Nerve Block #3 and other things

On Thursday I had my third nerve block plus more ketamine along with it. I woke up that morning with a migraine, so of course I was nauseous going in and I couldn't take anything for it. My mom, because you need a driver, told them about my migraine, so the anesthesiologist gave me something for it through the IV, I don't know what it was. After this block I had a really crazy dream that was just lots of bright and vivid colors that kept rushing by quickly, and it seemed to go on for a really long time. I guess you could say it was some kind of tripped out dream? I woke up on my stomach, as always with the blocks, and usually it takes awhile to become aware of each body part and work them all together as you wake up (it's weird and hard to explain unless you've been through it, but if you have you know what I mean) but this time I was so dizzy ever since I started waking up. Everything in the room kept moving, and I would see things that weren't there. After the required time to be on my stomach, the nurse came over and told me I could flip over. I did, and right after that she had me getting dressed.

Now I still felt really dizzy, but I'm not the kind of person who will say "wait, I don't feel good", but rather just push through and wait til it goes away on its own. So I got dressed, and I barely finished and I just froze, because I felt so sick. My vision went from double to blurry. The nurse came and saw me and asked if I was nauseous, and I said yes, so she brought me a bowl just in time. But then she took my IVs out and wheeled me out to my car, where my mom was waiting. I was still dizzy at that point, and I couldn't even look at anyone directly. Luckily she gave me a clean bowl to take with me. In the car I recovered from the dizziness but I was just really nauseous. I got sick once on the ride home, and then continued to for the rest of the day. I was a mess, I sat on the couch and for awhile kept drifting in and out of sleep. Any time I tried to eat something I didn't keep it down for long. I would try to do schoolwork on my laptop, but I would have to keep stopping because I felt so nauseous.

I'm really not sure what my reaction was from, but it was awful. I don't see my doctor until the 21st so I won't know anything new until then.

I filed with my school's Office for Disability Services finally. I don't think they'll be able to do much for me, unfortunately, but at least having my professors know now and for the semesters to come about my disease might help me out.

My sensitivity in my knees has gotten worse, and I just can't stand it at all anymore. I wear braces on them whenever I leave the house or am going to be on my feet a lot, but I recently bought sleeves that I can slip on my knees the rest of the time, so I don't always have to wear the braces, because they get to be painful after awhile. These sleeves are great for when I'm at home, because they protect my knees from my pants really well. The freezing cold weather is also not doing good things for my hands, I'm afraid. I get random burning pain sometimes in my hands and arms, as well as my thighs, but only sometimes right now. Also sometimes my hands will become very hot or painful to touch.

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Finally, I've been thinking a lot lately about not spending time worrying about things that you can't change; that you have no control over. I've been worried about my grades, for example, because I've had to miss several classes due to RSD, but in the end I realized that there's nothing I could have changed, so it is what it is. I think that's a good approach for anyone to go at life with. If nothing can be done about something, don't waste your time worrying about it, that's what it is. BUT if there's something that you can do something about, then by all means put your energy into helping yourself in those cases :)

My First Thanksgiving Gluten Free

I have to admit, not long after I was diagnosed with celiac disease and processed the initial things, I worried about Thanksgiving and how I wouldn't be able to eat much at all. I worried further when my aunt said she was going to host this year. If we weren't having it in our kitchen, we couldn't control how things are cooked. And I couldn't very well ask her to cook things gluten-free just for me. (Well, I could, but I'm the type of person who would never ask anyone to make special accommodations just for me when there are so many other people involved who don't need it.)

But I am very pleased to say I had 2 platefuls of great food!

I did ask my aunt and uncle beforehand how the turkey would be cooked, just so I would know ahead of time if I would be able to eat it or not and what food I should bring for myself. They decided to cook two small turkeys, making one smoked and one deep fried, which was in a clean fryer with clean oil and completely safe. So that was great! I was able to have some of each turkey. Mashed potatoes were ok, of course, but without gravy, and we had a really delicious cranberry relish with oranges and apples and nuts and chocolate, all chopped. And then I brought my own croissant rolls from a GF store, which were actually quite good. Add some salad, and I had a full plate. I was so pleased, and the only thing that was specifically GF was my bread.

