It has been quite a while since I have written anything on this blog. Now that I can access the blog at work, I may write more from time to time! There are no little hands trying to take an electronic device from me. For all those joining from the Crush Fibro in TX page, welcome! Feel free to take a look at past posts to see what my life has been about. For those that don't know anything about Crush Fibro in TX, here is a link to the page to donate to Fibromyalgia Awareness and/or register to walk in support of it on May 14th.
The first part of this post is copied from the previous post. I am going to update my journey so it is all located here in the same place.
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Growing up in my teens I would have episodes where my hands would go numb. It was nothing unbearable, just odd. My doctor at the time told my Mom it was probably just beginning signs of carpal tunnel syndrome due to me playing the piano growing up. It happened sporadically and didn't bother me, so we never pursued a diagnosis for it.
After I met Justin (in our dating years) in my early 20s, I began having numbness more frequently. It always seemed to happen on days we had been out shopping or walking a lot all day. Toward the end of the day while we would be out, my hands and fingers would swell and go numb with a burning and itching sensation. I would sit down to rest and raise my hands above my head for a little while and the swelling would go down and I would get feeling back and be fine. I was going through nursing school and a new nurse at the time, so like all nurses I came up with my own diagnosis. :) I attributed it to circulatory issues from being on my feet all day and having my hands down at my sides. I never went to see a doctor about these symptoms. It would only happen a couple times a month and was always when I was active.
In the middle of September 2007, Justin and I had gone to dinner for his best friend's birthday. Afterward, we had gone shopping at Walmart (for something wedding related, I'm sure). My hands swelled, turned red, went numb, and had the burning/itching sensation to them. I told Justin I needed to sit down for a little bit. We ended up going home and all my symptoms kept continuing. Eventually the swelling and redness went away, but the numbness/burning/itching hung around. I had just started working for Garland ISD that August and my benefits did not start until October 1st. I ended up having to wait over 2 weeks for insurance to kick in before being able to call a doctor to set up an appointment. During this time, the numbness spread up my arms to my elbows. It got to a point where it came and went, not a consistent numbness, but was numb more than I had feeling.
When my benefits finally started in October 2007, I found a primary care doctor at Baylor Plano and saw her as quickly as I could get in. She referred me to a neurologist in her practice to have him do testing. The neurologist set up for me to have a nerve conduction study, or EMG (electromyogram) in his office. He was actually the one that performed the test. It consisted of two parts:
1. For the first part of the test, sticky pads were placed on different areas of my arm and connected by wires to a computer and machine. The doctor would then place a taser like contraption in different places on my arm and shock me. The computer measured the reaction of my nerves transmitting a signal. I don't remember it hurting. It seemed more like touching a doorknob when you've been around static and getting shocked.
2. The second part of the test consisted of the doctor placing needle electrodes in muscles in my arms to measure the electrical activity produced by my muscles. I don't remember this hurting either.
I remember that I had this test done, but I honestly don't remember much else about it. The doctor was able to talk to me as he performed the tests to give me the results. Everything looked normal, which was great news!! At that time he said he was unsure what was going on, but prescribed me Lyrica to take to help with the numbness and gave me a prescription for wrist braces to wear when I slept at night. The Lyrica made me loopy...just ask my sister about our difficulty while trying to address invitations to my wedding!!
I followed up with the neurologist in mid-November (2007). I let him know that Lyrica wasn't doing anything for me, other than making me weird. He became frustrated with me and suggested that I was making up all my symptoms. He told me I should make an appointment with a psychiatrist since it was "all in my head". You can imagine the emotions I went through as I left the office. I didn't think I was crazy, but I began seriously questioning it.
I put how I was feeling in the back of my mind for the next couple months. Justin and I were busy looking for a house to buy, planning our wedding, we had wedding showers, Thanksgiving, Christmas, my brother was coming home from the military for R&R. I didn't have time to be dealing with all of it. We had a great, and stressful, couple months and I just endured the frustrating symptoms I was experiencing.
The numbness eventually turned into a dull, deep ache that didn't go away so I started to become concerned again. My aunt suggested I go see her rheumatologist she had been seeing for a long time. I saw this doctor in February 2008. She went through my entire history, ordered more labs, did an extensive physical exam...and yet again, everything turned out normal. Can you imagine the frustration I felt at this moment?
From February 2008 to June 2008 I bounced around from one doctor to another, trying to find someone that I felt believed me and could help me. One doctor after another dismissed my complaints since all tests were normal.
