I try to explain to people all the time what fibromyalgia feels like because I tend to believe that if they truly understand what it feels like then they would understand why some days I am a bit more withdrawn or limited than others. Fortunately I am in a MUCH better place than I was when I started my fibro journey but I still have my flare ups and days that I don’t want to move because I’m afraid that I might make the pain worse.
Hopefully by explaining to you all of the words that come to mind when thinking about my illness I will be able to verbalize what fibromyalgia feels like to me at least daily so that our friends, family and coworkers might get an idea of the strength it takes to get through most days.
- Exhaustion – I know that we all get tired but the exhaustion that you feel when you have fibromyalgia is nothing that I had ever experienced up until I was afflicted in my late 30s. This is pure physical exhaustion. It’s being so tired that it hurts to breathe. Like there is a cinder block on your chest and it is laboring just moving your chest up and down as you breathe. It’s being so exhausted that when you’re at work you can’t get anything done because you are fighting so hard to stay focused through the hazy cloud that is fogging up your brain. The exhaustion is partly brought on by chronic fatigue syndrome which is something that I believe everyone with fibromyalgia also suffers from. Another reason why fibromyalgia patients tend to be exhausted is that dealing with the amount of pain that we do daily really is draining.
- Sleepless – Even though someone with fibromyalgia tends to always be exhausted it is extremely difficult for them to get into a restful night’s sleep. I had been struggling with this for years, waking up over and over again all night. Some nights feeling like I was sleeping but floating just under consciousness. Finally I went to a sleep specialist and had a sleep study done. Big surprise when I got the results he said, well, your brain definitely is triggering itself to arousal but I don’t see any physical reason that it’s doing so. I didn’t have restless legs, my toe wasn’t tapping in my sleep, I wasn’t snoring, nothing…his advice, deal with it or go on hard-core sleeping pills like ambien or lunesta or something similar. I thanked him and left and started experimenting on my own to find a natural sleep product to use.
- Forgetfulness – Short term memory…what’s that?! I had no memory at all for a really long time. I would start doing something and then stop and look around and wonder what I was just doing. I would watch a tv show and half way through the commercial break forget what show I was watching. I would forget simple directions for doing things at work so I had to write everything down! I sometimes even would find myself driving and know that I was going the right way but have no idea where I was which was one of the strangest feelings. I was so upset by my memory issues that I went to a memory specialist. She did 3 hours of testing on me and at the end, much like the sleep dr, she said well, either deal with it or go on drugs to try to help fix it. She diagnosed me with adult ADHD. A diagnosis that would never even have been thought of before the fibromyalgia. She said that she believed that the ADHD was brought about by the exhaustion and pain that I was experiencing. So, I again thanked her and left to figure out how to fix this naturally.
- Muscle Pain – So, the pain that I felt in the beginning is much different than I feel for the most part now. Before diagnosis and even about 6 months after was when it was the worst. It started with a sore shoulder and frequent severe migraines. It then spread through my upper back and down past my shoulder blades. The only way that I can think to describe the pain is like a normal person getting a charlie horse. Have you ever been jolted awake and your calf muscle is flailing around and spasming. That’s what muscles feel like for a fibromyalgia patient. The difference is that it isn’t just one muscle and it doesn’t go away. It is so wide-spread that you often feel it more in only certain spots because your body can only tolerate being in so much pain so your brain in essence tunes out as much as it can. In the early days I wasn’t able to turn my neck at all. Well, that’s a lie, I would be able to turn it at most 1/2 an inch left or right. Down was ok but looking up for more than a few seconds was rough. So, this pain I could describe as when you wake up with a stiff neck. Usually goes away by the end of the day, the next day at the worst right? Well, not for someone with fibromyalgia. I had that pain and limitation in turning my neck for over a year! I have a lot of mobility in my neck now but if I turn it too far I still get pain. Now that’s a pain in the neck isn’t it! That’s the type of pain that you get when in a fibro flare. The type of pain that I have now is much more localized. It feels more like a pulled muscle from over use at the gym. My muscles normally burn and ache, once in a while I will still get a charlie horse type pain ( i got one in my neck a few weeks ago that lasted for a few days and boy was that painful!) I still never have a day that is completely pain-free. It’s just more tolerable now than it had been when I was in the fibro flare.
