kaida
New member
- Joined
- May 28, 2021
- Messages
- 1
- Reason
- DX FIBRO
- Diagnosis
- 06/2016
- Country
- US
- State
- GA
Hello all. I am currently 22 and was diagnosed with fibromyalgia when I was 17, and I decided to post on this forum because I feel completely alone right now and I don't know anyone I can talk to about all of this. I hate complaining about things that I can't seem to change, but man oh man do I need to complain and get this negativity out somehow.
I have a few health issues that I've known about most of my life. I was diagnosed with PCOS when I was 12; my main symptoms were always coarse/dark leg hair and very irregular menstruation cycles. I was put on Depo Provera injections when I was 15 which stopped the horrendous bleeding I was having, and I only recently switched to an oral progesterone contraceptive about two months ago in preparation for trying to conceive. With PCOS came diabetes, and though I have never been overweight, I have been unable to maintain normal glucose levels without the help of Metformin.
I was also born with crooked hips. My left SI joint sits about 4cm above and 1cm forward from my right SI joint. Doctors noticed this immediately when I was born, and suggested corrective surgery for it when I was three years old. My parents declined the operation because I was already walking around and they didn't think it was necessary to make me undergo such extreme recovery at such a young age. I've always been a clumsy person, tripping over nothing all the time, but this hip imbalance didn't really start causing discomfort for me until about I was 15 years old or so.
In high school, I was a very active and involved member of my JROTC organization. I held several officer positions, was a part of drill team, color guard, sabre team, and regularly did physical training with the marine recruiters twice a week. I was in absolutely great shape and I ate the healthiest I probably ever had in my life. After about two years of this, I completely crashed in such an unexpected way. I couldn't run laps without having to fall out of the group because of the pain in my hips, knees, and ankles. Any activity with jumping was excruciatingly painful for my hips. I used to compete with guys in my class for push-ups and pull-ups, but even that left me with arms and shoulders that were so sore it was difficult to lay down in bed at night. I noticed that I was significantly more tired all of the time, even after full 8 - 9 hour nights of sleep. I started sleeping through my alarms and when I would wake up incredibly late, I would feel so sick and nauseated that I would need at least half an hour in the bathroom to just start feeling normal again to start my day. I started lacking motivation and energy to do basic things that were always easy for me to do before.
These changes were so sudden and so profoundly different from what my normal was, I scheduled an emergency wellness appointment at my doctor's office. We talked about my symptoms, when they started, how they were affecting me, and then my doctor started poking me in a bunch of different places. Each place she poked me felt like she was jabbing me with a sharp stick. They ordered me to give some blood for tests (I can't remember everything they tested, but I remember that they were looking for Rheumatoid Arthritis and that came back negative), and when the results came back they called me and told me that they wanted me to see a neurologist about the possibility of MS. I scheduled this appointment and when I went into the office and answered some questions, the specialist informed me that he was confident that I did not have MS and there would be no need for any tests. He sent his opinion back to my primary doctor.
After one more round of blood tests and another office visit of answering questions, my doctor diagnosed me with fibromyalgia. She explained to me that it was a "diagnosis of elimination", and that the treatment for such a condition was antidepressants, exercise, and a healthy diet and lifestyle. She emphasized that keeping stress low was important.
I immediately did not like this diagnosis and rejected it from the outset. To me, it felt like the doctor was saying "We have no idea what's wrong with you or how to help you" and it bothered me immensely. I was 17 and was already living a very healthy life, so what the heck happened to me? At this same time, I was dealing with other big life events that definitely amped up stress and left me very prone to depression and panic attacks. Over the course of three years, I tried several medications for the treatment of fibromyalgia and depression, including Lyrica, Gabapentin, Pregabalin, Zoloft, Cymbalta, Savella, Amitriptyline, Prozac, and Celexa. I was taken off of every single one of them after negative side effects (or at least, my perception of bad side effects). At one point, I was taking over 13 medications a day including Klonopin, and I decided that enough was enough. I had been seeing multiple specialists throughout these three years to get other opinions, hoping for some other diagnoses that made sense and had a straightforward treatment plan. It never came; every specialist and doctor that I went to see would announce after heavy tests that the culprit was fibromyalgia. I was tired of wasting my money on doctor visits. The pain and fatigue were still getting worse, and I was feeling out-of-it like I was in a daze taking all of those medications. I decided I needed a clean start.
