Fibromyalgia and Diabetes: Why Diabetes Feels Like Freedom

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fibromyalgia and diabetes

Type 1 diabetes is no picnic, sure, but type 1 diabetes has never gotten in my way. It’s made things harder, but it’s never completely stopped me from doing something I want to do. (Well, except for that career piloting a commercial jet and becoming a Navy Seal, but I’ve let that go.) With diabetes, I could teach 7 power-yoga classes a week, bench-press 190 pounds, win powerlifting competitions, jump repeatedly onto 2-foot boxes, and sprint with a 140 lbs. dragging behind me on an iron sled tied to my waist.

Diabetes was freedom. With discipline around nutrition and insulin doses, and endless learning around exercise physiology, anything was possible with diabetes. Anything. Type 1 diabetics have climbed Mt. Everest, completed Ironman races, cycled 100 miles, and won the Olympics.

But for the past four years, unbeknownst to me, I’ve been gradually developing fibromyalgia—and it’s nothing like diabetes. Fibromyalgia is a chronic disorder characterized by widespread pain in the joints, tendons and muscles, as well as low levels of serotonin, severe fatigue, sleep disturbances, headaches, and depression. Often treated with muscle relaxants and anti-depressants, it’s shown that removing gluten, dairy, caffeine, alcohol, and artificial sweeteners can be very helpful, too, in lessening symptoms.

My fibromyalgia symptoms started out as a pain in my left lower back four years ago, followed by sharp pain in my elbows, then my wrists and hands, and then my entire left leg started tingling and cramping (and hasn’t stopped since) in 2011. MRIs showed no injuries in my spine. Full-body nerve-testing (which is surprising painful, by the way, sort of like getting a tattoo) couldn’t find any pinched nerves either. Chiropractors, acupuncturists, and physical therapists all had their own creative theories and no solutions that offered any relief.

Everybody said I was fine—but I knew something wasn’t right. By 2013, my feet were cramping during short walks, my knees were throbbing and felt like they were swelling (but they’re weren’t). I felt like I had to pee every 20 minutes, but I didn’t. And my hands started cramping up within 10 minutes of writing—to the point that I couldn’t keep typing. And my neck—oh yes, I almost forgot—my neck muscles would lock up so tightly for no reason that it felt like someone had implanted metal stakes on each side. I’d narrowed my only option for exercise down to walking with my dogs, walking on the treadmill, and occasionally tai chi. Everything else hurt somewhere, sometimes even tai chi.

More full-body MRIs, blood tests, and more blood tests all proved that I didn’t have multiple sclerosis, rheumatoid arthritis (or any kind of arthritis), Lyme’s disease, or any other weird thing they could think of to test me for.

By January 2014, with a new prescription for muscle relaxants to help my hands and neck—and my new inability to sleep well through the night—I decided I would try a little weightlifting for the first time in a year. After a 45-minute average weightlifting workout with a little bit of pain in my joints (which I sternly ignored because I was so happy to be using my muscles intensely again) I thought, “Alright! I feel awesome…sort of!” (Well, yes, my wrists and elbows were aching but I ignored it for as long as I could—it was a better day for my joints, I guess.)

But I paid for it. Over the next four weeks I experienced what I know now was a “fibromyalgia flare-up.” Those 4 weeks varied between horrible sleepless nights, irrational crying, brain fog to the point of just wanting to stare at the TV or go back to bed, and feeling like I had a 103 degree fever even though I had no fever at all. (And yet somehow, I kept up with my work! I’m not sure how.)

It was a textbook fibromyalgia flare-up, all because of a 45-minute workout that “over-exerted” my muscles and triggered a flare-up. With fibromyalgia, my entire goal each day will be about managing my energy, being careful in how I use energy, avoiding/reducing any stress either physical or mental, and dealing with the on-going symptoms as well as I can while living life. (Looking back to the Spring of 2013, I realize I also had a milder flare-up after buying a new house and moving in.)

While I’ve known something was wrong for a long time, the official diagnosis of fibromyalgia this February 2014 was the start of a grieving process.  Because no matter how careful I am when moving or how stress-free I try to make my life, with fibromyalgia I cannot “overexert” myself in any way without paying the price with pain and flare-ups. The grieving process is for my life as an athlete.

I know I need to say goodbye to the idea of being the athlete I used to be, and goodbye to feeling powerful in my own muscles and bones. Goodbye to that awesome feeling of having my muscles pumped with blood, my heart beating through my chest, and that thrilling high of endorphins after an intense, grueling working. I need to accept even though there are days when my energy feels normal, and I would love to run sprints down the driveway and drop quickly for 50 push-ups…I cannot. I shouldn’t. In the words of my doctor, I could build my way up to the workout intensity of a grandmother.

