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This is my personal “tragedy to triumph” story about how my recovery from chronic illness led me to my life’s purpose. Because of what I’ve gone through, I’m on a mission to educate others about the hidden dangers lurking in most processed foods, and I sincerely hope that you’ll take the time to review the information I’ve gathered here and that it will compel you to adopt changes in your own life. Although my particular symptoms were ultimately diagnosed as “Fibromyalgia,” you could insert countless other health conditions and get this same story and solution; and I’ve witnessed the transformation in many other people throughout the years.
Chronic pain and fatigue stole several years of my life. In retrospect, it appears that I am one of the lucky ones. At the time, however, I wasn’t sure how I’d make it through another day – or what the point would be even if I did. I was in pure misery, suffering from an “invisible illness” for which there was no treatment and no cure – and, really, no clear cause. These were the worst years of my life by a long shot! I was 25 years old and was just finishing up my final year of graduate school. I was just getting started with my “adult life” when the rug was pulled out from under me. Life, as I had known it, was over!
Good health was something that I’d always taken for granted, I suppose. I lived the first 25 years of my life without any real medical problems – never a broken bone; no major surgeries; never a hospital stay; no chronic conditions; and no need for regular prescription medications. However, in August 2002, all of that changed. And now I am finally sitting down to tell my story to anyone who will listen. If just one person finds this useful, then it is well worth the time it takes to do so.
In preparation for this writing, I spent several hours reviewing my medical records at my doctor’s office and taking detailed notes by hand because they wanted to charge $0.50 per page to make photocopies, and that would’ve added up to a pretty penny with all of the records in my file! I am also blessed to have kept a “health journal” at various times throughout my years of illness, so I have compiled those details here, as well.
August 3rd – I guess you could say that this is the day that changed my life forever. I began feeling ill with what appeared to be “flu-like” symptoms. My throat was sore, and I was extremely fatigued; I couldn’t work more than half of the day because I would get so exhausted that I’d have to go home early. My muscles were very weak; it felt as though weights were tied to my arms. My neck was stiff and painful from the shoulder line to the base of my skull; it felt like someone had beaten me with a bat. I also had pain in my upper arms; this was more like a burning sensation that’s difficult to describe. Additionally, the glands in my neck and under my arms were sore and tender, and there was a similar soreness that spread across my chest, from underarm to underarm. I had intermittent chills, but never a fever.
After three days of these symptoms, I made an appointment with my primary physician. I can’t really say specifically why I was compelled to visit my doctor, other than to say that I had never felt so sick in my life! I thought that maybe if I got to the doctor soon enough we could “get a handle” on the infection, and I could get on with my daily life.
I was so relieved to get to the doctor, assuming that this would be the beginning of a solution for my symptoms. He tested me for Strep, but the test came back negative. He diagnosed me with a “viral infection,” and told me to rest, drink plenty of fluids, and take Tylenol as needed for pain.
Four days later, my throat was no longer sore, but my other symptoms had worsened. By this point, I also began having ear pain and some nausea. Perhaps you are reading this and thinking, “big deal, sounds like you had the flu.” I assure you that this was worse than any flu I had ever experienced – I was scared that something was really wrong. It was day seven of symptoms, and I seemed to be getting progressively worse! I wondered if perhaps my Strep test had been a false negative or if, by some chance, I had Mono or something else that they hadn’t tested for the first time, so I returned to my primary physician. He ran another Strep test and a Mono test. Both were negative. At this point, my doctor prescribed 10 days of Amoxicillin, stating that perhaps I had some sort of bacterial infection. After all, with most viruses, people are certainly feeling better by the seventh day!
Ten days and an entire round of antibiotics later, I still didn’t feel any better. I called my doctor, and he prescribed another 10 days of Amoxicillin. Eight days after that, I was still not feeling better. In case you’ve lost count, at this point it’s been 25 days since I got sick! And I’m not just saying that I was still a bit sore or a little tired – I was absolutely NO better than on day one, except that my throat was no longer sore.
My doctor prescribed a third round of Amoxicillin, along with a round of steroids. He suggested that if I weren’t feeling better in one more week, then I should visit an ENT Specialist. “One more week!?!?” I thought, “It’s already been more than three!!”
He also prescribed Medrol (anti-inflammatory) and Zithromax (antibiotic) to try to treat the swelling. At this point, my mom advised me NOT to take the third round of antibiotics because she had heard of people who were prescribed too many antibiotics and actually felt better once they STOPPED taking them. So I didn’t take this round of antibiotics but felt that I should probably just go to the ENT.
On September 3rd, I returned to my physician because my symptoms were not improving. In addition, my throat was swollen again, and I was now having shooting pains in my left shoulder, as well. However, the neck stiffness and pain was my most unbearable symptom at this point. There was nothing I could do to get comfortable; and it was painful and exhausting just to hold my head upright. At this point, the part of the day that I most looked forward to was bedtime – I just longed to fall asleep because that’s the only time I wasn’t suffering. It felt like I had an awful case of the flu with horrible body aches, except it would NOT go away. This day marked one MONTH since it all began! None of the medications had offered any relief or improvement in my condition, so my physician scheduled an appointment for me with an ENT Specialist the following day.
I was so excited for my ENT appointment. I just knew that he was going to figure this whole thing out and get me fixed right up. After all, that’s what specialists do, right? Besides, he probably saw cases like mine every day, and I was sure my symptoms were “small-time stuff” as far as a specialist would be concerned.
