Fibromyalgia + Sugar = Ouch

Let’s just get that red tape out of the way… This is my personal experience. I’m a no-longer-able-to-work-due-to-chronic-illness legal/compliance person, but by no means am I a health care professional, in any way.


If you or someone you know have been diagnosed with an unsolved mystery illness, like fibromyalgia (FM), you may have taken to Dr. Google looking for ways to make life better. You’ve likely come across many people claiming to have the cure, from juices, to supplements, to avoiding certain foods, and on and on. All I can say about that is please keep in mind that the cause and exact cure for FM, and many other mystery illnesses have not been found, so all of those ‘cures’ are more of what might work for one, but not necessarily for another. I don’t know why I’m adding that…if you’re here reading you already know that! 😊 So, what’s my point? Well, let’s get to it.

My FM back story:

My FM story goes way back to 2004. Basically, after a round of Cipro, I was diagnosed with FM. Am I saying don’t take Cipro or that it causes FM? No, no I’m not. (I will tell you that it has a black-box warning so buyer beware, and that there has a been a link between it and FM.)

A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug.

In all honesty, I didn’t take the FM diagnoses seriously. I thought, well I’m young, I’ll shake it off, and folks, I kinda did. I changed my diet, and exercise routine (more about that below). I payed close attention to where the pain came in and what caused heightened insomnia and then I tried to work around those things. This worked for an entire decade, until the day it didn’t. July 2014 I was plugging along, working full time, following a mixture of Mediterranean/keto/whole food diet, doing yoga daily, I’d just finished homeschooling my son through high school, I was walking 10 to 15 miles a week, things were busy but good, in other words the FM was under control. And then one day, almost five years ago now, I got what felt like the flu (approx. 144 symptoms deep) and it’s yet to go away. That was the onset of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (MECFS), but since we’re here to talk about FM, I’m going skip all that for now and just share below what helped me the most back when it was just FM.

Here’s how I held FM at bay:

Bye, Bye Caffeine…I know ouch! I did still drink a bit of green tea, but coffee, whew it caused my pain levels to go through the roof!

So long my first love, also known as sugar…Also ouch. I’m not going to go all scientist on you because frankly I no longer have the brain power. Let me just say this – sugar causes inflammation, lots of sugar can cause chronic inflammation, and fibromyalgia also causes inflammation so the two together are no Bueno. For me sugar causes extreme pain, keep-you-up-at-night writhing-in-bed pain. So, it had to go. Do I still treat myself? Yes. Do I pay for it? Also, yes.

I walked folks…Everyday, I walked and walked and walked. It doesn’t hurt that I love walking. It was my favorite hobby pre-MECFS. Something wonderful would happen to the pain when I was walking, it would let up and often until the next day.

And lastly, but most importantly, I stopped worrying and stressing about things I had no control over – definitely easier said than done. I’m a worrier by nature so yes, I still find myself ruminating here and there, probably always will, but I found a direct correlation between stress and FM pain. I have no idea why this was happening, but emotional stress was causing my body horrible pain. Let go of the stress, lighten up the pain. Got the message body, destress, no sugar, more walking.  

For 10 beautiful years those things worked. They kept me adulting the best I could. Sadly, with the onset of MECFS the walking took a huge hit. I remember two months after onset of MECFS I was put on a treadmill for a stress test. I lasted 50 seconds (just two months prior I had been walking miles and miles…barefoot on the beach). The Cardiologist noted in my chart that I was ‘deconditioned’. I was horrified at the time, but I now know this is common, I’m certainly far from the only one with MECFS who has deconditioned in their chart. I suddenly found myself without the ability to care for my FM as I once had and had to learn how to rearrange my life to continue on. A while back my therapist, who I primarily see to deal with the crappy things doctor’s do and say, said, “If you have to do literally nothing all day so that you can get outside at night (my best time of day) and take a few steps you do that because the health benefits are immeasurable”. So, I did that, I followed her advice and for my furkiddo’s last walk of the day I would try to tag along with whoever was walking him if I was at all able. What I didn’t know was how much this was helping with the pain. Which leads me to this year.

This year, as you know if you’re a regular around here, I lost my furkiddo to cancer. Which means the nightly mini walks stopped and as the heartache set in my pain levels went soaring. I tried to do what I could by eliminating sugar (I’d fallen off the wagon a little with regard to sugar). I thought if I cut the occasional sugar the pain would surely let up. As a Valentine’s gift to myself I practiced sugar-free February, but the pain just kept getting worse. By the end of the month it started to dawn on me, it wasn’t just the sugar. My body does its best when I’m doing all of those things (no sugar, no stress, and walking). I’d never stopped walking (even if only a teensy bit) since I had FM. Now I know. I have to do what I can because even though it doesn’t touch the MECFS pain, it does help the FM pain (I haven’t even mentioned the MECFS pain because that’s a whole different type of pain with its own triggers). I’m still coming to terms with the fact that I have two competing chronic illnesses, one (MECFS) that refuses to allow your body to reproduce enough new energy and makes you much sicker if you push it and the other (FM) begging you to expend energy. It seems rather unfair doesn’t it? I think so.

