New and needing some suport....

topgirl · 4. Jun 2009, 03:32

New and very glad to have found this forum as sometimes i feel that no-one else knows what its like to feel like i do day in /day out.
18 months ago i was at the gym most days, loved my job and was very sociable.....
Woke up one day tho id broke my toe and damaged my knee....
after a year of various tests and scans i was told i have seronegative RA.....This has hit me like a ton of bricks....
Im in pain every day...and im so so tired all the time....
I work in retail so am really struggling staying in work and because i look fine i asume they think i am fine...IM NOT!!!!
I hardly go out as i find that im wondering if i can cope with the walking....
Im only 42.have 2 boys ..my consultant is good and has started me on sulfazalazine....but its only been a month.....
I feel so low....
Is there any light at the end of the tunnel :?:

skezier · 4. Jun 2009, 03:40

Hi Topgirl,

First welcome to the site, it is a good one and they are nice people. You have had a huge shock and it all takes time to get meds sorted etc but there is light down the other end I promise you.

Someone better at explaining and with more knowledge will be along soon, but a big hi in the meantime. Take care, Cris

topgirl · 4. Jun 2009, 03:48

Thank you...
It makes me feel better already ...knowing that theres support out there, and from reading lots of threads,everyone on here seems really friendly...i am looking forward to chatting.

suzster · 4. Jun 2009, 03:57

hi and welcome!
everyone is so kind friendly and helpful here, i have found this a very supportive forum, actually i think of it less as a forum and more of a way to contact friends, people who understand what we all go through and are here for you no matter what.
it's great that you've found us and please do post you concerns, worries and your more positive things to!!
sue

debbieclap · 4. Jun 2009, 04:02

Hi and welcome I have OA but there are lots of people here who will be able to help hang in there there is light at the end of that tunnel first you need to come to terms with it all yourself they will sort your medication out
keep posting any questions
Debbie

elnafinn · 4. Jun 2009, 04:04

Hi topgirl

I am sorry to hear your story. Welcome to the site. It is good to hear your have an efficient consultant - it always helps and I can understand how you feel with it all happening so quickly, it is a real shock to the system. There is light at the end of the tunnel, but it does not appear as quickly as we would like.

You are right, others do not understand but at least you have found us and you are able to feel at home here because we well understand what you are saying.

I hope today is better for you.

Luv
Elna x

eckstardeluxe · 4. Jun 2009, 04:30

Hi and welcome to the Forum. I know your mind must be going through a million thoughts at the moment but things will get better soon. Once you learn about your illness and how to cope with it, things gradually improve mentally. The posters here will give you some great tips on how to deal with both the physical and mental issues. I've never been one to go on Forums but this one has changed my outlook completely. I've went from miserable, angry and sad to having accepted my fate. I am ony 33 with a 1 and 3 year old so was very shocked at my diagnosis. But time is a healer and I wish you all the best. x

angel1 · 4. Jun 2009, 04:36

Topgirl, hello, So sad to read about your diagnosis, and the awful effect it`s having on your life. I personally have OA, but from reading other people`s posts it seems that there definitely is light at the end of the tunnel, once your meds kick in. At the moment, it`s a very dull light, but it will get brighter. For now give yourself what I call some "soft" time, to come to terms with what is actually a form of bereavement. You feel you have lost yourself, but, as time goes on, you will discover the strength to carry on......Much love....Ange.

jenzie06 · 4. Jun 2009, 04:41

Hiya and welcome.
I was diagnosed with RA when I was 15yrs old. Needless to say I wasn't the best of patients and went through stages of why me, angry, sad etc etc but to be honest I've got to a point where I've decided to be bloody minded and not let it beat me.
I've taken control of my treatment, have various methods of pain management upto and including morphine for the really bad times. I understand where you're coming from but try and keep looking at the positives in life as when I feel sad or down it seems like the RA is worse.

Most of all keep laughing!

emmarose33 · 4. Jun 2009, 04:58

awwww, I really know how you feel.
It was the same for me, I woke up one morning thinking I had damaged my wrist and elbow, then when my knee got involved I went to the doctor. I kept thinking I would get better soon but it hasn't happened.
Sulphasalazine needs a while to start working, and there are lots of other drugs which are available, I am sure you'll find something to help you soon.
I am restricted atm because I'm still breastfeeding my 1yr old. I am trying desperately to wean him, and once I have succeeded will try methotrexate. I have herd it can help a lot.
Sulpha is just the start of the road and you have loads of treatment options ahead of you.
I can't offer much advice on the tiredness, just sympathy! I know how you feel. It's impossible for people to know how exhausted you feed - because you can't see it. I worry people just think I'm lazy. I can't imagine having to work with this illness.
I hope you feel better soon. :?
Take care

suziev · 4. Jun 2009, 05:11

topgirl wrote:

