rheumatoid arthritis at 20, day 1 :(

tanyakent

My story begins at 16,
My knee quickly deteriorated, cruelly painful and agonising, I had an operation to “fix” this troubled joint to which to some extent was a success. 17 arose and my spine slowly become more painful and worrying, 2 years of agonising unbearable pain, days of lying in bed unable to move walk or even dress myself, being used as a lab rat for various different medications and pain remedies, finally at 19 I had spinal surgery to again “fix” my damaged disc’s. Being diagnosed with degenerative disc disease at 19 is not slightly amusing or confidence boosting. I was made aware this situation could only worsen give time and age.
During 17-19, multiple injuries occurred, knees, hips, ankles, spine, neck, and a general discomfort and pain amongst all of joints my worries became more concerning. The blame for my unfortunate luck with my bones/tendons/ligaments and joints in general has always been shifted to my server double jointed-ness and severe B12 deficiency as opposed to something more clinical and sever, despite my continuous pain/injuries/medicines/ and just knowing that something hasn’t been quite right for a long time and a millions and one trips to A&E and doctors for help, nothing had been done in an attempt to help me other than painkillers.
Finally in December 2012 I decided enough was enough and I went back to my GP expectant of help. To which I have been referred to my spinal specialist for further tests and scans on my spine to see what more damage there is, and my GP explained it sound like either Osteoarthritis or Rheumatoid Arthritis. Admittedly my heart sank, I’m 20 years old.
The GP explained the ruling out of RA needed to be done firstly, Blood tests! So my blood tests came back yesterday 21/1/13 and yes at 20 years of age my blood came back positive for RA. Brilliant. Though to some I may seem extremely disheartened at something that is not life threatening to me its life effecting.
To be 20 years of age and some days not be even able to dress yourself because your body is to fragile and painful or even open a bottle of pop because your hands are too stiff and painful is depressing at its best.
However having said all of this I am not the worst off person in the world and I am not the only young adult to be diagnosed with this life effecting disease and so ….. the show must go on.

dreamdaisy

Hello, this is indeed tough - arthritis can strike at any age and is grossly unfair whether one is two, twenty, forty or sixty. I reckon we all share your sense of outrage, it is indeed a tough thing to face.

Your blood tests are positive for RA so hopefully that means you will soon be able to start medication to get this under some form of control. How soon will you be seeing a rheumatologist? DD

tanyakent

Thank you for your reply

i dont see the rheumatologist untill 5th march, and i have xrays 30th janurary just a little concerned about what to expect medication wise. beacuse ive been on so many different ones already, morphine, oramorph tramadol, co-codamol, diclofenac, gabapentin etc but im not limited to what i can have beacuse i cant take morphine,co-codamol, because they make me have fits and make me really poorly and i cant have anything with anti-inflamatory beacuse i was on diclofenac for over 12 months causing my stomach to very nealry rupture. any adivce ?

kentishlady

Hello Tanyakent. You really are having a tough time and my heart goes out to you. Am glad you now have a diagnosis and as DD sd, hopefully you can now get some meds to help you. I have OA but am considerably!! older than you, but I also have trouble with meds. My GP has tried so many and they all give me such terrible side effects that in the end I have to abandon them all and am left with taking just paracetamol and applying so-called pain-relieving gels.

Do let us know how you get on. We are all here to listen and support one another, whether it is a 'rant', a moan or just to get something off our chest!

Do hope you life will soon be a little easier for you. Take care. Beryl

dreamdaisy

The ones you have had so far are just pain relief and anti-inflammatories, they also have a part to play in treating RA but there are different meds for auto-immune arthritis. This will be what the rheumatologist will discuss with you and he may also ask for more Xrays and blood tests. Were you never given a stomach protector when on the diclo? DD

tanyakent

DD - hopefully i will be able to have some of these medications then, i was given the stomach protector only after the 12 months by which time it was to late and i was already poorly and coughing up blood etc then GP relasied his mistake and took me of them straight away and im not on a weak dose of cocodamol 15-500mg and gapapentin which takes the edge of my pain but doesnt fully help me esp when im having a flare up. having the degenerative disc disease and RA and im severly double jointed all my joints work over time cause more pain with the RA but doctors have seemed very half hearted in helping me until now. I also have to pay for my prescriptions which is costing me a fortune as im taking 22 meds a day using joint magnets and 2 different creams all of which i have to pay for do you have any idea how to go about free prescription service ?
Kentishlady
thank you for your reply, i will be sure to keep you up to date with my progressions and i hope your doing well aswell, its always nice to speak to those in the same situation. how do you find the gels ? i dont find any that work but i have been using a new one recenelty called jointace glucosamine chondroitin gell .. it doesnt seem to be helping me atm but it maybe one you could try if you have tried all others

dreamdaisy

Free prescriptions are only obtainable if one is on certain benefits, has a life-threatening illnes or is of pensionable age. There is the pre-payment certificate, the flat cost is about £140 per annum but I pay for mine monthly - the number of prescriptions you can receive is unlimited, there is information about it on the web or in your local chemists. No matter what strength of pain relief you take it will only dull the sharper edges, nothing takes it away but the really strong stuff takes you away from it, which is a slightly different kettle of fish.