In June 2008, Justin and I decided we needed to find a primary care doctor we could get established with in case we got sick. I found us a doctor and did the trial run to see if he would be a good doctor for us. He came in the room, asked me how I was doing, and I broke down in tears. He told me he would get to the bottom of whatever was causing my symptoms. That day he drew blood, ordered a MRI, referred me to a rheumatologist in the practice, and began treatment for depression (even though at the time I never would have admitted that was a problem). To keep it short, by the end of that summer the rheumatologist was treateing me for Fibromyalgia. I felt like it was a cop-out diagnosis (and still do at times), but I met all of the qualifiers to have it. The medicine she gave me helped a lot...didn't completely take the pain away, but it was manageable.
I took Cymbalta that the rhuematologist had prescribed for me and went to my frequent (useless) follow-ups as she deemed necessary. Around Summer 2009, I started having pain more frequently. The rheumatologist said she felt we needed to go against the FDA and Pharmaceutical Manufacturer recommendations for Cymbalta and increase my dose more than what was recommended at that time. I was leary about it and told her I would have to think it over. I contacted my insurance company to find out if they would even cover the medication if we were going against recommendations. They said no, but the way around it was to have my doctor write 2 different prescriptions with the different dosages and I would just have to pay 2 co-pays on it. The medicine was expensive enough with one co-pay. There was no way Justin and I could afford 2 co-pays on it!! So that alone made up my mind on what to do. I ended up stopping the Cymbalta and did a lot of research on alternative therapies for Fibromyalgia.
In August 2009 as I went back to work for the school year, I decided to try out a gluten free diet. I had read a research article online about the link between gluten sensitivity and it increasing the response of pain receptors. It was difficult, but I quickly noticed great results in digestive processes. I felt better all around, so I guess it worked to decrease the pain sensitivity I had. I ate a gluten free diet for over 2 years and had minimal problems! I missed a lot of good foods though...bread, pasta, cookies, cakes, etc.
Justin and I found out we were pregnant with Alyson in December of 2011. Toward the middle of my pregnancy, I began craving things that had gluten in them like crazy. I started out slowly eating some gluten containing items and I didn't have any trouble. By the time Alyson was born, I was eating a regular diet again and not having any pain!
Alyson was born in August 2012 and I continued to eat a regular diet with no problems. Around Alyson's 1st birthday, I began weaning her from nursing since I was going back to work. As I started weaning, I started to have pain flares again. :( I couldn't go back to the doctor that jumpstarted finding a good treatment for me. We didn't see eye to eye on some of the treatments he was prescribing while I was nursing Alyson, so we parted ways. Alyson's doctor recommended a new primary care physician, so I started seeing her in September 2013. She wanted to start testing completely over since it had been so long and since she wasn't sold on the Fibromyalgia diagnosis. All blood work she ordered came back normal, so she referred me to a neurologist. The neurologist felt I needed to have a nerve conduction study and EMG (again). I had this test done in October 2013. This time it was VERY painful when the needles were inserted in my muscles to measure the electrical activity in the muscles. I was sore for over a week! The neurologist that did the test said everything looked completely normal. I was VERY frustrated at those results and let down that it didn't show anything wrong with me. She said she could understand why I felt that way, but that I should also be thankful for normal results showing that I do not have a degenerative disease that will break my body down over the years to come. (Thanks, God, for the wake up call!) She also went on to explain to me how "stress manifests itself in different ways in our body" and that "maybe I should take a look at my life and see if I'm manifesting my stress as pain."
LIKE THIS IS SOMETHING I CAN CONTROL?!?!?!
I left that visit ANGRY at God. Why would he allow me to feel the way I do and keep continuing to cross my path with doctors that didn't believe me, or didn't care? I needed to do some MAJOR soul searching at that point. I prayed and prayed about my attitude and about the whole situation, not really believing God would give me answers.