New and very glad to have found this forum as sometimes i feel that no-one else knows what its like to feel like i do day in /day out.
18 months ago i was at the gym most days, loved my job and was very sociable.....
Woke up one day tho id broke my toe and damaged my knee....
after a year of various tests and scans i was told i have seronegative RA.....This has hit me like a ton of bricks....
Im in pain every day...and im so so tired all the time....
I work in retail so am really struggling staying in work and because i look fine i asume they think i am fine...IM NOT!!!!
I hardly go out as i find that im wondering if i can cope with the walking....
Im only 42.have 2 boys ..my consultant is good and has started me on sulfazalazine....but its only been a month.....
I feel so low....
Is there any light at the end of the tunnel :?:

hiya

i have sero neg arthritis too and like you i have 2 kids, it is hard and even harder to hold down a job. i think this is the worse part finding out and going though the grieving process. there is light at the end of the tunnel, meds help and getting your head around it all, making sense of the ra and learning how to manage it. you will see brighter days just hang on in there it's not easy but you will get there.
suzie x

ramummy · 4. Jun 2009, 05:24

Hi there, sorry to hear about your diagnosis. My situation is similar except I'm sero-positive. I was diagnosed last year a couple of weeks after my second baby was born. I totally understand where you are coming from regarding the exhaustion - I'm lucky, as I seem to be responding well to methotrexate but today I'm working from home as I was just too tired after a night with the baby to make it to the office. I'm very fortunate though as my work is office based so all I need to be able to work is my laptop and a phone. In the last few days I've been feeling more and more run down but I look fine - even my DH finds it hard to believe and he's well aware of my RA.

Work and RA is difficult. I decided to tell my immediate team but recently I've found myself telling more and more people as I sometimes need to wear splints on my wrists - generally the response has been positive but you can't help wondering what people really think.

Try this website for some handy info about RA and work - if you're brave you could give copies to your boss ... you never know they might just be a bit more sympathetic once they know a bit more about RA. http://www.rheumatoid.org.uk/index.php?page_id=100086

Chin up chook - there are loads of lovely helpful people on this site - it's been a godsend to me since I was diagnosed. xx

topgirl · 4. Jun 2009, 05:26

Thank you everyone for your comments and support so far....
You are SO right!....i am grieving....i feel like i have lost the old, happy postive me and i have been replaced with a grumpy tired women who is always moaning at work and kids fed up cos im hurting to much to play....
My husband and me do laugh at times tho....it helps....
Im hoping the OLD me will be back at some point.....
My consultant has said that im only at the very start of my treatment and not to make any impluse decisions so im trying to stay positive.

debsmartin · 4. Jun 2009, 05:47

Hello topgirl and welcome, I think we have all been to that low point where you can't see any light at the end of the tunnel and I know its very frustrating how slowly all the tablets actually seem to work but once your tablets get working I'm sure you will start to feel more positive, I think its lots of very painful slow steps. I couldn't have coped in the early days without my steroid injections.

Take care, I know this is a great forum to be on, I never feel on my own now.

debs

breane · 4. Jun 2009, 06:21

Hi,Coming to terms with arthritis,whatever type you have,certinally takes a time but once you have your medications sorted out there is light at the end of the tunnel.

There are days when you will feel really low and when I get those days I know I can log on and get support from other members in the same position as myself.Finding this site was the best thing I did and I hope it will be of support to you also.Take care. Breane.x :P

valval · 4. Jun 2009, 06:43

hi this sight is great gives u a lift on the bad days and always lots of advice i am lucky at moment doc great help and things more or less under control 6 months ago i was going keep fit once a week and enjoying it then started certain things caused real pain 4 days after got less and less could do with out getting bad pain 4 days so had to give up. doing tia chi (probably spelt wrong) lucky my mum can teach it helps but do miss odd day when having flare up as feet to sore to stand on and going to work enough some days. trying to loose weight but slow slog hope u starting to feel better some times feels like will never settle down and u start thinking there must b something else wrong but will get better just stick with it let us know how u doing

frogmorton · 4. Jun 2009, 07:28

Hi Top girl!
Welcome form me!
I too am new to all this it is one year ago for me this WEEK since all this kicked off. I woke up one day with swollen ankles knees and hips and WO! from NOWHERE?!
What I can say is talking to theses wonderful people has hel[ped me to survive and get my head around it all.
When you get your meds right you will see that of course there is light at the end of the tunnel - and you will be able to get out there and plan stuff again and take RISKS!!!
Life will be good agin, different maybe, but good!
You take care
Toni x

New and needing some suport....

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