I have to go to work now, I might be back later. DD

DebraKelly

Welcome to the club. I was diagnosed at the age of 33 (3 years ago) - giving away my age now! lol

I have been on Meth since the start, first tablets and now by injection and I am now on Sulpha 3 times a day. (Meth is once a week). I have to say that Meth is a great drug and I would highly recommend it, but everyone is different with regards to how they react to the medication.

I can't have anything anti inflamatory as I also have asthma.
But I can take co codomal, which I do when its really bad.

Once you get your meds I would also check what foods you can and can't have. For instance I can't drink Orange juice whilst on Meth.

You will probably get some exray's done depending on what meds you are going to start using, but this is normal.

Let us know how you get on.

barbara12

Hello tanyakent
And a warm welcome from me
Gosh I do feel for you, and hate to see young people suffering..
Hopefully in the very near future there will be a cure ...who knows what is round the corner....
I really do admire you, and hope you get the help you need very soon...you do sound a positive person..and this will help.
talking will help enormously, especially to people that understand some of what you are going through you take care of yourself and please let us know how you get on xx

mig

Hi and welcome to the forum,you will get a lot of support on here ,some of these people are amazing ,check out the chit chat forum when you get the chance.( a little light relief ).
I also have ra ,I was diagnosed nearly 4 years ago and after failing on some meds have now been on humira for about 4months and so far it seems to be helping.I am a pensioner so don't have to pay for my meds but I used to have a per payment cert it's worth checking out if it would be helpful to you.
Stick with us sweetheart there's always someone about to chat to.(((()))) Mig

Nasic

Hey Tanyakent

I'm sorry to hear about your diagnosis and everything you've been through. I'm new here myself and I've just been diagnosed with OA in both my knees and I'm only 27. Granted mine is not as serious as yours but I do understand the frustration you must feel. I'm having a hard time even admitting I need simple things like a bath board! We're young and not meant to have to worry about these things! When my doctor told me I could either have OA or RA my heart sank also and yes while it isn't as life threatening as other illness you are spot on when you say it is life effecting. A lot of people don't understand just how much it can change your life especially at our age but then I feel those people will never fully understand without being in our situations. Indeed the show must go on however you have every right to feel this way as long as you don't let it consume you and allow yourself to sit in a state of depression, letting it get the best of you.
The people on this forum are amazing and offer so much support

stickywicket

Hello Tanya and welcome from me, too. I think the others have said it all (on both your threads). RA isn't a great disease to have but it's a lot better once you're on the right meds. I hope that'll be quickly. Meanwhile stick with us as we have a lot of experience between us and there are some great people on here.

LignumVitae

Hi Tanya,
I just wanted to add my hugs to the thoughts and ideas above. I too have arthritis (mine's the inflammatory flavour) and I'm also super bendy(hypermobile/ double jointed). You think they'd cancel each other out and maybe they will when we are 90! The meds do help, you will find a way forward and now you have a diagnosis, you will get lots of help from the medical profession and until all that happens, we're here to support you. I was your age when I got diagnosed having spent my teenage years also visiting A&E - I got so regular at ambulance travel I started collecting the different uniforms to pick me up...and offered to marry a lovely welsh paramedic who relocated my knee!
LV

salamander

hi Tanya, just wanted to say welcome.

I haven't read through all the other posts, so apologies if I repeat anything said there. You could ring National Rheumatoid Arthritis Soc helpline as well as helpline above, the former is very good. I don't know about the latter as my landline supplier charges me for the calls to that number. Also, look at Arthritis Research UK website. Very useful sections on RA and drugs, exercise, etc. You can ask for them to send any amount of free leaflets, ditto NRAS.

I'm sorry you are having to wait until March for your appointment. That must seem a long time away. You could ask your doctor to see if they can bring it forward a bit if you are struggling. Things will get much better once you start on appropriate treatment so hang on in there. Chat later.

