I had a rotten childhood. Alcoholic mother, unaffectionate father. Couldn’t wait to get married & get out of the house. But the husband was a rotten apple. He gave me two beautiful sons. My two sisters live far away & most of the people I worked with for 45 years have forgotten about me. I had two months of a great retirement, then injured my shoulder, & had three surgeries in two years. I am in chronic pain, do everything I can to feel better but my favorite part of the day is nighttime when I don’t have to think about anything. I don’t have the drive to do anything, mostly because I end up in bad pain. So I sit in my arm chair, watch tv, & if someone calls, try to act normal. My younger son who is 35 lives with me so I depend on him to do errands. He has Aspergers Syndrome but is high functioning. He has many of his own problems but would do anything in the world for me. He is the only one I see & talk to each day. My oldest son is an attorney in another state. I think he wishes he could do more for me but he loves his life & I want him to be happy. I have two younger sisters who live 2 hours away. They married great guys, have great kids, go on vacations & call on occasion. I hear them telling me to get out more, join the senior groups, I’ll feel better. But nobody knows what chronic pain is like unless they have it. If I get up from my chair right now, & start doing something , even taking a shower, the pain will get worse & I’ll be sitting back down in no time. Doing my exercises results in the same way. Maybe God will take me soon, but first I need to get a special needs trust for my son so he will be taken care of.
I had chronic pain for 24 years, since I was 19, I’m 44 years old now.
I was seen by many doctors and chiropractors for all these long painful years.
I was told I had a “herniated disc” and all I needed was a spinal adjustment, which didn’t help at all.
Finally on January,2016 I went to my family doctor and I was determined to have an MRI, and a referral to a rheumatologist.
The Rheum suggested first an Xtray and showed nothing, and tried to brush me off, I insisted to have a blood test and an MRI.
A month later he called me for the result, i was diagnosed was “Ankolosing Spondylitis”
So my ankylosing spondylitis was misdiagnosed, overlooked and untreated for 24 years by many doctors and chiropractors.
Currently I have an inflammation in my neck,entire back, rips, hips, pelvic,buttocks, and every single joint in my body.
He started me with anti inflammatory medications such as Naproxen 500MG and celecoxib which did absolutely nothing except horrible side effects, then he put me on Simoni injections “TNF inhibitor” once a month, that didn’t help, right now I’m on Humir another TNF inhibitor twice a month.
I been on Humira for 2 months now and no improvement at all, but I’m willing to take his advice and give it at least 3 months to notice any improvement.
Right now im taking my injections plus oxycocet for severe pain, and Venlafaxine for depression and anxiety.
and just hoping and waiting ….
Thank you for taking the time to read my story
I have been battling chronic widespread pain seriously since I was 16. I am now 3 months from turning 24. I have trained forntwo careers and been bullied out of them by my pain. I have lost the ability to throw myself headlong into any of my passions. I feel as if I always hear how your younger years are your best, the years to start your career and find your self. Rather I have found progressively worsening pain, lack of will to continue trying, and not much in my forseeable future to push me on.
I finally fought my way into xrays and mris after a fall left me stuck in bed for two weeks. The doctors have more testing to do but they have decided that my back, while my main pain point, is not damaged. And ill be honest… That news devestated me. I had secretly been holding hope that it would be something a simple surgery could fix rather than a mystery.
Now i hear I sit, my eyes wet with uncontroallable tears, daily, seeking the strength to go on. Seeking the fire I know is somewhere deep inside, to make like the phoenix and raise from the ashes of all thats been taken away…. Chronic Pain has stolen my careers and passions.
Paired with having polycystic ovarian syndrome with high testosterone and insulin resistance I feel as if I have no identitiy beyond sick. I already struggled with being told I could never have kids and the chronic pain limiting so much of the rest of my life leaves me feeling far less than human most days.
