As Thanksgiving approaches, what do y’all feel thankful for? I am NOT thankful for fibromyalgia, but I’m very thankful for the people in my life who love me. I’m also thankful for my sweet dogs who truly exemplify unconditional love, and that I can go to bed every night with a roof over my head and blankets to keep me warm.
Does anybody else have Raynaud’s Syndrome along with fibromyalgia? As the weather gets colder, I start turning blue and feeling like crap. If I run or walk for more than a half hour outside in the cold, several of my fingers turn plastic-y white and go numb. As I rewarm my hands, the pain is tingly and bad. Anyone else with a similar experience?
I’m not sure where rock-bottom is. I keep finding it, but then I find it again and realize I never actually found it before. I hate having fibromyalgia. I’m not a depressed person, but the constant pain and debilitation is making me feel extremely depressed. Working out is how I deal with stress. When I’m too sick with fibromyalgia symptoms to work out, I feel hopeless.
I’m so, so ready to have a more normal, active life. My lower back has been tied up in spasms for almost two weeks, and every time they seem to abate, they quickly return with more force. Sometime in the midst of the back spasms, I got sick with cold/flu-like crap, and the coughing has made my lower back feel like it might explode. I’ve been on oral steroids for four days and have had tons of cough syrup, ibuprofen, and chiropractic treatments. I was finally able to walk a few blocks very slowly last night after barely making it out of bed for days. I hate fibromyalgia.
After exhausting what I consider the final physical cure frontier—changing to a vegan diet—I feel stuck in a C-list movie about how much the body can make life suck. I’m still a big advocate for veganism. Despite living in hell at this moment with excruciating back spasms and flu-like symptoms, the vegan diet’s benefits are still obvious. My skin looks better than it has in years. My sweat doesn’t stink much when I exercise (although I haven’t exercised in awhile). I have regular bathroom habits. My neck has improved, and I’m sleeping regularly. From a nutritional standpoint, I feel like a million dollars.
I’m not sure what the end game is with fibromyalgia. No soccer? Dammit, but ok. No tennis, another dammit, but ok. But the modifications and concessions keep coming, and it feels like I’m down to almost nothing that I actually can do.
Since my low back went to hell, I’ve found my true breaking point. I thought I’d found it before, but I guess that’s the thing about fibromyalgia—it breaks you down so many times that it’s hard to tell when you really hit bottom.
Being an athlete is awesome. Having fibromyalgia is the opposite of awesome. The frustration of constant setbacks and feeling like I have to work twice as hard to get half as far is maddening.
I feel like a prisoner to my body today. I woke up around 1:30 this morning to terrible lower back spasms. I could barely get out of bed and had to shuffle painfully to the bathroom.
I’d had a slightly sore back yesterday, but fibromyalgia keeps me sore most days, so I didn’t pay much attention to it. I did a very light workout at the gym—no injury or noticeable aggravation there—but a few hours later, when I should’ve been sleeping peacefully, my back felt like someone held it in a vice grip.
Work was pretty miserable today, although my back loosened up a little bit from walking around. Ironically, I worked with students on proper body mechanics and safe patient transfer techniques. It was quite a feat, considering I couldn’t put my shoes on this morning. Fibromyalgia has definitely forced me to be good at verbally explaining things without being able to physically demonstrate. Some days, my body just won’t cooperate with my words.
I napped this afternoon—a rarity for me—on my back with my knees on a pillow and a heating pad under my lower back. I was breaking all kinds of technical rules, like don’t ever put a heating pad under your body and use ice, not heat, on new injuries, but I didn’t care. My heating pad was microwavable and never got very hot, and I’m not comfortable lying on my stomach because of my stupid ongoing neck problems. Heat just seemed like it would be more soothing than ice, and it was. I’ve been able to walk around semi-human-like, which is a big improvement over this morning’s walking posture.