FindingPureJoy

Hey there... I'm really sorry. As a fellow 20-year-old who was just diagnosed with arthritis a few months ago, I get where you're coming from. My story is a little different (Original diagnosis at age 4, remission at 13, told I outgrew it, then re-diagnosed at 20), but I understand the fear.
I've started going to a counselor because, honestly, I can't balance this diagnosis with the rest of my life. I needed some help. The best advice that I've heard so far: Let yourself grieve. You were just thrown a MAJOR curveball, so be pissed if you need to!
The other thing is that you will probably play more Russian Roulette with medications-- but something will work. Now that they know what to target, they can work with your body to find the right drug. When I was re-diagnosed, we went through a few different medications to find one that worked. And who knows? This has only been working for a month and could need to be changed any time.
Let me know if you need anything or want to talk about life as a 20 year old with arthritis. I'll be around.

bubbadog

Hi Tanya, my story is very similar to yours, started with a injury at around 12yrs old after that legs kept giving way told it was 'growing pains!' Left school went to college things seemed to be getting better. Got 1st job!! after a couple of years was at lunch slipped on some pizza just outside the door to office landed badly on back had broke my coccyx! From then on my legs gave way a lot had bad pain in lower back. Changed jobs when I was 22yrs old, 8mnth into new job I slipped on some ice on way to work fell badly on to left leg had to be taken to hospital, I had to be put in a cast from foot to top of thigh! I tried to go to work with cast on! It was impossible as I was a P.A. Even when cast came off I found it hard to walk and physio was impossible. It was then my life changed forever! I was fired from job due to amount of time off work. I was back and forth between pain clinic's & consultants no one would diagnose what was wrong. Then around when I was 28yrs old I was diagnosed with Osteoporosis after a bone density scan. My world fell apart, but since I joined here I've become much stronger and this rabble have helped me so much! It will take time but take one day at a time things will start to fall into place. And welcome to Arthritis Care forum you made the right choice joining us! We all support one another here.

kentishlady

Hi Tanya. Haven't tried the gel you mention but have 2 that Dr prescribes for me - Voltarol and Capsaicin. I find Capsaicin is better for me. However, have recently come across another - Pernaton, which is a Green Mussel Gel - and, for me, this seems to be the best out of everything I've tried. I try and manage with the prescription ones when I am at home but use the Pernaton if I am going out. The downside is that it is quite expensive (nearly£10) in pharmacies, but it is possible to get it cheaper online.

Do hope they will soon be able to sort out some medications for you and you will find they help. Beryl.

Mat48

Hi Tanya. I hope all the support you've read on here has made you feel a tad less scared and alone? I was diagnosed with RA just over a year ago with 9 months in limbo before that. I think the main thing about RA is that there are a lot of disease modifying drugs that can help enormously - unlike OA for which you have to rely on painkillers and NSAIDs only. These drugs actually slow the progress of the disease - and there are even newer drugs that have made a huge difference to some people with inflammatory arthritis too. So don't despair. I have a son your age and he is absolutely covered from head to toe in terrible eczema and gets very depressed with it all at times. I used to have this too and I must say that I feel fitter and healthier now despite the RA than I did when I was covered in horrible bleeding sores.

RA is life altering but there is hope and joy still to be had from many sources. If you go on NRAS Health Unlocked you may find some more younger people to PM and get to know - there was a whole crowd of younger bloggers on there a few weeks ago and I think they've started emailing each other for support. There is a 19 year old woman called Little Em who regularly blogs and has had JRA from when she was a child and is at university now and has a blog about being young and having RA which you might find helpful. Good luck and keep coming here - you will find so much information and support. Mat x

tanyakent

Thank you so much everyone for all your concern/ advice and support I cant express my gratitude enough, its such a scary concept that I have an illness which is going to affect me for the rest of my life, esp when I should have made national level at the sport I love I guess that’s out the window now ha ha.
Im expecting good days – bad days – and unbearable days, but with the support of my family, friends, partner and you all on here im sure ill smile on through. Hearing all your stories and advice makes me feel a little bit less alone in all this so thank you very much. As supportive as my family friends and partner are they don’t fully understand the pain and upset like you guys can.

March seems such a long time away to receive some form of relief and im still waiting to see my spinal specialist for the degenerative disc disease and damage to my spinal cord but fingers crossed ill find some relief from that as well.
I feel so much better all reading having read all of your comments and felt the warmth from your support. Again thank you all so much and though im not filled with all the knowledge that you wonderful lot are, I am here for any who need a good rant about the vile vile arthritis.
I will be sure to keep you up to date on progress happening.

Thank you all !!  xx