Unfortunately, it didn’t turn out to be so simple. In fact, the ENT specialist said that I didn’t even have any swollen glands. I couldn’t believe my ears! No swollen glands? But I was in so much pain under my arms and in my neck! He told me that he was sorry, but he could find no ENT explanation for my pain. I was devastated. How long could I go on like this?
The ENT recommended that I see a Rheumatologist to determine if I had Fibromyalgia. If that exam was negative, then he suggested I see a Neurologist to rule out MS or some other “less likely” diagnoses. At this point, he felt that I had a musculoskeletal problem. Well, that all sounded just a bit more “serious” than I had hoped. I was really banking on him finding something a bit more temporary and sending me on my merry way.
Note: I’m not really sure how things progressed over the next few months. Apparently, I did not pursue any appointments with any other specialists until January 2003 (because there’s nothing in my medical records for those 4 months), and I really don’t remember why I didn’t rush off to the next specialist as the ENT had suggested. Perhaps I felt a bit better? Perhaps I had gotten used to the pain a bit? Most definitely I was scared of what I might find out. Additionally, I had done a bit of research on the Internet about Fibromyalgia, and I remember feeling that it seemed like a “catch all” diagnosis. Fibromyalgia is not a disease but, rather, a syndrome – a cluster of symptoms. To me, that just wasn’t a good enough answer for what I was experiencing, and it seemed like a fairly useless diagnosis that meant not much more than, “we have figured out many diseases that you don’t have, but we still don’t really know what’s wrong with you…but, hey, there are tons of other folks who have your same symptoms – oh, but there’s not much we can do for you.” Hmmm…didn’t quite seem worth the co-pay.
On January 2, 2003, I returned to my primary physician because I continued to experience the pain, tenderness and weakness in my neck, shoulders, arms and chest that began in August. I was growing weary with daily life because the simplest of tasks had become a struggle. It was becoming impossible to lift things or to do things that required raising my arms above my head – I couldn’t even dry my hair without taking “rest breaks.” It was exhausting just to get up and get dressed and ready – let alone to go anywhere or to do anything!
I was also experiencing a new symptom at this point – tingling/numbness almost constantly in my upper arms and, intermittently, across my chest. I was wise enough to know that tingling/numbness could be pretty serious, so I decided to check back in with my physician. There just had to be an answer!
I would almost get excited when a new symptom would emerge because I would think, “Wow, maybe this will be the symptom that finally puts all of the pieces together and allows them to identify exactly what my problem is.” My doctor prescribed some Naproxen and did some x-rays of my chest and cervical spine, which were normal. He made an appointment for me with a Neurologist later that week. Finally, it seemed we might be onto something! Tingling and numbness sounded like just the things that a Neurologist should be able to diagnose!
A few days later, I visited the Neurologist. He did a complete neurological exam. If you’re not familiar, neurological exams are very thorough and detailed – which really gave me a lot of hope because I had never been examined so thoroughly; I just knew they were onto something! In addition, they ordered a bunch of blood work.
I passed the exam with flying colors, and the blood work was all negative, too. It may seem weird, but I was a bit disappointed. At this point, I was so exhausted by the whole ordeal; and I just wanted an answer – someone to tell me that they knew what the problem was. Of course, I was also relieved because I certainly did not want to be dealing with any sort of neurological disorder, either! The Neurologist concluded that he couldn’t rule out a “myopathic process,” so he ordered an MRI of my cervical spine. This, too, came back as “normal.” He prescribed Nortriptyline for my pain. I refilled this prescription several times, but it sure didn’t take care of the problem. I was suffering horribly, but every test told me I was “normal.” I knew I was anything but normal; normal people don’t feel like this!
Throughout the spring, my symptoms continued. It was difficult to wrap my brain around it all because I had different symptoms at different times. The most challenging symptom for me, by far, was this difficult-to-describe pain in my lungs. The best way I can describe it is that it felt like someone was scraping out the inner lining of my lungs with a razor blade. This is the symptom that basically robbed me of my personality and devastated me to the core.
I had always been that “bubbly” person who loved to socialize and clown around. As this symptom progressed, I became less and less able to do so. It got to the point that when I attended social functions and family get-togethers, I didn’t really even talk because I knew there would be a price to pay. (Even now, it almost makes me cry just to explain this part of the story.) I loved to sing along to music, especially while I was driving…but I just couldn’t do it anymore! In fact, this quickly became my gauge for whether or not I was having a “good day” – I’d rush into the house after work and tell my hubby, “Guess what, guess what….I was SINGING in the car on the way home today!” and we’d fill with joy at the thought that I’d had some relief, as temporary as it may be. Gosh, it sounds so silly and miniscule looking back on it now, but those little “glimmers of hope” really made a difference at the
Another one of my most challenging symptoms was a “ripping pain” in my chest that felt like my ribs were tearing away from my sternum. Doctors often mistook this for Costochondritis. I would also have lots of “burning sensations,” especially from the base of my neck down my upper arms. I suffered for a while with IBS, as well. During that time, I lived on plain boiled chicken breasts and rice – just to avoid abdominal pain.
Fatigue was also a major issue, which is why I originally thought I might have had Mono. I also didn’t sleep well; I would awaken many times each night and often had much difficulty getting back to sleep – I would just wake up and feel wide awake in the middle of the night. I had also become hyper-sensitive to touch – I couldn’t wear a bra because it felt too constricting, like I couldn’t breathe well. I also couldn’t bear the pain if I would lie down and my shirt was folded over causing me to lay on the edge of it – just that much of a crease in the material could send me through the roof. I couldn’t lean against a wall because even that much pressure was too painful. Even to rest my elbows on my upper legs, as I’d like to do when sitting, was out of the question. And I couldn’t wear a seatbelt, either, because that pressure was way too painful. In fact, driving was by far the worst task for me because just holding my arms up to the steering wheel was excruciating and exhausting for my neck, shoulders, arms and chest.