In keeping with my natural/vegan/organic plan to fight fibromyalgia, I ate a raw veggie sandwich for lunch and am currently snacking on popcorn sprinkled with nutritional yeast. Apple cider vinegar and ice water are mixed in my coffee cup. I don’t believe that proper nutrition can cure everything, but I definitely don’t believe that poor nutrition cures anything.
I’d planned to run today, and am working hard to keep my attitude as positive as possible as I gingerly walk around the house. My knee is finally much improved, my neck is taking a break from its usual painful routine, but now my back is out. Some days, fibromyalgia really sucks.
I love the way Tiger Balm smells, which is more than I can say for most topical analgesics. I also love the way it soothes my sore joints and muscles—a key component in the road to relief from fibromyalgia symptoms.
After dealing with pain for years, I’ve tried almost everything. CryoDerm is still my favorite topical for the really bad muscle issues, but I prefer Tiger Balm for a less medicine-y experience. Smell-wise, Tiger Balm makes me think of a health food store, and neither the inactive nor active ingredients sound lab-made or scary.
Like many topical pain relievers, Tiger Balm uses menthol 10% as an active ingredient. It also lists camphor 11%. I use the .63 ounce jar of ointment, but there are also Tiger Balm rubs and patches, as well as various formula strengths. I recently bought the Ultra ointment, but haven’t tried it yet.
The most accurate description that I can come up with for the Tiger Balm experience is “soothing.” Everything about it feels gentle, especially compared to other topicals that can leave you smelling like a doctor’s office. Tiger Balm has a variety of natural oils in it, which makes it easy to gently rub in during self-massage.
The hexagonal glass jar is small and easy to store, and it’s kind of cool to look at, too. Tiger Balm takes a few minutes to start working, but once it does, the effect slowly and steadily builds. It wears off fairly quickly like all topicals, but usually stays with me long enough so that I can fall asleep with less pain. I get better results on my neck spasms with CryoDerm, but Tiger Balm makes my sore legs—especially the quadriceps and knees—feel great. And since I’m a believer in staying with natural products whenever possible, I definitely appreciate its ingredients.
I had a doctor dry-needle my left knee pain yesterday, which is an experience I can only describe as having an MD treat my body like a voodoo doll. It was extremely painful, but I think it did some good. She said I have patellofemoral syndrome, which I’d guessed, but she also said the words no athlete wants to hear—“stop running for a week.”
It’s hard to know whether athletic injuries that I accumulate are truly as bad as they feel, or if fibromyalgia exaggerates the pain. That aspect of fibromyalgia—the intensified sensitivity to injury—is one of the ones that makes me crazy. I never want to back off a good workout if there’s not much of an injury, but on the other hand, I don’t want to keep going to agony if there really is something badly wrong. It’d be nice to have a more normal sensory pattern so that I could have a better gauge of how bad I’m hurt.
I won’t be able to run for a week because of the knee, but I fully intend to walk, lift weights, and do lots of stretching. I’m not sure if other fibromyalgia patients experience extreme inflexibility, but I do. My tight hamstrings make it difficult for me to even sit upright with my legs extended, and my neck is barely capable of side-bending. I’m planning to use this latest painful setback as time to develop a good, long-term plan for improved mobility. I just hope this knee pain lets up soon, because it’s making me a little nuts right now.
Lyrica is not the drug for me. I gave it a few months, and after some ups and downs, the bad outweighed the good. I only got to 150 milligrams per day, partly because my rheumatologist is conservative, and partly because I was reticent to take Lyrica in the first place.
Titrating down wasn’t fun, but it wasn’t the worst thing ever. I went through a week where I alternately felt like Lyrica made me wide awake and obsessive or knocked me out. The last two weeks, I’ve been down to one 50mg Lyrica per night, and every time I took it, I started feeling increasingly more like I was losing my mind. And it was that scary kind of mind loss—like the stories you read about where people are going crazy, but they’re still sane enough to know it.
