My Search for the Truth about Fibromyalgia
DOCTOR AFTER DOCTOR, PILL UPON PILL. YEAR AFTER YEAR. MY SEARCH FOR THE TRUTH ABOUT FIBROMYALGIA FINALLY BROUGHT ME A SOLUTION AND RELIEF FROM MY PAIN.
Could I have Fibromyalgia?
One day at the office about 6 years ago I was signing paychecks that I had just printed. I only had 5 or 6 of them to sign, but I found that I was in so much pain that I couldn’t continue. I was in tears at my desk. I had to have some sort of relief from the pain that had been present at a high level for years, but had finally become so intense that I could no longer bear it. Although I didn’t know it yet, this began my search for the truth about Fibromyalgia.
I was a small business owner and had tons of stress and responsibility. My life at home at the time was unsatisfactory; so, I attributed the pain and exhaustion I was feeling to stress. That seemed logical.
That day I called my mother who had a rather large stash of pills from numerous surgeries. She gave me a few of something to ease my pain and I made an appointment to see the doctor the next day.
My General Practitioner
At my appointment, my doctor who was a general practitioner, did the usual cursory exam – eyes, ears, nose, throat, heart, lungs, and basic blood work (CBC). He declared me perfectly healthy. No signs of infection, clear chest, eyes, ears, and throat all normal. He said it was probably due to the stress I had been under and suggested I rest. (Um, sure. I’ll just stop working and everything will be fine.) Taking off work was not an option.
Time passed and I was still as bad off as I had been on that day. I went back to the same doctor and insisted that there was something wrong. Stress alone was not an acceptable reason for the degree of pain I was feeling. Without a doubt, it was contributing, but that was not the whole picture.
This time the doctor said he thought it might be Fibromyalgia since the pain was so severe over such a long period of time. I had a number of other symptoms like chronic fatigue and insomnia. He questioned me about depression, but I wasn’t depressed. I was just exhausted.
My doctor asked me if I had ever had a traumatic injury. I had once fallen into a door facing in kindergarten and had to have 5 stitches in my forehead. He said that it is believed that traumatic injuries cause Fibromyalgia, and that I showed evidence of Fibromyalgia causes and symptoms.
Between the chronic pain and the insomnia, which was worsened by the now much more intensified pain, I had no energy. I could barely drag myself out of bed in the morning and I had a business to run. I did not have time for this. Could it be that I had fibromyalgia? Without a doubt, my symptoms are symptoms of Fibromyalgia syndrome.
I was referred to a rheumatologist. Nice guy. Coincidentally, we had attended high school and college together. He was very concerned with helping me, and he ran all of the common tests for rheumatologic disorders like lupus, Lyme disease, arthritis, vasculitis, scleroderma, etc. Again, everything was normal. Sigh. How could everything be so “normal” on tests, but I was in so much pain?
The doctor believed I was in pain even though the tests all came back negative, and “confirmed” the Fibromyalgia diagnosis by process of elimination of other known causes of similar symptoms – lupus, arthritis, etc. He said that I had all the Fibromyalgia signs and symptoms. He prescribed a drug for epilepsy known as Lyrica. I took it out of desperation.
After adjusting to the weird side effects of Lyrica, which included some mild dizziness and not realizing what speed I was driving (everyone just seemed to be driving so slowly), I seemed to get quite a lot of relief from the agony I was enduring. I was so happy to be out of most of the pain. Although I still didn’t know the truth about Fibromyalgia, I was at least able to function.
Then, the swelling began.
Lyrica appears to work by calming nerves that are associated with pain and seizures, but it also has the nasty side effect of causing swelling. Another trip back to the doctor and he prescribed Lasix, a diuretic, to help with the swelling. So, I was in less pain, but at what cost? I was now chasing one medication with another (which is what led to my mother’s death), and no one could tell me why I was in so much pain in the first place.
I decided to switch doctors.
The Fibromyalgia Specialist
I’m from the South where there are not a lot of specialty doctors. Not that there aren’t good doctors, but if you want someone who specializes in something a bit out of the ordinary, you are SOL.
Fortunately, at the time there was all of one doctor who specialized in Fibromyalgia. I began seeing him, hoping for answers and to find out the truth about fibromyalgia. He was also a wonderful doctor who cared about my pain and wanted to help. He also said I showed the exact symptoms of Fibromyalgia in women. Fibromyalgia is far more prevalent among women that men.
