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)