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What Does Fibromyalgia Feel Like?

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Reprinted with the kind permission of Sarah Borien and A Life Less Physical
Last week was the start of my fibromyalgia flare up and it struck me that I use that phrase often but it doesn’t really mean anything to a lot of people. Fellow spoonies probably identify with it and those close to me know it as “uh oh, something bad happened,” but what does it actually mean? How does it feel?
So this week, every time I experienced pain too noticeable to ignore I thought about what it actually felt like. Here are some of my feels from during the week: 

  1. I feel like I’ve trapped a nerve in my neck; I can’t turn it to the left so I’m a bit worried about driving to and from work.

  2. I feel like I’ve just had a tetanus shot in my right arm. It aches, but I can identify a sharp, bruised pain right in the middle of the ache.

  3. I feel like I’ve slept on a cold, hardwood floor for two nights. My lower back hurts and the rest of my body aches – it feels like I need a good stretch.

  4. I try to stretch but bending feels like I’m trying to bend a plastic ruler, I can’t really do it and I fear if I force it, I may snap.

  5. I’m itchy. All over. My arms and legs are itchy, my eyeballs are itchy, the palm of my hand is itchy.

  6. I feel like I’m walking through treacle. It’s not impossible by any means, but it’s hard work.

  7. I feel tired. So flippin’ tired. Like I went for a really long country walk that ended with a hike up Scafell Pike.

  8. I feel like I’ve been in a car crash. Not a bad one, but my bones feel bruised all over.

  9. I feel like I walked in to a table and bashed my knee. Both knees actually.

  10. I feel like my muscles are made of jelly, like they have no strength. Please don’t ask me to lift anything. 

So that’s what it felt like this week. And all the while, I’m smiling and working and no one would have a clue to look at me that inside, everything’s just a bit sore.
I’m not telling you this so you feel sorry for me, but just to show you that – for many of us with fibromyalgia – every day is a bit of a struggle, but more often than not, you would never know. There have been many, many blog posts addressing the “but you don’t look sick” mindset. It’s true, most of us don’t. But that’s mainly because we’ve managed to perfect the ability to manage our pain and our day-to-day life. We don’t do the things that make pain worse, we just do the things we need to do to get by. And quite honestly, I’m feeling pretty proud of all of us right now.

Sarah Borien lives in a country cottage in Oxfordshire with her husband and their two cats. She has had fibromyalgia since 2009 and is passionate about finding and sharing new coping strategies. Sarah authors her blog, A Life Less Physical, and has written for New Life Outlook (Fibromyalgia).

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3 thoughts on “What Does Fibromyalgia Feel Like?”

  1. Tracylee77 says:

    Hi pleased to sort of meet you, I live in Bedfordshire with my family and managery of pets I have woke this morning to excruciating pain in my right arm flowed by numbness and tingling. My gums feel cold my lower back won’t stretch out and I feel like I could sleep forever. I was diagnosed in 2013 and find this time of year always a struggle. Can’t type anymore my hands are going numb. Speak to you soon xx

  2. CarolBuck says:

    After having FM for nearly 23 years, in addition to lots of other things, I’ve learned to pay attention to certain signals. The itching is most likely due to some sort of allergy, probably to something you’re eating. I used to get an intense itch in my forearm, which I eventually traced to the accidental ingestion of milk products. For itching connected to skin rash, my dermatologist discovered that combining 2 products, one to kill germs and one to kill fungus, took care of all my problems, including the stuff that looked like bug bites. No more itching most of the time. Sharp pains are often due to tiny cysts just below the skin surface or on a muscle. They are round. Stiffness can be cured temporarily by a very gentle, slow stretch. Check with your GP or a physical therapist for the safe way to stretch. Massage therapy really makes a difference in the ability to move. As far as not being able to walk long distances, most of my problems are due to bad breathing. Learning how to breathe properly can make a difference, especially if you’re hyperventilating at night and hypoventilating during the day, like I’m prone to doing. The knee pain is often due to arthritis or a problem with the sacral joints. Yes, all those “unconnected” spots actually are connected. Can also be the result of bad circulation in small areas. Muscles of jelly? I may be 75, but my body is still fairly strong. My lifting limit is 40 pounds, if done correctly, taking great care to use the right muscles. I volunteer in a library, and carrying heavy piles of books has strengthened my arms, back and even legs over the years. So, if I feel like jelly, I know I have the strength and I do whatever needs to be done anyway. Aside from the pain, no problems. A fibro flareup? I always go for my bottle of cherry-flavored, chewable colostrum. Comes in capsules, too, w/o the flavoring. I begin with one tablet and work my way up slowly for 5 or 6 days to about 2,000 mg, once a day. 20 years or so ago, the CDC was experimenting with colostrum and came up with a set of guidelines. It has to be taken from a cow within the first 16 hours (12 hours now) of the birth of a calf; nothing to eat or drink (water’s okay) within 2 hours before taking the colostrum, plus 1/2 hour after taking it; once a day only. Can start working within the first week or maybe the first month, depending on how well you pay attention to all your physical problems. If you suspect food allergies, in the a.m., before breakfast, eat a few bites of the item you might be allergic to and wait half an hour. If anything untoward happens, a sudden headache, sore throat, sneeze, itching, muscle ache, etc.,you might be allergic to whatever you have ingested. Try it again the same way for 3 days, one item at a time. My former allergist highly recommended this test, and it really works, without the heavy expense and dangers of an allergy test. If a test is positive, let your physician know and mark it down on your list of allergens. Mine is now 2 pages long, thanks to a blood test for 11,000 dental products and my home testing, including what type of allergic reaction might be expected. I always have it with me in a special water-resistant case, along with the names and phone numbers of my doctors and family members. Comes in handy sometimes, and could save your life.

  3. gog4kitty says:

    Pardon me but I find your reply quite judgy as if we are flawed if we can’t do the things you push yourself to do. I was diagnosed in 94 and have tried everything and still use a lot of PT exercises and other things to survive. I worked a highly stressful job in criminal justice for many years but did leave at 59 on disability. My job provided healthcare for 2 years. Then I moved to Mexico where healthcare is cheap while waiting for medicare. The weather is also always warm and I have a pool. I also have itches which are not allergy related. There is an entire website for fibro warriors dealing with itches which aren’t allergy related. So don’t tell us to buck up, push through, get an allergist and be like you cuz you have figured it out and must tell all of us how to do it. I thoroughly resent your response.

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