Every time someone who hasn’t seen me in a while says, “Oh, you look so fit!” I can’t help but laugh at the fact that my loss of 35 pounds is the exact opposite. Sure I walk every day for over an hour and am much leaner than I used to be, but I “look” more fit because my competitive powerlifting muscle and bulk is gone. My athletic spirit.

Diabetes never took anything away from me. But fibromyalgia limits me. Stops me. Keeps me from doing things I love. I know now it’s likely I’ll never be able to hike a Vermont mountain again. I’ll never do deadlifts or power cleans or squats or box jumps.

And I hate to feel sorry for myself—I do. Being a pitiful victim never gets you far, and I don’t plan to grieve for long. But I know I need to grieve the loss of that athletic lifestyle, and continue to be thankful that this condition does not shorten my lifespan. In fact, it’s even motivated me to have super-tight control over my blood sugars, perhaps because it feels like I do have control over that, and somehow that eases the reality that I cannot control the fibromyalgia symptoms beyond taking them as they come and doing my best to prevent severe flare-ups.

There are far worse things to deal with than fibromyalgia—I know. Most people probably would look at me and think diabetes seems so much harder and scarier and more serious, because while diabetes is rather invisible, fibromyalgia is extremely invisible, to the point that some people don’t believe it’s real. And yet, the diabetes feels like freedom. Manageable with discipline, effort, and more effort. Diabetes feels like freedom. 

 

Ginger VieiraAuthor of “Your Diabetes Science Experiment” and “Emotional Eating with Diabetes,” Ginger Vieira has lived with Type 1 diabetes and Celiac disease since 1999. Today, she is a certified cognitive coach and diabetes coach at Living in Progress, creates diabetes video blogs for her YouTube Channeland creates regular freelance content for Diabetes Daily and other publications. In 2009 and 2010, Ginger set 15 records in drug-tested powerlifting with a 308 lb deadlift, 190 lb. bench press, and a 265 lb. squat. She lives in Vermont with two dogs and her fella.

 

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Comments (13)

  1. Becky J at

     
    Hav you looked into topical pain relief to fight fibro pain? It provides prescription strength pain relief without any pills or side effects. A family member of mine gets topical pain gels through a pharmacy in the midwest, A&R Pharmacy in Liberty, MO, and all he does is apply the gel whenever he’s in pain. He has had significant results since going this route and I highly recommend it for anyone struggling with pain and/or pills. I hope this helps!

  2. Sarah at

    Thanks for sharing, Ginger. about a month after I was diagnosed with T1D (at 25 years old, no less), I began experiencing pain similar to what you were describing. Tested for everything under the sun, my diagnoses ended up being Chronic Inflammatory Demyelinating Polyneuropathy. Not Fibromyalgia, but similar in its head-to-toe, unpredictable nature. I’m beyond impressed that you were able to work during your flare-up — I spent 12 months on medical leave because I couldn’t handle it. 

    I’ve never been one for self-help books, but the same pain specialist gave me one that helped with coping with chronic pain. It’s called Full Catastrophe Living, and it helped me change my approach to dealing with both my pain and my life overall. It was a valuable resource during a very difficult time for me, and if you’re so inclined, I’d recommend taking a look at it. 

    Living with chronic pain is incredibly difficult, especially if previously you’d never had to deal with it before. I wish you the best of luck.

  3. Jennifer Castaldo at

    Thank you for this article. My husband has Type II Diabetes and I have Fibromyalgia. Although it is a cruel hand to be dealt with not one but two serious diseases, you possess a unique perspective that helped me finally make my husband understand that my illness isn’t the same as his, therefore my limitations are far different. Convincing him – or anyone for that matter – that FMS has forced me, against my will, to completely change who I am has been in and of itself exhausting. He feels that I am somehow “lucky” because I don’t have a disease where I cannot consume pasta, desserts, soda, etc. While I’m sure you know all too well that that’s not correct, I’m betting you have thrown your hands up in frustration when understanding and empathy that may have existed with regard to the Diabetes comes to a screeching halt where the FMS is concerned. I, too, used to be quite active (albeit not nearly as athletic as you!) with hiking, spelunking, scuba diving, 4 days a week workouts, etc…FMS has reduced me to very short sessions of knitting…because even knitting too long can cause just as painful a flare up as taking a walk around the block.  Again – thank you. For writing this article, for being so brave and for how much you have helped me and I’m certain many others. Be well, take care of yourself, and know you’re not alone with your Fibromyalgia (and Diabetes) struggles, from  your pain to others’ misguided perceptions. And if my thoughts seem jumbled and disorganized, well, you know why! :) 