He switched me over to several different medications over the course of about a year, including Cymbalta and Savella. I refused to try Paxil because a doctor had put me on it years back and I had such severe shock sensations even when tapering off of it slowly, that I flatly refused it. The Cymbalta and Savella caused a lot of weight gain and severe nausea, respectively.
Eventually, the Fibro specialist put me back on Lyrica, which was less effective for some reason, so he added Nucynta, a pain killer, and Flexeril, a muscle relaxer, to my regimen. Again, I was thankful for a doctor who didn’t think it was all in my head, but instead of trying to figure out what was actually wrong, I was given more medication. Now I was taking four to control my severe Fibromyalgia symptoms.
The Fibromyalgia specialist retired soon after I began seeing him and I tried to find another doctor, but couldn’t. No one else treated Fibro as a specialty.
The Search for Other Specialists
By this time I had been doing a lot of reading and thought that perhaps my condition was neurological, but when I tried to get an appointment with neurologists, I was told that they don’t treat Fibromyalgia patients and that I should see a rheumatologist. That is where I started and there were no answers, so I kept looking. I desperately wanted to know the truth about fibromyalgia. Why was I suffering for no apparent reason?
Literally at every specialty doctor I tried to call, as soon as I told them the reason I wanted to be seen was to find out what was causing my Fibromyalgia, I was told that so-and-so doesn’t see Fibro patients. I later learned this is largely because Fibro patients are seen as pill-seekers.
The great irony is that the reason I was calling the specialists in the first place was to get OFF of the pills. I even told them that when I called, but they didn’t care. No one seemed to care and I felt totally helpless to help myself. It was a very lonely place to be – in pain for no reason with no one who would help me and an ever-increasing pile of medications to put in my body. I was slowly becoming my mother – chasing one pill after another – until I died.
I started lying when I called to make appointments with doctors. It was the only way I could get seen. I felt bad about it, but it was the only way I could get in the door. I got the tests I wanted run, but still everything came back normal.
My New General Practitioner
At last resort, I switched to a new GP hoping that he might give me another idea of where to look for answers. He was also a good doctor and was very nice, but he thought it best for me to go to a pain clinic since the dosage of pain medication I was taking was so high. He just wasn’t comfortable prescribing that much medication – and I can’t blame him because it was a lot.
The Pain Clinic
The pain clinic was an experience. Most of the time I met with a Physician’s Assistant, who was pleasant, but on my first visit I met with the doctor. He was also a good doctor and I did get some pointers about correcting my posture, which was also adding to my pain. There is a weird aura around pain clinics – you are pretty much assumed to be an addict when you come in the door. Be ready to pee in a cup – often. I get that, but it’s still pretty insulting when you are looking for an answer rather than a script.
I had pretty much given up hope. My incessant research of everything to be found in the medical literature to complete hearsay on the Internet never got me anywhere. I had seen so many doctors and had so many tests run, all of which came back as normal, that I was starting to believe that maybe the original diagnosis of it being a stress-related illness was correct. I didn’t want to believe it, but the evidence was showing nothing wrong. I was still no closer to finding out the truth about fibromyalgia.
One day it occurred to me that I might have a deficiency instead of a disease or illness. So, I started researching supplements – vitamins, minerals, and herbs. I spent a lot of money on them and had a huge basket in which I kept them all. I had to get a large pill organizer to help cut down on the time it took to get them all out each time.
I did have some success with supplements. I found that magnesium citrate really helped with the pain. Of course, it initially gave me the runs, but my body adjusted. B vitamins and D3 also seemed to provide some relief. It was helping, but it was clear that whatever was causing the pain was still there.
5-HTP also provided help with sleep. Since I have chronic insomnia and sleep-deprivation makes pain worse, this was a tremendous help. The other supplement that I found worthwhile was Ubiquinol, which helped with fatigue.
I felt fortunate that I found things that helped, but I still hadn’t found the cause of my pain.
Learning to Cook, Again
After half an hour of searching for things to eat at the store, I had about 3 items in my cart. I was quickly realizing that processed food was no longer an option because there were so many ingredients that anything processed was bound to have something I couldn’t eat. I had to start cooking for myself using whole foods – as in from scratch. Ugh. I didn’t have time for that, but I had to eat something.
So, I learned to buy and cook whole foods while avoiding the foods to which I was allergic. At first it was a pain. I had to search for recipes and then often make substitutions which sometimes worked and sometimes didn’t, but in the end, I really started to get into it – even with my crazy schedule being a business owner.
