Hello All,

Well, I've done it. I've finally taken the plunge and signed up to be a member. I've been lurking around the NRAS website for a while following my diagnosis in November last year..but never really had the courage to join

I guess I'll start with a bit about myself..
I'm 28 and live near Manchester. As I said before, I was diagnosed in November 2011 with Seronegative RA, Secondary Fibromyalgia and IBS (which had previously been diagnosed in August 2010). It would seem that my immune system is giving me the middle finger because I also have Sjorgren's Syndrome and Raynaud's and most recently have been told I have carpal tunnel syndrome in one of my wrists.

I was initially started on a concoction of Omeprazole, Folic Acid, Vitamin D, Naproxen, Pregabalin and good old MTX...have recently had to come off Pregabalin due to oedema in my legs and feet (and currently carrying around 2st of fluid in extra weight) and MTX because I could no longer do the injections...am now on my 5th week of Sulphasalazine and Amitritptyline (as well as Citalopram) - think I'm keeping the local pharmacist going!

Anyways, at the moment I'm currently battling with my health to try and hold down a full-time shift-working job (with NO shift "pattern") and trying to keep a roof over my head.

Hoping I get to meet some new friends on here...would be so nice to be understood once in a while instead of assumed to be "lazy" because the only words out of my mouth are "pain" and "exhausted"

Tang
x

Hi Tang

Welcome to the forum and it is a pleasure to meet you. You have made the right decision in joining. This website has been a god send to me. I have gained support, experience and a lot of laughs along the way. I no longer feel so isolated with such a debilitating, unpredictable disease.

I am nearly 49 (and will be going backwards from the next Birthday) and was diagnosed in January 2009 after years of illness and backwards and forwards to the doctors. Luckily one day, one clued up young doctor spotted the signs and here I am today. I believe now I may have had it all my life hence the bad joint damage.

As Jane said it is now all about pacing and only doing what needs to be done. Anyone who does not understand my illness and thinks I have the "arthritis their grannie had" is immediately slapped with the NRAS booklet explaining about RA and told not to leave the room until they understand I AM NOT FAKING IT.

Please keep on posting as it is good to have new members joining in and we all learn so much from each other.

Take care

Jackie
xx

Hi Tang - we understand exactly what you're going through - the pain, the random joint swellings, more pain, odd symptoms like white fingers and toes that none of your friends have ever seen, more pain, the worry, the confusion, the drugs, the low mood swings (at times even despair) and as if that isn't enough there's the fatigue!!!! Well fatigue doesn't really describe that feeling of being utterly wiped out and hardly able to crawl out of bed. We understand what it's like and know how tough it is for you.

RA is horrible but it won't always be as bad as it is at the moment. You've got a lot of complex health problems, but you will find a mix of meds that will help you and you will feel loads better. It always takes a while to find the best combination, but hang on in there, and you will enjoy your life again. You've come to a good forum as there's always lots of friendly people who visit regularly and will give you support and good advice.

I'm a bit older than you (54) and I try to look in every day, and there are several younger members so they will relate to your experiences even more, so do keep dropping by and let us know how you're doing - even if it's a very short post.

My meds are very similar to yours and I too take citalopram as my mood was very low for a long while. RA is very complex and is different for each person, but some things are the same, so my advice to you is to try and get as much rest as you are able to for the next couple of months. Your friends may find it difficult to understand but you have to be a bit selfish at the moment and conserve your energy for only the most important things in your life. It will get easier once the inflammation is controlled by your meds, but that takes a while. There was a lovely story about the spoons - I'll try and refind that thread - which explained it so well (can anybody else help me out there?).

Basically RA tends to make you so tired and when you're tired then everything feels even worse - pain is more difficult to tolerate and even the simplest task takes forever to do, so that is upsetting and makes you feel even more down and that makes you tired and it's a vicious circle. Rest helps to break the circle and gives your body time to heal and your meds will reduce the inflammation while you sleep which means the pain will be less and hopefully you'll feel gradually better and your mood will lift.

I don't need to sleep everyday now as I'm much improved - but I used to get undressed and go to bed every afternoon and just sleep for 2 hours or more and I'd also go to bed early and slept as late as possible. To h*ll with all the little things that seem so important (like housework and a social life) - rest was the only thing that mattered to me. It must be even more difficult with shift work but hopefully you'll find a way - and you may find that you need to ask the GP for a sick note. Most of the people on here have had to take time away from work at some time, even if they have subsequently gone back.

