Seronegative Rheumatoid Arthritis

MoyaSkyeFox

So, to be perfectly honest I really dont know where to begin or how to start. Ive been pretty down lately and feel like no one i know can relate on understand how im feeling, so heres my story and i just hope someone out there can relate, even if its just one person out of many just that slighest bit of understanding would help me so so much!

My name is Moya Skye Fox, im 23yrs of age but my pains started from when i was about 10 i think. Every so often i would get this pain in my knees, it was a blunt but throbbing pain that caused me great distress. I remember staying up and crying all night and mum having to sleep with me because i would be in so much pain. Everytime i went to the doctors they told me it was growing pains and i was imagining the pain i had. I knew this wasnt the case but nobody believed me from a young age how bad it was. to summarise throughout my whole child hood up until the age of 20 i must have been to the doctors over 100 times and been ignored everytime.

I was then diagnosed with Arthritis a couple of years ago now which was a shock! without being to dramtic when i found out i did think my life was over at one point, i thought wow im going to be a cripple and not be ablt to do all the things i wanted to in life. It got me really depressed actually (which didnt help the condition).I was only diagnosed when it spread from my knees to my hands. I was put on Sulphsalazine which had no effect on me what so ever. Moved on to steriod injections they helped a little then moved onto methotrexate! My problem is that i have seronegative rheumatoid arthritis. And yes people say oh if you have that kind your lucky but im really really not! its hard proving how much pain your in when it doesnt show up on a poxy bloodtest. I actually think people are rather ignorant to it. Im in pain most days, my hands and knees swell up sometimes i cant even walk because my knees feel buckled yet people say im lucky? i can go from a 1 on the pain scale to a 10 over night. in the winter my joints seize up i cant walk as quick as any1 else, and as silly as it sounds im very sensitive to air pressure. If theres a storm coming id be the one to tell you, i flare up when ever it rains . Anyway without going on to much i felt like i just needed to write this down somewhere and get my anger out about how ignorant people can be towards the different types. If any1 had read this thankyou for your time. x

lynnmick

hello moyaskyefox,

welcome to the forum, i can relate to the way you feel and i too have RA but my blood results are always not too bad, and i've always said that blood results do not always reflect on whats going on in your body. I've got a deformed elbow, knuckles and fingers that are slowly deforming, and are constantly in pain and feel like c**p most of the time. Please try to get it across to the people that you are seeing regarding your RA just how you are feeling. I've also had inflammation of the pancreas and inflammation of the ribs has a result of my sero negative RA so its not something to be taken lightly, everyone is affected differently. I hope you get the help you need, i really do.
Take Care
Lynn x

mig

Sometimes its good to write things down,stick around we are a good crowd.Mig

barbara12

Hi MoyaSkyeFox
Its lovely to meet you, only Im sorry you had to look for us in the first place
When you say you had to write it down, this will help you more than you think, I am a great believer in talking and getting things off your shoulders.
You are having such a rough time, and I wish I could help more but I have OA.so I would like to comment on your meds
But what I can do is offer my support and listen when you want to talk, you take care xx
Oh I have just seen Lynn's post...she is so right when she say you have to get across how much pain you are in, it took me a while to get through to my GP, but I got there in the end...

LignumVitae

Well done for getting that down, I hope it has helped you. I too have a sero-neg arthritis, I think there are a few of us on here. I am a methotrexate patient having done sulfasalzine and a host of other dmards before hand.

Arthritis is never easy or lucky but it isn't the end, I too thought I wouldn't be able to do things but I've travelled, I've studied, I do lots of things, maybe not all the things I dreamed I'd do but I've done plenty of things that were beyond my dreams too!