This "clean start" was about two years ago. I completely stopped or weened myself off of all medications. I went on a keto diet for a year in an attempt to improve my glucose levels and to get back into a healthy dieting habit. I started doing yoga and stretching for an hour or more every day to try and relieve some pain and tension in my joints and muscles. I started going on walks regularly (I work in tech, staring at a computer screen on my butt every day and I realized I needed some sun). After about a year, I quit the keto diet because my glucose was still too high even with restricting myself to 25g of carbs each day. I started to slowly pick up the medications that I thought were helpful to me, and I am still taking them now: Metformin, spironolactone, cyclobenzaprine, Nortriptyline, and my progesterone birth control pill as of two months ago. I started incorporating strength training workouts into my daily life, so that I am now doing both yoga/mobility practice and strength training about 4-5 per week, depending on how I feel physically. I drink at least a gallon of water a day. In the past two years, I have become "born again" and have developed a relationship with God that has totally eradicated my anxiety and panic attacks and has given me more confidence and peace with myself. My diet has not been as good as it could be since I have stopped keto, but I am planning another elimination diet soon to remove gluten and then later on maybe grains to see how that makes me feel.
Ultimately now I just feel stuck. Five years later and I am still left here frustrated and struggling. Fatigue is definitely my largest problem. I am so exhausted all of the time that I constantly oversleep and am late to work; I feel as if I am about to collapse from fatigue after only 8 hours of being awake. My body aches so much that it feels like all of my energy just gets sucked out from trying to tolerate the discomfort. Every morning and throughout the day I feel sick and nauseated; I often struggle to eat enough calories throughout the day to maintain my weight and muscle because I often feel repulsed by food. My stomach constantly feels bloated like a balloon as if I had just stuffed my face at Thanksgiving, when in reality I haven't eaten much at all, if anything, for the day.
I am young, and I have so many things that I like and want to do, so many goals that I want to fight to reach, but I feel so hopeless now. How am I supposed to keep going on like this? If I can barely manage my daily life as it is now, how on earth am I going to be able to keep up with my children? My boyfriend and I both want to start trying soon because we want to have our kids while we are young, and I just have no idea how I am going to do it. We're looking at buying a house out in the country so that we can start farming and raising animals, which I desperately want to do. How am I supposed to handle that kind of work when I can barely handle my desk job? I am tired of this, really beyond tired of this. I have accepted the fact that I will never just be "normal" and that I will be dealing with something unpleasant for the rest of my life, but I'm looking for a victory here. I just want one thing to get better, and I wish that one thing would be my fatigue. I wish I at least had the energy to deal with my discomfort without the thought of sleep constantly weighing my mind and body down. I wish I actually had the energy levels for someone my age so that I could properly work on my goals and ambitions in life. I just want one small win for encouragement; something to prove to myself that I won't just be "getting worse" for the rest of my life. And my goodness, I wish it could be as easy and just snapping my fingers and telling myself "Just suck it up and move on", but it isn't. At this point, I am falling back into the depression that I had done so well to overcome. I don't want to succumb to my negativity again. I don't want to lose hope in my future. I don't want to fail myself or my family. My boyfriend, my parents, my friends, and my future children deserve the very best out of me, and I want to be the very best that I can for them. I need some help, and I have no idea where to find it anymore. My willpower is starting to deplete quicker than my energy, and my motivation gets dashed out with thoughts like "Ha, you can't even hear your alarm in the morning, how are you going to do that?" Each night is a routine of moaning and groaning about my achiness that I can't seem to ignore anymore. Each morning starts out worse than the day before, and it is becoming extremely difficult to take care of myself the way I should be. All I want to do lately is to curl up in a ball, cry, and sleep, and this fact in itself makes me more frustrated and angry. I never want to be like this, yet I can't seem to escape from it either. I know that there are many people who have it much, much worse than I do, and that makes me feel even worse for not just "sucking it up" and dealing with it. I just need some help, because I have absolutely no idea how to cope with this anymore.