Possibly one of my strangest symptoms, though, was that loud noises caused me pain. And I don’t mean that the noises hurt my ears or gave me a headache; I mean the pain I was feeling anywhere in my body was greatly exacerbated by loud noises such as the bass in loud music or children screaming in a phone caller’s background. It was also very painful for me to be startled. I’m not sure exactly how to explain it, but if someone startled me, it was like pain shot through my entire body somehow.
Also, my heart would often race, and I could feel my pulse pounding throughout my entire body. Doctors treated me for “anxiety,” but I KNEW that was NOT me at all. I knew that my BODY was just exhibiting symptoms; I couldn’t figure out why it was happening, but I knew I wasn’t anxious. My heart would race, and I had pretty constant pains in my chest, but there was no way I was having panic attacks!
During this time, I often went home from work for my lunch break. Even though it was a 30-minute round trip drive…the remaining 30 minutes that I got to rest on my comfy couch was something that I looked forward to. There was a hospital half way between my office and my house, and I can’t even count the number of times that I was driving past that hospital debating whether or not to just march myself into the emergency room…but then reality would set in and I’d feel so hopeless realizing that if all those other specialists hadn’t figured me out, then some ER doc probably wouldn’t either. But, then again, maybe I’d luck out and happen to get a doc who would just happen to have seen a case like mine before and, like a fairy tale, this whole ordeal would come to a happy resolution. In the end, logic always prevailed and I kept driving.
By this point in my illness, my friends and family and I were spending a lot of time Googling things on the Internet trying to come up with a diagnosis and a solution. In no time at all, this research became like my part-time job. It was such a Catch 22, though, because I didn’t have enough energy to go to work and cook dinner, let alone to spend hours per day on a wild goose chase on the computer – – but, then again, I really wanted to get better! Looking for answers eventually came to be a source of stress in itself. Every time someone made a suggestion, I would tirelessly research their lead on the Internet, hoping for an answer – but I always came up dry.
In May, I went back to my primary physician. This time I had been experiencing extreme pain on the side of my face and a shooting pain in my right ear for about a month. I was prescribed Rynatan, and, according to my medical record I had “right serous otitis, presumably based on Eustachian tube dysfunction” – whatever that
means! A week later, I returned to my doctor because I had not improved at all, even with Vioxx and corticosteroids. I was prescribed Vicoprofen until I could get a mouthpiece. My doctor felt it was probably TMJ and sent me to a dental specialist. This dentist said that I had TMJ, and he gave me a mouthpiece to wear at night, which greatly improved the condition.
Throughout the summer, I started experiencing stiffness in my knee joints. Particularly when bending or kneeling, it would feel like I needed to “oil” my joints in order to straighten them. Gradually, I began exercising less and less because of my knee pain and stiffness.
In August, I finally went back to the doctor because I had so much pain in my knees, especially the right one. He thought it might be my meniscus, so he sent me to Sports Medicine. They said I had arthritis and tight quads, and they sent me to physical therapy. Much of the time I was going to PT, it was actually my left knee causing me the most pain, even though my right knee had been worse since the beginning and was the reason I sought treatment in the first place. They thought this was strange but reasoned that perhaps it was due to overcompensating for the other knee. The left knee especially hurt on the inner side, with many positions feeling like my knee would get stuck in a bent position or “snap” if I tried to straighten it. Unfortunately, my PT could see no mechanical reason for this pain and wasn’t really sure what to do about it.
Around this time, I also had one REALLY bad weekend where I was laid up in bed because the front of my thighs were “burning” – like the feeling I usually only had in my upper arms or back of my neck.
I finally went to the doctor for the pain I’ve been having in my lower chest, especially on the left side. It is painful to roll over, twist, cough or bend; and it is especially painful to strain or lift heavy things. It generally hurts way more if touched. For the past few months, I have frequently awakened in the night to a feeling that, for lack of better description, feels like my ribs are going to snap at the point where they attach to my sternum. Until now, I’ve only had this pain in the middle of the night – well, with a bit of lingering tenderness in that spot the next morning. But now, if I touch that spot any time of day, it feels just like the middle of the night pain, and it’s excruciating. When it happens in the night, I often must call out for my husband so he can wake up and push me over. I’m always laying on my side when this happens, and if I roll over by myself, it feels like the most awful tearing sensation – like my ribs are literally ripping away from my sternum (kind of like a shin splint type of pain, but in my chest). It hurts a bit less if I allow my husband to roll me over …because I’m not using my muscles, I guess??? Who knows!
The doctor performed x-rays and said it was probably costochondritis or pleurodynia caused by a viral infection. He prescribed Relafen (anti-inflammatory) 500mg twice/day and said to come back if I didn’t feel better in 48 hours. The pain continued to worsen, despite taking the anti-inflammatory meds regularly for 2 days, and it eventually spread throughout my entire chest and around the back of my rib cage.