My mom volunteered to do dessert, so she could make them so I could have them. She got all GF pie crusts, and made 2 different kinds of pumpkin pie that I could have, plus an apple pie.

I was so happy that celiac disease didn't ruin my Thanksgiving. I will never let this disease control my life.

RSD Awareness Month

Imagine:

+ the light touch of your pants making your legs hurt so badly that you can't stand it

+ pain that burns so badly it literally feels like you are on fire

+ swelling so that your knees look like lumps all the time, and you can't remember what they used to look like

+ out of nowhere have a part of your body become extremely hot for awhile, and having this happen at least 30 times per day

+ having that same body part get freezing cold in between

+ having your skin always look mottled and marbled

+ having your knees become like jelly underneath you after you've done only a moderate amount of walking

These are just some of the many things people with CRPS/RSD have to go through every day.

RSD stands for Reflex Sympathetic Dystrophy, the name for this incredibly painful, chronic, progressive neurological disease. More recently, doctors started calling it CRPS, Complex Regional Pain Syndrome, which encompasses both RSD (Type I) and Causalgia (Type II) which involves a direct injury to the nerve. It affects the sympathetic nervous system, which regulates things like heart rate and breathing, and sends a constant loop of pain from the brain to the effected body part(s). No one knows why RSD chooses to affect certain people, but it is rare. One of the defining characteristics is pain that is disproportionate to the initial injury. Personally, I know I never would have thought that a simple fall one day would cause me to be in terrible, ever-worsening pain over one year and seven months later. I also never would have imagined that having surgery on that knee 6 months after the injury would actually cause the pain to spread to my other knee.

The disease is baffling, really. The symptoms seem to make no sense. Often times people with RSD are not believed by family, friends, and doctors. They can be accused of making their pain up or exaggerating the extent of it. I did go through times where people, and even one doctor didn't believe me. Other doctors dismissed me, either quickly or eventually, because they had no idea what was wrong with me anymore and said there was "nothing more they could do for me." Many times I wanted to give up, to not face another disappointing doctor's visit. But I persevered because I knew something was obviously wrong with me, and I deserved a diagnosis. Finally, I found a doctor who knew what I had, and had an answer to explain all of my "odd" symptoms.

This is why RSD awareness is very important to me. I don't want others to have to go through what I went through. If my previous doctors had at least been familiar with the symptoms, they could have been able to detect it so much sooner. I want more awareness for doctors badly, but I also want awareness spread of this disease for everyone. It is very difficult to understand what a person with RSD goes through every day (I know I wouldn't have before I had it myself) but with at least more familiarity, the name won't be so foreign to people. If you come across someone with the disease, you can understand what it's about. And with more awareness comes more research and knowledge about what exactly causes RSD, what better treatments might exist, and if a cure is possible.

Birthday meals and lessons learned

Saturday was my birthday, so for my meal I chose a Brazilian steakhouse. It was great to be able to eat most of the same things as everyone else and not have to choose from a limited section of the menu. They even brought me flan for my birthday and they checked to make sure it was gluten-free- it was! So that was a really great meal. My mom also made me a homemade cake that I could eat.

Yesterday I went to the city to see a show. We ate and had a short amount of time after to get to the theater. We decided that it would be faster to walk the 10 or so blocks than go get the car, drive there, drive around looking for a parking deck, and walk out and into the theater. We had to walk quickly, and I pushed myself more than I knew I should, without a doubt, walking quickly. By the time we got there I almost fell a couple times because my knees were collapsing under me.

