Twenty years ago I fell down some steps and need a back operation for a herniated disc. The sciatta went away after that and I was not in pain anymore. Recently the sciatta pain came back. I went to a chriopractor and he worked on my body and then took a massage machine and put it directly on my back where I had the operation. I had immediate pain in that area. I had to get a cat scan and I now have spinal stenois and bulging discs. I went to a neurosurgeon and I had a steriod epidural done. I was pain free for one month and then the pain came in my left leg. I can hardly walk because I am in so much pain. I am very limited to do anything. I have been waiting for another appointment to get another shot for 2 weeks now. I am so desperate to get any type of help. I am hoping that the next shot will work and that I will be pain free for a long time.
Besides a couple bad falls off of horses and a sprained knee in soccer, I was always a very healthy kid. I’d get the normal colds that all others kids got but nothing overly serious. I was very active between horses and sports. My Mom joked that I was always on the go. I actually never even slept a full night until I was 3 years old. God bless my parents for not giving me away.
Fast forward several years to 2006 when I was 23 and working as an emergency dispatcher for Shelburne Police. I had never had a uti in my life so was shocked when I had one. I figured a dose of antibiotics would help. Sadly 3 months later after numerous courses of various antibiotics I still had constant pain, burning, and urgency. I was scheduled for a cystoscopy and the Dr told my Mom that I had the worst case of Interstitial Cystitis she’d ever seen. Basically my body attacks the cells that makes the lining to my bladder meaning I don’t have a lining and my bladder bleeds when it gets too full. It’s considered an autoimmune disorder. After the initial shock, I went to physical therapy, tried different procedures, changed my diet (many foods flare this), and started on the only FDA approved drug at the time for IC. It took a good year to start to feel OK again.
My life continued as a dispatcher working long hours and lots of overtime. In 2009, I also became certified as a part-time police officer and began working part-time in 2010 at another Police department on top of my full-time job. I worked nonstop and enjoyed my horse and visited my family back home in NY in my little bit of spare time.
In 2011, I had a minor ankle surgery to remove some scar tissue and stopped working at the other pd part-time. I then sadly had a fall down my stairs which resulted in another surgery in my knee to remove some neuromas in 2012. All went smoothly after that surgery as well.
In February of 2013, I left Shelburne Pd full-time and started working as a Mental Health Interventionist. It was my dream job. I loved everything about it. It did require extensive walking though. My legs became pretty sore but I figured it was just from walking upwards of 14 miles a day. I gave myself time to adjust but when they still were super painful, I went to see my orthopedic Dr. He wasn’t in so I saw another Dr who said it was my plantar fasciatis (I had it for years). She recommended pt. I went to pt and luckily ended up at a good one. After a few sessions, I was told that he thought I had a rare condition called Exertional Compartment Syndrome (basically, your legs swell which cause the pressures in the compartments of your legs to become super high). He said my ortho probably won’t believe it at first so to be adamant for testing.
Of course, my ortho said that it was rare and highly unlikely I had it and sent me for nerve testing. At that test came back negative my Dr said :” I think you have a rare condition called Compartment Syndrome.”. Excuse me, but no shit sherlock! He then sent me for more testing.
For those that haven’t heard of the testing, it’s not anything fun. They have a very large needle with a gauge on it. They numb your legs in four different places and then put the large needle in to get the pressures of each compartment in you legs (there are 4 in each leg). They then have you get on a treadmill until the pain is really bad. For me that was only about 2 minutes. They then do the same testing again. Your pressures aren’t supposed to over the number of 5. Mine were over 90. The Dr said I shouldn’t have been able to walk ten feet, let alone 14 miles.
My ortho then recommended me to a sports medicine Dr because it was out of his area of expertise. I was scheduled for a bilateral fasciotomy of all 4 compartments of my legs by the new Dr. Basically they make 2 incisions in each leg and they release the fascia which is what surrounds each compartment. This in turn is supposed to give more room in my legs and relieve the pain.
My surgery was at the end of August. It’s a very painful surgery and I was supposed to be back to work in 3 months. The surgery was extremely painful and healing was slow. I ended up getting an infection and “spitting” the dissolvable sutures out. I also got a uti at the same time and had to go on my usual antibiotic. For the first time ever, I had a very severe reaction to that medication and had to be transported by ambulance to the hospital.
Time went by pretty fast and I still wasn’t getting better. Three months came and went and my short-term disability went to become long-term. I’ve always been a workaholic so not working was very odd for me. My boss was amazing and held my job for me.