Needless to say, I was back at the doctor just 48 hours later. By this point, breathing had become QUITE painful. He seemed a bit surprised that I hadn’t improved. He prescribed Darvocet for my pain and decided that, with the variety of body aches I had suffered from during the past year, a visit to a Rheumatologist wouldn’t be a bad idea – he thought I had Fibromyalgia. I requested something for anxiety because someone had suggested to me that perhaps I was anxious and tensing my muscles too much or something, and that maybe if I relaxed, my body could heal better. I stayed home from work the rest of the day (Friday) and rested all weekend, too, and took the anti-inflammatory and anti-anxiety meds. By Monday I was feeling quite a bit better. Although, there was still some tenderness to the touch in various parts of my chest (especially near the top of my sternum) and in my back.
At this point, it had been well over a year since my symptoms began. I decided to go ahead and visit a Rheumatologist. He conducted a Tender Points Exam and reviewed my symptom history and medical file. He concluded that I was suffering from Fibromyalgia. He prescribed Nortriptyline for bedtime to aid with sleep because it was possible that I was not getting the deep, restorative sleep that I needed in order to feel well. He also suggested moderate exercise daily, and he wanted me to return for a follow-up visit in 1 month.
A few weeks later, my chest and lung pain was really hitting me hard, so I returned to my physician. He recommended a cervical spine MRI because he suspected a neurological disorder or possibly an inflammatory myopathic process. In the meantime, he started me on Tramadol for pain and Protonix in case I had an Acid Reflux issue, as well, because this was common in my family.
A few days later, the cervical spine MRI revealed…nothing! Ugh!
Shortly thereafter, I returned to the Rheumatologist for my follow-up visit. I was feeling somewhat better and was sleeping better, as well. However, I was still awakening several times each night, so he increased my Nortriptyline dosage.
I returned to my physician with pain in my mid-chest. He reasoned that, perhaps, all of the anti-inflammatory medications that I had taken might have worsened the burning sensation in my chest, which he assumed was due to Acid Reflux. The Protonix had not been alleviating the pain, so he ordered an upper GI scope. And what did that reveal?? Nothing – perfectly normal (as usual)!
I was still experiencing burning pains in my chest, so my doctor ordered a complete abdominal ultrasound which revealed that my gallbladder, liver, spleen, pancreas, kidneys and aorta were all NORMAL. My medical records at this time also show that I was negative for H. Pylori.
On March 4, I stopped by the local dog shelter to browse at the animals. When I entered the building, I felt a strange sensation rush over me. I’ve never really been faint, but I suppose that’s how I was feeling – a bit like I was going to pass out. There was a lot of pain and pressure in my chest – like an elephant was sitting on my chest and the air was being pushed out of me. I sat down immediately and called my husband. He rushed me to an Urgent Care facility, but by the time we arrived there, I was feeling fine. They did an EKG and some blood work, anyway, but all was…. normal.
Four days later, I returned to my primary physician for chest discomfort. They took x-rays of my chest, which were…normal. So they ordered a CT scan, and said that if that came back normal, I should seek trigger point injections through the Pain Clinic. Well, guess what? CT scan was normal, so off to the Pain Clinic I went.
My appointment was on March 22, and they decided to try me on some Lidoderm patches and Bextra and, also, Neurontin (an anti-convulsant) at bedtime.
While driving home for lunch break, I was crying in the car and almost drove myself to the hospital because the pain is so bad and I have this crushing pain in my chest. I don’t know how to describe so many of my symptoms, other than that it feels like I should be in the hospital.
Beautiful weather today, but I didn’t go for a walk or play with my dog. This is so uncharacteristic of me, so I know something is seriously wrong with me. I stayed home from work to relax and be inactive and to not have to talk (because it hurts my lungs), but it didn’t seem to really help at all. I rode in Chad’s truck today – was a very rough ride, which is painful. Called my mom crying because I have a weird sensation in my chest/lungs (like I’m breathing in a chemical?); which is worse when laying down and seems to come and go on its own.
Perhaps it’s from these Lidoderm patches the Pain Specialist has me wearing on my chest? Yesterday when I called his office to tell him about this, they told me to “weather the storm” a bit longer. What!?!?
Chest is acting up today again, so looks like it’s going to be a “no talking” day. And no WAY could I wear a bra or use the shoulder belt in the car! Had that “breathing chemical” feeling again today from 5-5:30pm, but that’s it. Random! No dose of Nortriptylin for tonight. Starting Glucosamine and Chondroitin; hopefully that will help with something!
Still wearing the pain patches on my chest. Had that “breathing chemical” feeling a few times today. Resumed Nortriptyline.
Awakened in the night by a “ripping” pain in my chest – like my ribs are tearing away from my sternum. Somewhat similar to a shin splint feeling, but no one has been able to figure out what this is. I know what it is – EXCRUTIATING! Still wearing the pain patches on my chest. “Breathing chemical” feeling a few times again today. Hey, I’ve only been waking up ONCE each night for this past week, though. Cool.
Still wearing the pain patches on my chest. “Breathing chemical” feeling MANY times today, and it kind of burns, too. Also have a lung pain similar to when you run in really cold weather and your lungs “burn.”
So much chest/lung pain today that breathing was making me cry.
Stopped using patches on my chest because they aren’t working anyway and maybe they are causing this “breathing chemicals” symptom?
Had a follow-up visit with the Pain Clinic today. Happy to report that my pain has improved some. But not thrilled to be on all these meds. They increased my
Neurontin and Bextra dosages.
Another follow-up visit with the Pain Clinic today. Meds seem to be helping because my pain is minimal compared to a month ago!
I visited my primary physician because I was experiencing frequent nausea and intermittent abdominal pain in the right upper quadrant (and sometimes, but less frequently, in the left). Because I have a strong family history of gall bladder disease, the doctor suggested a HIDA scan if I wasn’t better in 2-3 days. I was given Donnatal and told to drink clear liquids, as it could be a virus.