But the seats were fantastic and I didn't have anyone in front of me, so I was at least able to stretch out my legs during the show, which helped while I was in lots of pain. When it was time to leave, I was convinced to just try to walk instead of having to spend money on a cab, and that we could take it slow. That walk back was the longest walk of my life, and I was to the point of tears several times. My knees hurt so bad and were so hot, and they were like jelly underneath me. Thankfully I wear braces on both of them, which helped give me a little extra support, and I walked bending my knees as little as possible, as I always do when they start to give out on me. This was much past that point, though. I was just so bad off and in so much pain.

Today has been excruciating, because I'm always hit extremely hard the next day as well. And it didn't help that it stormed all during today, because we all know what that means: extra inflammation. Right now as I'm typing this tonight, my knees and legs are of course on fire and almost unbearably painful.

It's extremely frustrating to have things like this happen. At the same time, I'm trying to focus on the positive that at least the show was amazing. I'll try to not push myself well past the point I know I can anymore. The consequences are unbearable.

I do now know with certainty that the nerve block has completely worn off- no doubt about it.

Nerve Block #2 (Plus Ketamine)

Yesterday was my second nerve block. I was laying in the bed waiting for my turn, and my doctor came out to talk to me. She said she decided she wanted to try using Ketamine too, along with the block, in hoping that it would help break the pain cycle more. I agreed, and then the anesthesiologist came out and talked to me more about it. They also gave me an Ativan tablet to try to prevent any bad side effects from the Ketamine, and I didn't have any scary dreams or anything last night, so I think it worked.

The pain relief was about the same as last time, lasting a little longer, though. I still had overall soreness in the joints pretty quickly after, but I've never known if that pain is part of the RSD or not. Early evening I started getting the hypersensitivity to touch back, I noticed when my pants starting hurting again, and then later in the evening the burning was back.

Well, it was nice to have some relief, of course, again. I did have hopes that this one would last longer than it did, though, especially since the Ketamine was used too, and my doctor and the anesthesiologist both seemed confident that it would do good things. But I guess the fact that it lasted longer than the first one is still progress? I don't know. The office called me today and they said they wanted to schedule another block in 2 weeks, so I did. Right now I'm not meeting with my doctor in the meantime, but I am curious to know what she thinks about the length of the effects of this one.

I didn't faint after this block, which was good! I was very careful and ate my food very slowly, so as not to take any chances. The procedure went smoothly again, I just have had a sore back yesterday and today, but that's expected. I felt so out of it for many hours after the procedure, though, and I seriously couldn't walk right and kept thinking I would fall over. But I didn't! lol Maybe that was due to the Ketamine? I honestly don't know, this was my first experience with it.

Updates

I'm sorry I haven't posted in awhile, I've just been busy. Here are some updates.

All is the same, basically, on the celiac front. I went to a restaurant called BD's last week that I have visited before many times and love, and I am so glad I can continue eating there now. I highly recommend it to anyone, including celiacs, because it's a delicious Mongolian Barbecue meal, and they have an allergy zone so you don't have to be worried about cross contamination! They have rice noodles, and list which sauces are GF. It's so great :D

For my birthday meal on Saturday, I chose a local Brazilian steakhouse. I've never been to this particular one before, but it has good reviews online. And I contacted them to make sure the seasonings on the meat are GF, which they are. So it'll be a nice meal that I can eat, and I love going to Brazilian steakhouses because I went to Brazil in 2004 and that was the kind of meals I ate there, so it reminds me very much of being in Brazil.

So far the plans for Thanksgiving are going good. We're celebrating at my aunt's house, and the way she's cooking the turkey is fine for me. I'm also bringing pumpkin pie which we're making homemade and GF, and we're picking up GF rolls for me too. So there should be enough I can have for a meal :)

I saw my pain management doctor last week, and she thinks it's good that the first nerve block worked for 5 hours, so I'm having another one tomorrow morning, and hopefully this one will last longer. She also doubled my dose of gabapentin (from 300 mg 2x a day to 400 mg 3x a day) and I haven't had any problems with side effects from that, which is good. The increased dose might actually even be helping my pain a little bit! It's hard to tell right now if it's the meds working or I'm just on a stretch of good days. I guess time will tell.

