So this is going to be long but it will give you some insight to all the shenanigans I had to go through just to get an answer to what was wrong with me. My goal is to help more people understand what people diagnosed with fibromyalgia go through and give inspiration to those to who feel lost. When I meet someone with fibromyalgia it is like meeting someone from Iowa outside of the Midwest states, we get excited because those who truly understand what we are going through it themselves. It’s a mini form of winning the lottery! So let’s get started.
Everyone knows how it feels when your foot falls asleep, right? Some of my first symptoms felt like that and I never thought anything of it because I thought it was the “fall asleep’ feeling. Who would anything was wrong medicaly in their 20’s? What changed everything was waking up in the middle of the night with a muscle spasm so tight in the middle of my back I could not breathe. Of course I can’t remember now after all these years but it could have easily been related to a hangover or a night of adult beverages. Just kidding. I grew up in Iowa. Partying is a prerequisite for graduating high school. No really, ask anyone from Iowa! This went off and on for about a month before I made an appointment to see my doctor. Keep in mind I was active duty at this time and getting an appointment for a non-urgent issue would be about two to three weeks out. During the wait I started getting a tingling feeling all the way down my left arm into my fingers. Was thinking it just had something to do with the pain in the middle of my back. It would come and go and would go away if I moved it around like you would do to wake up a body part when it falls asleep. I perfected doing windmills with my arms and should have become a professional!
Then the day of my appointment arrived. I dreaded every step I was taking getting down the stairs to check in. To my surprise this day I bumped into one of the girls from my basic flight (whoop whoop 321stTRS). Anyway we went through all the normal check in stuff like height, weight, blah blah blah. In walks a “butter bar.” For those non-military folk this is a new officer, most generally a physician assistant. He did the normal range of motion and such. Said he was ordering x-rays and physical therapy. Now to bring up the part I was dreading. I needed to request a stress test. My mother had recently had her third heart attack and when I was with her at Mayo in Rochester, MN the doctors who came in one day to check on her looked directly at me and said “you need to get a stress test done as soon as possible to make sure you are not at risk.” Now when a doctor from Mayo tells you to do something, you bet your ass you better get it done yesterday. I was not dreading asking my doctor this because I feared I was having a heart attack but when I asked I got the look it was the first thing that came to his mind. I begin to roll my eyes in my head because I knew that’s what was going to happen and he wasn’t listening to me. Proof of that came when I showed up to radiology with no orders for the x-rays. Physical therapy never called me either. This mother trucker follows up with asking me what my physical fitness test results were. I informed him my most recent one was in the 90 percent and above (don’t remember the exact number) and his response to me was “well you’re a young healthy female, this should just go away.” Those words still haunt me today and make my blood boil.
In 2005 I attended my yearly girly appointment. Started off going through the normal questions and the tech started to freak out when I answered how many years I had been on Depo-Provera, the shot birth control. Wasn’t sure what the big deal was until she informed me a study had recently been published finding patients on depo for over seven years had an increased chance of osteoporosis. It had something to do with taking the vitamin D out of the calcium in the bones or something like that. However you medically described it my bones were possibly being affected. They ordered a bone density test for me and the results showed I had the beginning stages of osteoporosis, diagnosed name is osteopenia. They also ordered some blood work, which showed a decrease in my vitamin D level. Just took me off the shot and said not to go back on it. My vitamin D levels never got better just kept getting lower throughout the years and the doctors eventually stopped checking it. Little did I know this may not have been because of the shot but just brought to my attention because of the shot.
I continued to deal with these issues the best I could think of. Like my grandma Huber always said “suck it up buttercup!” Miss that incredible woman so much. In 2006 I PCS’ed (permanent change of station) to Langley AFB, VA. It did not start out so well as they shipped everything I owned to Langley, Virginia and not Langley AFB, VA. Of course I moved during busy season and it was going to take them six weeks to get it corrected and delivered to me. Off I go to buy me a pretty little air mattress. The big fluffy big ones had not been created yet so I was left with an air mattress a little thicker than a pool lounger. I would be floating on my floor for the next six weeks oh what fun! Every morning sucked waking up of course and who in the living world ever gets off this type of air mattress and feels like they had the greatest night of sleep? I don’t remember exactly how long I was sleeping on this shitty ass air mattress when one morning I couldn’t get off of this thing. Couldn’t roll out of it, couldn’t push myself up, couldn’t move. The pain in the middle of my back had come back again but with the force of Darth Vader this time. The only thing good about this situation was it was the weekend and I didn’t have to be at work. Time to make another doctor appointment.
