Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club acceptance??

im feeling a little lost. im 22yrws old and a couple months ago at wrk my ankly swelled after a coupke days resting it the pain and swelling got worse went to hospital and after they checked it wasnt a blood clot i was sent home a coupke days later my knee started to swell to yet again went to hospital and was sent home after 5weeks of agonising pain and no answers i was getting to breaking point my other leg was starting to swell the pain and stiffness has spead to my hips lower back hands and neck after 7weeks and barely able to walk i hit breaking point i was a mess somthing was crippling me and the hospital wouldnt help me i went to my gp crying and he ran a coupke blood text and x-rays i went bak a week later to be told i was ANA possitive this didnt measn much to me but my gp refered me to a rhematologist and i was immediately put onto predisolone after my secong visit with my rhemotologist the results where all in i have spondylitis now 4 months down the track and having to come off predisolone i am having no choice but to accet my illness no more predisolone and the pain i starting i have 3yr old so cant be crippled and althogh my partner works financially i cant not wrk atm we want another baby but that means no methotrexate and my rhemotogist wants me on it what are the other options are there many other 22yr olds with the same problems no one understand what i have the pain i live with everyday or the difficult decisions i need to make i feel so alone with this who knew it would be so hard to walk or get out of bed everyday HOW DO YOU ACCEPT THIS?? HOW DO YOU ACCEPT THE PAIN THE DISEASE THE MEDICATION THE JUDGEMENT?

welcome spondy25...i was just running through the forums and saw this...let me apologize that no one has responded yet. believe me we are all lookin! you had a serious introduction to this disease. it is always so different for each of us.

it started in your feet and went up. usually, starts in the spine/si joints and works down. are you taking any nsaids or other dmards. the mtx (methotrexate) can help but usually only as an adjunct to a main tnf like humira.

you are in such bad shape, i imagine your doc is pushing the other tnfs.

it would be very tough in your condition to have another baby. i think you have enough time, perhaps wait a bit until your symptoms calm down. that is up to you, your OB/GYN and your rheumy.

very difficult to accept the disease. i had grand mal seizures at your age, and lost my drivers license. living in LA, well that changes your life. i learned how to deal with older folks judgment and live with it. i also learned i would never behave like that when i was older.

i am answering even tho i am older. i think it must be insanely tough to be in your place. i will say prayers and offer peace for your relief from suffering.

if you don't get a response here in the 20-something forum, always repost on the main forum. there are many other young folks who go to both places.

i hope you write back and talk again. we always listen. it helps to write.

sequoia

I got diagnosed when I was 20, I'm 23 now. I was on opiate medication and TNF blockers (Enbrel) for the first 6 months. Had about zero pain with that treatment, lost my insurance and went for over a year and a half with absolutely nothing but OTC Naproxen Sodium. Besides the baby part, I was in the exact same position you were, no medication for pain, no one (especially the Dr's) had ANY idea what type of pain I was in. Eventually I found a real Doctor that would listen to what I had to say and he put me back on narcotic's for pain relief. My advice to you, if you cannot afford the TNF-blockers, AND if your pain is severe enough to upset your everyday life, get on Narcotic pain killers. They saved my life in terms of being able to sleep, function, work and go out with my friends like any normal 23yearold.

As far as accepting your disease, I guess thats more of a personal thing. I honestly don't have much advice for you there. The only way I havent gone crazy is, I think to myself "Well, I could be living in a 3rd world country with NO doctors, dealing with this myself. If the worst that happens is I have to take narcotics and a shot in my leg a few times a month, I'm doing good.". I personally, just realized that I could either sit around all day, crying, complaining and cursing everything & everybody. Or, I could take my medication and deal with it the best I could. After I told myself that, its been much, much easier.

BTW, sorry I have no advice with the baby thing, I (godwilling) wont have that ... issue... for a long time :P.
I hope just one thing in that post will help you a little bit!

I'm glad you didn't have a blood clot. I have not been diagnosed yet with Ankylosing Spondylitis but I reviewed my lab results and my HLA-B27 was positive, so I know what to expect.

It seems like yours is a lot worse than mine. That worries me a little bit. I think coming to this forum will help you accept your diagnosis a little better. That is why I'm here. Talking to other people who have this and kind of seeing what they are going through. Good luck!

Sorry it took so long, sometimes posts get lost in the mix. It takes a while to accept it, not sure if I have still, it's bee nalmost 2 yrs for me now. Thing is it's here and you can't change that, so you deal with it. A great understanding doc goes a long way, and can really help you understand things and get you to some kind of "normal". Remission does happen and you are young so perhaps it'll happen for you. If not that's ok too, you will learn your limits and find ways around them. Please fele free to vent here, we all understand.

I'm a 22-year-old living with it, though I don't have the added challenge of children at the same time. Acceptance takes time. It becomes easier when you find a treatment that works "enough." After being diagnosed last October, we finally found a treatment that makes me feel human again in July of this year. It's much easier to put the anger and feelings of injustice aside when you're not in debilitating pain every moment of every day. The pain is still there, but I can function now. I believe that day will come for you too. It takes time and a good working relationship with your doctor.