It’s been a decade since I became ill and was diagnosed with fibromyalgia. I spent the first two years barely existing. Getting out of bed was a struggle. Thankfully, I did find some answers that helped me recover and return to a mostly normal life.
My story of recovery from fibromyalgia
Don’t get me wrong, I still have bad days. I still have flares. I’m not cured of fibromyalgia, but I have recovered. This is my story of recovery from fibromyalgia. It’s my story of how I got my life back and started living again instead of spending all day on the couch unable to do anything but attempt to distract myself from the pain.
Most days now I feel fantastic, at least 90% better than I did during the worst of my illness. I doubt I’ll ever see 100% again for several reasons, not the least of which is that I’m just older and our abilities diminish as we age, while aches and pains tend to increase (even without a chronic illness as an issue).
My chronic illness story
I was diagnosed with fibromyalgia in May of 2010. Of course, that wasn’t really the beginning of the story. Nor, was fibromyalgia my first chronic illness.
When I was 15 I had mono, like many kids that age. I was in and out of school for the better part of a semester. I eventually recovered but throughout my teens and early 20s I found that I got strep throat easily. I also found that if I overdid it, didn’t get enough sleep, or just got stressed out my glands would swell and I’d feel fatigued. I referred to it as chronic mono (even though no doctor ever identified it) because that’s what it felt like. During these times it felt like the mono had returned.
Despite testing positive for Epstein Barr repeatedly through my teen years and early adulthood doctors stood by their line that you can’t get mono more than once and once it’s gone it’s gone. It wasn’t gone.
The first chronic illness I faced was anxiety. I don’t remember the year, but I was in my early 20’s (probably around 2000). I suddenly found I was struggling to eat without my stomach getting upset. Tests found nothing and eventually my doctor suggested that perhaps it was just stress. I didn’t understand. What did I have to be stressed about. I had an office job where I did almost nothing. I actually spent most days surfing the web. If anything, I was bored not stressed. But, evidently boredom is a source of stress for me because when I quit that job and started a new one the stomach problems went away.
Around 2003 or so, the anxiety and stress returned as I dealt with some challenges regarding my business. The treatment for the anxiety caused migraines that turned chronic. I’d had migraines my whole life, but this was the first time they’d been chronic. I eventually identified the source of my anxiety and once I dealt with I began to feel better.
In 2006, I went through a period of about six months when I had strep throat every two weeks. During that time I also tested positive for Epstein Barre again. Eventually I had my tonsils removed at the age of 30. I had a rough recovery from that surgery, but I was finally doing better, and felt pretty good for a while. I finally made it more than a year without getting strep throat!
In June of 2008 I began the process to get orthodontic braces. I’d had multiple orthodontists and dentists tell me that my teeth were over-crowded. Earlier in the year, I’d had gum grafting surgery, and I was told that without braces I’d have to go through that again. From the first step of having the spacers installed in my back teeth, I had massive headaches. I tried to accept what the orthodontist told me – that the pain was normal. “You’ll have pain because your teeth are moving”.
However, once the braces went on it just got worse and worse. I spent 2 months unable to do anything because the migraines were so bad. Each adjustment just made things worse. I was at the chiropractor three times a week getting adjustments and acupuncture, as that was the only thing that gave me any relief.
After three months and no real improvement I tried to explain to the orthodontist that this was not “normal” pain. He just ignored me. I sought out help elsewhere and found a wonderful Dentist in Nashville, Dr. H. Clifton Simmons (now deceased). He diagnosed me with TMJ. He suggested a treatment plan for TMJ and we went with it. The braces came off and we worked on getting my jaw back into alignment. Two years later I was back in braces and all went well.
However, in the midst of trying to understand why I was having so much pain from the braces, I developed some new issues. My stomach was on fire. I could barely eat anything without it burning and some days I couldn’t even manage water. My first thought was an ulcer (I’d been taking a LOT of NSAID pain meds and they can tear up your stomach). Initially, that seemed to be the answer, but that wasn’t all of it. In addition to an ulcer it turned out that my gallbladder was going back. It took four trip to the ER and a week in the hospital before they figured that out and removed it.
The Beginning of fibromyalgia
I’d finally recovered enough from all of that to feel like I could try to live normally again, so I went back to school. I made it through a semester and a half. Then in the spring of 2010 I got sick. It wasn’t much and I didn’t miss any classes. I just didn’t feel good. It felt like a mild flu, and I’d had it for a week before I even realized I’d been running a fever the whole time. Although the fever and general sickness went away, I never fully recovered. I couldn’t keep up with the three classes I was taking, so I dropped the hardest one.