This doctor appointment went much better than the disaster of dealing with the “butter bar” at Wright Patt. I do not remember anything about the appointment except they did refer me to physical therapy and I was actually contacted to get an evaluation. This angel, Major Asenuga, walked in the room and asked what I’m there for. I explain to her and two seconds later she’s pushing down on the head and my arm went numb. Thank you Lord baby Jesus someone took the time to figure out what was wrong with me. Pinched nerve in my neck. My treatment was neck traction, which almost looked like a mid-evil contraption but relieved my arm issues. Life was back to normal. For now.
In the fall of 2006, my dear friend who sadly passed away in 2019, Gonzo invited me to the All Military Wilderness Challenge. I’ll let you Google that one. So I began running longer distances. Surprisingly for how crowded the Hampton Roads Peninsula is there were a lot of running trails. I felt like a rock star getting ready for this thing. I couldn’t be a soup sandwich because each team required a female and I was the one. It was the perfect fall day and I was feeling good so wanted to go a little further than normal. Dumb idea. Not two to three paces past what I normally ran my left leg went numb. Not just numb like it fell asleep but numb like Gumby or when Harry Potter gets a flimsy arm when Gilderoy Lockhart tries to fix it for you younger folk. It took me forever to get out of the woods because I had to physically move my leg to walk out. It was the scariest thing I had ever happen to me. Off to another freaking doctor appointment. How was I going to explain this one to the doctor? Oh I was just running you know to be healthy and stuff. How was I going to break the news to Gonzo I may not be able to participate in the Wilderness Challenge? Thankfully I never ended up having to tell Gonzo because two of the other people for our team dropped out and he couldn’t find any replacements. Now I was off to Major Asenuga for physical therapy again but for a different body part. Little did I know this was another ailment of what was to come.
Just like anyone in any branch of the military I was given a free vacation to Afghanistan in the fall of 2007. By this time my leg, arm, and back had become a consistent problem but I was only 26 and why in the world would something terribly be wrong with me medically? I could still run, walk, chug a beer, and even smoke a cigarette. I felt like a perfectly normal military member, mainly because we all bond while drinking and in the smoke pit. Part of preparing for my vacation included extra training. Yes for all my military friends reading this even “nonners” had to get trained to deploy. Yes we even had to wear full battle rattle. During all this training my back became more of an issue as there were many times I couldn’t even breathe right while wearing my flak vest. My back was cursing at me so bad but I just sucked it up because I wanted to deploy. When I arrived in Afghanistan I was in processing the hospital and touring all the areas when we walked into the physical therapy area and there was my angel Major Asenuga. She asked how I was doing and I told her about being short of breath from my back. After we were done for the day she snuck me in and gave me an adjustment that felt like I was a new woman! I could breath, I could stand up straight, I could finally sleep!
Time went on and so did all of the wonderfulness I dealt with on a weekly basis now. There was one time when I worked a night shift I was so tired I went home at 6 a.m and woke up the next day at 10 p.m. Who the hell sleeps for that long? I mean I got up to use the restroom and snack but it was back to sleep within seconds. Guess what?? Still felt tired. Some night shifts I would barely sit down for the 12+ hour shift because within 5-10 minutes my left leg would be numb. It may have been okay if I wasn’t the only one working the whole lab to include blood bank for a shift. There were even days I was in so much pain I was throwing up. A supervisor asked me that morning if I really needed to go home or take a pregnancy test. This bitch, ugh I wish I could have thrown up in her face for such a comment. Things only got worse with that woman and I was blessed with being approved to cross train into the Office of Special Investigations and was outta there! Throughout my career I would take one last picture on my way out but not this place. The smoke was so thick from my tires it was days before anyone saw the sun again.
