Turning Point

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…

Ankylosing Spondylitis Destruction Of My Life

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.

I’ve been in constant pain for 8 years

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…………..

Epidural Neck Injection Gone Very Wrong

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?

Life With Pain

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.

Compartment Syndrome Journey for Teenage Girl

When I was in the seventh grade I was winning my division in road races and running state ranked times in cross country. However, when eighth grade XC season came around I started experiencing extreme pain in the calf when I would run or walk strenuously. My school trainer said it was growing pains so I continued to try to run although most days would end in a fall to the group and crying from the severe pain. I didn’t think the pain could get any worse- I was wrong. I was to the point where I couldn’t run at all. I kissed goodbye my state ranked times and my training schedule and fell into a stretch where I was so mad with myself that I didn’t want to do anything. My mom took me to an orthopaedic doctor at the end of season and he said the pain was being caused because my bones were growing faster than my muscles. He sent me to physical therapy. I did PT for a few months while I continued on in basketball season. I could only stay in the game for minutes at a time before I couldn’t feel my leg anymore and had to sit out. I decided to take the summer off from running and thought that a break may help. I returned to the XC team my freshman year. The pain was still there and only getting worse. My basketball coach and a few teammates suggested that I was faking just so I didn’t have to do the running. My mom took me to another orthopedic doctor hoping for a new diagnosis. He said that nothing was wrong and I should do more PT and stretching. Crushed once again, I did what he said. Track season rolled around and I only did the short distance races but still in pain. At the last race of the season, during the 800, I felt a pop in my foot and fell to the side of the track. I was in a great deal of pain and could barely walk. As I sat and iced my foot at the meet, my cross country coach came up to me and informed me that he had been researching my symptoms and found something called Compartment Syndrome. That night, my parents and I researched it and the symptoms matched exactly. We went back to the previous orthopedic doctor the next day. He diagnosed my foot as having a fracture and gave me crutches and a boot. When we asked him about compartment syndrome- he completely turned it down. Just when we thought we’d finally have an answer, we were yet again crushed. However,my mom wanted to get a second opinion. So we went to a new doctor but he didn’t have any appointments open for a few months in advance so we saw his assistant. She immediately suggested compartment syndrome. She had just been to a conference on it and my symptoms matched exactly. She said my case was so obvious that she didn’t even have to do the pressure test- god bless. My mom and I left that appointment crying tears of joy because this long journey of doubts and unanswered questions could finally come to an end. But..it was just the beginning. My first step in my recovery process was to heal the fracture. For three months over the summer I was on crutches then a few more in a boot. By the time it was healed we were a few months into my junior year. My surgery date was finally here. This surgery was so painful and the recovery process seemed like it lasted decades. After months and months on crutches and months of learning how to walk again, I was finally able to start doing activities like biking. I moved up to the elliptical and swimming then finally running. When I ran again, the symptoms returned…only in my other leg. We immediately went back to my doctor and he said, sure enough, that compartment syndrome often occurs in both legs. I was scheduled for surgery in the next 3 weeks. This time I knew what to expect. I religiously took my pain pills and wanted to push myself to walk sooner so hopefully I could run at the end of track season. Two weeks post op I learned how to walk and the day after I boarded a plane down to the Caribbean Island of Saint Maarten. I kept my fresh scars covered with bandages- which left some gnarly tan lines- and by the end of the week there I was able to hike and walk normal. I am a senior in high school now and just recently got cleared to run again but have not yet because of the fear. I am scared that the pain will still be there- whether it be the surgery didn’t work-which is fairly common- or a new pain arose from the surgery.

I still have 4 very large and visible scars along with no feeling in my ankles. I am patiently awaiting the day where I am not scared to do what I love again- just run. I think about giving up running but then remember why I’ve held on for so long. This will never be over for me, and it’ll always be a fight, but it is possible and I’m going to prove to everyone, but more importantly myself, that I will run again- stronger than ever.

A Hermit and Her Herniation

I am a mother of three, 14, 5 and 2, who in my previous life was the primary breadwinner for my lovely family of five. I was a tax manager at a large public accounting firm and it was 4/13. I got home from my who knows how long of a workday and at some point sat down in the recliner and kicked back only to feel a foreign pain shooting down my right leg. I said nothing and went to a fitful night’s sleep. Next morning I painfully got ready for work, having dealt with numerous lower back pain flare ups starting with my first pregnancy and labor during which I broke my tailbone (who knew that was a thing?) I was used to working through pain so I pressed on. The drive in was the most excruciating thing, but goodness it was 4/14 and I’m a tax manager so…I closed the door to my office and feigned total busy immersion. I called my husband to bring me a heating pad and ice packs. I almost overdosed on the little packs of ibuprofen the firm put out in baskets for us screen gazers (three at a time). I left the office before lunch and have never been back except to gather my things.

That was 4/14/2015 and I am still in constant pain. The spine docs took one look at my MRI and listened to my symptoms and I was in for a microdiscectomy lickety-split (I mean, you know, it all goes slow as molasses so that’s relative).

I remember those first few weeks after surgery , things felt so rosy, I still felt pain but I could chalk it up to recovery, it would all be better soon. I started my post-surgery rehab just as prescribed with an inspirational therapist paralyzed from the waist down. Every time ended with me hanging in a pool on a noodle because any other effort caused me too much pain to continue. So you know, I am no wuss as far as pain, three natural labors (I’ll spare you further details) can attest to that.

One month after surgery prompted by my continued pain and therapy performance I got another MRI. When I went over it with the PA she said there was scar tissue that was probably causing my pain but that the herniation (L5-S1) had been “successfully” removed.

I have since have three failed epidural steroid injections, I have been under the care of a physiatrist, who really has done nothing but try to give me some awesome cheerleading, he said he has been dealing with a “similar” herniation for 21 years. So I suppose from that I should take what, that I should get off my ass, suck it up, what?

I am on so many medications. I never think they work until I miss a few doses. I know all about alternatives, have tried acupuncture, have a really great golden milk (turmeric) recipe, have bought out Sam’s Club’s supply of epsom salt, have made my own pain cream with solar-infused arnica and cayenne, menthol, MSM. It feels nice but come on, it’s all temporary.

I am in the process of switching GP’s in the hope I can get some revived attention. I had been fortunate to have been receiving disability insurance, but they and SS have recently denied my claims. I have cashed out my meager 401(k) but am still under so much water.

I rarely leave the house (that I can’t afford) except for doctors. Fortunately, or unfortunately, depending on how I am looking at things in that moment, I have always been an introverted hermit. I don’t know if that will be my saving grace or my downfall.

You are not alone