The key was that I had to learn to plan ahead. I found recipes, went shopping, planned time to cook as if it were an appointment, and then cooked enough for several meals. I froze much of it – sauces are great for this purpose because you can just thaw them and throw them over veggies, pasta, or zucchini noodles.
Freedom from Pain
After about three weeks of cooking meals made from whole foods and avoiding the foods to which I was allergic, I started to feel so good that I no longer required constant pain medication. I might take a Nucynta once or twice a week, and maybe a Flexeril here and there, but for the most part, I was feeling better than I had in at least a decade.
Could it be so simple? Surely not. That was too easy. How did so many doctors miss this?
I wasn’t entirely out of pain, so I called up my allergist and discussed doing more food testing. She told me to wait a few months and then she would do it. So, over the course of the next several months, I made lists of foods that I ate and when the appointment time came, she tested me for as many of those foods as they had serum.
Sure enough, there were even more foods. We repeated the skin prick test for a final set of foods 6 months later, but did not get many positive results, so she finally sent me for a blood test. If you are considering this option, be sure your insurance covers it – it ain’t cheap!
Blood tests for allergies are conclusive. Either you produce an allergic response or you don’t. Turns out, corn and rice were false positives (yay!), but black beans had been a false negative (boo-hiss). So much for my soon-to-be-famous black bean and habañero soup I had been refining.
So, in the end, it turned out that my truth about “Fibromyalgia” was pretty much just food allergies. I am still not 100% pain free, but I am so much better. Personally, I think that the current research in neurology regarding Fibromyalgia is going to be very beneficial.
I think that my nervous system is far more sensitive than most people. Small stimuli like having a fan blow on me or that sensation of the water hitting my body when just stepping into the shower are very unpleasant. Those sensations used to be extremely painful. Yes, just having a fan blow on me could bring me to tears.
If I had to guess – and this is a pure guess not rooted in any scientific anything that I have read – I would say that the long-term exposure to the foods to which I am allergic caused hypersensitivity in my nervous system. I never felt well growing up. I never knew what was wrong. Could that have been the early symptoms of fibromyalgia? Looking back, I think it was the food allergies that were just not as severe as they became when I was in my 30’s.
I Have Come a Very Long Way
Shortly after the initial food allergy diagnosis, I took up cycling and could do 60-70 mile rides. I commonly rode 35-45 miles several times a week. That’s definitely something for someone who could barely get out of bed in the morning.
I did alter a few other things about my diet once I realized how much of a difference diet made to my health. Probably the biggest thing was I quit eating sugar – or anything that contained sugar, and I cut way back on anything that was a simple carbohydrate like regular pasta, potatoes, and white rice.
With all of these changes to my diet, I not only felt better, but I started to lose weight – quickly. I dropped 20 lbs in a matter of a few months. The crazy thing was that I was eating far more than I used to. I also ate quite a bit of raw fruits and vegetables and started juicing.
If you are reading this and you have had a Fibro diagnosis, or if you are wondering “are my symptoms Fibromyalgia?” don’t give up. Get tested for food allergies and vitamin/mineral deficiencies. Take supplements like D3, magnesium, and B vitamins. Cut out ALL sugar and processed food (this one is tough, but it gets easier. Just do a little at a time.) Most importantly, keep searching for the truth about what is causing your fibromyalgia. Your truth about Fibromyalgia is out there.
Edit: I still have not stopped researching this bizarre phenomenon of food allergies causing “fibromyalgia.” I just ran across this study listed on the National Institutes of Health website.
Then, one day Spring arrived and my seasonal allergies were really getting bad. I had developed allergies quite suddenly in college when I arrived back in the US after a year abroad. I didn’t have itchy eyes or a runny nose. I had a congested nose and general malaise.
I began taking allergy shots and got to feeling better. But, a year later, I started traveling again and continued to do so for the better part of a decade. Allergy shots were just not feasible and I forgot all about them.
When I called to make the appointment at the allergist, I found that my previous doctor had retired and that there was quite a wait (as in past allergy season) for most of their long-standing physicians. However, if I were willing to take the first available doctor, they could put me with someone new and I could be seen pretty soon. I said that would be fine.