Good luck and do keep posting - Sylvia xx

hi Tang,

welcome.

i always feel sad when i someone is diagnosed at such a young age .. it hit me like a sledge hammer when i was 57.

i had carpel tunnel before i was diagnosed with RA, and had the procedure to rectifty it. the symproms i got was tingling in the top of my fingers and down the side of them .. the procedure was a success, just left with a small scar on the the palm of my right hand where it meets my wrist.

i really sympathise when you have to hold down a job whilst batting RA.

i hope the forum helps you, there is always someone here to listen.

keep posting.

Suzanne

Hi All,

Am in work on a late shift (til 10:30pm and then back in at 7am tomorrow) so wanted to take a little break and check in on you all.
Thank you so much for the caring responses to my initial message
It's so great to know that I'm not alone.
I've been feeling really really low recently. To the point where panic attacks are becoming more frequent and I feel as though it's easier to keep myself to myself because no-one really gives a damn when they ask "you ok?"..easier to say "yeah" and get them off your back than to bore them with the details.

What also doesn't help is the hassle I'm going through with work. Because I'm still getting diagnoses on things and trying to find a medication routine that works..I ended up with oedema in my legs and feet which made walking very painful and even more tiring than usual. Now, because of that and flare ups in the IBS etc, I've hit a "trigger point" with my sickness and work are trying to issue me with a warning. I've had to get the union involved but it's like a bigger dark cloud hanging over my head. My physio has told me that if it was back in the "olden days", she would've made a call and booked me onto a ward for rest..but that's just it, what do you do when you feel like you're right on the edge of a breakdown but you feel as though you can't take any sick leave because of the repercussions?!

Sorry to bring you all down...but...I just feel so....

Hello Tang

Welcome to the forum, glad that you've taken the plunge to post but sorry that you've got RA, especially at your age.

I'm afraid with this illness there is no one pill that suits all, they have to find the right drug or the right combination of drugs to get it undercontrol.

So sorry to read about work, from what I understand we are covered by the Disability Act and any days off sick that we have due to our RA cannot be counted as sick days. I am not 100% certain about this, but if I was you I would ring the RA helpline up and talk to them about it. You certainly don't want and don't need any more stress.

Sorry it's such a short post, but wanted to make sure that I said Hello before I go away.

Keep posting.

Take Care

Paula

Hi Tang - so sorry to hear you're feeling really low - we're here for you to talk to. You never need to apologise on this forum, because we all understand how tough it can be at times. You've got a lot to take in just now, and when you're feeling rough that is very hard to think about it all, so just take it one day at a time. There is light at the end of the tunnel, and you will feel better than you do now, but it may take a while. It's good to get your union involed in your case, and it is worth talking to to the people on the NRAS helpline. Do keep a diary and record all your meds and how you feel each week, plus you can record anything that bothers you about work - you will probably need that sort of detail so it will make it easier for you if you record it as each day goes by - then you can just look back and find the information when you need it.

Take good care and remember to rest as much as you can - best wishes Sylvia

Hi Tang,
Sorry about the very late welcome. I don't usually get on here much due to work (!!) But today the two little boys I childmind are going away for Christmas and moving away. I am very sad they've been in my life for three years and am in tears
I do understand your difficulties with work, I gave up my job in a special school due to them not understanding about my illness. They said there was no lighter work, so I knew there was no point involving my union.
I so hope they can help you, it's so had to work with this horrible illness. I know the doctors encourage us to stay in work, but I don't think they understand the problems we encounter.
You are so young, I have two daughters older than you. I was diagnosed at 55 after two years of visiting gps. The meds will get sorted for you, and things will improve, it just unfortunately takes time.
Please read the Spoon Theory, type type it into google, its a wonderful description of chronic illness, and how it affects us.
I am currently on methotrexate and hydroxychloroquine, and about to start on Ritixumab after failing on Humira. We all understand how you feel, you don't need to explain to us, we are on your side completely. It sounds like you so need to rest. I so hope your union can help you. Thinking of you

Hi Chrissie - I've just spotted you're a new member - welcome to the forum. I've started you a new thread so other friends can give you a proper welcome too. It may take a while because with Christmas here, a lot of folks are away and of course it's a very busy time. But have a look under New Members over the next few weeks as people keep dropping by.

Hi Tang - I hope you get some time off over Christmas. What sort of shift work do you do? Please hang on in there, it will get better - there is light at the end of the tunnel. You're young and underneath the inflammation you are exactly the same person - I'm sure your partner can see that, and even if you don't like the Tang you see in the mirror atm, you will find that once your meds get sorted out you'll rediscover the real you. There are quite a few forum members who are younger and have young children - they don't drop by as often as us "oldies" but that's because they are busy getting on with their lives now that they have got control of their RA - and that's what you can look forward to! All best wishes and hugs - Sylvia xx