My Journey with Fibromyalgia
I am new to this site and I have already found so much information that has been so helpful and enlightening. It is really comforting to know that I am not alone in this battle. Hopefully, someone will find something useful or helpful from my story. Either way it does feel good to get it off my chest. I'll apologize ahead of time for my grammar...:)
My medical journey began when I was 12 when I was diagnosed with Graves Disease, and Hyper-thyroids. From the age of 12 to my mid 20’s I took medicine to control my thyroid hormone levels, an increased heart-rate and blood pressure. I have always dealt with fatigue as lethargy is a huge problem with Graves Disease. Hyper-Thyroidism causes insomnia so I have been a “night-owI” since the age of 12. I have always been prone to sicknesses. As far back as I can remember I’ve always had some kind of ear infection, sinus infection, bronchitis, strep throat or whatever else was going around. If you coughed in my direction, I would wake up the next day sick as a dog.
I underwent radiation therapy in 2005. This actually killed my thyroid and my thyroid levels have dropped steadily since then. With close monitoring I have changed my thyroid hormone dose throughout the years to keep my levels at a normal level. As of now, I do not need to take any medicine for my Thyroid because my levels have remained steady for the last few years. With that being said, it has not stopped EVERY doctor from attributed ANY problem I may be having to Graves Disease or having a hyperactive thyroid.
2008 was a rough year for all. The economy was crashing and I found myself in the same position as many Americans; unemployed and uninsured. At the time I was living in Phoenix, AZ and had just been laid off from an airline. Luckily, the company gave all employees a great severance package which included 90-days of free domestic flights and one month’s pay.
My best friend lived in San Diego, so I decided to take a chance and apply for jobs in San Diego. I thought the job market would be better and thanks to my severance package I was able to fly for free to San Diego for interviews. I was blessed and was hired at the first interview I had. I moved to San Diego in December of 2008. I slept my best friend’s couch until I was on my feet. All in all I was out of work for around 5-6 months. This length of time without medical observation, and not taking the medicines to control my thyroid combined with high levels of stress left my body shocked and damaged. I had no idea at the time the damage I had caused to my system. I was so focused on finding a job, relocating and starting my life in California with my Fiancé, that I convinced myself I felt fine and I just needed to “tough it out”.
By mid 2009 my Fiancé and I had settled quite nicely in San Diego. We moved into a new apartment together and were both working at great jobs. This is when I began to feel Fibromyalgia symptoms in. As I mentioned before, I have always battled fatigue due to grave disease. So when I began to sleep more it didn’t alarm me or my fiancé. The worst part began when I started having horrible muscle cramps that happened out of the blue. One day I went to buckle my seat belt and my whole shoulder cramped up, the cramp traveled to my neck. It was so painful I couldn’t even breathe, but went away in a few seconds. As time went on the muscle cramps took on a life of their own. I was not able to do Yoga, because bending a certain way would cause every muscle in my back to seize. Stretching my quads would cause my hamstring to cramp; even sneezing would make my whole abdomen cramp up. It felt as if my muscles were wrapping around my bone and the bone would snap at any moment. Insomnia was a way of life at this point and fatigue was the ugly monster that followed me around everyday all day. My muscles began to feel like there were made of cement. The combo of pain and began to ruin my life. I missed work, I didn’t want to go anywhere, and I cancelled on going out with friends. I had reached a breaking point.
I made an appointment with an Internal Medicine specialist around the corner. He did a physical, and a full metabolic screening. He thought that all my symptoms were due to my thyroid because my thyroid levels were slightly elevated. He thought that I may have strained my muscles moving into the new apartment. He prescribed a small dose of thyroxin and flexiril for the “strained muscles.” Of course, this did not help at all.
My follow up appointment was a month and half later and at that point I was so tired and fed up all I could do when I walked into my appointment was cry. I cried and thru the sobs and boogers did my best to explain to him that nothing was working and that it must not be thyroid related because I have NEVER felt these symptoms before. He said I was “depressed” and sent me home with a prescription for Paxil and Ibuprofen 600 for the pain with plans to follow up in 6 weeks.