The next day, I had left Alyson with Justin to go over to my parent's house to feed their dog since they were out of town. I had called in a dinner order for us and it was going to be a little bit before it would be ready. I pulled out one of my old music books I loved to play the piano from growing up and sat down and played the piano for the first time in YEARS!! Nothing special about playing that song, other than having those few moments to myself with no worry in the world doing something I grew up loving to do. It changed my attitude as I got back in the car to go grab dinner. I was listening to the radio as I drove and a woman was speaking about a book she had written about surviving cancer multiple times. She was so upbeat about her latest cancer diagnosis and the prospect of beating it yet again. One of the topics she talked about was how we must have faith that God will heal us. At that moment, I realized that over the previous 6 years I didn't once put faith in God to heal me. I took it into my own hands to bounce around from doctor to doctor having test after test performed to give me an answer. I was mad at God because He wasn't giving me an answer, when in reality he was. I should have been thanking Him for all of the normal tests results, thankful for being able to continue on doing the things I wanted in life despite the pain, thankful just for waking up each morning and being able to get out of bed. I felt ashamed at my behavior and stubbornness.
I followed up with the neurologist in mid-November (2007). I let him know that Lyrica wasn't doing anything for me, other than making me weird. He became frustrated with me and suggested that I was making up all my symptoms. He told me I should make an appointment with a psychiatrist since it was "all in my head". You can imagine the emotions I went through as I left the office. I didn't think I was crazy, but I began seriously questioning it.
I put how I was feeling in the back of my mind for the next couple months. Justin and I were busy looking for a house to buy, planning our wedding, we had wedding showers, Thanksgiving, Christmas, my brother was coming home from the military for R&R. I didn't have time to be dealing with all of it. We had a great, and stressful, couple months and I just endured the frustrating symptoms I was experiencing.
The numbness eventually turned into a dull, deep ache that didn't go away so I started to become concerned again. My aunt suggested I go see her rheumatologist she had been seeing for a long time. I saw this doctor in February 2008. She went through my entire history, ordered more labs, did an extensive physical exam...and yet again, everything turned out normal. Can you imagine the frustration I felt at this moment?
From February 2008 to June 2008 I bounced around from one doctor to another, trying to find someone that I felt believed me and could help me. One doctor after another dismissed my complaints since all tests were normal.
In June 2008, Justin and I decided we needed to find a primary care doctor we could get established with in case we got sick. I found us a doctor and did the trial run to see if he would be a good doctor for us. He came in the room, asked me how I was doing, and I broke down in tears. He told me he would get to the bottom of whatever was causing my symptoms. That day he drew blood, ordered a MRI, referred me to a rheumatologist in the practice, and began treatment for depression (even though at the time I never would have admitted that was a problem). To keep it short, by the end of that summer the rheumatologist was treateing me for Fibromyalgia. I felt like it was a cop-out diagnosis (and still do at times), but I met all of the qualifiers to have it. The medicine she gave me helped a lot...didn't completely take the pain away, but it was manageable.
I took Cymbalta that the rhuematologist had prescribed for me and went to my frequent (useless) follow-ups as she deemed necessary. Around Summer 2009, I started having pain more frequently. The rheumatologist said she felt we needed to go against the FDA and Pharmaceutical Manufacturer recommendations for Cymbalta and increase my dose more than what was recommended at that time. I was leary about it and told her I would have to think it over. I contacted my insurance company to find out if they would even cover the medication if we were going against recommendations. They said no, but the way around it was to have my doctor write 2 different prescriptions with the different dosages and I would just have to pay 2 co-pays on it. The medicine was expensive enough with one co-pay. There was no way Justin and I could afford 2 co-pays on it!! So that alone made up my mind on what to do. I ended up stopping the Cymbalta and did a lot of research on alternative therapies for Fibromyalgia.
In August 2009 as I went back to work for the school year, I decided to try out a gluten free diet. I had read a research article online about the link between gluten sensitivity and it increasing the response of pain receptors. It was difficult, but I quickly noticed great results in digestive processes. I felt better all around, so I guess it worked to decrease the pain sensitivity I had. I ate a gluten free diet for over 2 years and had minimal problems! I missed a lot of good foods though...bread, pasta, cookies, cakes, etc.
Justin and I found out we were pregnant with Alyson in December of 2011. Toward the middle of my pregnancy, I began craving things that had gluten in them like crazy. I started out slowly eating some gluten containing items and I didn't have any trouble. By the time Alyson was born, I was eating a regular diet again and not having any pain!
