Hospitals, Drs, Injections, Advice.. How do you keep going??

EmmaJane12

Hey all

I am a 22 year old sufferer of RA for 5 years. I am due a total knee replacement in a months time, a little light at the end of the tunnel for me.

I am currently on 25mg of Methetrexate and 25mg Embrel which i self inject each week.

I have never met anyone as young as me with RA, and find this fact so so so hard to deal with. I feel like no-one understands and have suffered with depression hard over the past 6 months.

I know with the operation on the horizon, I should be so happy. I am going to physio to prep for it. But, you know what? I find it so hard to keep going. I find it so hard to keep on top of my meds, get up and go to work as if all is fine, to keep going to all the doctors and hospital appointments, to keep ignoring the pain.

It frustrates me hearing diet can help this, exercise can help that. I have just lost all motivation and energy to fight this thing!

What motivates you to keep going with it all?

MrDJ

Hi Emma
we all feel your pain and know what your going through.
its easy for everyone to say keep you chin up but there a lot of people out there who have no idea what pain and suffering we all go through on a daily basis and it is very hard to keep smiling all the time.

like you i was diagnosed when i was 21 with OA. doctor took me into office and bluntly said dont plan ahead as you will be in a wheelchair within 6 months. that was like hitting a brick wall at 100mph.
she was almost right as i was on crutches after 9 months and it all went downhill from their.
27 years later ive got OA/RA/anky spon/and PA. also blind in one eye thanks to uvitus and eyeritis.

yes, i have my down moments. normally 2-3 times a year i get so down that i just shut myself away in my room from the outside world.
the only one that suffers really though is me as the rest of the world continues.

my phylosophy is there is always someone sadly worse of than myself.
i work in a large london hospital and see quite a few kids with this debilitating disease. they are an inspiration to me to keep going.

im now on 15mg mtx and infliximab infusion every 6 weeks. i will be having my 72nd on wednesday and this sure does help.

the hardest part for any patient and doctor is finding the right combination of drug therapy that works for you. it does take time but there is a light at the end of the tunnel so try and stay strong and carry on.
hopefully the knee replacement will ease your pain considerably for a better way of life.

you sure have come to the right place as there are some very helpful members on here that give great advice.

keep us posted on how you get on.
Jim

Mike2012

Hi, I was told i had Arthritis when i was 18 im now 26. I have gone through all ups and downs with the diease, before i found out i had it i did professional cycling, used to walk up mountains every weekend and do rock climbing. Now i do none of that.

Ive tried all kinds of medication, to stum the pain i am now on Humira 40mg self injected every two weeks, along with liquid morphine for pain relif.

I've had one operation to fuse my left thumb and in the next few weeks i am having an operation on my left foot to fuse all the toes to my metatrasels.

I was in hospital on Wednesday this week and had 7 x 80mg steroid injections in my left foot to help with the pain.

I've suffered bad with depression when i first found out i had it, but i have had my family pull me through it, and some firends have stuck with me but not everyone understands.

We would be good to meet with people of a similar age, say under 30 that are going though the same thing.

Starburst

Hello Emma,

I'm a bit older than you - 24 - and was diagnosed almost 3 years ago. Like you, I don't really know anyone with RA and have moments of losing motivation. You say you've suffered from depression and I can certainly relate. If you don't mind me asking, are you on or have you considered anti-depressants? For me, they really helped lift the black cloud.

There are a few us on here in our early to mid twenties but I also find I relate to other people too. Posting on here when I'm feeling low or frustrated really helps as does venting to my physio who is a rheumatology physio. We do a lot more talking/planning than exercising but I need it and it helps. I wonder if your clinic has anything similar such as; pain management.

You have a lot going on and approaching an operation is scary. You sound quite hard on yourself if you don't mind me saying. It really is tough coping with all that you do. It's exhausting and on top of that, you have to go on with life too. We are all here for you and if you ever want to talk privately, I check my messages regularly and I'm happy to listen.

All the best,
Sophie x