I knew that this was more than just being depressed. In a last attempt to make sense of all the non-sense and never ending pain I decided to search the internet. I typed my symptoms into Web-MD’s symptom checker and it brought up Fibromyalgia, Lupus, RA and other random options. The website had a Fibromyalgia quiz; which I took and I ended up having EVERY single symptom on it. I printed out the quiz and showed it to my Fiancé. He was pretty amazed by it and suggested that I show it to my primary to see what he thought of this. My doctor reviewed the quiz. And said that Fibro could very well be a possibility, but assured me again that he thought it was my thyroid. Because of the symptoms I had did resemble RA and Lupus he decided to test me for RA and Lupus. Both tests came back negative. This sparked his interest so he did another psychical exam and discovered I had pain in every trigger-point classic to Fibro…Thus began the Fibro journey. (Queue dramatic music *dun, dun, dun*)
My internal medicine specialist became my primary doctor, and he enlisted the help of a Rheumatologist and Psychiatrist. He said they would take a “Team” approach to my fibro treatment, and they would work together to manage my symptoms. My Primary referred me to a Rheumatologist located in the same building. I thought this was awesome, because that were so close and must speak all the time. I felt GREAT, like I just acquired my very own A-team and we’d beat Fibromyalgia together.
My primary doctor took me off of Paxil, and switched me to Prestiq. He said that this was a new drug and patients with Fibromyalgia had success with Prestiq and Gabapentin. The Gabapentin made me so tired, and the Prestiq gave me anxiety on a whole new level that I did not believe was possible. I had panic attacks and was so lethargic from the Gabapentin my body seemed confused. I was up all night with anxiety but so tired and groggy from the gabapentin, it was like my body was playing tricks on me. I called my primary and explained the side effects were too much for me to handle. He said that the Prestiq and Gabapentin should work if it is Fibromyalgia; he had no other answers for me. He said he I should follow up with the Rheumatologist for the pain, and Psychiatrist for anxiety. He would contact each of them, and we would discuss the results on my follow up appointment.
My first appointment with my psychiatrist was pleasant. She was kind, and listened to me, she handed me tissues when the frustration took over and I began to cry. She took empathy on me and tried her best to and assured me that everything would be okay. Her view of Fibromyalgia was that it was a “dumpster diagnosis” doctor’s used when they could not figure out what was wrong with a patient. She assured me that she believed me, and that it wasn’t all in my head. (Which at times I couldn’t help but think it was!) She informed me that I was on an extremely high dose of Prestiq, and decided to wean me off the drug. She prescribed Busbar for anxiety, and a 30mg dose of Cymbalta that would increase if I didn’t have any adverse side effects. I left that appointment feeling hopeful and feeling validated that SOMEONE actually listened to me, and didn’t shut me down when they heard “hyper-thyroidism.”
The next week I met with my Rheumatologist. I’ll never forget the first thing she said to me…it was “Well, you look fine.” I laughed because I thought she was joking or being sarcastic. She wasn’t joking. She looked me up and down with what felt like judgment and disgust in her eyes. A huge contrast to the empathy I saw in the eyes of my Psychiatrist. My Rheumatologist did no physical examination on my first visit because as explained to me that she disagreed with the fibromyalgia diagnosis. She gave me a prescription for Ibuprofen 800…and said the stronger dose should alleviate the pain, and if it didn’t to call her back in a few days. She didn’t discuss where the pain came from, or even seem to care actually.
Of course, the extra 200 mg did nothing to alleviate the pain, and I called her office a few days later. The nurse who answered said that if the pain was so “severe” I should go to the urgent care office, and said the doctor was booked for a month…frustration ensued….
...I went to urgent care….
The doctor at urgent care could not believe how tight the muscles in my back were. He said he had never felt muscles so tight. He gave me a 5 day script of a stronger does of flexirel and also vicodin for pain and said to follow up with the Rheumatologist as soon as possible.
The following Monday I was back in the Rheumatologists office with my paperwork for Urgent Care in hand. I explained how the Vicodin helped the pain and that the Flexirel did nothing for the spasm. She cut me off mid sentence, and said she wasn’t “in the business of handing out opiates to every young person who asked for it.
She went on to explain how people became addicted without even knowing it, and that she would have never prescribed that for the pain, that the doctor at urgent should never have sent me home with Vicodin. She suggested using a heating pad, bathing with Epsom salts, and ice packs for pain relief. Which did work to take the edge of the pain, and I still use a heating pad or ice packs to this day.
I tried my best to explain to her that I was not asking her for Vicodin. I was simply excited that something FINALLY helped the pain. She prescribed Tramadol with Tylenol and sent me home. By this point I had been taking high doses of Ibuprofen for months on end, and even though the Tramadol with Tylenol helped the pain, it also made my stomach burn like there was no tomorrow. I called the Rheumatologist and explained that my stomach was burning every time I took the Tramadol. She said to eat before I take it and AGAIN if the pain is so severe to go to Urgent Care.
I was so frustrated at every appointment with the Rheumatologist she told me to call her if anything came up, and when I called her she told me to go to Urgent Care! It was so frustrating…but I had no other options so followed her instructions and only took the Tramadol after meals. This brought no relief. So I called her back a week later, and she called in a prescription for Tramadol WITHOUT Tylenol.