Ive never been the type to share my story and seek the comfort of a community but I have discovered what a wonderful community of people those dealing with chronic pain is. I have discovered spoon theory which has finally helped me save my relationship with my fiance. But I still have many mountains to climb and many mysteries to probe, and at 23 it seems so hard to look into a future of simply coping with pain…
When I was 16 I was first diagnosed with Crohn’s Disease when I was in horrible stomach pain and kept losing blood in my stool everyday for two years. A doctor finally found out that I had crohn’s disease and I spent the next two years on prednisone until I stopped losing blood. Many people did not understand when they wanted to go to social events I could not go from pain and no energy from losing too much blood. I finally learned how to control the disease with diet and keeping stress down and letting things blow off my back. Fast forward my life ten years at 24 I had become a truck driver and was finally making the kind of money I could purchase a house, quality vehicles, and be husband material. As in I could provide for the ones I loved or wanted to love. At 26 I went to sleep and woke up with a little pain in my back. Thirty days later I could not walk because my left hip was just radiating pain. To try and stand on my leg or put weight on my leg would send me to the ground in pain. My right arm was frozen so it would not move at the elbow and was locked. Trying to move my arm would send pain radiating down my body to send me to my knees.
I quit my job and came home trying to figure out what was wrong with my body. I spent 45 days in the hospital learning I had Ankylosing Spondylitous on top of the Crohn’s disease. I spent the next four years using a cane to walk because my left hip was too damaged. I was put on disability and told they were not sure what would happen next to my body. My doctor prescribed me the drug that you sit in the hospital with a IV drip. The medicine felt like someone took your stomach opened it up dumped battery acid in their and closed it. After the medicine I would limp back home and then sleep the rest of the day because the stomach pain was so bad my eyes could not stay open and my body wanted to shut down because the pain between my stomach and back was more than my body could handle. On the third dose of the medicine (taken one dose per month) my body rejected the medicine having convulsions and I thought I was dead. My body shut off and the normal thinking was gone. My brain was too busy trying to keep control of things like blood pressure, heart rate, oxygen level, ect. I remember I came home later after my body was under control. Still unable to walk and just thought Thank God I am still alive somehow someway I have no idea how.
Next my doctor prescribed Humira a Miracle drug in itself. After a year of injections I regained my ability to walk with the shots and pain pills. Oh my God what a relief to be able to wash my body with my hands/arms that function like a human being again. I decided to go to college because I did not want to accept my disability and wanted to make my money not accepting a hand out. Just way I was raised. I finished a Bachelors Degree in Business to try and get back on my feet. Guess what hmm No Business in the world wants me because I have been disabled and have been unemployed for 6 years because of losing ability to walk. Totally beyond my control; however, still counted against me I guess.
Now I have been removed from disability because of having a degree after dozens and dozens of no return phone calls for jobs. Sad I worked 12 years prior to this without ever calling off any job I had no matter what and working double/triple overtime. What to do with my life now. I know that now my days without Humira are limited which means my ability to walk, bath, function as a human, and sleep are limited. I still remember when I could not hold a quart of milk in my hand because it would hurt my arm so bad from the weight on the elbow joint I would drop it. I was not able to use actual glassware because my hands shake and drop stuff so I use plastic instead.
Humira was a blessing to me and now the insurance companies will not even touch me for less then $600 a month with no coverage for the first two years I am paying them. What a great medical system we have where you are caught in the loop because of life that is out of your control. I know not being able to sleep for 3-4 days straight from pain all over my body and hallucinating from sleep deprivation is not a place I am going back to. My hate for God just pours through my soul like blood. How can one person have to battle two life altering diseases. No human can battle two diseases inside that feed each other gasoline to ignite the flame.
I now look at the road that I am supposed to go down; however, this time around God can have his soul back or whatever it is because I don’t want it anymore. I have lost my will to live, my faith, my happiness, and everything that I have held onto for over thirty four years. I think about what my family will do once I am not here. Will they hate me? Will they understand? Sometimes pain is more then the human body can withstand the mind, body, and soul just searches for relief no matter the cost. All I ever wanted in this life was to be able to repair peoples vehicles, buy a house, and have a family. Now those things are gone with the wind as this disease is going to take me down this time. This disease can take me down; however, I can take me out to end the misery and pain.