I returned to my primary physician with the same abdominal symptoms as last month. He suggested continuing Donnatal and also gave me some Metronidazole (an antibiotic). According to the doctor’s notes he was, “optimistic that my response would be brisk to this approach, but felt that I may still require an HIDA scan to evaluate my gall bladder.”
I went back to my primary doctor because of abdominal pain and nausea. By this time, I had taken 2 rounds of Metronidazole and Belladonna, but I still had pain across my abdomen, “sharp shooting pains” in my mid abdomen, and a frequent pain like a pole was being pushed through my stomach. These pains were intermittent but frequent, and didn’t seem any worse following meals. My doctor set up an appointment for me with a gastroenterologist.
Perhaps we could’ve saved a bunch of time, energy and money if someone had just bothered to ask me what I’d been eating. During this time, I was keeping a food journal in hopes that I’d figure out if I had a food allergy or something. Here’s ONE sample day from my food journal. I wish I could honestly say that this is not a representative example, but sadly it is:
8:30am – bagel with PB&J
1pm-steamed rice with chicken and soy sauce
Afternoon- lots of Starbursts at work
7pm-Doritoes, bite of soup
7:30pm – ice cream
8pm-more ice cream
Hmm…I can’t imagine why my stomach hurt!?!? This is SO embarrassing and sounds crazy to me now, but it TRULY never dawned on me that all of this CRAP could be contributing to my agony.
The Gastroenterologist diagnosed me with Irritable Bowel Syndrome, which I translated as, “We have no idea why you’re having these problems or what to do to help you, so try this.” Oh, and the “this” was more drugs – more specifically, Levbid and Reglan. They also recommended a high fiber diet and said if I didn’t improved, then I may need a CT scan of my abdomen and/or head (huh?) and, possibly, a colonoscopy. Hmmm…nothing like the threat of a colonoscopy to make you more determined than ever to find yourself an alternate diagnosis!
Unfortunately, I did not get any relief from their medications, so I ended up back at the GI office a couple weeks later with the same ongoing symptoms. They wanted to order a colonoscopy, and if it was “normal,” they would treat me for “functional abdominal pain related to IBS.” Hmmm…I already knew I had abdominal pain, so I decided to skip the colonoscopy – thank you very much!
And back to my Internet diagnosis searching I went…
By this time, it was becoming nearly impossible for me to fulfill my duties at work. I was running an after-school program for 125 inner-city youth and managing a part-time staff of nearly 20 people. I began to accept that, perhaps, I was destined to a life of “Fibromyalgia” as the doctors had been telling me. I was so run down from trying to find other answers that, eventually, the only “answer” I’d ever been given started to look better and better. For the first time, I started letting people know that I had Fibromyalgia. I must admit that it was a huge weight lifted off of my shoulders to accept that that’s what was wrong with me – even though it meant that there was no cure, no known cause, and really no viable treatment options. It just felt good to have a “diagnosis” – a simple way to tell people about what was wrong with me – because, by this point, the not knowing and the trying to convince others that something was “legitimately” wrong with me were almost worse than the symptoms themselves sometimes.
Although it had been over a year since my original diagnosis, it wasn’t until this point that I decided to accept it and to dig in to learning what, if anything, could be done for me. I returned to the Rheumatologist who had originally diagnosed me in hopes that he would have some recommendations. He was not of the opinion that drugs would do me any good, which I was relieved to hear since I had already started taking myself off of my meds because I felt like I couldn’t think straight anymore – I couldn’t think of the simplest words; I would proofread emails 3+ times before sending them out (and each time, I would find more silly mistakes). I just started thinking about how so many of the doctors would start me on 2 or 3 new meds at a time, and I began wondering, “even if I do improve, how the heck do they know which one is helping?” Plus, most of the drugs had side effects that were the very SYMPTOMS for which I was taking other drugs…it just didn’t add up…and NONE of the drugs had completely resolved ANY of my symptoms anyway, so I felt I was just on the wrong path.
The Rheumatologist sent me to a Pain Psychologist because he felt that the best thing for Fibro patients to do is to learn how to cope with the pain and fatigue that would always be part of their lives. I spent a few sessions there, and it was helpful. The hubby also came with me one time as they suggested, and it felt great to have a neutral third party explaining everything to my husband with me. (Even though my hubby was always SO great about it all and ALWAYS believed that I was really sick , I was still always a little scared that he’d stop being so willing to put up with it all because what a “bum deal” for him through all of this, you know? He basically had his wife taken away.)
February 6, 2005
(Journal notes that I gave to my Rheumatologist to be added to my medical file)…
On January 16, I told my boss I’m resigning my position because it’s too much stress and too many hours for me to handle. It takes everything in me to come to work each day and pretend that I feel good. I used to be able to “get through” the work day, “recover” all evening or weekend, and “bounce” back the next day. But now I feel crummy almost ALL day, so all of my “good energy” and “not so painful” time is spent at work. Then I’m laid up in bed during my “free” time. I am pretty much either in bed or at work these days. I don’t do many “optional” things because I am BARELY able to do the things that are required (including my job at work). After discussing all of this with my boss, we mutually agreed to experiment with possible accommodations that might allow me to remain in my position more comfortably (hire more staff to help, reduce my hours and workload, allow me a more flexible work schedule and the option to work from home as much as possible, etc.). We will re-assess on February 11.
CURRENT PAINS/SYMPTOMS –
So many of my symptoms are difficult to describe, but I’ll do my best….