I'm going to start looking into meeting with my university's disability office. I keep missing or being late to my first class since I can only park in the closest lot due to the pain, and that lot is so packed that you have to keep circling around waiting for people to leave, and hoping you're in the right place at the right time to get a spot.

I really need to wear gloves any time I go out now that the weather's colder, I think. My hands are super sensitive to the cold. I had mild frostbite in my fingers and toes a couple years ago, and I think that could increase my risk of the RSD spreading to them?? I don't know, I'm definitely no expert. But I want to take as many precautions as I can.

Oh and I told my doctor about my left foot that keeps getting hot, many times a day. She took note of it, and said it's a symptom. I'm keeping my fingers crossed that this doesn't mean spreading to my foot.

Nerve Block #1

I had my first nerve block this morning. The procedure wasn't bad at all and was over very quickly! I was feeling ok after it too so I went out to breakfast with my mom who had to drive me because of the anesthesia. Well I ended up passing out and then getting sick in the restaurant bathroom :/ So embarrassing! I guess it was a bad reaction? I'm ok now though.

My back is only a dot sore, which is good, especially since I had 2 injections, one on each side. The pain is already back, though. It was gone for about 4 hours, which was great. But it's ok, I had prepared myself reading about the procedure ahead of time, and knew it probably would only last a couple hours on the first one. It was nice to extinguish the fire for at least a few hours. I'll talk with my doctor in 2 days on what to do next, probably another block and possibly more physical therapy.

Happy Halloween

Happy Halloween to everyone! It was fun as always to get to see all the kids in their costumes as they came to the door :)

We have a new Super Walmart in town, and my mom needed to get groceries, so I said I'd go with because I wanted to see the new store. I knew full well that I would suffer the consequences later. But the second half of the time in the store, I could already barely walk. I look kind of funny when I get to that point, because I basically waddle/shuffle really slowly. It's not so fun for me though :/ That was a use of a lot of spoons I guess you could say, right?

My left foot keeps getting really hot. I'm not exactly sure what this means, but I'll try to remember to ask the doctor at the nerve block on Tuesday.

Looking forward to getting some relief on Tuesday!

Amitriptyline

I think I sleep better the nights I don't take Amitriptyline. Weird? I'm almost sure of it, though. I didn't take it last night because I remembered too late and the doctor said not to take it much past 8pm because I'll be groggy the next day. And I slept better last night than I have in a week, the last time I didn't take it (because my little cousins were sleeping over). If it's not really doing anything do I need to be taking it?

My nerve block is fast approaching. I'm not really nervous about it though. I mean, I'm a little freaked out about having a giant needle injected into my spine, but I'm not nervous. I think that's a good sign :)

It sucks that whenever I push my knees more than the bare minimum (for example extra walking) I have to pay the price and then a whole lot more. I've often had the internal struggle that I assume so many with every type of chronic pain have. The struggle that, do I do what I want to and attempt to have a more normal life and not let this thing beat me? Or do I give up on fun things and stay resting in order to not experience any extra pain? It does suck that I can make a decision one day to go to the mall, go through having pain and needing to take breaks, but still make it through, only to have terrible pain that night and the next several days. Everything's give and take. No one knows how many little decisions you have to make each day with big impacts. Do I take the stairs up to class or do I go out of my way to take the elevator?

I would say, though, that there's never one right or wrong decision. You can't let the disease take all the fun out of your life, but you can't live with that much of an extreme amount of pain either. Ah the ambiguity of it all... :/

I'm feeling much better today and was able to get some working out in, which just makes me feel better overall. I don't know if one day the RSD will spread to my arms or hands, I mean it already spread from my left knee to my right one, so I realize the importance not taking anything for granted. Now I can do things like boxing which is still a cardiac workout that is ok on my knees, but maybe one day I won't be able to. Or maybe I always will be able to too (looking at the bright side :) ). Either way, I know the importance of living each day doing what I can, so I won't regret not doing it if I can't later. Does that make sense?

