I feel like I should introduce myself and tell my story before anything else. This includes both the stories of the CRPS and the Celiac, because they kind of overlap. I'd love to be able to help just one person by sharing my story. The purpose of me creating this blog is to be of help to others going through the same things. I've seen what how awesome and wonderfully supportive the celiac community is, and the RSD/CRPS community seems to be the same. I want to be of use as well, whether it's with support, ideas, etc.
In April of 2009, I fell on my left knee. I was running to answer the front door in a hurry because my father was sleeping upstairs and my little cousins were continuously ringing the doorbell. The floor was wet, though, because it had just been washed, so I slipped and down I went. I got up quickly, though, to open the door. I got a big bruise from the fall, and it hurt for awhile, but then the pain went away as it should. A few weeks later, though, I started having pain again. I didn't know why, but I let it go. I don't like to see a doctor until I'm sure whatever's wrong with me isn't going to go away on its own. When it kept getting worse instead of better, I finally went to my GP. She sent me for x-rays and referred me to an orthopedic surgeon (OS) who ordered an MRI as well. Both the x-ray and the MRI were normal. He decided to try NSAIDs and start me on physical therapy (PT). I spent 6 weeks doing physical therapy, which didn't make much of a difference, and trying many different NSAIDs, all to no avail. The OS then wanted to try a cortisone shot. I was wary, but consented. It didn't help at all, and the pain was actually much worse for a couple days. As the pain just gradually kept getting worse and nothing was helping, he finally decided to do arthroscopic surgery on the knee in October 2009. He removed the plica, and we hoped that this would help. Shortly after the surgery, my right knee started hurting. At first I thought it was just from overcompensation after the surgery, so I didn't say anything. But when it kept getting worse and was taking on symptoms of the left knee, I knew something wasn't right so I brought it up to my physical therapist. After keeping her updated on the pain of the right knee, she soon knew as well that it was more than just overcompensation. My left knee took a long time to recover from the surgery, much longer than a normal person. I was in PT for 9 weeks after it, and my PT helped me greatly in getting back to functioning level. But now I had 2 painful knees, always gradually worsening.
Now also starting after the surgery, I started getting nauseous every morning, as well as *other* bothersome stomach problems. I would have to force myself to eat breakfast, and gag all the way through it. But I ignored it the best I could, because I wanted to focus on my knee problems.
After trying other pain medications as well as lidocaine patches, my OS decided to refer me to a rehab physician. The first appointment with him seemed promising. He took the time to understand my pain, and knew I needed to get better. He first tried me on Lyrica, which I had a weird reaction to. My right leg swelled up really bad on the medicine, to the point were it was scary. He then put me on Cymbalta, which gave me such horrible headaches I couldn't function, so I had to stop taking it. After this, he said there was nothing more he could do for me and referred me to the Rehab Institute of Chicago. After talking to people at the RIC, I realized it wasn't for me, especially at the point I was at at the time. They just wanted to manage my pain, but I still hadn't been diagnosed yet and needed to know what was wrong with me first. I didn't want to give up fighting yet!
I went back to see my OS and suggested both the possibility of a nerve problem or maybe something autoimmune. He said both were definitely possibilities, and decided to go the route of testing my blood. The results were normal, but I still decided to see a rheumatologist to be more thorough, and also get another perspective. The rheumatologist couldn't find anything that was wrong with me either. She decided to send me to more PT. I went there for 4 weeks, and I actually did see a little improvement in the pain near the end. I would have loved to see if that improvement would have continued if my prescription for PT was extended, but sadly that was not the case, and when I was done there, my progress stopped again.
By this time, the stomach problems I was having got much worse, to the point where I could no longer ignore them. Almost every time I ate, I would have HORRIBLE stomach pain. I was miserable, scared to eat anything, and needed to get help. Before I went to the doctor, I googled some of my symptoms. I saw some mention of a person with similar symptoms feeling better after going off of gluten, so out of curiosity I looked up the symptoms of celiac disease. I was amazed that the list described everything I was going through! I started monitoring what I ate, and sure enough, if I ate something with no gluten in it, I didn't have the pain. I went to my GP and after telling her my symptoms, the first thing she said was "it sounds like celiac disease." I didn't even tell her that's what I thought it was. She referred me to a gastoenterologist. He agreed that that's what it sounded like, and ran the blood tests as well as ordered an endoscopy as well as a colonoscopy. Until those procedures are over, you need to stay eating gluten for the results to be accurate, but once they were done I went off of it. I immediately felt better. Not only were my stomach pain and all of my other symptoms gone, but I just felt better all over as well. So I knew that celiac disease was definitely what I had even before I finally got the official diagnosis in June.
During all of that, I actually switched things around and put my knees on the back-burner for awhile until I got my stomach problems taken care of. Then my summer was busy with volunteering and a trip to Europe. I was in a lot of pain from all of the walking in Europe, but I made it through, and it was an amazing trip despite the pain. Finally about a month and a half ago I went back to my OS to see if maybe some of the other medications would work now that I was off gluten? Celiac disease is actually an autoimmune disease, and autoimmune diseases cause inflammation. I was hoping that when I went off gluten the pain would at least lessen, but apparently the two weren't related at all. He had no ideas to help me and told me "sometimes the pain just never goes away and you have to live with it."
I was in so much pain some days that I couldn't stand it, and I knew something needed to be done. I turned back to my friend google, and after I search of "burning pain" I came across CRPS. I couldn't believe how it described me! I knew this was what was wrong with me, I was sure of it. The presence of an initial injury with continued pain that is much worse than it should be, the failure of other doctors to find something wrong and dismiss you, the burning pain, hypersensitivity to touch, swelling, changing colors, and more, all of it was me. I found a pain specialist who treats CRPS online and also had very good reviews, and made an appointment with her. I saw her today, and after discussing my pain with her and having her examine my spine and knees, she knew immediately and without a doubt that I have complex regional pain syndrome. Hallelujah!! It's amazing to finally have a diagnosis and a name to put to the pain. I spent so much time feeling awful, wondering what was wrong with me and why I just couldn't be normal, why the treatments weren't working and the doctors could find nothing wrong. It's very difficult mentally as well as physically to live with chronic pain, especially before a diagnosis. I now know that I am normal, for CRPS at least, because it accounts for all of my symptoms. Right away looking at my knees she noticed the swelling and mottling. And when she was pressing down the sides of my spine one spot did hurt. It turns out that spot is actually exactly where the injection goes in for the nerve block. It just felt amazing to have all of these symptoms that I've been experiencing so long and doctors told me there was no explanation for, after so much time being angry at myself, at my body, for having them, and now I have justification. Proof. Validation. And that is a feeling nothing can ever diminish. So while the diagnosis itself is depressing (it's a progressive disorder for which there is no cure) I am at least better off than where I was before the diagnosis. I can't wait to start the nerve blocks- if I can at least get some relief it'll be amazing!
My knees are on fire as I'm typing this. Living with chronic pain is horrible. I can barely stand it on nights like tonight. But I am a fighter, and I can't let this get the best of me. It may limit what I can physically do, but if I let it take over my mind as well, then it has really won. I look forward to sharing my experiences with you all, and I hope my story inspires someone :)