I have a few health issues that I've known about most of my life. I was diagnosed with PCOS when I was 12; my main symptoms were always coarse/dark leg hair and very irregular menstruation cycles. I was put on Depo Provera injections when I was 15 which stopped the horrendous bleeding I was having, and I only recently switched to an oral progesterone contraceptive about two months ago in preparation for trying to conceive. With PCOS came diabetes, and though I have never been overweight, I have been unable to maintain normal glucose levels without the help of Metformin.
I was also born with crooked hips. My left SI joint sits about 4cm above and 1cm forward from my right SI joint. Doctors noticed this immediately when I was born, and suggested corrective surgery for it when I was three years old. My parents declined the operation because I was already walking around and they didn't think it was necessary to make me undergo such extreme recovery at such a young age. I've always been a clumsy person, tripping over nothing all the time, but this hip imbalance didn't really start causing discomfort for me until about I was 15 years old or so.
In high school, I was a very active and involved member of my JROTC organization. I held several officer positions, was a part of drill team, color guard, sabre team, and regularly did physical training with the marine recruiters twice a week. I was in absolutely great shape and I ate the healthiest I probably ever had in my life. After about two years of this, I completely crashed in such an unexpected way. I couldn't run laps without having to fall out of the group because of the pain in my hips, knees, and ankles. Any activity with jumping was excruciatingly painful for my hips. I used to compete with guys in my class for push-ups and pull-ups, but even that left me with arms and shoulders that were so sore it was difficult to lay down in bed at night. I noticed that I was significantly more tired all of the time, even after full 8 - 9 hour nights of sleep. I started sleeping through my alarms and when I would wake up incredibly late, I would feel so sick and nauseated that I would need at least half an hour in the bathroom to just start feeling normal again to start my day. I started lacking motivation and energy to do basic things that were always easy for me to do before.
These changes were so sudden and so profoundly different from what my normal was, I scheduled an emergency wellness appointment at my doctor's office. We talked about my symptoms, when they started, how they were affecting me, and then my doctor started poking me in a bunch of different places. Each place she poked me felt like she was jabbing me with a sharp stick. They ordered me to give some blood for tests (I can't remember everything they tested, but I remember that they were looking for Rheumatoid Arthritis and that came back negative), and when the results came back they called me and told me that they wanted me to see a neurologist about the possibility of MS. I scheduled this appointment and when I went into the office and answered some questions, the specialist informed me that he was confident that I did not have MS and there would be no need for any tests. He sent his opinion back to my primary doctor.
After one more round of blood tests and another office visit of answering questions, my doctor diagnosed me with fibromyalgia. She explained to me that it was a "diagnosis of elimination", and that the treatment for such a condition was antidepressants, exercise, and a healthy diet and lifestyle. She emphasized that keeping stress low was important.
I immediately did not like this diagnosis and rejected it from the outset. To me, it felt like the doctor was saying "We have no idea what's wrong with you or how to help you" and it bothered me immensely. I was 17 and was already living a very healthy life, so what the heck happened to me? At this same time, I was dealing with other big life events that definitely amped up stress and left me very prone to depression and panic attacks. Over the course of three years, I tried several medications for the treatment of fibromyalgia and depression, including Lyrica, Gabapentin, Pregabalin, Zoloft, Cymbalta, Savella, Amitriptyline, Prozac, and Celexa. I was taken off of every single one of them after negative side effects (or at least, my perception of bad side effects). At one point, I was taking over 13 medications a day including Klonopin, and I decided that enough was enough. I had been seeing multiple specialists throughout these three years to get other opinions, hoping for some other diagnoses that made sense and had a straightforward treatment plan. It never came; every specialist and doctor that I went to see would announce after heavy tests that the culprit was fibromyalgia. I was tired of wasting my money on doctor visits. The pain and fatigue were still getting worse, and I was feeling out-of-it like I was in a daze taking all of those medications. I decided I needed a clean start.