I look at my life and all the times I tried so hard to hold onto my dreams and continue to make my dreams a reality. It was in vain and I now look back at the day I almost lost my life in the hospital from the Remicade and wonder if that would have been better to have gone out that way. Now my only wish is I want my ashes to return back to Ohio where I came from and spread out on the streets where I used to play and run around as a kid. I don’t know how or when I crossed the thoughts of hating and blaming god for the hand I was dealt in this life. However, now their is no turning back because I look at this life and think that if this life is any representation of heaven then it is no place I want to be and part of me believes everything that I was fed about God is all bullshit anyway and the only thing on the other side is dirt and grass. Who knows who cares.
Sorry for such a long post just someday hopefully their will be more public eye on this condition of ankylosing spondylitous and people will understand that it is not just a form of arthritis. I would have rather have been dealt cancer because at least then you get to die instead of just being tortured until you go crazy or the pain gives you a heart attack.
Hi I’m 18 years old and I’ve been in constant pain since the age of 10 and no doctor wants to do anything about it. I’ve been to the hospital over 50 times trying to figure out what’s wrong with me, but the doctors don’t do shit as usual, I’ve been getting constant headaches for the past 6 years that never go away literally, my back is in constant pain. I have a red circle patch in the middle of my back with weird hair growing on it and it aches, I can’t stop thinking cus of the pain so I never really get to relax, I forgot what relaxing felt like, and forgot what happiness felt like and emotions too. I’m aching all over and I have no friends my family treats me like shit and doesn’t take me seriously. I’m honestly at the point where I’m gonna kill myself cus no one gives a shit and I guess I’m just a number after all so fuck you all…………..
I had an epidural neck injection for a herniated disc at C3-4 andC5-6. They brought me into the room to do my injection and one of the nurses mentioned that the women at the front desk weren’t processing patients fast enough and they really needed to rush through the procedures so they could have lunch. Of course laying on the table and hearing this made me very nervous. When they did the injection I felt the most excoriating pain throughout my entire body, my arm shot up and I could not control myself from screaming. My husband brought me home and I was in terrible pain. The entire left side of my body locked up (the right side is where I was having issues before the injection). I spent a month in bed, barely able to walk. I was told I would be ok within 24 hours, but obviously that was not the case. I called the doctor day after day crying and telling them how much pain I was in and they wouldn’t do a thing about. Finally the allowed me to come in and see the doctor, he didn’t even look at my injection site and made a joke saying I was fine and part of the needle wasn’t stuck in my neck so it’s all good. He would not admit to anything going wrong during the procedure and I still have no idea what happened. I am now doing physical therapy, I’ve done one month and have two more to go. The therapy has done nothing at this point and I have been told that I am in so much pain, because my muscles overreacted to the trauma from the injection, which has caused my head and shoulders to be pulled forward from the muscle tightness. I am in pain 24/7 and have no idea what to do. Has anyone ever heard of this happening during an epidural injection?
When I was first diagnosed with chronic daily headaches and migraines, I didn’t understand what it meant. It’s so much more than endless pain. Sometimes, it’s being woken up at four AM by the excruciating drilling pain of a cluster headache, and firmly deciding to be “okay”: mentally, emotionally.
I didn’t know that chronic pain would mean experiencing sometimes-overwhelming disappointment when a treatment didn’t work.
I didn’t know that it meant learning to let myself rest when I needed to.
I didn’t know it meant having to deal with disapproving relatives. Disapproving doctors. Hundreds of tests. Hundreds of different opinions, and very few options. Missing Christmas dinner. Missing the family reunion and birthday parties. Losing close friends, because they cannot understand why I keep canceling plans.
I didn’t know that chronic pain would mean feeling guilty for having pain. Feeling like a heavy burden on my family because of my inability to work, or to even do the dishes. Feeling completely exhausted. Feeling completely overwhelmed with sadness. Feeling so angry at myself for not being able to do more.
I didn’t know about all the different types of headaches I’d experience — horrible, cyclical cluster-headaches, icepick headaches, sinus headaches, the monthly menstrual headaches which can leave me incapacitated for days, nausea-inducing migraines — all on top of my normal, already-painful daily headaches. I didn’t know that sometimes, all of these would happen at once.
I didn’t know that I’d feel so alone.
I didn’t know that thirteen years would pass by, and I’d still have no answers.
I didn’t know that, at twenty-two years old, I’d feel so broken by pain.