There I was standing at the visitors center the Federal Law Enforcement Training Center in Brunswick, GA waiting to get my pass to start my new Air Force career. I was stupid excited and couldn’t wait to get the party started. I was constantly tired and never went a day without some kind of pain. I mean all totally normal stuff for people who are getting the shit beat out of them and study material shoved down our throat, right? My fatigue would get so bad I could barely walk from class to class because we were not allowed to drive during the day. Sometimes classes would be in the same building and still tough. My cognitive thinking started being affected too. Instruction would be given on something and I could not for the life of me comprehend what they meant. Simple things too. Nobody was harmed except my ego. I even failed a test and it felt like my world was over. I fired back and received a 100 on the next test. All others following were still good but not 100. Which reminds me of the end portion of training. We were placed in groups and we were told about some trophy to whichever team gets the highest average. I turned straight to my mimicked detachment commander and superintendent and let them know I do NOT do well on computer tests. Proved it to them by knowing the material verbally but when the computer screen was turned on my eyeballs did not connect to my brain. Turns out light sensitivity can affect you in more ways than just the sun. Further more I was confident enough in myself, I let them do and think what they wanted. I knew my capabilities and it showed when I got Airman of the Quarter for the region the first quarter following our graduation from FLETC. Boom!
Off to Hill AFB, UT I a go! Yes, Utah. The second I got my orders I kept saying Utah over and over like why Utah. Even had a classmate offer to switch bases with me and I declined because I just felt there was a reason I was supposed to go to Utah. This was by far my favorite assignment. I met my husband and children here, had incredible co-workers, plenty to do as a family, and I truly enjoyed my job. Not exactly what I thought it was going to be but loved it. Although this is also where my health started taking a nosedive. My back and arm had gotten really bad to the point I had to go to physical therapy again. I was scared to go to the doctor now because the littlest of thing could prevent you from arming and if you can’t arm you don’t get to do much but desk work. BORING! It all began on a whimsical morning…..really it was a morning. My back had started to take my breath away again. Off to the doctor I go skipping through the halls of the hospital. I wave at the person running the information desk , blow a kiss to the Vietnam Vet waiting on a prescription, and wink at a little kid screaming at the top of their lungs. Oh yeah back to reality. Another round of x-rays and physical therapy. You know because this had never been done before and still nothing is being found to be wrong on the x-rays. This time the doctor ordered an MRI and guess what???? Still did not show anything wrong. So off to physical therapy again. This time though I did get a little relief due to them showing me some different technics than before. At my follow up from those appointments I was referred to have an EMG (electromyography) to check to see if I had any nerve damage since nothing else was currently helping or showing something was wrong. I’d rather get my blood drawn 100 times by a good phlebotomist than have this damn test. More mid-evil shit, they would stick a needle about the size of an acupuncture needle all over your arm then send a shock. Topping it off with making you flex with the needles in. I don’t know what was worse, the pain from flexing or the sound the machine makes while you’re doing it.
Following this round of physical therapy is when my body took a big ole deuce. One November morning my husband and I woke up to go to PT. I laid there in bed with the worst cramps I ever had before. So I decided not to go to PT but my husband went. When he returned he was concerned how I was and I kept reassuring him I was either super constipated or Aunt Flo was packing her bags getting ready for a visit. After he got out of the shower he said no more we are going to the hospital. When we got there I had no idea what they would do for someone full of shit or preparing for a visit. Again grandma was in my ear telling me to suck it up buttercup. After blood work, urinalysis, and x-rays both with and without contrast turns out my appendix was the one preparing a bag to exit my body. Barely remember anything after that besides the hubs getting me ice cream to make me feel better. He always knows how to bring a smile to my face. Fun fact, found out at my follow up appointment with my regular doctor on base that my right kidney never developed. When I asked if there’s anything I can do and all he said was “don’t get in a car accident as a passenger?” Gave me a good laugh that was much needed.
