Quick back story:

  • Last June my fibromyalgia pain was very high. I was taking cyclobenzaprine, a muscle relaxer, but it just wasn’t enough
  • My asthma was really bad. My peak flow meter was never higher than 250-300. And that was me just sitting down, relaxing. I would take large breaths, sigh or gasp for air a few times per day. My doctor put me on Proair, Fluticasone and Flovent. I used them religiously for two months. My asthma never got any better and my period disappeared
  • In October, I went to see a Fibromyalgia specialist at Rush University Medical Center. After a good hour of asking me questions and then checking my tender points (more information on that in a second), he proclaimed “Yup, you have FMS.” But when I asked him if his patients saw any improvements from taking Cymbalta or Lyrica (two drugs that I’ve seen a lot of advertising for) he said not really. I left his office fuming. And swore off doctors as a complete waste of my time

Fast forward to today. In January, I finally completed a Whole30. I noticed an overall improvement in my Fibro pain, although it wasn’t gone completely. Back in June, my pain was around an 8 most days, with 10+ days happening at least once a week. Since my Whole30, most days are around a 3 or 4, with 10+ days happening maybe once a month

So far, I’ve learned that my 10+ days are triggered from:

  • 4 to 5 days of bad eating. This can be from eating too much gluten, dairy and/or soy. Or even just fried or overly rich foods, especially at restaurants. I haven’t been able to pin point anything in particular. But after a few days I’ll notice my back muscles start to contract and the ache feeling comes back
  • Red wine and hard cider. This one was terrible. Right after my Whole30, I decided to celebrate with a small glass of red wine. After about 10 minutes I noticed my back tightening up. That night I woke up at 4am crying in pain. The following week I tried drinking Strongbow, a gluten-free hard cider. Same thing happened. Both times I had to take my Vicodine. I’m still unclear if it’s the sulfites (both have them) or histamines (which are found in a number of things, including tomatoes and spinach)
  • A few completely random things. Trader Joe’s Ginger Chews and a Chai Tea from a local place here in Chicago. Both gave me terrible fibromyalgia flare ups. The pain immediately ran down my arms and the muscles in my neck contracted. I have zero clue as to why

Anyway, on Monday I finally decided to try the doctor again, mainly because I wanted to get some allergy testing done. When I told my doctor that I was hitting a 450 on my peak flow after cutting out certain foods, even she was excited to find out why. So a few weeks ago, I went in and got an Immunoglobulin E test. I give a little blood, and the lab tests to see if my blood produces IgE when it comes into contact with certain foods.

Going in, I knew I was allergic to at least two things: dairy and soy. I’ve always been allergic to dairy, ever since I was little. Ice cream will immediately give me gas. Too much ice cream and I’m excusing myself to the bathroom. The soy allergy developed sometime last year. Any soy (milk, beans, sometimes even if my food just came into contact with it) will have me rushing to the bathroom followed by needing to put my head down because it gets so filled with liquid that a raging migraine starts.

So you can imagine my surprise and frustration when only two things came up on my results: Peanuts and tomatoes…

Two things that I’ve been eating for most of my life with absolutely zero reactions. My only thought is that the tomatoes, which contain histamines, are somehow related to the red wine and cider thing. I have no clue about the peanuts, but since they aren’t paleo, I don’t eat them anyway.

Well on Monday I came in to talk to my doctor about my results. And was a bit surprised at what she told me. Basically said that those tests are full of it and not to trust them. To trust my gut (no pun intended). If foods were causing negative reactions then I shouldn’t eat them, regardless of what the tests told me. She then confessed that she also tested negative for an allergy to gluten, but if she had any, she would be in the bathroom for the next 24 hours.

The other thing she did was check my tender points.  To be diagnosed with fibromyalgia, your doctor will press on 18 tender points as shown in the diagram below. You have fibromyalgia if  11 out of 18 cause pain when gently pressed on.

Fibromyalgia Tender Points

When the doctor at Rush pushed on my tender points, all 18 caused me to jump, wince or even yelp ow. Doctors still don’t know what causes these tender points, but they seem to be the same in all FMS patients.

Well something interesting happened on Monday. My doctor pushed on the upper six points just to double check. I had no reaction. I felt it, but it didn’t hurt. No jumping, no wincing. My doctor’s mouth nearly hit the floor. And then she got incredibly excited. She told me that this wasn’t something they taught her in med school. But that it was hard to deny what was right there. That I was controlling my pain just through my diet.

Now granted, there could be so many other things that are going on. It could be that I’ve also reduced my stress levels significantly within the last two years. I’ve been forcing myself to get more sleep, taking magnesium supplements before bed, and doing yoga once a week. But going to the doctor definitely made me feel like I’m on the right track to something.

4 thoughts on “Doctor Update: Fibromyalgia and Allergy Testing”

  1. I have also stopped 95% of my pain from FIBRO due to my diet. I follow Paleo/keto diet and it HAS made a deference!
    I believe you!! I also support your efforts to inform others with fibro how they too can change their lives! Thanks for your posts!

    1. Hi Susan. I’m so happy you are benefiting from the paleo diet as well! This is exactly why I wanted to start this blog. Because just changing the way I eat has made such a difference. I really want others out there to know there is something we can do instead of just suffering through the pain.

  2. How inspiring that you’re controlling your illness through nutrition alone. Good for you and your doctor for looking past tests to the data that really matters (how you feel). Side note: I, too, swear by magnesium supplements. Wouldn’t skip a day for anything!

    1. Hi Molly! Yeah I realized that I was going through the stages of grief when I discovered I had fibro. Isn’t that weird? Angry, denial, sadness etc etc. Finally at the end I realized I was tried of just suffering.
      Glad to hear that magnesium is helping you too! The biggest help for me is actually with my IBS. (sorry if that’s a bit TMI. lol). But seriously, it’s like clockwork 🙂

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