Fibromyalgia Symptoms and What They Feel Like From Someone Who Has First Hand Experience 

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Fibromyalgia is a syndrome compiled of a group of symptoms that existing together with no other probable cause. As per WebMD, “more than 12 million Americans have fibromyalgia. Most of them are women ranging in age from 25 to 60.” Although men can get fibromyalgia it is believed that women are 10 times more likely to be diagnosed than men.

The fibromyalgia symptoms that people are experiencing can also be related to other conditions which is why it’s so hard to actually get the diagnosis. For years my diagnosis was myofacial pain syndrome because that was a more ‘accepted’ diagnosis by insurance carriers but the myofacial pain associated with the other symptoms solidified that it truly is fibromyalgia.

Most Common Fibromyalgia Symptoms

  • pain all over
    • Don’t be mislead by this one. You can still have fibromyalgia if you don’t experience the pain all over your entire body. While some unfortunate souls do feel the pain all over, some people have it in their upper bodies, some in their lower body and some a combination of the two. Personally mine goes from mid back all the way up through my shoulders, up my neck, into my face and head.
  • fatigue
    • The reason that so many people with fibromyalgia experience fatigue is because they have problems sleeping. Some experience insomnia, others will sleep for a few hours and then lay awake for hours before falling asleep again and others will sleep but their brain randomly triggers their consciousness and they never get into those deeper stages of sleep that one needs for rejuvenation.
    • The word fatigue by the way doesn’t really do justice to what you will feel. The exhaustion that succumbs your body is unlike anything I had felt up until that point. It is an exhaustion so deep and to the core that it’s hard to breath. Imagine the tiredest you’ve ever been and multiply it by 1,000…that’s what this exhaustion feels like
  • memory/concentration issues
    • Typically referred to as ‘fibro fog’. The brain can only handle so much information and when it’s busy processing all of the pain while it’s exhausted from lack of sleep then there will be memory issues. My issues went as far as watching a show and during the commercial not remembering what I was watching. (I was 38 at the time)
  • chronic headaches/migraines
    • If you have chronic headaches or migraines and you feel like it’s your muscles that are causing them then you’re probably right. It took me years to get doctors and therapists to understand that it was the tightness in my muscles that was causing the migraines. No migraine medicine would relieve them for more than a few hours, and I tried them all!
  • muscle knots/spasms/weakness
    • Have you ever pulled a muscle badly or gotten a charlie horse in your calf? If so then that’s pretty much what fibromyalgia muscles feel like. Your muscles will tighten and spasm, feel like there is a deep burning in them, and sometimes you will feel sharp pain in them. You will have more knots/cramping then you’re aware of. Fortunately your brain will only allow you to feel a certain amount of pain so you might feel the most pain in one location but bump another part of your body and feel intense pain because that muscle also was hurting, your brain just wasn’t focused there.
  • Sensitivity to one or more of the following: odors, noise, lights, cold, medications, foods
    • This is one of the lesser known symptoms that I have had issues with. For me, noise, odors and light are my biggest issues. It won’t always be noticeable but there are times when I have to go in a quiet room because the noise is too amplified. If I walk past someone with perfume on I have to move quickly because the smell overwhelms me. Light is usually only an issue for me at night when I’m truing to sleep.
  • Lack of tolerance for exercise
    • After exercising you might feel great but within a few hours or the next morning you can wake up with extremely stiff painful muscles. This is part of the reason why many fibromyalgia patients don’t exercise. Some are also not able to do normal household chores. At my worst I volunteered at a food bank and was just merely grabbing the tray, putting a piece of bread on it and passing it to the next person. I was in intense pain and unable to move my neck for a week after that!
  • Swelling
    • While doctors will dismiss this symptom it is very real. My swelling often occurred in my upper back/shoulder area and my face. Touching the skin you will notice it hot to the touch and it will feel kind of like there is water just under the surface. As good as I feel now I still have issues with swelling and often ice my back/neck as a preemptive measure.
  • Numbness or tingling in extremities
    • This actually occurs for the most part because of the swelling. When you are swollen your nerves can become compressed causing the numbness or tingling. I very often had this issue with my right hand from the muscle tension and swelling in my back/shoulder, and I have a scar or two to prove it from breaking dishes that have shattered because I lost grip on them. Still to this day sometimes I can open a jar but some days I can’t. It’s hit or miss.
  • Jaw or facial tenderness
    • Similar to lock jaw or TMJ symptoms you will at times feel a pop in your jaw joint because of the muscle tightness surrounding it. My face and jaw pain actually didn’t start until I started to feel better. I assume it’s because as the rest of my body stopped hurting so much my brain was able to focus on the face. At times I feel like I got punched in the face by a 300 lb body builder right on the cheek or jaw bone. Normally only one side will hurt at a time and usually it jumps form that one side to the other a few days later causing a pretty tough week.
  • Anxiety or depression
    • I saved this one for last just because I can’t even tell you how many times I had someone tell me ‘but you don’t have the personality of someone with fibro’. While it’s true that I don’t suffer from depression, which I think is what most people assume all fibromyalgia patients do, I have always had a bit of anxiety. I’ve been an anxious person on and off throughout my life but I have always been really good at masking it. Because of that I would say that this symptom can be taken out of context. Just because someone doesn’t seem outwardly anxious or depressed then it shouldn’t dismiss the diagnosis. I often times find that a majority of fibromyalgia patients suffer more from a severe case of perfectionism than anxiety or depression. I do however think that fibromyalgia can cause depression if one lets it, and believe me, it’s pretty hard to resist and fight back.

Do you have a combination of the symptoms listed above and after test after test haven’t been able to be diagnosed with anything that is causing your symptoms? If so then you might have fibromyalgia. If you think that you have fibromyalgia then find a rheumatologist in your area that is familiar with the fibromyalgia 11 tender point diagnosis method. If you have fibromyalgia then you will definitely feel pain when they touch the proper tender point on your body. Problem is, most doctors don’t know how to find them so do your homework and find one that does.

ABOUT THE AUTHOR:

Stephanie Sinagra has made it her mission to help people who are stuck in the medical system who are suffering with chronic pain regain their health. After spending a number of years herself bouncing from doctor to doctor she was finally diagnosed with fibromyalgia. 1.5 yrs post diagnosis she has been able to resolve the majority of her symptoms as well as rid herself of all prescription medications. To learn more about how Stephanie was able to do this visit her at nutritionthatheals.com and check out her fibro busting regimen.

Stephanie Sinagra
Stephanie Sinagra has made it her mission to help people who are stuck in the medical system who are suffering with chronic pain regain their health. After spending a number of years herself bouncing from doctor to doctor she was finally diagnosed with fibromyalgia. 1.5 yrs post diagnosis she has been able to resolve the majority of her symptoms as well as rid herself of all prescription medications. To learn more about how Stephanie was able to do this visit her at healthnerd.me or email her at [email protected]