This "clean start" was about two years ago. I completely stopped or weened myself off of all medications. I went on a keto diet for a year in an attempt to improve my glucose levels and to get back into a healthy dieting habit. I started doing yoga and stretching for an hour or more every day to try and relieve some pain and tension in my joints and muscles. I started going on walks regularly (I work in tech, staring at a computer screen on my butt every day and I realized I needed some sun). After about a year, I quit the keto diet because my glucose was still too high even with restricting myself to 25g of carbs each day. I started to slowly pick up the medications that I thought were helpful to me, and I am still taking them now: Metformin, spironolactone, cyclobenzaprine, Nortriptyline, and my progesterone birth control pill as of two months ago. I started incorporating strength training workouts into my daily life, so that I am now doing both yoga/mobility practice and strength training about 4-5 per week, depending on how I feel physically. I drink at least a gallon of water a day. In the past two years, I have become "born again" and have developed a relationship with God that has totally eradicated my anxiety and panic attacks and has given me more confidence and peace with myself. My diet has not been as good as it could be since I have stopped keto, but I am planning another elimination diet soon to remove gluten and then later on maybe grains to see how that makes me feel.
Ultimately now I just feel stuck. Five years later and I am still left here frustrated and struggling. Fatigue is definitely my largest problem. I am so exhausted all of the time that I constantly oversleep and am late to work; I feel as if I am about to collapse from fatigue after only 8 hours of being awake. My body aches so much that it feels like all of my energy just gets sucked out from trying to tolerate the discomfort. Every morning and throughout the day I feel sick and nauseated; I often struggle to eat enough calories throughout the day to maintain my weight and muscle because I often feel repulsed by food. My stomach constantly feels bloated like a balloon as if I had just stuffed my face at Thanksgiving, when in reality I haven't eaten much at all, if anything, for the day.
I am young, and I have so many things that I like and want to do, so many goals that I want to fight to reach, but I feel so hopeless now. How am I supposed to keep going on like this? If I can barely manage my daily life as it is now, how on earth am I going to be able to keep up with my children? My boyfriend and I both want to start trying soon because we want to have our kids while we are young, and I just have no idea how I am going to do it. We're looking at buying a house out in the country so that we can start farming and raising animals, which I desperately want to do. How am I supposed to handle that kind of work when I can barely handle my desk job? I am tired of this, really beyond tired of this. I have accepted the fact that I will never just be "normal" and that I will be dealing with something unpleasant for the rest of my life, but I'm looking for a victory here. I just want one thing to get better, and I wish that one thing would be my fatigue. I wish I at least had the energy to deal with my discomfort without the thought of sleep constantly weighing my mind and body down. I wish I actually had the energy levels for someone my age so that I could properly work on my goals and ambitions in life. I just want one small win for encouragement; something to prove to myself that I won't just be "getting worse" for the rest of my life. And my goodness, I wish it could be as easy and just snapping my fingers and telling myself "Just suck it up and move on", but it isn't. At this point, I am falling back into the depression that I had done so well to overcome. I don't want to succumb to my negativity again. I don't want to lose hope in my future. I don't want to fail myself or my family. My boyfriend, my parents, my friends, and my future children deserve the very best out of me, and I want to be the very best that I can for them. I need some help, and I have no idea where to find it anymore. My willpower is starting to deplete quicker than my energy, and my motivation gets dashed out with thoughts like "Ha, you can't even hear your alarm in the morning, how are you going to do that?" Each night is a routine of moaning and groaning about my achiness that I can't seem to ignore anymore. Each morning starts out worse than the day before, and it is becoming extremely difficult to take care of myself the way I should be. All I want to do lately is to curl up in a ball, cry, and sleep, and this fact in itself makes me more frustrated and angry. I never want to be like this, yet I can't seem to escape from it either. I know that there are many people who have it much, much worse than I do, and that makes me feel even worse for not just "sucking it up" and dealing with it. I just need some help, because I have absolutely no idea how to cope with this anymore.
