Hello all, well I'm a 25 yr old female who has had 2 failed back surgeries at L4-L5 and L5-S1 along with degenerate disc disease and osteoarthritis and a few other health problems that cause pain as well like endometriosis, ovarian cysts, asthma/copd, diabetes, high cholesterol, perm nerve damage in both legs and arms, carper tunnel, tmj, and depression and anxiety. Since i turned 18 I've been pretty sick, from the ages of 18-22 i had 11 major surgeries for all different things. I'm now at a point to where I'm refusing all surgeries unless its a life or death matter because a few of those surgeries were repeated and didn't work and still left with pain and actually the pain has doubled since the beginning. I'm joining here because i just need support from other people who know what I'm going through because sometimes it just gets hard and feels like I'm the only person that's this young with this many problems. Lately I have had a bad problem with doctors and pharmacy's discriminating against me because mi so young and look like there's nothing wrong with me but the past 3 years of my life i have woke up every day in a lot of pain. The surgeons have told me to do a inter-body fusion at L4-L5 & L5-S1 but a lot of people i have spoken to and seen have said to not do it because they have not gotten any better and there pain was worse than before, and my past surgeries didn't work and made my pain worse so why would i go and take the risk of becoming in MORE pain than i already am. Plus from what i have read is that the fusion could possibly herniate the disc around the fusions or in 10-15 years it could possibly need to be re-done. I still have like 60 years left in me. lol. I'm to young to be doing a surgery so serious and even though I'm in pain and i hurt everyday, i don't want to take the risk of possibly coming out worse and then what could i do? The surgeon told me to do the surgery or live on pain meds for the rest of my life. :`( Currently im taking pain medication, the pain meds work well but i cant live on them the rest of my life. I have to find some sort of alternative and unfortunately i have to wait because im still battling disability and have been for 3 years now. I hope that when i do win my disability i can go back to school, get some of the medical things i need done, and hopefully one day find something that i can do for work with a career.
But taking the pain medication i have been treated sooo wrong. I have had a pharmacist refuse to fill my meds and call me a drug seeker and that's all i wanted, she went crazy on me becauyse im 25 and look normal. She lost her job over the situation though, so justice was served there. I do not abuse my pain meds, been on the same meds for 3 years, I get them from the same doctor and the same pharmacy. But i had moved and switched to a different location and been there 2 times before and then she wanted to give me problems. Im not a drug abuser, i dont look like a drug addict or junkie, and if i didnt have to take pain medication i would never touch them again. Then i went and seen a neurologist in december bc i needed a new mri of my spine. When i first met him he was rude and wouldnt let me speak, asked like 5 questions and 3 of them were about where i get my pain meds from and i get them from a doctor. He told me i should not take any pain meds and to immediately taper off them. I asked what i should do about the pain and he said to just suck it up and deal with it. I dont think he believed anything i said. Well he ordered a MRI of my whole spine, C & T & L, also MRI brain and MRA brain. He also ordered a EEG, nerve test of my arms and legs, and a vision and hearing test on my central nervous system. Well i did all the test but one bc hes a complete jerk. Well i went into his office to finish the nerve test on my legs and get the results to everything else. Well my lower back has 2 herniations and my neck has 2 herniations. I have permanant nerve damage in both my arms and carper tunnel disease. The vision test called VEP came back abnormal and have no clue what it means. Well they couldnt do the nerve test bc my referral had expired. The doctor came into the room and said "are you still taking pain meds" i said "yes" he got up and walked out of the room and said "im done with you" i was so confused, i thought i was there for the results too! He refused to sit down with me for 5 minutes and read me the results to all my test bc i was prescribed pain medication. I was so mad and upset that i was treated like that, it was so wrong. He did like $15000 worth of test on me, the county paid him for those test, and he couldn't even be professional enough and set his OPINION of me aside and read me the results. I still to this day have no idea what some of those tests mean until i get into my doctors office and have them read to me. Its just really sad bc if i was a 45 yr old woman with these same problems and take pain meds nobody would look past it but bc im young and normally people my age aren't this sick. But i def filed complaints against both of the people who discriminated against me. Nobody deserves to be treated like that, i didnt ask for these problems, and i definately dont want these problems, but its the hand i was dealt and im living it the best way i can. Trying to have a positive outlook on life and stay positive, sometimes its hard but it could be worse.
I plan to write more on here and hopefully get some support from people who have had to go through things like me. If there is another forum or website that could help or even emailing let me know. Thanks for reading some of my story!
You and me are just alike I feel so sorry for you I really wish I could help you.I have gone though all the things you have talked about.I am older than you but you are right very right this is the hand we were dealt.I have had 2 failed back operations that left my low back in a lot of pain and my right leg and foot.The doc told me I need to try a spinal stimulator so I did.I have had the implant for 4 months now.It takes the pain out of my leg and helps just a little bit for my foot.It does NOTHING for my back.I was also told I would have to live with it and take pain pills the rest of my life.Oh yea then the doc added that taking pain killers all the time will also shorten my life.
I am 44 now, but started down the CP road at 20. I know what you mean about Pharmacists and Dr.'s giving you "THE LOOK" when you pick up scripts or talk to them about how much pain you are in...it's not fair. But, there are so many "idiots" out there that make it hard for us "non idiots" to get respect. Don't take it personally. The only person you need to worry about is YOU...You are so young, and I hate that this will get worse as you get older...the pain I mean. I'll be on Pain meds for the rest of my life...nothing I can do about that. What I can do is live my life for me...nobody else.
We, CPer's, have to work 10 times harder for the same health care as others get...we are looked at like we are JUNKIES or taking advantage of the system. As long as we know what's going on with us that should be enough....Don't Dwell on how everyone else feels.l
All that added stress makes our pain worse. I've had 2 failed back surgeries, am Diabetic, have High Blood Pressure, Arthritis, Osteopenia, and DDD, DJD... I'm sure I missed some things...and I've just applied for SSDI and SSI in January.