The Tramadol was a lower dose. My stomach pains seemed to ease. (Turns out that my stomach was inflamed from the months of taking Ibuprofen, the stomach burning has never gone away and I now have Gastritis, thanks doc.)
About a month and a half passed and I continued going to my regular follow up appointments with all my doctors. My mood had improved, and anxiety was no longer a problem. But I was still in a lot of pain.
My Rheumatologist eventually raised my Tramadol dose to two pills every four hours. I took the new prescription to my local pharmacist who said “Doesn’t she know you are taking Cymbalta and Buspar? Tramadol contains Serotonin. Cymbalta releases Serotonin and so does Buspar. The combination of the three medicines can cause Serotonin syndrome.” I explained to him that my Primary should be following up with the Rheumatologist and Psychiatrist, and that he would have called me if he thought there was a problem. The pharmacist was not satisfied with that and had me wait while he spoke to my doctor. He returned 20 minutes later and said that my doctor believed since the dose of Cymbalta was so low it should not interfere with the Tramadol. He filled the script and sent me on my jolly way…
Cut to three weeks later…
My insomnia grew worse, and I was unable to sit still for any period of time. My anxiety was through the roof. BUT, for the first time in months I was not in PAIN. So, I ignored the insomnia and anxiety. When it began too much to handle I called my psychiatrist who prescribed Ativan as needed for the anxiety and Ambien to help the Insomnia.
To bring you up to speed that brought the total number of medications I was taking to FOUR(Cymbalta, Buspar, Ambien, and Ativan as needed for anxiety.) The next few weeks, I began to have what felt like anxiety attacks where I would feel shaky and begin to sweat profusely. When this happened I would take an Ativan and the symptoms would go away.
Like a good patient with all faith in my doctor’s I continued to follow up with all my doctors, and discussed the anxiety with each of them, and they didn’t seem to have a problem with it as long as I kept the Ativan dose low and only took it as needed. Well, the next few weeks I noticed my need for Ativan increased. I attributed this to me building a tolerance to the medicine, and called my psychiatrist to discuss. She agreed and raised my dose from half a pill to a whole pill as needed for anxiety. I went into her office and picked up a hand written prescription to take to my pharmacist.
At the pharmacy, the pharmacist asked me how I was feeling. We had become very familiar with one another by that time, so I explained that I was having anxiety issues and it felt like they were getting worse. He again brought up the potential drug interaction that my medicines could cause and asked me to keep a close eye on my symptoms. He MAY have actually saved my life by saying this to me.
Over the next few days the shaking became worse. Ambien seemed to have ZERO effect on me at all besides making me feel loopy. I began to sweat profusely and couldn’t sleep a wink. One day I woke up and all of my muscles felt as if they were JUMPING. It was the STRANGEST feeling…my legs were shaking even my voice was shaky, I was lightheaded, sweating and my heart was racing. I immediately called my primary doctor’s office; he was out of the office so I left a message with his nurse. I then called my pharmacist, who luckily WAS in. I explained what was happening and he said to CALL 911 immediately. I was thoroughly confused at this point, and in my delirium I assured him that I DID NOT needs an ambulance. Urgent Care was a few blocks away and after many trips to Urgent Care I knew I could safely drive there, it was literally two street lights away. Granted, that was a dumb decision, but at the time I had gone to urgent so many times thanks to my lovely “team” of doctor’s who didn’t have time to see me.
After carefully driving to urgent care I was pleasantly surprised to see that there were only 2 people in the waiting room at Urgent Care and NO LINE. That was miracle in itself. So, I shakily walked up to the desk and attempted to write my name down on the sign in sheet. I say attempted because my hands were shaking so bad I had to concentrate extremely hard to write my name…I started writing the letter “K” and my hands sort of took on a life of their and the letter “K” turned into a squiqly line that somehow jetted across the paper. The nurse noticed my shaking hands and asked me what was wrong. I said to her verbatim what the pharmacist had told and her eyes filled with concern.
