my story

I wanted to write this for those who are new to my blog or have followed me on Instagram but don’t know my whole story.

Like many who are chronically ill, I have several chronic illnesses which can be complicated to explain in a few sentences. To begin I want to share that I have Complex Regional Pain Syndrome (CRPS), Late Stage Lyme Disease, Ehlers Danlos Syndrome Hypermobility Type, and Chronic Inflammatory Response Syndrome.

I first began to deal with chronic pain  in September of 2011 so the past almost 6 years have been challenging to say the very least. So without further adieu and a promise that I will try to not write so much you fall asleep bored and drooling on your keyboard, this is my story of how I got sick and how I’m trying to get better…

A slow avalanche: how it began

Running my heart out. This was 6 months before I developed CRPS.

In mid September 2011 I developed a running injury because I was trying to fix my running form to run faster ( I LOVED running).

Changing your foot strike is A LOT harder than it looks and one day after a short run trying out my new running style, I came home and had a TERRIBLE electrical shock go through my ankle as I took a step in my shower. After the shock my foot immediately started to hurt with a burning pain. After it had lasted a few days I emailed my physical therapist who had helped me with several other running injuries. He said it sounded like Tarsal Tunnel Syndrome from switching my foot strike and that I needed to take a break and just rest.

 Instead it got worse and worse.

I began to get nerve pain in my other foot. The nerve pain was enough that I stopped running completely, could no longer do any high impact exercising, and had a lot of pain if I stood too long at work. Most of the time it hurt with a hot burning pain but sometimes would hurt like my foot had been plunged into ice cold water.

After a few failed appointments and treatments a dr suggested doing an MRI to look to see if some mild back pain was indicative of what was also causing the pain in my feet. They found two mild bugling discs so I was told to do a spinal steroid injection and PT to see if it would treat the nerve pain in my foot.

On Monday March 5 2012, I had the spinal steroid injection and within hours my back began to burn.

I had had steroid injections before and never felt like this. By the end of the week the burning had spread up my back and down my legs. By Saturday I was in the ER in an extensive amount of pain and by Monday I had an emergency appointment with the pain management dr who had done the spinal steroid injection. He was unsure what was going on but said he would help me get whatever help he could.

That Monday I attempted to go to PT as it was part of my treatment agreed upon before the injection. I could barely walk and was in a lot of pain. My PT told me that he had no idea what was going on with the rest of my body but he was worried that I had Complex Regional Pain Syndrome in my left foot. This is a rare very painful neurological disorder that stems from an injury. You can read more here.

In short your brain gets stuck in continually sending nerve pain signals far past the point that the injury should heal and for unkown reasons the CRPS areas can spread for no reasons or because you injure yourself. The pain is so severe it can be painful to wear clothes, have a fan blow on you, or even have someone touch you.

Sadly I would not a real CRPS diagnosis until March 2013 which is detrimental when the first 6 months are crucial to helping people hopefully get into remission.

Sliding back into the spring of 2012, the mystery illness that had begun after the steroid injection continued to pick up speed and I had new symptoms emerging rapidly.

My joints began to hurt and ache. My right breast felt like ice cubes were on it all the time. My scalp burned and zapped along with my entire back and stomach and tops of thighs. I was tired climbing the stairs and constantly felt foggy. I began not understanding what people meant and often forgot things people had just told me. I was constantly nauseous.

I had tons of blood work, an emergency MRI to make sure I had no bleeding in my spine after the steroid injection, and multiple nerve conduction studies. My PT and Pain Management dr were concerned I had MS as I began to lose ability to move normally and as my body kept doing weird neurological things but MS doesnt spontaneously occur after a routine steroid injection.

At the end of April I FINALLY found some info online about people who had had weird reactions after a cortisone injection. It turns out if you have dormant Lyme Disease bacteria from an old tick bite you can have the disease be “activated/woken up” by a steroid injection since it lowers the immune system. I began my search to find a Lyme Disease specialist as I was running out of ideas from drs and kept getting sicker.

celebrating starting Lyme treatment. I look exhausted from being sick and desperately trying to find a diagnosis.

June 7 2012 I saw my first Lyme Dr and after a very long intense first appointment and a lot of blood work including a more extensive Lyme test it was found that I DID have Lyme Disease despite having a negative test in April.

There’s a huge issue with false negatives with Lyme Disease, here in Virginia doctors are now legally required to tell patients that even if their test says they are negative, they may still have Lyme Disease. It was also found that I had a co-infection of Bartonella. It is common for ticks to carry multiple bacterias which means people can get infected with several tick borne bacterias.

Treading Water : trying to get better

I began Lyme treatment June 2012 and would be on 1-5 heavy duty antibiotics on and off July 2012 – October 2014.