As my knees have continued to get worse over the last year and a half, I have noticed all the things that I took for granted before that I now can't do. Like kneel down at all. Or be able to go the mall without horrible pain for the next few days after. Or be able to wear whatever shoes I want. I could go on and on, but you get the idea.

Sometimes I do feel bad for myself when I'm bound to the couch, missing the freedom I used to have that was taken from me. In this way it's very similar to celiac disease as well. And I'll admit that sometimes I do feel bad for myself with that too, wishing I could eat birthday cake with everyone else or be able to order whatever I want from a menu. But I can't let these feelings stay too long. And neither can you. If you dwell on the past, you miss out on the present. And that just leads to more lamenting of the past gone by, with regrets this time. It's a horrible cycle that no one should live in. I'm not saying it's easy to focus on the positives when there are things you love that you miss out on now. It's something that takes focus and determination. But if you want to be happy, it's possible for you.

Simple Explanation of RSD Website

I had to share this because I thought it was really cute, and actually quite helpful in explaining RSD/CRPS not only to children but also to anyone who is having trouble understanding it. Have a good day!

http://www.angelfire.com/me2/rsdpainpals/ExplainingRSD.html

Sick

Well I spent the long weekend with my 3 little cousins that I love very very much. Two of them are sick, though, and I seem to have gotten it from them. I guess that's what happens when you let a hacking child cuddle with you ;) My fever is climbing, and I feel like crap all over. I actually was nodding off all through class today and I never do that. And I'm supposed to do my babysitting job tomorrow. Uh oh.

I have seen some discussion saying that having celiac disease weakens your immune system overall. I have always had a very weak immune system, catching things from others easily and then taking twice as long to recover as everyone else. Just out of curiosity, I wonder if this is true?

The Gabapentin actually seems to be helping a little bit! And before I got sick, the medicine was also helping me sleep through the night, which was wonderful. Although my limbs, always around late morning and starting after I increased the Gabapentin, feel all weird like their going to collapse and that they're propelling me forward when I walk. It's no really big deal, just weird. But I'm thinking it's probably a common side effect? At least it's not causing my leg to balloon up like the Lyrica did so I'll take it!

This entry isn't great and I apologize, but I can't think straight with the fever. I kept missing the streets to turn on when driving. *whoops*

The Food I Eat

I needed a couple more credit hours this semester so I decided to enroll in an online nutrition class. Today I finished a 6 page paper that was a nutritional analysis of what I eat. In doing so, I realized how dramatically my eating habits changed since going off of gluten in April. Before, I was like the rest of America, eating a lot of processed foods. I would eat meals on the run, and therefore had a lot of items on hand that I could just throw into the microwave and it would be ready. Yet now I can't eat most processed foods, because most contain gluten. I've been forced to make my meals from scratch. It was an adjustment at first, because it takes a lot more time, but I consider the almost necessity to eat healthier a blessing of celiac disease. It is really good to know every ingredient that goes into my food and have it all be fresh rather than eating a mess of processed ingredients, however tasty they might be. I also find myself feeling more satisfied and snacking a lot less.

Because of this change, when recording what I eat, I noticed that I am consistently under the recommended calorie intake, and usually come in at about 1500. Because of this, I am also lower than the guidelines of every category on the MyPyramid. Yet I feel so much better about the food that I put into myself than I ever have. Some of the things I used to eat don't even look good anymore. (Some of them, I'm still eying the Totino's pizza rolls in the freezer and those do look pretty good...). But really, I realized writing that paper that I'm very happy with my eating habits and what I put into my body, and I am proud to be able to say that.

Fire

I don't think anyone could properly understand someone with CRPS who says their [insert affected body part] feels like it's on fire without actually feeling it for themselves. I'll admit I probably would have found it hard to understand before I had it myself. So how then do we properly describe to people what we're feeling? This is something I'm struggling with.