This is when I began to get nervous…I knew something was wrong and thought I was probably experiencing a drug interaction and that it would probably go away in a few hours. I assumed the doctor would be able to give me something to stop the shaking. The nurse rushed me to the back room to take my vitals, and sat me in a waiting room. Being an experienced and frequent visitor to urgent care I knew that it would take at least 30 minutes for the doctor to come in. So I was startled when I heard a knock on the door 30 seconds later, and the doctor walked in with the nurse. He asked me to lie down on the table. My muscles had gone from jumping/shaking to the verge of cramping by this time, so when I lay down on the table I felt pain everywhere. And my feet for some reason were pointing straight forward. Like I was intentionally doing this, but I wasn’t! The doctor pushed my feet upwards and they immediately FLEW back to pointing downwards. He took my stats again and said the scariest thing I’ve ever, ever, heard to this day “Call an ambulance she is about to have a seizure. Get her a shot of ativan immediately.” I interjected and told him I had already taken an ativan and it didn’t do anything. He said the shot was 2 mg of ativan, and it would help instantly. He was right when he said INSTANTLY because I don’t really remember what happened next, only bits of pieces.
I recall the paramedics arriving, and thinking to myself how embarrassed I was because they were two really cute younger guys. (Hey, I am still human!) I remember them beginning an IV, asking me questions and bits and pieces of the ride to the hospital. They rushed me to the ER…I remember feeling like I was watching this from outside of my body. I am assuming this was because of the Ativan but I was slurring my words but managed to tell the doctor that my muscles hurt, please help they are cramping it hurts so bad. They put something in my IV and I don’t recall anything after that. I woke up four or five hours later feeling so groggy but still very, very much high off the pain medicine they gave me. I looked around and saw my Dad & Brother sitting next to my bed. They called in the doctor and he explained what had happened. I had indeed experienced a drug interaction and it was Serotonin Syndrome (just as the pharmacist had said), he explained that my body had such high amounts of Serotonin it went into shock and I almost had a seizure. He told me that what I would experience over the next few days is often related to what HEROIN users feel during detox. His words were “You are basically “kicking” serotonin.” For those of you who don’t know “kicking” means quitting a drug that is going to make you sick upon detox. He prescribed Percocet and said my muscles will ache and they will twitch, I’ll probably actually have the urge to “KICK” while lying down.
He explained in great detail the lovely side effects of Serotonin Syndrome. That it usually brings on a case of Chemical Sensitivity Syndrome so I need to stop taking ALL medicines containing Serotonin. He discharged me and said to follow up with whoever prescribed the Tramadol to me because I would need to be off of work for a while until my body got all of the serotonin out of its system. Which meant I needed to go on Short-Term Disability Leave, the doctor printed the forms I needed to fill out for short term and said I needed to have my doctor sign the forms.
The next morning I called my primary to let him know what happened, and explained that the ER Dr asked me to follow up with whoever had prescribed the Tramadol to me. My Primary doctors told me take my disability forms to my Rheumatologist to follow up with her because she originally wrote the prescription. He said she can fill out and sign the documents for short term and that he would like to see me after my appointment with her. (My primary doctor, rheumatologist and URGENT CARE were in the same building so this wasn’t a problem. I assumed they were all on the same page, and communicating because THEY WERE IN THE SAME BUILDING, so that would make sense right?)
I called the Rheumatologist, explained the WHOLE situation AGAIN, and she told me she didn’t understand why she needed to fill out the disability forms. I told her that my primary and the doctor from the ER wanted me to follow up with her because she wrote me the prescription for Tramadol. I set an appointment with her for the next day. She met me at the front desk before my appointment and was angry….some might call it furious. I was still groggy from all the pain medication, and did not have the energy to give her bad attitude the time of day. She walked me to an office and asked me to have a seat. She then began to tell me that I OBVIOUSLY had taken more Tramadol than she had prescribed to me. I assured her I did not take any more than what she had prescribed. She continued her attack by saying that Serotonin Syndrome is extremely rare, and that the only logical reason for this was that I thought I knew more than she did as a doctor and knew what was best for me and took however much Tramadol I felt like taking and eventually “overdosed.” I couldn’t believe what I was hearing and finally had enough of her attitude. I said don’t attack me, I just got out of the EMERGENCY ROOM for a LIFE THREATENING condition, and you’re accusing me of doing this to myself?! I told her that I my pharmacist had called my primary doctor when she raised my tramadol dose, and had warned us both of the potential interaction. And even with the warning my Primary approved the prescription. Her response was that my primary doctor NEVER made her aware of the conversation he had with pharmacist. Which I thought was ludicrous being that they are in the SAME building. I guess my logical thinking was off, because she said the only time they had spoken on the phone was when my primary REFFERRED me to her.
(I later found out that the doctors communicated electronically through email. My Primary assured me that he sent her a “note” through the system after he had spoken with the pharmacist. ) My Rheumatologist continued her barrage and judgmental attack by saying she saw this type of situation all the time. Those patients become so addicted to pain medications they don’t even realize what they are doing, or how much they are taking. I was so furious at this point, and had heard enough. I asked her if she was going to fill out the disability forms and she said no. She refused to take any blame in this situation, and informed me that she would write a letter to my primary stating that she believed I took more Tramadol than she advised, and that I had ultimately brought this onto myself. I took my forms and walked out of her office, and went upstairs to my primary doctor’s office.