-Whole body is achy, like I have the flu.
-Feels like I am bruised all over (but no bruises are visible). Like someone beat me with a bat, especially at the base of the back of my neck and across my shoulders.
-Whole body is tender. Hurts to lean against objects – like leaning against a wall makes me want to cry.
-Squeezing pain in my chest is almost constant and often accompanied by shortness of breath. Especially painful when I walk quickly or try to talk while I’m walking. “Bouncy” car rides are painful for my chest, and the pain is worse if I bend over. It even hurts to sniffle.
-My rib cage hurts all over, especially when I have to lay down on it. It’s extra painful if my shirt is folded over and I lay on that part, or on the edge of a heating pad, etc. Unbelievable! Sounds crazy to even write this one down, but it’s a major
source of pain every day!
-Upper and lower jaws are stiff and painful. My forehead also hurts, so it’s painful to make any sort of facial expression or to lie on my face. It’s like my facial muscles are sore??
-Buttocks are very tender to the touch. I take a chair cushion with me to work, etc. and can no longer sit on our wooden kitchen chairs at home without one.
-My inner knees are so tender that it even hurts to lay on my side with one leg resting on the other. I absolutely cannot!
-Quadriceps are also especially tender. If I were to sit in a chair and rest my elbows on my thighs, the pain would send me through the roof!
-Burning pain, especially in my upper arms, and often at the base of the back of my neck and across my shoulders, too.
-Pain that feels like “swollen glands.” Feels this way in my armpits and all the way across my chest in between. Docs say my glands are fine, though.
-I cannot put my chin to my chest without a sharp “pulling” pain traveling down my spine. Feels like my spine will snap.
-I REALLY don’t know how to describe this one, but NOISES cause me pain (e.g., dogs barking, bass from the stereo, kids in the caller’s background when I’m talking on the phone). It’s like these noises actually cause physiological pain somehow. I don’t get it….
-Major neck and shoulder stiffness and pain, like someone took a bat to me!
-Overall: On “good” days, I feel like an old lady; on bad days, it feels like I should be in the hospital.
I did not change my mind about resigning my position, so I will be done at the end of May. Since January, I have been exercising 20 minutes per day (stationary bike, walking my dog, free weights, stretching, etc.). I learned a lot from the Pain Psychologist, also, and I regularly use the relaxation techniques that he taught me. All of this has helped me to manage my pain more easily. The gentle exercise seems to really help. It definitely seems ironic, and I didn’t believe it could help at first. After all, I was in pain ALL of the time and it hurt to sit still
– exercise seemed crazy, but I started small and worked my way up. And I’m glad I did.
My boss suggested that I get a second opinion just to be sure of my diagnosis before resigning to a lifetime of chronic pain, so I went to another Rheumatologist at a separate hospital. Unfortunately, he agreed that it was Fibromyalgia.
June 2005: STRESS RELIEF!
I was relieved to be finished with my stressful job, and I began working at a part-time, very low stress job. Things were better – I’m not sure my symptoms actually improved much, but I could cope with them much more easily because my work schedule was much more bearable, and I had more time off to “recover.” I was still in pain much of the time, but I was functioning much better; and I sometimes had days when I felt pretty good. I still wasn’t wearing a bra or a seatbelt, etc., but I wasn’t laid up in bed during all of my free time, either.
May 2007: INFORMATION THAT CHANGED MY LIFE!
I maintained that same work situation for about two years. During this time period, I would describe my condition more as a syndrome with “flare-ups.” Rather than being in severe pain all of the time as I had been in the past, my symptoms would flare up and recede… flare and recede…flare and recede. Unfortunately, there was no rhyme or reason to the flare-ups, so I never knew which “me” I would get on any given day – I could go days at a time feeling pretty good and then…wham! Out of nowhere, I’d be laid up in bed. Life was totally unpredictable, but much more manageable than before.
Then, while out of town visiting my mother in-law, I picked up a book she had lying on her table. It was called Natural Cures “They” Don’t Want You to Know About by Kevin Trudeau. While I did not adopt the entire protocol outlined in this book, the major take-home message for me was…If you want to prevent disease, you must pay attention to what’s in the INGREDIENTS list on everything you put in your mouth. WOW! I had never, ever thought about it that way. Until this time, the only information I’d paid any attention to on labels were the nutrition facts – I tried to minimize calories/fats/carbs to control my weight. I was totally the Lean Cuisine meals, diet pop and protein bars type of person until that day – I could NOT believe what I was reading. It was the hugest wake-up call I’ve ever had!
I borrowed the book from her, and the hubby and I read it all the way home on the airplane. For whatever reason, the book just REALLY struck us both to the core. The strange thing is that we never even thought about the information in terms of it possibly relieving my Fibromyalgia. Why would we, though? After all, every doctor we had spoken to and everything we read stated the “fact” that this was a chronic condition which had no cure.
On the flight home, we decided that from that moment on, we would only eat foods if we understood every bit of what was in the ingredients list – no more mysterious, health-depleting food additives for us! We arrived home that night to the harsh reality that there was really nothing in our kitchen that we could eat – literally. It was late Sunday night, and we had to work the next day. To save money, we were always the type to pack our own lunches, but suddenly we had nothing to pack. Our kitchen full of frozen Lean Cuisine entrees, Slim Fast bars and diet soda was no longer of any use to us. Luckily we had some apples in the fridge. So that became lunch. Literally, we each took just an apple because that was the only acceptable, REAL food that we had in our kitchen! The rest was processed crap that had been created in a lab somewhere for all we knew.