When I showed up for my appointment, I signed in, still not even aware of what doctor I would be seeing and was shown back to the exam room. A short while later, the door opened and it was a lady with whom I had attended junior high school many moons ago. (I know – a second doctor who went to school with me!) We weren’t really friends at the time, but we had a couple of classes together and were both pretty nerdy – so I guess we bonded on some sort of social outcast level.
After briefly catching up, she started asking me about my allergies. She was very thorough and it took quite a while. As she was jotting down notes, I vaguely recalled something I had read on the Internet a couple of years prior about someone who had food allergies that turned out to be the cause of their “Fibro.” I mentioned this to her and asked if she would mind testing me extensively for food allergies.
To be honest, she was rather hesitant. She informed me that food allergy skin testing is a very unreliable method and that there were commonly false positives and false negatives. I told her that I understood and that what I read was not scientific – it was anecdotal, but that I was desperate for an answer. I was miserable all of the time, was taking tons of meds, I had gained at least 25 pounds both from medical side effects and my inability to do any activity because of pain.
I explained to her that I just had find out the truth about fibromyalgia, no matter how unreliable the tests may be. I said that although I showed all the signs and symptoms of Fibromyalgia, I needed to know WHY I felt this way and that I was not content with this so-called “diagnosis.” So far, I had nothing to go on. Anything would be of help.
Finding Out the First Truth About My Fibromyalgia
After a great deal of begging, my allergist finally consented and I was tested for a fairly wide range of food. To say I was in agony while the skin pricks reacted was a bit of an understatement. When the allergist returned to read the test it was clear why. Not only did I have severe reactions to pretty much every plant and mold in the state, but I had fairly large number of foods that reacted.
She reminded me that these could be false positives, but I was thankful that at least I had something that finally, after years of searching, wasn’t “normal.” I wasn’t sure if this was The Answer, but it was something. I felt like I was getting closer to the truth about Fibromyalgia – at least my truth about fibromyalgia.
Cleaning My Pantry
I immediately went home with my list of foods to which I was allergic and began reading every single label. Among many other foods, I was allergic to tomatoes, corn, and rice. You’d be surprised at how many foods contain just these items. Additionally, I was allergic to milk and eggs. That made it even tougher. Seriously, if you want to humor yourself, go try to find one item in your own pantry that doesn’t contain at least one of those items.
I made two piles of food. One was unopened, non-perishable food that I gave to a food bank. The other was perishable and opened food that I gave away to friends and family.
And then I went to make myself something to eat. I owned nothing. Aside from the mustard and soy sauce in the fridge, there wasn’t much of anything left.
“No problem,” I thought. I’ll just run to the store. Um. Yeah. About that…
The effort was great, but worth it in the end. Cleaning up my diet was truly a miracle.
In 3 weeks I was off of my meds. (Caution: Many people experience strong withdrawals from the medications that are given for fibro. Stopping any medication should be done under the supervision of your doctor.)
That being said, my body was happier off the meds than on them. I felt alive again – so much so that I took up exercising, something that I could not have done prior due to pain and constant exhaustion.
Follow-Up from My Allergist
The appointments with my allergist where I found out I had food allergies happened in the spring when my seasonal allergies had flared. A few months later, I got a call from my allergist to find out how I was getting along.
I had to stop what I was doing to take her call.
“Hello?” I answered.
“Hi, Shannon. This is Dr. Lu. It’s been a few months since I last saw you, and I know you were going to make some changes to your diet. I just wanted to find out how you were doing,” she said.
“Dr. Lu,” I began. “You won’t believe where you caught me today. I am currently on a bike ride headed out of town – and my bike computer tells me I’m 35 miles out so far. I’m still heading away from town. If I turn back now, that will be a 70 mile ride. When I came to see you back in the Spring, I was barely functional and on a bag full of meds every day. I want to thank you so much for taking the time to listen and for helping to figure out my problem. I was ignored or dismissed by so many doctors, but you listened and you tried to help. You have changed my life.”
It Wasn’t the Whole Answer – But We Were on the Right Track
A couple of years passed, and I was in great health. I was in shape, and I felt amazing, physically.
Emotionally, life was a very different story. I found myself in a relationship with a horrible narcissist who made my daily life a living hell.
I ended up getting out of that relationship and taking some time for myself – a couple of years, in fact. I was doing my best to mentally recover from that fiasco, and then my dogs got old and sick and had to be put down – one in 2016, and the other in 2017. They were my life, what put a smile on my face every day.