I sat in his waiting room holding in my tears of frustration for what felt like hours. When they called me back I was so emotionally drained that he took the full emotional brunt of my whole experience. I told him what the rheumatologist had said (I may have added a few choice words about my feelings towards her) and that she had refused to sign the short-term disability forms. I slammed them down on the table and said that he needed to handle this and NOW. I said that I was sick being made to feel like a bad person because I simply am looking for an answer that it was unfair to make someone feel like they are a junkie because they need pain management. He apologized for what had happened, and assured me he would help me through this. He did handle my short term disability, by the time I had gotten to my car I had a voicemail from my insurance company to follow upon the paperwork he had faxed over. He gave me information on FMLA, and recommended six weeks of short-term disability with intermittent time off as needed when I returned to work. He sent all of this documentation to the insurance company, and the state of Ca disability department. And everything was handled with my leave and my position at work was protected due to the FMLA. I am thankful that he did that, but very resentful that I was in that position in the first place.
I had to stop taking all of my medicine which threw my body into a whirlwind of serotonin withdrawals. The doctor at the ER was not joking when he had warned about the symptoms. I felt like I had the worst flu ever. My muscles ached so bad, I had restless leg syndrome and literally felt like crawling out of my skin. They gave me enough Percocet for a week, which allowed to me sleep through most of the withdrawal. It took MUCH longer than that for me to feel normal again.
I discontinued my treatment with all three of the doctors and found a Rheumatologist who specialized in Fibro treatment, and was ranked #1 in San Diego County. He did a full physical on my first visit, and found that I had two permanent muscle spasms in my back. He even said you can see them by just looking at my back, and pointed them out to me in a mirror. To my amazement my right side of my back was raised two inches higher than my left due to the spasm. He treated me with another muscle relaxant that would reduce the muscle-tone in my body and should relieve the spasm. If that did not work he suggested surgery. He also gave me my first round of trigger point injections, and lidoderm patches to use for pain.
That was almost a year ago. My life has been on “pause” and it’s often difficult to even get out of bed. I’ve lost 20 pounds in the last year, and feel like my body is completely falling apart. Thankfully I have a wonderful Fiancé who keeps me going. I’ve learned to be VERY outspoken with my doctor’s and ask questions. I keep a journal everyday of how I am feeling, and will discuss ANY issues that are concerning me with my doctor’s. This experience has taught me to be aggressive when needed to follow up and follow through always; no matter what.
Since then I have found a new primary who also disagrees with the Fibromyalgia diagnoses. There have been several new symptoms that have presented themselves this year and we are currently waiting testing for Ehler’s Danlos Syndrome.
Just recently I started taking several supplements, and making sure (forcing myself) to eat three healthy meals a day (I’m never hungry, and even when I am I can only eat a few bites.) I have slowly begun to regain some sort of normalcy. My sleep has improved; I’ve gone from 2 hours to 4 hours a night, and am no sleeping 6 hours or more a night. I still wake up feeling tired on some days, on others I wake up and forget I ever had health condition. I’ve learned that I have to pace myself, and try my hardest to stick to a routine. I cannot stay in bed unless I am physically unable to get out, and believe there are THOSE days still. There are times when I need to take a pain reliever to make it out the door or even an Ambien for those nights when I cannot sleep. Then there are times when a simple ice pack, hot pad or icy hot will help me. It’s all about listening to my body, and not ignoring or disregarding ANYTHING.
At this point, I am not sure if I do or do not have Fibromyalgia. I used to hide my condition from people I didn’t realize that by doing that I was pushing them away. I am open and up front with my condition, and I am not ashamed of it. It is what it is. I am ready to move forward and am tired of watching life pass me by. I have a strong support from my Fiancé, and I thank God for him every day, I no longer take anything for granted and cherish the day. Every day is a new opportunity to make things better, and I am looking into the future with optimism and faith.
Feel free to reach out to me if you have any questions or if you need to talk!
Oh and the supplements are taking are Dirobose, Vitamin D, Super B Complex with Vitamin C & Folic Acid, Omega 3, Probiotics, 5-htp w/ tryptophan, magnesium and melatonin.
Also, the new symptoms which lead us to believe that this may be Ehler's Danlos Syndrome were a heart mummer, slow healing wounds and scoliosis. EDS if often misdiagnosed as Fibro, Lupus or RA. It is surprisingly rare but symptoms are extremely similar.