The next night, we started purging our kitchen of all of the junk, and we headed to our local health food store in search of some whole, natural foods. We had NO idea what we were doing, and we even thought the place smelled funny! We were definitely in a foreign land, but we learned as we went. Heck, we’re still learning today! And, while we do enjoy frequenting the health food stores, we have come to realize that we can find much of what we’re looking for right in the regular grocery store!
Without any hesitation, we switched “cold turkey” (not necessarily the method we’d recommend) away from the Standard American Diet that we’d been eating for so many years. And, yes, that meant no more soda!!! For 4 days, my hubby had the most awful headache (his pop of choice had been Diet Mt. Dew – – full of caffeine and Aspartame), and it took a few days for his body to adjust!
A couple weeks later, my hubby realized that he hadn’t had a headache since we changed our diet (well, except for that 4-day withdrawal, of course!). Prior to our dietary overhaul, he had headaches every day, which we had assumed were “sinus problems” – he took sinus meds and pain pills every 4 hours every day
before we changed our diet. Crazy, huh? He has never needed them since!
After reading that initial book by Kevin Trudeau, I read every book (and watched every documentary) about food that I could get my hands on. I started with the books that were referenced in Kevin Trudeau’s book. Then I moved on to the books referenced in those books, and so on. If our public library owns it, and it’s a book about food, then I can assure you I’ve read it cover to cover! And, if our library doesn’t own it, I probably now do!
The more I read about Aspartame (an artificial sweetener) and its link to headaches and migraines, the more I wondered if that is what had caused my hubby’s “sinus” headaches. After all, artificial sweeteners were in much of what we had been eating (Diet Mt. Dew, chewing gum, protein bars, and other sugar-free items, etc.). Conveniently, a friend of mine always had headaches every afternoon and she, too, drank diet soda every day. I recommended that she try giving up just her diet sodas and change nothing else in her diet. Her headaches completely disappeared within days. Unlike my hubby’s Diet Mt. Dew, this friend’s soda of choice (diet root beer) didn’t contain caffeine, so we could more easily attribute her pain relief to the elimination of artificial sweetener from her diet. She was amazed (and appalled), and so were we!
August 2007: SYMPTOMS GONE!
Just 3 months after adopting our new lifestyle, I realized that I was kind of bored with only working part-time. I decided to take on a second part-time job. Then, it dawned on me…wait a minute….I’m working 40+ hours per week again…and I’m doing fine! I COULDN’T BELIEVE IT! I asked my husband, “When is the last time you can recall me saying that I didn’t feel well or staying home on the weekends, etc.?” Well, it had been so long that neither of us could think of any examples. It was like I had gotten my life back bit by bit – like when you have a headache and then later you realize “Oh hey, I don’t have a headache anymore…wonder when that went away.”
My symptoms just resolved so gradually that we never really took notice. Of course, with Fibromyalgia, symptoms can often “come and go” and vary frequently, so we were kind of used to me feeling better or worse at different times and in different ways. Fibromyalgia symptoms often flare and recede. Well, my symptoms receded….and receded…and never came back. And it was the best day of my life when we came to that realization!
Did I ever have “Fibromyalgia” or is that a label I was tagged with because no one could figure out another explanation? Do I still have an “illness” but it’s just under control through dietary changes? Are some people just more sensitive to food additives than others? From what I’ve read, we all have individual biochemistries, so perhaps I’m low on Vitamin E….or Magnesium…or any number of other things that causes me to react more severely and acutely than some other folks? These are all questions to which I may never have answers, but there’s one thing I know for sure – as long as I avoid hidden additives and fake foods, I feel perfectly fine. And all the doctors could offer me through all those years was drug after drug in an attempt to patch me up with band-aids for each new ailment….and it didn’t work! Unfortunately, most docs are not trained in nutrition, let alone in the sneaky tactics of the food industry, so I’m sure they were doing the best they could with the knowledge they had. But this is why it is so important for folks with experiences like mine to speak out and spread this information!
Fall 2008: RELAPSE?
After living without any symptoms for more than a year, I was working as a nanny. I did most of the grocery shopping for the family because they had seen my recovery and become interested in avoiding food additives. I’d go to the store for them to ensure that their food was “clean.”
Much to my horror, I came home from work one day crying and headed straight for bed because, as I thought at the time, “my Fibromyalgia was back.” My chest/lung symptoms were back in full force! Arrgggh!! I was so devastated. My hubby reassured me telling me I’d be fine and that it had to have been something I had eaten. I scoffed at him because I pack my own lunch for work, and I had eaten everything that was “safe” – nothing out of the ordinary.
Later that night he pleaded, “Are you SURE you didn’t eat ANYTHING at work?” I gave it some thought and said, “Well sure, I ate some peanuts, but I bought those MYSELF for their family earlier this week, and the ingredients were totally safe – just peanuts!” He insisted that I double-check the next day at work. And there it was on the ingredients list….”monosodium glutamate” (MSG). I couldn’t BELIEVE it! Even though I was thoroughly convinced that my Fibromyalgia had been resolved through our lifestyle changes, it was VERY hard for me to believe that just inadvertently eating a handful of additive-filled peanuts could make me suffer so much! Needless to say, I was MAD!! I pretty much started on a crusade to inform as many people as I could about monosodium glutamate (which is hidden under dozens of names on food labels), artificial sweeteners and other additives.