The last few months of each of their lives were so hard for me. Parting with them was like having part of my soul ripped out, but it had to happen. I knew that. They had been my emotional stabilizers.
Now I had none.
A few months before my second dog passed, my stomach was giving me fits. Every time I would eat – it would blow me up like a huge balloon. It didn’t seem to matter what I ate.
The pain was excruciating. There was no way to get relief.
I consulted a gastroenterologist who told me he was sure it was my gallbladder. I had told him I thought it might be SIBO, or Small Intestinal Bacterial Overgrowth. I had researched the symptoms and found that while my gut seemed to react to everything, that there were some foods that made me have extreme reactions. They weren’t fatty or fried foods as is typical with gall bladder attacks. They were things that contained certain carbs.
The doc sent me for imaging, and as it turned out, my gallbladder was fine – just like I suspected.
I found another doctor – well a PA, rather. He took note of my symptoms, but I never suggested that it might be SIBO, since the other doc had rolled his eyes when I suggested it. This guy surprised me.
“Have you ever heard of something called SIBO?” he asked.
“Actually, yes. Yes, I have. Truth be told, that is why I’m here. My last doctor dismissed the idea, but I’ve been on an elimination diet that does seem to improve the symptoms somewhat.”
“Well,” he said, “Let’s get you tested.”
A week or so later, I was getting a test to see if I had SIBO – and it was positive.
ALAS! I had an answer. For a mere $1700, I could have the antibiotics that could help the problem. Ugh!
It needed to happen, so I got the antibiotics and took them. I got significantly better.
But, that still wasn’t the end of the story.
New City, Worse Symptoms, and FINALLY a Real Diagnosis
Shortly after all of that happened, I ended up moving to a new city, starting a new business, and enjoyed the brief relief from (hopefully) curing my SIBO.
Fast forward to the beginning of the COVID pandemic. I accidentally ended up in ketosis due to symptoms that had slowly crept back in over the previous 2 years since making my SIBO better.
Since my business had been shut down (along with almost everyone else in my state), I had some free time on my hands and decided to begin exercising. I started going on early morning walks before the sun was up over the horizon. This is when a new, and quite disturbing symptom occurred.
I noticed that despite the low and diffuse light from the early morning sun, wherever sunlight hit my skin it turned bright red. Being of a variety of ethnic backgrounds and having light brown skin that normally tans in minutes of sun exposure, having skin turn bright red was of serious concern.
I took pictures and video of my skin and took it to the functional medicine person that I had been seeing (without much luck up to that point). She never dismissed me or my claims of this invisible illness of sorts. She told me each time the tests would come back normal to return when I had more symptoms to test for, so I did.
When I showed her the pics and videos of my skin, she said, “This gives me an idea.”
More tests were ordered, and….(drumroll, please)…we FINALLY got a hit.
My histamine levels were THREE TIMES the high limit of normal. She repeated the tests several times along with others. The only other thing that seemed out of whack was that my Secretory IGA (a type of immune substance found in mucous membranes) was low. That could be indicative of certain cancers, but testing ruled that out.
Finally, once my practitioner had a handle on the big picture, she said the words that I had waited 15 very long years to hear: “I think I know what you actually have.”
My REAL Diagnosis
“WHAT IS IT?!?!?” I replied anxiously.
“I think you have something called Mast Cell Activation Syndrome,” she said calmly. I had never heard of it before.
She told me she needed to refer me to an immunologist to confirm the diagnosis. That turned out to be an uphill battle due to a practitioner who had a lot of preconceived notions, not worth discussing here. However, in the end the immunologist asked me if we had ever discussed the possibility of me having a Mast Cell Disorder.
Rolling my eyes back into the back of my head as far as they would go, I reminded her as politely as I could that my functional medicine practitioner had suggested that 6 months prior and that I was there to have her suspicion confirmed or ruled out.
The same tests were repeated again, and my diagnosis was finally confirmed.
A Nugget of Wisdom for Fibro Sufferers
Mast Cell Disorders can present in a number of ways, and there are different types, including the far more serious diagnosis of mastocytosis. I strongly recommend reading the book “Never Bet Against Occam” by Dr. Lawrence Afrin (amazon ad link). You may find that in one of the chapters (all based on individual mast cell patients’ differing symptoms) that one matches you. It might give you clues on what you should ask for in blood work or urine tests.
Best of luck in your personal journey. Don’t ever give up hope.