recently diagnosed.... please help

kezzad

i am 22 years old and have recently been diagnosed with inflammatory arthritis although the rhuematoid factor was negative. i have found the past fews weeks unbearable and i am in a lot of pain. it seems my doctor and rhuematologist cant find a cause and are unable to give me information on what to do, i have called my doctor several times in desperation as i suffer with it all over my body and havent slept properly for about a month! im trying to hold down a full time job and find it difficult to talk to my friends and boyfriend as they dont seem to understand. I am currently taking diclofenac, painkillers and have had 2 steroid injections whilst my doctor decides what is the best treatment for me. has anyone else had the same experience? i also have to have ultrasound scans of my hands and feet and an mr scan of my back. I really would like some advice on how to cope, what i should be doing to help myself as i am struggling to come to terms with how and why this has happened to me so suddenly and dread the thought of never getting better please help

skezier

Hi Kezzad,
Firstly welcome to the site and I am sure as Dollyann said the Help line team are very good. Its hard when it comes so young, well its hard at any age, but the future once they have sorted out your best treatment and got all the tests back may not be as bleak as you see it just now.

The cope thing comes with time. You need to take a bit of time to get over the shock and as you do it becomes less panic inducing and you realise your body's needs and wants. Sometimes you can via treatment and physio help get some of the bits working better. I know it's hard at your age, and its unfair as well. Try and get a hole of any panic and try not to worry too much, things may not be as hopeless as you first see them. I also think once you talk to the helpline team you'll have a much better idea as to what you can do. Take care, Cris

Hi Dollyann, welcome to you as well.

kezzad

thank you for your kind words, i do appreciate it will take time but it all seems so hard to understand at the moment. i am struggling to keep my job and try and make them understand how difficult it is. I have seen a consultant after being referred by my GP but just waiting now and i dont really know what for! I havent been given much advice other than to grin and bear it which is awfull, im sure there are people a lot worse off than me but the pain is unbearable at the moment and lack of sleep is causing real mood swings! (im a grouch at the best of times!) Do you find you have to suggest things to the doctors like physio and stuff as i havent been offered any of that and i have gone from going to the gym practically every day to not being able to even get out of bed some mornings in a very short space of time... is this normal?!
Thanks again

skezier

Hi,
If you have inflammatory I think that comes under the rumo department and you could ask your doctors to make you a referral. You need better than you are getting and while you are so inflamed I should have thought you'd be able to get sick note? I understand doctors who don't help as mine don't but they obliged to, its so hard to ask them and I think they should just help without being asked, most do it seems.
I think the helpline team are your best bet, they understand it all so much better than me. They have a forum where you can leave them a message or you can contact them privately as well.
Ask your gp for better help and a better diagnosis though as to me this just doesn't seem right. At the very least you need better pain control and possibly physio.
I think you need more tests especially at your age and they have to be made to help better. Sadly it can be a fight and it doesn't help that it is.
As to the work thing I should have thought you are covered by the DDA thing, I don't know much about that side as I am self employed.
I hope someone who can advise you better comes along soon and take care, Cris

plmb48

hi kezzad
so sorry to hear your pain is so bad it will be untill they sort your medication out for you all of us on site take some meds the same as each other but some take different ones what works for one wont work for the other.they have to find the ones for you dont hang back tell all involved in your care what its like how bad its been if you need to ask DR to refer you sooner rather than later ask ,iam 60 with RA 30 years ago when asked how are you by DR i kept saying not too bad but then realised i had to wait another 3 months to see DR again soon learned my lesson now i go with my diary made out so they know exactly how i have been lol i know its hard to tell friends how you feel its not like you have abroken leg that they can see .RA is a PIG but please think positive not negative bye for now pauline :roll: :roll: :roll: :roll:

breane

Hi Kezzad,It is very distressing when you are first diagnosed with any form of arthritis and you do think there is no help out there for you but you will get a lot of support from this forum and from the Arthritis Helpline. Pain control is the first line of action and once you have pain relief which helps,the outlook does seem a lot brighter.I have found family and friends don't really understand how bad the pain can be and how very tiring it makes you feel. .I have found it very useful to log on to the forum to have a chat if I feel a bit low,knowing others are in the 'same boat' as myself. Take care, Breane.x

kezzad

it really helps knowing that im not on my own as it feels like that alot.. seems sometimes even the doctors dont really get how i feel!im worried about being put on my next course of meds and how they are going to make me feel though...

jimmy77

kezzad wrote:

i am 22 years old and have recently been diagnosed with inflammatory arthritis although the rhuematoid factor was negative. i have found the past fews weeks unbearable and i am in a lot of pain. it seems my doctor and rhuematologist cant find a cause and are unable to give me information on what to do, i have called my doctor several times in desperation as i suffer with it all over my body and havent slept properly for about a month! im trying to hold down a full time job and find it difficult to talk to my friends and boyfriend as they dont seem to understand. I am currently taking diclofenac, painkillers and have had 2 steroid injections whilst my doctor decides what is the best treatment for me. has anyone else had the same experience? i also have to have ultrasound scans of my hands and feet and an mr scan of my back. I really would like some advice on how to cope, what i should be doing to help myself as i am struggling to come to terms with how and why this has happened to me so suddenly and dread the thought of never getting better please help

Hi,
I think it's important to do what you need to do in keeping the inflammation down which creates the damage. Treatments may change and be flexible. Just to explain don't just try to tough out the pain because you will not be doing yourself any good.
Good luck
Jimmy

joseyanna

Hi,

Sorry to hear your in so much pain at such a young age. I thought I was young at 40! I have recently been diagnosed with inflammatory arthritis like you and am now taking hydroxychloroquine. I feel exhasted and can hardly get up sometimes. My doctor has given me a sick note. I have been off about 4 months now and still am not able to work. Go back and tell your doctor if work is too much for you just know. My main pains are in my neck, shoulders and lower back but I get muscle pain all over and can't sleep. I think you sound very similar to how I feel and it has changed my life. I cross my fingers that we both get some sort of pain relief. Take care Josey