So, how did this happen to me? When I inquired about the peanuts, I found out that the family had eaten through all of the peanuts that I had originally purchased, so the mother grabbed some at the same store. She bought the same brand, but a different variety. She accidentally purchased the “low sodium” version, but I didn’t even check the label when I ate them because I assumed it was the same jar I had purchased. When food companies reduce the amount of sodium in a product, they usually replace it with something else to flavor it. And that “something else” is almost always BAD NEWS (i.e., MSG disguised in one way or another).
Through the years, I’ve had a few other experiences like the one above. I got sick once from attempting to go out to eat and once from overdosing on cream cheese…which I hadn’t yet learned was a hidden MSG risk due to the guar gum it contains. Other than that, I’m completely FINE. In fact, I feel better/healthier/stronger than most people I know! Because Aspartame affects our nervous system in similar ways as MSG, I’m sure that ingredient didn’t do me any favors back in my “Fibromyalgia” days, either, since I was living on fake, “sugar-free,” Aspartame-laden versions of just about everything. But I’ve never re-tested or accidentally ingested artificial sweeteners to find out, and you couldn’t pay me to do so!
I am really upset about all of the garbage hidden in our food, and I work tirelessly to inform as many people as I can. Since 2008, I’ve been working directly with people to help them reduce the amount of additives in their diets. I’ve really gotten fired up because even folks who THINK they are eating well and who are putting tons of time, effort and money into lifestyle changes are STILL being hit with excitotoxins like MSG because they are often hidden on ingredients labels under the most benign sounding names (“natural flavor,” “spices,” etc.) or added to foods that you would assume are just ONE ingredient like peanuts and sour cream! After reading books on this topic by neuroscientist Dr. Russell Blaylock and others, I have come to realize how truly blessed I am to have happened upon this information because these additives can cause and/or aggravate a wide array of health conditions (e.g., headaches, migraines, low energy, insomnia, fertility issues, obesity, diabetes, heart disease, endocrine disorders, cancer, stroke, digestive disorders, eye diseases, degenerative brain disease – the list goes on and on!). From what I’ve read, some folks are even diagnosed with diseases like Lupus, MS, etc., and their symptoms improve or resolve when they successfully eliminate these additives from their diets.
My passion in life is to help people avoid additives in their food. Folks have such a hard time believing that these lifestyle changes can make such a difference, and they are so resistant to giving up their old ways, but I’ve never met a person who tried the dietary changes and didn’t feel better. There is garbage in our food that is making us sick, tired and overweight; and there’s nothing to gain by living in denial about it. We all deserve to look healthy, to feel good, and to have all of the energy we need to do everything we’d like to do. We “are what we eat,” so we must each take the time to become informed about what we are putting into our bodies!
As you’ve just read, I took my health into my own hands. I read every book and article I could get my hands on. I scoured cookbooks and recipe websites in search of meals that contained no chemical ingredients; and I spent countless hours in my kitchen “experimenting” until I learned how to cook – and, yes, sometimes the results weren’t all that edible. I was also suffering with chronic pain, fatigue and other debilitating symptoms at the time, so there is certainly nothing special about me that magically made this transition easy for me. It’s just a decision that each person must make for themselves to do whatever it takes.
The answers are out there for any of us who go looking – and, in my case, the answer was FREE! I checked out books from the library, and I did research online. I didn’t pay to consult with anyone or to have a chef train me to cook. I just stopped allowing foods with mysterious ingredients into my cart. Then I looked at which food options were still available to me, and I stumbled around the kitchen to try to make something from them. It wasn’t the smoothest transition, but the rewards were great!
In 2010, I started my blog at CompletelyNourished.com to help share what I have learned about the health effects of the additives lurking in our food supply. I have written hundreds of blog posts here to help you get started with reducing your reliance on processed foods. Please visit my main page and scroll down to read the many articles I’ve posted here. You can also view my posts by category (e.g., “ingredient warnings” or “recipes”) by scrolling down a bit in the right-hand column of my main page. You can also subscribe to my blog in the upper left corner of any page (or at the end of this post if you’re using a mobile version of this site), so you will receive FREE updates via email whenever I post a new article, video or recipe here!
If you would like more assistance or a “jump start” for your transition, you may be interested in the Natural Foods Cookbook & Grocery Guide that I created or the many recipes and natural living tips here on my blog.
Educating folks about natural foods was never a goal of mine in life. Back when I was ill, I had no idea how to even cook! My mom still shakes her head in awe every time she comes to dinner these days! It’s all just evolved out of my need to save others from enduring what I went through. I knew nothing about posting blogs, running websites or creating recipes. I just knew that I HAD to do SOMETHING!
Even after all that I’ve been through, I am not someone who has something against medical doctors or the drug companies. I believe firmly that the medical community serves a very important role and saves countless lives everyday. But now I also realize how important it is for each of us to take an active role in maximizing our own health and wellness; and it is my mission in life to help folks do just that.
It tears me up to think about all of the people who are needlessly suffering (as I was) because of chemical-laden diets and lifestyles – not to mention the time and money that is wasted on medical diagnostics, drugs and procedures in situations where simple lifestyle changes would suffice. I am fired up about this, and I have no choice – I feel a strong moral obligation to do as much as I can to change the way folks approach their health! And there is truly nothing more fulfilling for me than to help people make these changes! I hope you enjoy and benefit from all of the recipes and information I’ve made available here at CompletelyNourished.com! Oh, and be sure to email subscribe to this blog for FREE updates from us about how to stay naturally healthy and happy!
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Have you regained your health through natural dietary and lifestyle changes? If you’d like to share your journey with our “Completely Nourished” audience, please contact us for submission details. You never know how many people your information may help!