Next on the list was my ear. As my memory is failing me I cannot remember exactly what started it. Either I had a cold or I was dealing with untreated seasonal allergies but there was definitely an ear infection going on. What I do remember was Erik was out of town and returning the next day and the kids were with us for the weekend. The party in my ear started on a Friday night and I treated it the best way I knew without having to go to the doctor. Pour a little peroxide in it, listen to all the bubbles, and drain it all out. Pop some vitamin M (800mg Motrin for non military folk) and hit the sack. The pain was so intense and I really wanted to go to the doctor now but it was the middle of the night. I’m not the type of person who likes to bother others especially at night so I moved to the couch and watched TV to distract myself from the pain. I eventually fell asleep and what woke me up was a sigh of relief. The pressure was gone and it felt like a gallon of water exited my ear. So I got up to get something to wipe up what I thought was some kind of funk liquid. Nope, blood. A co-worker was at the house in five minutes from when I asked her to take care of the kids so I could go to the hospital. Turned out my eardrum had ruptured and it is where all the blood came from. As I was getting ready to be discharged the hubs showed up and drove me home. Don’t remember much after that but I do know he brought me ice cream. Since then I have had three more ear drum ruptures. I think my ears took turns on rupturing. Bastards. To include a million and one ear infections and counting. Eventually I was informed it is most likely due to pressure on the Eustachian tub caused from my TMJ.
Everyone keeping track of everything??
Welp that brings us to 2012. Got married in February and we moved to Florida for our next assignment. This is where my body got diarrhea and shit hit the fan. A couple months after we arrived the arm and back got so bad I had to be put on muscle relaxers and given oxy for when the pain was severe. There really wasn’t an oxy issue at this time and it felt like they prescribed it like candy. Due to these medications I could no longer arm and that worked out because I was placed in fraud and it was more of a desk job anyway. Since I was siting at a desk more my left leg started to have really bad issues. There were times I could not even feel my leg. We are now way past feeling tingly and numb or like it was asleep. Eventually it got to the point when I would try to get up my hip would lock and I couldn’t move. Picture someone getting up from a desk, cannot stand up straight so looking like the Hunchback of Norte Dame, dragging along a leg like a spaghetti noodle trying to get to the door because there was a knock. Only to finally get there and the damn person was gone UGH!
Now let’s get dirty! I’m just going to compile all the crap into one toilet because all of this was going on at the same time and every appointment was for something different. Went through physical therapy for my leg with no relief and of course x-rays did not show anything wrong. Someone finally referred me to a specialist and a MRI was done for my left hip. Torn labrum. Doctor said it was most likely from the incident when I was running trails in Virginia so many years ago. Sweet, now we can fix this and my leg is back to normal. Eventually had surgery on my hip and spent an amazing eight weeks in physical therapy learning how to walk straight again. There was so much hope this surgery would help my leg only to find out it did fix the labrum tear but the numbing and tingling was still there. Insert sad face. Before surgery we had also tired cortisol shots with no luck.
If anyone has ever lived in the south you know about the yellow stuff. Ugh the yellow stuff turning whatever color of vehicle you have to yellow! Having to use your wipers to get it off like a fresh coat of snow. For some reason it did not bother me in Virginia but oh man did it in Florida. This is when I kept getting short of breath all the time. Just walking up a couple steps made me have to stop at the top to catch my breath. Now what the heck was wrong with me? The doctor ordered me an asthma test and a full allergy test. Negative on the asthma but lets talk about this allergy test. Little did I know they poke you for each thing being tested. Yes everything so it added up to 20 plus little pricks on your back. After laying there for about 20 minutes freezing my tushy off because the air conditioner was so cold and I had to be topless for the test it was over. So any kind of test has to have a positive and negative for quality check (QC) to make sure the test is working. Well the tech was looking at my back and writing results down when she called another tech over to get a second opinion on the QC. She wasn’t sure if they worked. I have an idea by the way they were whispering to each other something wasn’t right. Then I heard “oh there’s a little bit of reaction, see.” The reported results were all negative but I will never get tested like that for allergies again to confirm.
