two useful things to read can be found on-line, The Spoon Theory and There's a Gorilla in my House. They might help you too. DD

happymoocow

Oh gosh daisy my heart goes out to you. What a wonderful attitude you have tho!

The pain I think at the moment doesn't scare me as much as not being able to lift either arm up. I'm scared of losing the use of my limbs. I'm waiting for the rheumy nurse to call me back, i should've asked my dr some questions but i was just so eager to get out of there lol.

Things will get better with treatment right? I'm sorry guys, I'm scared.

Thanks
Xxx

dreamdaisy

Thank you, that is very kind but save your heart for you: I have what I have, it is what it is, it will do what it will do but it will not defeat me. Of course you are scared and no wonder, suddenly all your certainties are gone (not that they were ever there but good health can blind one to that) and it is frightening. You won't lose the use of limbs as such, mine still work but not without pain thanks to my arthritis. My PsA is very well-controlled but I only know that thanks to my bloods, I don't feel the difference thanks to the OA. The fact that you have been 'found' so quickly should mean you don't end up like me so do your best not to, OK?

I have to go now, I have to start preparing our evening meal and I want that done before Strictly It Takes Two begins. I envy the girls but I could wear the frocks. I'll be back later. DD

happymoocow

No no, I'm a very determined person. As soon as i meet the physio and things I'll be working so hard to keep myself moving.

I'm obese but this year i managed to lose 6 stones through diet and the gym. The dr said there's no reason i couldn't get back to the gym so I'm praying for that.

Enjoy your show! I'm sure you'd put them to shame if u wore the dresses!

Xxx

stickywicket

Hello Mhairi. It sounds as if you've already made several new friends. May I be added to the list I've had RA for over 50 years and had a variety of meds. Around the millennium I got meth and it's been very good to me. I hope it works as well for you too.

I really wish I could give you some input on how soon and how well the steroids will work. Unfortunately there is no -one-size-fits-all with any of the arthritis meds. For some lucky people (including me) they have always worked well and quickly for about a couple of months but others get little benefit. It's a 'suck it and see' job, I'm afraid.

One thing that arthritis does teach even the worst of us (ie me :oops: ) is patience. We have to learn to wait and see and hope. Another thing it teaches is that there is an alternative way of doing most things which we'd never thought of before because we'd never had to. And it teaches that few things are as important as we thought. I can't lift either arm above my shoulders. This means that I have to position essential, everyday items on lower shelves plus I can't wash my own hair. That's all. Everything else I cam manage one way or another.

You lost 6 stones I'm totally gobsmacked. Mhairi, you can cope with this. You can cope with anything. And we'll be here to cheer you on.

happymoocow

I would love to add you to the list stickywicket!

I think I just expected to wake up on friday feeling better after the steroid. I'm up for promotion at work and have 2 assessments on Wednesday and Friday. I don't think I'll be able to attend on Wednesday, my feet look like the nutty professor they're so swollen! I'm really gutted. I've worked so hard but onwards and upwards i guess.

I'm so bewildered with it all. I'm sure I'll find new routines and i know i can handle it if its flare ups as opposed to this pain constantly. I just wish i could sleep for one night. For some strange reason i no longer pee at all during the day no matter how hard i try! I wake up every hour and a half at night tho bursting! I've had to learn to hover pee as i can't sit on the toilet and get up again! It's ok, my dignity didn't mean that much to me anyway! Lol.

Hearing from you all is wonderful. I'm so glad i found you.

Xxxx

dreamdaisy

Firstly, many congratulations on the weight loss, that is not to be sniffed at and keep up the good work on that front. Secondly, forget hovering, that is so not good for hurty joints. Social Services (many moons ago) gave me a raised toilet frame (the Mowbray, so always known in this house as the Pork Pie, or Pie for short) and it was a boon.

What work do you do? Your employers have a responsibility towards making your working life easier but I am no expert on that front: a read of the Benefits and Working Matters forum may be useful for you but not just yet. DD

happymoocow

Thank you! I was and am proud of myself!

Thanks for the tip. Who would i speak to in terms of getting things that can help? I'm currently sitting on the most uncomfortable chair in the world ontop of 3 pillows so that I can stand up, otherwise i can't get up at all. Do you have any suggestions for this at all?

I work in a customer service and admin centre. I just want to get back.


Xxxx

Sharon2960

Hello from me! I've just typed out a lengthy reply, thought I'd submitted it, but it seems to have disappeared somewhere!

Anyway, general gist was that I was diagnosed 18 months ago with RA, it was, and still, is a frightening time, wondering what's to come! I just keep taking the pills, attending for blood tests and consultations, and try to take each day as it comes - some days are much, much harder than others.

Hope the meds work for you soon, I'm sure our paths will cross on here - I don't post very often, but I'm a regular reader!

theresak

Hi Mhairi,

If you`ve got a rheumy team - consultant & nurse, physio etc., you should be referred to an Occupational Therapist, who will go through the things which can make life a bit easier for you. The day I got my diagnosis I spent most of the morning at the hospital, between different departments, including a session with the OT.

I suppose all hospitals are different, but there should be some means of accessing the OT. Or your GP could probably point you in the direction of Social Services. I have to say that the things I got at first we had to pay for.

Tezz x

happymoocow

Thank you guys. I hope our paths do cross sharon!

yes theresa, it is a department at the hospital. I'm just waiting for an appointment . Paying is fine, I'd just love some pointers that will help make me more comfortable. Being ill is bad enough but being uncomfortable is hellish too lol!

Xxxx

stickywicket

Mhairi, for home use you can self-refer to an Occupational Therapist. Look under Adult Social Care on your Local Government site. Alternatively, for stuff like a raised toilet seat you can buy them relatively cheaply from any disability shop including online ones but aproper assessment would be better for you. I'm not sure who you approach at work but they do have to help.

I don't think it can be at all good for you not peeing all day. Please let your GP know.

happymoocow

Thank you I'll have a look and see what i can find.

I did tell my GP, she put me on one water tab a day but I also told the rheumatologist and he told me he didn't like water pills and i should come stop taking them! It's really getting me down not being able to sleep for it!

xxx

dreamdaisy

And here comes another side to this malarkey - quibbling medicos. Your GP did the right thing so resume the water tablets if they make life easier, your GP probably knows a little more about this matter than your rheumatologist. I take a daily water tablet along with my blood pressure tablet and my rheumatologist has never questioned it. You are the one that matters in this, what you are living with and what you need to make that easier is what counts. DD

stickywicket

It's important for all of us who take strong meds, or a lot of meds, to keep our kidneys well flushed out so that they (at least :roll: ) function properly. This is maybe why your rheumatologist is against water tablets in that it's an 'artificial' flushing out or it might be to do with gauging, initially, how much of the fluid around your joints is due to the RA but I'm only guessing.

I know, from previous posts that DD drinks a lot of water during the day so, despite the water tablets, her kidneys will get several daily showers Maybe it's not so easy for you if you're at work but, oddly enough, for fluid retention one thing that helps is more fluid. This is complicated, Mhairi. I guess, from your point of view, it's the constant waking in the night that's the problem but I do feel that, if the docs are not aware that you don't pee at all during the day, they should be.

dreamdaisy

I do drink a lot of water, luckily I quite enjoy it. I average around 3 pints a day, in fact I have a glass on the go right now. I also swig a few mugs of tea but very, very rarely coffee: that runs right through me and I've lost the taste for it. I occasionally indulge in a full-fat coke or tonic water because they help with my rare bouts of post-meth nausea. DD