There are loads people who don't understand the many technicoloured forms and symptoms of arthritis but you will find that on here, it is quite the opposite and there's lots of support and friendly peeps to talk to!
LV xx

valval

hi it must be so hard when people tell you it in your head you feel up when they decide there is a problem but then quickly end up back down when you start to morn for all that you feel you have lost to start with they will offer minimum meds to see what you need you have to get accross the quality of life is affected and the pain and stiffness you feel is bad. you have to try lots of meds to find what helps you but you will get there exercise is important even non weight bearing to strenthen muscles and protect joints. keep posting and we will help you through this hard time good luck val

earthspirit

skye - this forum is full of the kindest people you could find to give you moral & practical support with your RA

my own severe RA wasnt diagnosed until i was 51 but had it since preschool age and i grew up fit highly active healthy & much into sports and during my flares, when i was suffering great pain, i think i was more or less ignored and told to stop playing up. i appeared the picture of health and my flares were just me being awkward or attention seeking. too late now to go back with accusations

you are young and whilst this may induce feelings of great negativity in your mind, the disease might go into remission and you carry on being totally normal.

not everyone gets terrible deformities (but doctors have no way of telling if you will or you wont) and the specific medications are to damp down the disease in the hope of preventing these.

its important to cut out junk food from your diet and to follow a sensible eating plan. there is big debate over foods which trigger flares and its worthwhile reading up on these and perhaps eliminating these from your diet and then introducing again, just to see the effect for yourself. my theory is that if a certain food helps or hinders, its better to have worked this out for yourself and avoid the offenders. i totally believe that alcohol is a trigger for many people although new research shows that drinking can prevent the triggers for RA - this isnt much use to those of us who already have the disease. smoking is also a potential triggering factor (im a long time heavy smoker) and there are some people who have said that stopping or cutting down, does make a difference to the pain.

whilst heat does provide comfort, cold pressure on the swollen joints is more effective in reducing pain. getting the correct pain meds can make a huge difference too so make sure your doctor helps with that. i coped undiagnosed for many years with nothing more than ibuprofen but then have suffered from long term use - they dry the joints and eventually cause more pain.

i think at your age its important to keep your weight down and muscles strong and in my opinion, swimming is the winner for this task. strong muscles support the joints and therefore less pain and more mobility. thats how i coped for years (i was a long distance sea swimmer and remained superfit despite the pain)

as far as telling people, each of us needs to become an educator of the public and even medical people sometimes dont fully understand the disease. this is an awful condition and its up to each of us to let the outside world know this. compare yourself to people with other extreme conditions such as cancer heart disease ms or diabetes - they all talk about whats wrong with them and the public understand and are more compassionate, we need to do the same with what we have. you are doing this so that those who walk the same path in the future, are more able to talk to people who will understand.

personally i am absolutely not a whinging moaning type and its shocking some of my friends and family when i go into complete honesty mode about my condition. i educate as i go along.

im not the best to give you advice on the RA meds as im not convinced that they are the answer. i managed to retain a high level of health for years without them but of course that might be a totally foolish course of action for others. i tried sulf and spent 3 weeks crying in bed feeling i was going to die and felt that i had been saved from death when i stopped taking them - yea perhaps slightly drastic dramatic scenario but that is how awful they made me feel.

the rheumatologists "push" their medication but they are only trying to help and its all they have to offer. ive spoken to people who say the meds helped for "x" amount of years, but how do they know its the meds and not a natural remission?? please do not ignore medical advice you are given on the basis of what im saying but i do believe in honesty and sharing of how the disease affects me.

another tip is to please keep drinking water pure and simple without additions of fruit juices etc as this is the best nutrient and greatest detoxifier you can find. i also take rosehip tablets every day and i dont know what good they are doing but i do know that if i stop taking them i start to get a feeling of greater sickness and nausea, which for me, is much worse than the actual pain.

you will get lots of replies on here and there is always someone to talk to - never feel you are complaining or whinging because this is a serious condition causing huge amounts of pain and mental distress and its always better to share with those who understand.

dont feel taht life is over - you might have to make some adaptations in your life but at 30yrs older than you, more or less untreated, i can say that life hasnt really been too bad. hope that you are feeling a bit better after talking to people on here, stay strong!