Two nights ago was my last time taking Lyrica because of the unbearable psychological distress combined with a complete lack of effectiveness at relieving my fibromyalgia symptoms. I felt like I’d need a massive dose of Lyrica for it to be effective, but I also felt like I’d lose my mind entirely if I took the necessary dose. My memory had gone to hell, I’m certain my IQ had dropped significantly, and I felt like an addict. But the going crazy thing is what tipped me over.
Insomnia has plagued me for years. Sometimes my body (in whole or part) hurts too much for me to get comfortable in bed. Other times, my mind races and I can’t stop thinking about the herniated discs in my neck. Then I get so mad about not sleeping that the frustration keeps me awake. I was very worried about returning to completely sleepless nights post-Lyrica.
I bought sublingual melatonin at the health food store in hopes of sleeping somewhat normally. It tastes like orange-flavored cough syrup, but it helps some. I’m only trying 1.5 mg per night for now, but they had 10 mg pills. The first night off Lyrica and on melatonin, I didn’t feel crazy at all, and I even slept for 6 hours. The next night, I got less sleep, but I still didn’t feel crazy. And I’m gradually losing the tough case of the stupids that I’d gotten while on Lyrica.
Exercise-wise, my first day off Lyrica started with an hour-long run. My second Lyrica-free day included a 35-minute bike ride in a thunderstorm (fun, really), 15 minutes of modified Crossfit, and 20 minutes of low-intensity weightlifting. My neck has been sore constantly for several days, and my left hip and knee are tender, but nothing’s majorly flared at the moment. The harder I exercise, the better I sleep, no matter what hurts.
I’m continuing with a vegan diet, and am soon going to add yoga to my exercise repertoire because I’m ridiculously inflexible and unable to relax. I’m weening off caffeine, and one of these days I hope to give up tortilla chips and rice crackers.
I’m so tired of being on drugs. Even when they’re legally prescribed, pills make me feel beholden unto a toxic substance, which in turn makes me feel even less in control of my life. Fibromyalgia has already stolen so many of my choices, and drug addiction—albeit legal—is something I’m trying to avoid. And at this point, I think I’ve tried almost every drug anyway, and none of them work for longer than a few weeks. I’m so, so tired of prescription drugs and their side effects. After years of trying everything else, “vegan exercise fanatic and melatonin user” doesn’t sound so bad.
The quick verdict thus far: a vegan diet is helping my fibromyalgia symptoms recede!
At the 2 ½ weeks mark, I’ve had a reduction in arm pain, muscle spasms, and generalized neck pain. I haven’t had any new rashes or random injuries, either, and I’ve been able to sleep fairly normally most nights.
Breakfast has been one of the most challenging vegan meals, because I love scrambled eggs. I’ve found a good alternative, even though it’s not even remotely similar to eggs—a bowl of strawberries, pecans, and slivered almonds.
My favorite homemade vegan dinner so far is Indian-style vegetable korma with saffron rice. I used coconut milk as the base for the korma, then added plenty of curry powder, fenugreek, and garam masala. Sweet potatoes, kale, English peas, and cashews were delicious in the seasoned coconut milk.
Simple, vegetable-based sautéed dinners have helped me avoid what some vegans have warned is the “you’re always in the kitchen” trap. Cutting up sweet potatoes, onions, yellow squash, and zucchini and making a quick batch of egg-free cornbread doesn’t take any extra time beyond preparing a meat-based dinner at home.
I’m realizing more and more how dependent I was on dairy. I miss cheese like an old friend, but the loss is getting easier to deal with as time passes. Fibromyalgia really, really sucks. Dealing with it can be very hard, but having struggled for so many years with pain, the food-based sacrifices to become vegan probably seem a lot less challenging then they would if life had been easier the past few years. I’m going to keep going on this vegan train, and will continue to post updates for those interested in using diet to control their fibromyalgia.