Additionally, I spend a lot of time with kids between volunteering, my job as a regular babysitter, and spending lots of time with my younger cousins. I wear braces on both knees so the downside is that it's obvious something's wrong. Kids seem to notice the braces more than anything (maybe because of their height?) and are always asking me what's wrong, how I'm doing, and why I'm not getting better. The little sweethearts are asking with the best intentions in mind and I appreciate it so much but my vague answers just aren't cutting it for them lol. I don't always know what to say to them either.


On another note, staying active and working out is very difficult with CRPS because it can cause lots more pain if you're not careful. Since my knee pain started I have found Wii Fit to be a good option. There's lots I can't do on there because I can't kneel at all, and some activities really bother my knees, but there's also lots I can do, and I focus on that. My favorite thing is definitely the boxing. It's really a good workout and helps me get some of my aggression out as well ;) Just thought I'd share the option. I still do all of my PT exercises as well because those are important, but getting a good workout just makes you feel better about yourself with this disease doesn't it? It makes you feel more normal.

Doctors Appointments

Monday I followed up with my gastro after being diagnosed with celiac disease in June. I get the impression that they actually don't treat a lot of celiacs there, because every time everyone is always so surprised that I'm feeling completely better and so happy for me. It's kind of funny, but I don't mind. As long as I got the right diagnosis and I'm feeling better, that's all that matters. And maybe because of me they'll learn more about the disease now, which would be able to help other patients. I hope so! Celiac disease can be really hard to get an accurate diagnosis for, much like CRPS, so many people can go years and years with the wrong diagnosis and not feel better. The awareness of celiac disease needs to be spread! There are so many medically-related issues I had throughout my life that I just kind of learned to live with and accepted as who I was that I then discovered were attributed to the disease. Kind of amazing how it interferes with so many aspects of your life without you realizing it.

So yesterday then, I had the appointment with the pain specialist. I found her online, and she seems like a very kind person. I am still in awe of how quickly she diagnosed me! I mean, if after just hearing about my pain, looking at my knees, and feeling my spine she could know with certainty that I have CRPS, then why couldn't any of the other specialists? I guess that's the thing, that some doctors get so stuck in what they're used to treating that they fail to see other options. But anyway I am so grateful to have a diagnosis. To have a name to  put to what I'm feeling. It is extremely frustrating to have people always asking me "What's wrong with your knees?" and having to tell them, "honestly, I don't know." I hate having to give that depressing answer and I don't have to anymore! (I have to wear braces on both knees every day because I wouldn't be able to get through the day without them because of the pain, so that's how people see something to ask the question.) To be honest I didn't know what mottling was either before she mentioned it. I had noticed the splotchiness of my skin, but I never thought much of it. And all of the "odd" symptoms (like burning pain, swelling, sensitivity to touch, etc.) that the other doctors couldn't explain? It all made perfect sense to her because it all fits in perfectly with this disease. I just feel very blessed to know what's wrong with me, have a doctor who won't dismiss me because she can't help me anymore, and have new options for treatments.

I have my first nerve block on November 2nd. I'm not too worried, because it seems like a simple enough procedure. After having 3 surgeries and 2 other procedures done, the whole thought of anesthesia and stuff doesn't really freak me too much either. Although I much prefer general to twilight (I'd rather be completely asleep than remember bits and pieces and get frustrated because I can't piece them together correctly in my head), it is what it is and the actual injection only lasts 5-10 minutes so it would be kind of silly to be under general for just that short amount of time. The doctor seems hopeful that several of these blocks could put it into remission. That would be fantastic, but I know not to get my hopes up too high. I will grateful for any kind of relief, because it'll be better than nothing, which is how I've been living. She also put me on Gabapentin (Neurontin) in order to calm down my nerves before the blocks and also Amitriptyline to help me get sleep at night.

My Story

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 :)