My surgeon then sent me to a foot and ankle Dr for more issues with my plantar fasciatis. This led to several casts and non-weight bearing for months and finally surgery on my foot in August of 2014. At this time, the Dr’s made it clear that I would not be working anytime soon. I was diagnosed as having chronic fatigue and chronic pain as well. The surgery on my foot was unsuccessful and I found another Dr. He also immobilized my leg in a walking cast for up to 4 months. Still no relief. Which led to finding yet another specialist. He stated that my foot had been injected so any times that the steroid ate away all my fatty pad to the bottom of my foot.
This reminds me that I did forget to mention that for years, I’ve had intra-discal injections in my thoracic part of my spine. I’ve had Thoracic disc degenerative disease and
Thoracic spondylosis w/out myelopathy for years but kept working throughout those treatments.
Back to the rest of my story. I then went to another pt who specialized in foot problems. She was absolutely wonderful. Her and the owner of the practice actually listened to my symptoms. They tried literally everything they had to try with no luck.
I then went to see a vascular Dr who promised to figure out what was wrong and ordered a bunch of tests. After waiting and calling several times for my results (also I was given the wrong results at one point), the Dr called me and simply said, there is nothing wrong with you, go back to your primary care. So much for promising to figure things out!
This led me to seek out another vascular surgeon at another hospital. The second he examined me, he said you still have compartment syndrome. My mind was blown. My other Dr said once I had the surgery, it was fixed. The new Dr then informed me that 11% of patients have it so severe that the fasciotomy doesn’t fix the problem. He said I was one of the unlucky 11%. He also advised me that I was born with abnormally large calve muscles which takes up a lot of room in my legs.
I had the pressure tests done again but just at resting this time and it was confirmed that I still had compartment syndrome.
During this same time, I also saw my pain-management Dr who recommended me to another who he looked up to. My first appointment with her confirmed that I had CRPS type 2 (Complex Regional Pain Syndrome) caused by damage to my nerve in my leg during my first fasciotomy. The key to this very rare disease is early diagnosis (6 months or under). I had gone undiagnosed for almost 2 years! It was now July of 2015.
CRPS is the most painful condition known to man. It is known as the suicide disease because of the high rate of suicide due to the pain. It is rate the highest on the McGill Pain Chart, even rating higher then over 24 hours of natural child birth and amputation of a digit with out anesthesia. Basically, your brain is sending constant signals to the area and it feels literally like that area is on fire. This is no exaggeration. There are also no fda approved treatments for this terrible disease.
In August of 2015, I underwent a bilateral fasciectomy of all 4 compartments. With this surgery, they actually removed 3x3inch pieces of fascia from each compartment. This was by far the most painful surgery ever. To go along with that pain, any injury or even something as simple as a blood draw makes CRPS flare and spread. I was in the hospital for 5 days. I won’t go into detail how terrible one resident was to me but there were several complaints made by not only me.
This surgery was quite rare. The last day that I was there, during rounds, about 8 Dr’s came in. Most were interns since it’s a teaching hospital. They all wanted to unwrap my legs to see this rare surgery. My Mom joked that it was like a an episode of greys anatomy where everyone wants to see the odd case.
I returned after 10 days to have my staples removed. When, I stood up out of the wheelchair to leave, I felt something warm on my leg. I looked down and my one incision had burst open. This led to my Mom running, while pushing me in the wheelchair back into the Dr’s. My Dr said that the pressure was still so high in my legs that it caused the incision to give out. This led to months of packing and cleaning the wound.
During this time, I continued to see my pain management and try several different treatments for my crps. This included topical ketamine cream, oral methadone, medical Marijuana, oral ketamine, low-dose naltrexone, and etc. Crps is resistant to narcotics so not even dilaudid helps the pain.
I then ended up with a bad infection in my other leg that landed me in the ER for 2 days of Iv antibiotics (thank God for my Mom who has cared for me through literally everything). The infection still wasn’t clearing up after 2 doses of antibiotics so it was confirmed to be MRSA. Finally after one more dose, we had the infection under control.
In November, I ended up in my local ER for severe pain. They said there is nothing they can do for CRPS (most Dr’s have never even heard of it) and gave me dilaudid and told me to see my pain management.
I called my vascular Dr and explained to him a feeling of my legs being eaten from the inside out. He said it was probably my CRPS but it didn’t feel like it to me.
Later in the week, I saw my pain management for a follow up and she saw how red my infected leg was and referred me back to the ER. There, they did an ultrasound and said I still had cellulitis but it wasn’t infected. I reiterated with them the pain and they ordered studies of my legs for the next day.
I came back the following day for my ultrasound which confirmed my legs were filled with dvts (blood clots). The tech then sent me directly to the ER and I left that night having to now give myself injections of blood thinners in my stomach 2x a day.