My final thoughts – When these illnesses are understood better, FM and MECFS, I believe millions of people will realize they’ve been misdiagnosed. My experience is that they are not the same, in fact the pain isn’t the same, the symptoms aren’t the same, the fatigue isn’t the same. I can’t tell you how many doctors don’t believe in MECFS and tell me I have severe FM. To all those people out there who have been told you have FM but you experience PEM (post exertional malaise – a worsening of symptoms after minimal physical or mental exertion, which can be delayed 24-72 hours or more) please be cautious. What worked for FM (exercise) doesn’t always work for MECFS, in fact it could be harmful, it was for me.

Thanks for stopping in today, my apologies that the post is kinda ‘Debbie downer’ but it’s my PSA from me to you. I know you could be doing absolutely anything with your day and you chose to check out what’s on my mind and I appreciate that and you! If you agree or disagree or would like to add absolutely anything I’d love to hear from you in the comments. Below are a few more of my doodles as I continue to follow along with World Watercolor Group prompts on IG. Wishing you a day filled with kindness. 🌸

 

 

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26 thoughts on “Fibromyalgia + Sugar = Ouch

  1. Fibromyalgia is such a weird illness, isn’t it? Not only do the things that work for some people living with it not work for others, the same things that help us at one time might not help at another. I’m so sorry you’ve been in so much pain Mishka. I’m sure the stress of losing your beloved Kaiser hasn’t helped at all; I know they don’t understand the exact role stress plays in FM and ME/CFS, but I believe there definitely is a link. I hope you’re able to find your new routine that works to reduce the pain and fatigue. As always, I loved seeing your artwork. As someone who has very recently taken up watercolor ( partly because of your beautiful work), I can appreciate it even more now. You’re so talented, and now I know just how hard it is to make those beautiful pieces of art. Sending hugs your way sweet friend!

    Liked by 1 person

    1. Thank you, Terri🌸 Everyday is a new opportunity to learn how to do better. I know that sounds silly but I really believe it to be true.

      You took up watercolor? I’d love to see! Do you post it anywhere? Oddly, the most helpful things I’ve seen are time-lapse videos of watercolor artists. You not only learn how the paint moves but they are incredibly relaxing. 😊 I’ve no art training so I’m kinda just hobbling along but it’s the best pain therapy. For those moments throughout the day where I’m doodling or painting, the pain gets put on the back burner. The added bonus is that I can do it all with lots of breaks, from bed so that’s what makes it possible. Enjoy!! I’d love to see how it’s coming along for you. There’s a group in Facebook called chronic creatives where people share all kinds of crafts, really neat group. Hoping today is kind to you 🌸

      Liked by 1 person

      1. Thanks so much Mishka! I don’t really post my stuff anywhere – most of it isn’t very good. I’ve used a couple of things I painted in my posts, but that’s about it. I’m really enjoying it so far, but there’s a lot bigger learning curve than I expected. I’ve watched a few videos and have a couple of books I’m using. It really is a great distraction from the pain, isn’t it? Hope your day is going well!

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  2. This is great information, and it really makes me realize the things I do (or don’t do) that exacerbate my own problems. My mom had the same problem with Cipro. Which she didn’t really connect until she started being examined for fibro.

    I’m so sorry about you pup, my friend 😔 I wasn’t sure what to say at the time I saw what he was going through. I know how hard that is when we depend on them so much. What a handsome boy in his pictures.

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    1. Thank you, Sam. I’m so sorry your mom had the same problem. I try not to be a conspiracy theorist with Cipro but I also try to share what I now know. In hopes that others can have healthy, active lives. A nurse actually told me about the black box and the connection soooo they do know.

      And thank you for your kindness about my Kaiser. Don’t feel badly, there are no words. I can’t tell you how many times I’ve intended on writing condolence messages to people but then end up not because I know deep down my words won’t help ease that type of pain. As you know grief is a monster and you just have to get through it. He was a handsome guy, people would take his picture when he was younger and we’d be out. Hoping all is well with you and your littles. Spring is just around the corner!

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      1. I think in matters of health you have to have an opened eye and risk being a conspiracy theorist of sorts. To some degree. My mom always assumed if a side effect was there that she would be the exception who experienced it. I feel like extreme hypochondria got in her way of getting the help she needed the last 10 years of her life. But even though she didn’t do nearly enough to help herself, I do know there were things she was right about, too!!

        Awe 😢 I can definitely understand people wanting his picture! It’s so true, words don’t help much per se, just know I do understand as so many of us do, and that you are supported 😔😔😔

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      2. I feel so badly for your mom, and you having to watch someone you care for suffer. I’m wondering if she might have had mast cell activation syndrome. It can make people look like they’re hypochondriacs but in fact they’re experiencing side effects of everything. It’s suspected I have some form of it. Even vitamins give me extreme side effects. Ones that actually are visual, like fevers and vertigo. Anyway, just thought I’d totally overshare there.😊

        And thank you for your kindness about my furbaby. He was my best bud.