Then, one morning, I woke up with both of my hands asleep (pins and needles). I commented about this to a friend and she begged me to get it checked out (it’s an early sign of MS and she has a family history of it).
Around the same time, I began having a sharp stabbing eye pain and vision loss. Just all the sudden my vision went wonky. I was getting halos on the streetlights and I couldn’t read the street signs from the same distance I had in the past. The eye pain felt like someone was stabbing me with an ice pick. I went to the Neurologist and he ran every test in the book and came back with nothing. I have a friend that ran a local Fibromyalgia support group and in talking to her I came to the conclusion that I may be dealing with Fibromyalgia.
I asked my GP about it and she admitted that I may be onto something. I also mentioned it to my Neuro and asked for a referral to a Rheumatologist. He gave it to me, and after I described what I’d been dealing with to the Rheumatologist he felt fairly sure that I was correct. My Neuro had already done every test that the Rheumatologist would have ran, so he just tried the pressure points and then referred me to his Nurse Practitioner (who handles all the Fibro patients for the entire practice). While I usually prefer to see a doctor, This NP knows more about Fibro than most doctors out there, so I was thankful for him.
However, it was no fast road to recovery. I was already on what was then the first line of treatment (anti-depressants and muscle relaxers) and they were doing nothing. Nurse Tim immediately sent me for water-based physical therapy, and changed my meds. We tried them all – various anti-depressants, Lyrica, Neurontin, Cymbalta, Savella, we tried them all. We went through them all and then some and I just seemed to get worse.
The summer of 2011 I fell into a terrible depression; to the point that I almost checked myself into the psych ward. That was my low point. I ended up seeing two Psychiatrists, who put me on other meds that caused bigger problems, landing myself in the ER with high BP. It was just one thing after another, and all the while my IBS was getting worse and worse, too.
The changes that lead to my recovery from fibromyalgia
By the end of 2011, I was frustrated and willing to try pretty much anything. I happened to watch the documentary “Fat, Sick & Nearly Dead” and saw the improvement he’d had thanks to a “simple” diet change. I’d started seeing a new GI doc who was sending me through, yet another, colonoscopy and testing me for Celiac and Gluten allergies, etc. He said he didn’t think food had anything to do with my IBS, or that changing my diet would help. I decided to get myself checked for food sensitivities, anyway.
Instead of waiting for the results I jumped in with a New Years Resolution. I started 2012 with a week-long juice “fast” and created my own “elimination diet”.
After a week of just juice, I started eating fruits and veggies, then added meat the next week and then the fourth week I went to stay with a friend whose family is gluten-free. Throughout it all, I kept juicing every day. I saw a difference in the first week; my energy was up and I was feeling better.
Over the next few months I continued to improve. And, by fall I felt ready to return to school. Through it all I continued to avoid Gluten, Dairy, Eggs, Wheat & Whey; all of which showed up on the food sensitivity test.
It’s been about eight years now since I made those diet changes and I’m still thankful every day. I’m not as strict now with my diet as I was the first few years. Through trial and error I know how each of those foods I cut affect me. Gluten and wheat are the ones most likely to leave me aching and fatigued. Although, since I’ve been off them for so long I can now eat them in very small amounts. It’s no longer an issue if I get cross-contaminated. But, if I eat something full of gluten I will still know it usually within hours when my stomach bloats up. The other offending foods typically only cause my IBS to flare up. I still do my best to avoid them all because I just feel better without them. Generally, I’d say that I still feel at least 90% better than I did during the worst of my illness.
It’s not been all wine and roses these last eight years. In 2013 I added endometriosis to my list of chronic illnesses (and I’ve since had three surgeries to remove the adhesions). I still have bad days. I still get migraines. I still have fibro flares sometimes leaving me feeling fatigued or aching all over. Thankfully, those flares rarely last longer than a day now because I’ve learned what to do to keep flares short.
Generally, I’m doing pretty well and I’m back to living. In 2015 I finished my undergrad degree (after way too many years). After a divorce in 2017, I sold my house in 2019 and bought an RV. Downsizing has helped reduce even more stress and now I can travel in my home. Changes will always come. Flares will always come. But, I’m going to do my best to live a happy and fulfilled life despite it all. That’s all any of us can do.
- The fibromyalgia treatments that have helped me most
- Balancing full-time RV travel life with chronic illness
- Controlling IBS with Probiotics and Stress Management
- Juicing for Fibromyalgia and Chronic Illness