Next came trying to get my INR where it needed to be. That included blood draws 3x a wk. Don’t forget how much these aggravate crps. I saw a hematologist who said that unless I wanted to test that there wasn’t much point because once you have dvts, you are prone to them so you would do the same treatment and preventative care down the line. It would have been important if I had planned on having kids since it could be passed to them but I’ve never wanted kids.
I ended up being on the injection for 6 wks which was followed by 3 months of Coumadin. My blood clots are lodged with me permanently at this point. I’ve had numerous trips to the ER to be checked for new ones since it’s very hard to differentiate between my crps, compartment syndrome, or blood clot pain. I also had to come off of estrogen which was one of the things that helped my interstitial cystitis. My IC is badly flared by having my cycle so the estrogen stopped my cycle.
This of course ended up causing more issues which led me to find a new gynecologist and urogynocologist for my IC. It’s very difficult to find decent Dr’s that understand all of my rare conditions. My previous one was actually very mad and down right mean about me refusing an iud because of my crps. I also saw a cancer gyno who specialized in difficult surgeries and we found that I was too high risk for a hysterectomy. After many months of trying all sorts of things, I finally had the nexplanon implanted in my arm. I have had some burning there from the crps but it seems to help (fingers crossed).
March of 2016 came and I was finally approved for my SSDI (social security disability). That was a huge stress relief! Around that time, I also went to see a rheumatologist. This is when I was Diagnosed with fibromyalgia and had my hip injected for bursitis. The Dr explained that my body is constantly fighting so hard that eventually it causes other conditions. Sadly, there are no meds that I can take for it because I’ve had so many reactions to them.
In the meantime, I followed up again with my vascular surgeon and was informed that short of removing my skin (obviously can’t do that), there was nothing else to do for the compartment syndrome. It’s better then it was but there is no further cure or treatment for it.
After that, my CRPS spread to my other leg, my back, and my face. It will eventually be throughout my entire body, including my organs. With it comes crazy sensitivity to things as simple as noises, vibrations, the bed sheets, or a breeze. My legs will also sometimes just give out without reason. I’ve had this happen when clipping my horses leg (he actually braced and caught me so I didn’t hit the ground). If I were going by pain, I’d be in a wheelchair now but I’m afraid if I got in one that I’d never get out of it. Another joy of crps is excessive sweating. Not sure how I got so lucky! Even just walking to my car can cause me to be drenched. It’s my bodies way of saying I need to stop and elevate my legs. This is a constant battle for me.
I just last week traveled from VT to Philadelphia to seek advice of another Dr who specializes in neurology, internal medicine, and pain management. The flight there was absolute hell. Not being able to elevate my legs is so painful. I ended up having to stay longer then planned for a skin biopsy. The Dr was the best I’ve ever seen and I ended up being diagnosed with small fiber neuropathy as well (up to 16 conditions for me). I have several other clearances and etc to get done but I do hope to be able to go inpatient to the hospital in Philadelphia for lidocaine infusions to see if that helps. I just have to figure out a good way to travel. I took the train home and it took 10 hours. The pain from the length of time and vibration was very intense. These are all things we take for granted and don’t think about until it happens to us.
I’m sorry this is so long but it’s my story. I went from being hard working and active to not being able to walk an 1/8 of a mile. Each day, I wonder if I’m going to be able to get out of bed. My horse is my therapy. I’m so grateful for the owners of the barn where I keep him and my parents (I’d never be able to keep him otherwise). I have a chair that the owners brought to the barn for me so I can elevate my legs as often as needed. Everyday, after a couple hours, I have to go home to elevate my legs and take a 2-4 hour nap. I used to cry myself to sleep at night because I missed working so much. The judgement from others is very hard to get over(especially if they can’t see on the outside what is wrong). I’d say I’ve lost friends but they weren’t really friends to begin with. My true friends and family are so beyond supportive. I hate never knowing if I’ll have to cancel last minute or have to leave early from a planned event. These are all things that I for sure took for granted before.
The way I looked at the world and my life has completely changed. If you asked me how I felt 18 months ago, I would have still been grieving. Now, I’m grateful for what my rare diseases have taught me. They are with me for life and incurable. This has taught me to choose what is really important in life. I thank God everyday for the support of my family and loved ones. Instead of asking why did I get these illnesses, I ask how I got so lucky to have the parents I have.
My advice is to never judge a book my it’s cover and to live life to its fullest. A rare disease can happen to anyone at anytime.
Stephanie Tanner (A rare disease warrior)
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…………..