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      3. I tended to believe experiences she had with things she *actually* took. She may have had trouble with what you’re describing 🤔🤔🤔 But so, so often she would never try something and swear it off. When it could have helped her with lupus symptoms, etc. After her stroke the doctors would ask what she *wasnt* allergic to. I said I dont think shes allergic to anything. They said she had a long list of allergies in her chart over the years to dozens of things. She could no longer speak, but I had to be honest and tell them she had never had any reaction. They treated her infections and depreasion with heavy, heavy stuff that worked and didn’t cause a problem. Things she claimed to be allergic to that could have helped her when she was able bodied 😔

        Are there other posts back in your page about your puppy? I’d like to read more about him.

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      4. I really am sorry, Sam. My mom had a variety of health problems too and I know how it feels to experience the decline. It sounds like you advocated for her the best you could, in the end that counts for a lot. It’s heartbreaking, there are no two ways about it.

        In answer to your question, I believe I only wrote one other post about my Kaiser. I don’t know how to attach a fancy link so here’s the actual link. It’s not really about him, more about the benefits of having a pet when chronically ill, but he does get a shout out in it. 🙂 Truthfully, had I known I would have gotten sick I’d never have gotten a large breed dog. I could no longer walk him or care for him as he deserved and had to rely on everyone else at home to get things done. Some things you can’t predict though. He didn’t seem to mind and in fact ramped up on his protection when he could sense that I was no longer as able bodied. https://wordpress.com/post/craftschronicillnessandadulting.wordpress.com/2582 Hoping Spring is arriving in your neck of the woods!

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      5. Seeing your name reminded me that I got backed up on my responses 😢 I’m trying to link to the post with your pooch and it keeps taking me to a page to write a new post 😔 If you remember the name of it I can look it up that way.

        Liked by 1 person

  3. Lisa

    I’m at the beginning of my watercolor journey as well as recently being diagnosed with Fibromyalgia. Thank you so much for sharing your journey and your artwork. I’ve learned at lot from your posts. Real life stories are always so much more helpful than books and the internet. We’re all so different in the way our bodies handle stress and pain. I wish you well and thanks again for sharing !

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  4. Hi Mishka,
    Stress affects the chronically ill body by placing extra load on an already majorly overtaxed & overwhelmed system.
    You may find my post https://teawithjennifer.blog/2018/09/23/knowing-your-bodys-capacity/ interesting.

    Stress literally pushes our bodies over the edge! That’s why our bodies crash & feel like their burning in a never ending furnace of fatigue.
    It not only happens to me with FM. It also happens to my husband who has chronic arthritis. Again interesting!

    Love your watercolors! Especially the tea cup! 😉
    Blessings,
    Jennifer

    Liked by 1 person

    1. Thank you, Jennifer! I love when you share your knowledge here. 🌸 It’s so helpful. Hoping you and your hubbie have as pain-free as possible of a day. 💕 I’m spending the day with vertigo today. I really wish it’d leave…it was not invited!! Hopefully it’ll get the hint soon and hit the road 😉

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  5. FM and ME/CFS are very much competing illnesses! It doesn’t entirely surprise me that you developed FM after a round of Cipro. It is known to have effects on the ligaments and joints after long term use. So it makes some sort of sense that it could trigger related pain in those with a predisposition. Not that I’m saying everyone who goes on Cipro will develop it, or that no one should take it – just that it’s very possible we have some sort of predisposition to these conditions which any kind of trigger (meds included) could set off.

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  6. Such a helpful post. Especially with you having suffered with both illnesses. Like you say it’s hard when Fibro and ME/CFS both require different things, especially when it comes to exercise! I have a primary diagnosis of ME/CFS but with secondary Fibromyalgia – apparently! So I “treat” myself from an ME side of things, but try and stretch/move my body a little too, when I can! I’m no good with sugar either! Causes all kinds of pain. I can manage dark chocolate though so grateful for that! 😊

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  7. You’ve made some really good points, not just about potential misdiagnosis but just how one thing doesn’t work for everyone. And how it can be a combination of things that make the difference, rather than just one, so it’s very much a case of trial and error. “What worked for FM (exercise) doesn’t always work for MECFS, in fact it could be harmful, it was for me.” – that’s also worth keeping in mind because there are so many suggestions out there and yet the line between ME and FM is so precarious, it’s hard to know which way you should be diagnosed and what’s best to try to help yourself with your symptoms. Thank you for sharing your experiences so candidly! 🙂
    Caz xxxx

    Liked by 1 person

    1. Thank you for stopping by and sharing your thoughts! It continues to concern me that doctors continue to tell me to exercise. Meanwhile lead MECFS researchers are saying please DO NOT exercise. Someday they’ll all get on the same page, hopefully that day is soon. In the meantime I’m thankful to have the knowledge to know what works best for me. Hoping the weekend treats you kindly 🌸

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