  4. Natalie ._c- at

    Oh, Ginger, it’s not like you didn’t already have enough to deal with. Managed properly, diabetes and celiac are not painful, but fibromyalgia most definitely IS. More stuff to pay attention to, and still, a flare-up can happen because of unforeseen, unavoidable stress or movement. I feel so bad for you. So the only words I can say are hang in there, and I’ll be holding you in the light! <3
     

  5. marie at

    Ginger,
    Hugs. I live with myasthenia gravis and diabetes. Diabetes came second for me. I do know what it is like to have your muscles and nerves not listen to you. Feeling like your own body betrayed you is hard. Grieving your old life takes time, and sometimes feeling sorry for yourself is part of the process. A lousy thing has happened. You have permission to feel lousy about it. If I can help you stand tall, you can find me on twitter: @cellobard

  6. Hi Ginger,
    First, I’m so sorry for your new challenge.  I’m curious … how was the diagnosis made and who did it?  I have a rheumatologist who says I have a form of ankylosing spondylitis … not sure though.  Many thanks and hugs … joanne

  7. MariFrance at

    I feel so bad for you! I enjoy your blogs and books so much! Hope you will soon find some help. Thank you for helping us with diabetes!

  8. JOANNE: Yes, after seeing neuro, multiple MRIs, ortho, and 2 rheumatologists, I was diagnosed with fibro because a) I did not have any of the traceable signs of things like ankylosing spondylitis and b) I have had 2 flare-ups that resemble precisely what firbo flare-up looks like. If you don’t like your current Rheumatologist, ask to see another!

    MARI FRANCE: Thank you for your kind words! Please know I am still living my life to the fullest, happily most days, with new limits :) Life goes on. But saying adios to my life as an athlete and comparing fibro to diabetes was a therapeutic writing process for me. Thank you for reading it! 

  9. Ginger, I’m so sorry to hear about your (newest) diagnosis and the effects it has and will have on your definition of yourself. I’m not sure what else to say, other than I’m thinking of you and that I am glad you wrote this piece.

  10. Katie Atkinson at

    Hi Ginger – so sorry about your fibro diagnosis.  I was diagnosed with fibromyalgia over 25 yrs ago, when it was rarely recognized as real, and had to educate many health professions about the reality of it.  I’ve got every fibro symptom there is.  In 2010, I was diagnosed with LADA…..needless to say, I cried and screamed, “what the fu**??  What else can go wrong with my body?”  I’ve learned to accept my fibro diagnosis, learned how to say ‘no’ to activities I knew would lead to a flare, etc.  My LADA diagnosis has been much harder for me to accept because it just seems to be something else that I have to learn about, and learn to manage.  Sometimes life can be just so exhausting and overwhelming it seems.  But I get through life as I have for the last 25 yrs with fibro……one day at a time, or if needed, one hr at a time…..and I celebrate and know Im blessed when I wake up to a new day each morning.  Fibro isn’t fatal; diabetes and the lowest lows, and the out of control highs, are truly more scary to me than any fibro flare could ever be.  Fibro frees me up to say ‘no’ and to self-advocate my need to be careful with my energy, sleep, pain levels, etc.  The unknown reason for lows and highs of LADA are the things that I fear the most.  Thank God for this site and the ADA; I have learned so much from the bloggers on this site and am so thankful for the people here who share their experiences.  I am an expert when it comes to fibro, so if you ever need to vent about fibro, feel free to message me.  

  11. Ginger Vieira at

    Katie! Thank you for sharing your fibro/LADA story!

  12. Desiree at

    Thank you so much for sharing your story. I have been a Type 1 Diabetic for 23 years and I started experiencing chronic pain in my lower back and legs. And it has spread to my hips, shoulders and hands. I’ve had every test done and with no diagnosis. Other than possible small fiber neuropathy and degenerative spondylosis. But the Doctors claimed those diagnosis would not cause that sort of pain. But reading your article has opened my eyes that I may be suffering from Fibro. May I ask what test do I need to request from my healthcare provider to get a proper diagnosis? The chronic pain is frustrating especially when you are trying to manage your diabetes with exercise.

  13. rekha at

    Good post….Fibromyalgia is the most common musculoskeletal condition after osteoarthritis. Fibromyalgia is a common and chronic disorder. When a health illness or condition is chronic it means it is long-lasting. visit our site for good tertments for Back Pain, Diabetes, Fibromyalgia, Thyroid. http://www.drbastomski.com/
     

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