Lyme treatment is miserable as you feel way worse before you feel better (this is called a Herxheimer Reaction). I tried many other things including acupuncture, diet changes, Hyperbaric Oxyegn Treatments, and other “out of the box” treatments. I could barely work part-time at my business and struggled a great deal with pain and nausea, so much that I had to take a 3 month work break in late 2013 and sometimes was only able to work one day a week. 

Meanwhile after being formally diagnosed with CRPS  in 2013, I began a series of nerve blocks which failed. I then tried PT without many results and tried many medications that are helpful for chronic nerve pain but weren’t helpful for me.

All I wanted was to not be in chronic pain all day and be able to start a family with my husband and work on building my business.

Falling Off the Cliff: how things got worse

February 5, 2015 I went to see my main dr who wanted to try a new technique on my CRPS foot.

Unfortunately the treatment failed and my body, for whatever reason, decided to make my CRPS far more severe than it had EVER been. I was immediately bedridden and unable to walk normally because of the pain. I couldn’t wear shoes for a month. My husband had to carry me to the car and the pressure of the water from the shower could make me yelp in pain.

As time moved on and it became clear this wasn’t a temporary “flare” I finally began using a wheelchair anytime I left the house as walking was far too painful. The rest of the time I lay in bed in pain alone.

I closed my beloved business and watched the only normal consistent part of my life slip away.

It was awful.

That spring I began seeing a new neurologist who helped me find out through extensive testing that I had mild brain damage in both frontal lobes, small fiber nerve damage, POTs, and vestibular issues all from the Lyme Disease which was thankfully found to be in remission during that testing.

It was hard to find out that the Lyme was in remission but to still be SO sick and in pain from the CRPS. Being in a wheelchair and in terrible pain was never how I imagined I would be with Lyme resmission, I thought I would be feeling great and able to work out and have a full time career again.

The neurologist also helped me begin IVIG treatments to help repair the damage from the Lyme and hopefully help my CRPS calm down.

my weekly IVIG infusion. photo by jewel peach.

By June 2015 the CRPS had spread up to my knee and into other foot.

While the IVIG treatments helped with a lot of the small fiber nerve pain and some of the joint pain that the Lyme had created but IVIG did not help my CRPS pain at all and often gave me terrible headaches and some spectacularly miserable migraines.

In late Novemeber I  tried another treatment called Calmare Therapy after my CRPS spread again into my entire left leg up to my hip.

my first day of the 10 day Calmare treatment process which I thankfully got for free because my dr was considering buying one.

I was terrified it wouldn’t work and when it didn’t,  I felt completely despondent and that I was running out of options. Its so hard to feel like you are up against a wall and just repeatedly running into said wall.

In March of 2016 I began ketamine treatments for my CRPS.

These treatments were the first thing that gave me some relief. I began PT that May to start the very long arduous path of relearning how to walk and hopefully gain the strength and mobility to walk without any mobility devices.

I was still in a lot of pain but had my pain ebb and flow sometimes instead of hurting intensely with no break. I began to be able to take an Uber and wheel myself to appointments. Things were hard but I finally had a treatment that might give me some of my life back.

Ketamine infusions gave me hope especially in October when I had 3 days with NO pain. I had not experienced a pain free existence since early September of 2011. Even though it only lasted 3 days it helped me remember what I was fighting for and I felt certain maybe I COULD get better.

doing standing yoga during my 3 ketamine infusion. this was the first time I had been able to even attempt in almost 2 years. It was amazing and such an amazing 3 day break from disabled by excruciating pain.

Then everything flipped in mid-October and it flipped fast.

I had to go to the ER immediately after the infusion because I had extreme stomach pain, then I had a CRPS spread to my entire left arm and hand after a nurse tried to stick an IV in my wrist to look for reasons for said stomach pain. An emergency ketamine infusion in early December brought little relief and then (of course) I had another CRPS spread into my upper bicep where a PICC line had been placed for the infusion.

My treatment team agreed something was going on and it was found that my Lyme Disease was out of remission.

2017 has begun with restarting Lyme Disease treatment, finally being diagnosed with the genetic condition Ehlers Danlos Syndrome Hypermobility Type (my EDS is very very mild compared to others) and also beginning to treat my Chronic Inflammatory Response Syndrome.

The apartment that I lived in from 2009-2011 was incredibly moldy and my treatment team believes the extensive exposure to so many neurotoxins could have been partially why I developed my CRPS while I was living there.

My mold tests are the worst my dr has ever seen so treating the Chronic Inflammatory Response Syndrome and the Lyme is imperative right now as the two could be the culprit for why my CRPS began to spread again so aggressively.

I am struggling mightily and scared and sad but I am slowly trudging my way through these new detours.

We all struggle with hard times and  as each year blends into the next it seems that struggling with my health has become something I cannot escape but simply ride out.

So that’s my health story as things are right now on April 25, 2017.