Alyson was born in August 2012 and I continued to eat a regular diet with no problems. Around Alyson's 1st birthday, I began weaning her from nursing since I was going back to work. As I started weaning, I started to have pain flares again. :( I couldn't go back to the doctor that jumpstarted finding a good treatment for me. We didn't see eye to eye on some of the treatments he was prescribing while I was nursing Alyson, so we parted ways. Alyson's doctor recommended a new primary care physician, so I started seeing her in September 2013. She wanted to start testing completely over since it had been so long and since she wasn't sold on the Fibromyalgia diagnosis. All blood work she ordered came back normal, so she referred me to a neurologist. The neurologist felt I needed to have a nerve conduction study and EMG (again). I had this test done in October 2013. This time it was VERY painful when the needles were inserted in my muscles to measure the electrical activity in the muscles. I was sore for over a week! The neurologist that did the test said everything looked completely normal. I was VERY frustrated at those results and let down that it didn't show anything wrong with me. She said she could understand why I felt that way, but that I should also be thankful for normal results showing that I do not have a degenerative disease that will break my body down over the years to come. (Thanks, God, for the wake up call!) She also went on to explain to me how "stress manifests itself in different ways in our body" and that "maybe I should take a look at my life and see if I'm manifesting my stress as pain."
LIKE THIS IS SOMETHING I CAN CONTROL?!?!?!
I left that visit ANGRY at God. Why would he allow me to feel the way I do and keep continuing to cross my path with doctors that didn't believe me, or didn't care? I needed to do some MAJOR soul searching at that point. I prayed and prayed about my attitude and about the whole situation, not really believing God would give me answers.
The next day, I had left Alyson with Justin to go over to my parent's house to feed their dog since they were out of town. I had called in a dinner order for us and it was going to be a little bit before it would be ready. I pulled out one of my old music books I loved to play the piano from growing up and sat down and played the piano for the first time in YEARS!! Nothing special about playing that song, other than having those few moments to myself with no worry in the world doing something I grew up loving to do. It changed my attitude as I got back in the car to go grab dinner. I was listening to the radio as I drove and a woman was speaking about a book she had written about surviving cancer multiple times. She was so upbeat about her latest cancer diagnosis and the prospect of beating it yet again. One of the topics she talked about was how we must have faith that God will heal us. At that moment, I realized that over the previous 6 years I didn't once put faith in God to heal me. I took it into my own hands to bounce around from doctor to doctor having test after test performed to give me an answer. I was mad at God because He wasn't giving me an answer, when in reality he was. I should have been thanking Him for all of the normal tests results, thankful for being able to continue on doing the things I wanted in life despite the pain, thankful just for waking up each morning and being able to get out of bed. I felt ashamed at my behavior and stubbornness.
In February of 2014 we found out we were pregnant with Connor! Well, we didn't know we were having a Connor until he was born...but we found out we were having another baby. Throughout this pregnancy I did not have problems with fibromyalgia for the most part. Toward the end of that pregnancy I began having problems with my blood pressure. I had to go to the hospital multiple times for observation and finally, my blood pressure just got higher than my doctor wanted it to be before a weekend so we went ahead and proceeded with the scheduled C-section early. I continued to have no fibro pain after Connor was born, however I began having a different kind of pain. After a couple months of enduring the pain, the doctor finally found that I had gallstones. I had a cholecystectomy over spring break in March 2015 when Connor was 4 1/2 months old. (That was rough!!!) Afterward I felt better, but had a long healing process with my chunk of a 4 month old wanting to nurse all the time. I survived though and was pain free through the end of the year!
At the beginning of this year (2016), I began having those old pains I knew all too well creep back in. I kept brushing it off to the back of my mind as it being weather related. As time has gone on over these 4 months though, I realize its more than just the weather. I am currently working with my doctor on a new medication regimen to try to alleviate enough of the day to day pain to continue to stay active in my children's lives. We tried Cymbalta again, but it didn't work like I had hoped. Currently I'm back to Lyrica, so we will see how that turns out. (Kat, if I start anything with B-E-V, BEV again I may need to reevaluate!) There may be a new rheumatology workup in my future - more to get medications regulated than to reevaluate the diagnosis - time will tell.
For now, I continue to accept how I feel. I do not need a different label than what I've been given. I have peace knowing God is leading me on His path. None of that has changed. Fibromyalgia does not define me...it's just a part of who I am. My prayer is to bring awareness to the "unseen, silent" condition of Fibromyalgia and other chronic illnesses. There are too many misconceptions in our world today that people base their opinions on unjustly. Just because you can't see it doesn't mean it's not there.
One of my favorite songs right now is Just Be Held by Casting Crowns. It speaks volumes to what goes on in my head. I think my thoughts are my own worst enemy sometimes. I am learning day by day to Just be HELD by my Creator...
There's freedom in surrender
Lay it down and let it go
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