Shortly after we arrived my ear began hurting again as well. I was referred to the ENT. Next thing I know I’m being scheduled for a nose job. He wanted to see if opening up my sinuses would help alleviate some of the pressure on my eustachian tube. Although it straightened my nose the pressure was still there. His next step was to have my adenoids removed. My husband was with me at this appointment. The doctor looked right at my husband and said “I bet you’ll like that.” Men. Anyway my surgery was scheduled while my hubs was deployed. Many of our co-workers stopped in to check on me and it was greatly appreciated. The doctor warned me this surgery would make my body hurt a lot. My initial thought was I’ve got this. With my nose surgery I wasn’t in much pain. Oh man was I wrong. This surgery rocked my world. I was in so much pain from my head to my toes. I mainly snacked on jello or pudding, took my meds, and slept for the next two weeks. It was easier to be asleep than awake and in pain. I did loose a ton of weight though but guess what??? Didn’t help.
I was also getting cortisol injections in my neck to help with my arm and back. Nothing. Was given a tens unit and the sales rep was smoking something because he described it as getting a massage. Umm no it felt like my whole body was spazzing and caused more pain than relief. They did try a different than normal type of acupuncture as well. When I think acupuncture I think needle placement and you lay there. Nope, they hooked up little electrodes to the needles and cranked them up. It wasn’t comfortable and didn’t get any relief from it. So put another check mark next to that trying to relieve my pain.
Now there was one thing that did help relieve some pain. Chiropractor. Eglin was one of the first bases in the Air Force testing out the need for chiropractors for active duty. Anyone who has been in the military no matter what job you did you knows active duty needs chiropractors. The only issue there was just one chiropractor and a ton of patients so it was hard to get in on a regular basis. Also learned they can only examine and treat the body part put in the referral. So even though the pain was neck through my shoulders and arms she could only adjust my neck.
The next issue up wasn’t really related to fibromyalgia but it did suck to be diagnosed with malignant melanoma when you are stuck alone. There was a mole on my inner thigh with this little red dot next to it that annoyed me when I would shave. Simply went in to have it removed before I was no longer active duty. It’s one of those moments you will never forget any detail. I was pulling into my parking spot at the crappy apartment I was living in after work when my phone rang from a base number. When she said those words to me I completely blanked in shock for a split second than into panic mode because I have a family, what is going to happen, just so many what’s went through my mind so fast. When I finally came back to reality she was explaining to me how she was going to transfer me dermatology to schedule surgery. Again the mind went blank until dermatology picked up and started talking. Since it’s not really fibromyalgia related I’ll shorten it up to they took a HUGE chunk of skin off my leg and I now get body scans every six months until I die. For my lab tech friends I begged the doctor for a CBC to get a WBC count before I was comfortable accepting everything was taken during the surgery. An increase in WBC means an infection incase you were wondering why I wanted this test done.
The last major incident was New Years Eve 2014. Erik and the kids had already moved to Minnesota and I was stuck in Florida until my med board was over. A med board is when the military finds you not fit to continue military service. In simple terms it is because of your health they have no use for you anymore. Erik came to visit me in Florida because the kids were with their mother. Our plan was to sit and chill watching TV with a couple adult beverages. Well what happened was….we were eating dinner on the couch and I got up to go to the kitchen. My right, not left not the bad one, leg slightly fell asleep and I didn’t think anything of it. It was my left leg that was the pain in the ass so I tried to just walk it off. Yeah that was a big fat nope not today. I rolled my ankle so bad when I looked down my foot was completely on its side. Straight up looked like I had a peg leg and the foot was just dangling off to the side. So off to the ER we go. Happy New Years it was just a really bad sprain. But my husband got me ice cream. Thankfully there were no more injuries or issues until after I was medically retired in April 2015 and joined my family in Minnesota.
It is said people who suffer from fibromyalgia tend to show signs and symptoms for years before being diagnosed. In addition, signs and symptoms usually start following a traumatic experience. I do not remember any specific traumatic experience. Over the years the only thing that comes to mind was being tackled by a six foot 200 pound man during medical readiness training. I was a “patient” and my role was someone who was suicidal in a deployed environment. He saved me and turned out to be one of the best first sergeants in the med group. Any who. I just kept showing more and more symptoms over time. So I was the odd ball who falls into the rare category. I have learned over the years I fall into the rare category A LOT. Continue to follow me and you will see!
More to come! Keep in mind I haven’t been diagnosed yet!
Go Fibro Yourself 