- TMJ – I didn’t have issues with this at first but as my other muscles started finding relief I started feeling the pain in my jaw. The only way that I can describe the pain is that it feels like someone punched me in the face on my cheek bone. At times it feels like I got hit in the jaw with a baseball bat. If you’ve never been punched in the face by a 200 lb body builder or hit in the jaw by a pro ball player swinging a bat then you’re lucky! The days when my face hurts are pretty tough to get through. I now can’t eat anything too hard or chewy and I can’t eat anything where I have to open my mouth too wide like those big beefy bacon cheese burgers that I once loved!
- Swelling – I still have issues with swelling. Doctors kept telling me that fibromyalgia isn’t an inflammatory illness but I say hogwash! It totally is. Before I was diagnosed I would go for massage therapy or acupuncture and tell them that my back or face are swollen and they would be able to feel the fluid build up. I wasn’t making it up. They fortunately were able to validate for me the fact that my body was reacting to the muscle issues by swelling and becoming inflamed. Because of the constant swelling that I still encounter to this day I ice a lot! Usually after a day of working at the computer I will just go and get my ice pack and ice down my neck and back so that I don’t flare up. The swelling and pain combination usually makes my body temperature rise a little bit which makes the ice feel even better!
- Weakness – At times my extremities lose their strength or fall asleep. I think it’s because the swelling compresses the nerves. At times I can’t open jars or grip things properly with my hands. For me it affects mostly my right hand/arm. I have a hard time unloading the dishwasher at times because I have lost grip more than once of the dishes as I was putting them away. (I have a scar or two to prove how dangerous that can be) I’ve been frustrated in the past when not able to open a jar and not having anyone in the house to help me. I’ve had to put the jar away and change my meal plan because of it. Some people have trouble walking because of the weakness in their limbs. I haven’t had this problem yet thank goodness but I can empathize with people who are experiencing the same issue with their legs as I am my arms/hands. I can see how someone loses feeling in their legs or has trouble getting them to hold up their body weight. Think about trying to stand or lift something when your appendage has fallen asleep…it’s very similar to that. I even find days where I am working on the computer for too long and my hands will start to ache because I’ve cupped the mouse for too long or typed for too long.
- Disconnected – At first you don’t realize how disconnected from friends and family you have become because you’re too busy mustering up the strength to get through the day. Once you start feeling better you realize that you can’t remember the last time you saw or spoke to friends that you used to see all the time. You can’t remember the last time you were able to make plans and not break them because you just couldn’t face sitting in a chair at a restaurant for 3 hours and muster up the strength to talk and be social at the same time while also fighting the exhaustion that you are feeling. You shy away from making commitments because you get tired of breaking plans with people because you don’t feel good. When you do get out of the house you’re quiet and withdrawn because you are distracted by how uncomfortable you are. One of the most important things to feeling better is to have a strong support system. Many people with fibromyalgia end up becoming disconnected from most of their inner circle.
- Depression – While I don’t have nor have I been diagnosed with depression many with fibromyalgia have been. Personally I think that the fibromyalgia causes depression a bit more than depression causes fibromyalgia. I have definitely had my dark moments where I just sat in my recliner and wanted to cry because I just couldn’t see any way to not feel like that every day. Some days it was easier to stay in bed or sit in a dark room. A lot of the fibromyalgia medications are actually antidepressants. Problem being, if you aren’t actually suffering from depression and the chemical imbalance that causes that then they aren’t going to work.
- Anxiety – I know that anxiety also is another big issue for a lot of fibromyalgia patients. I hear about people who have issues with anxiety or are perfectionists that end up with fibromyalgia. I know that having fibro actually increased my anxiety levels. I had a really hard time managing my anxiety when I would have to do the most basic of tasks like grocery shopping. I ended up not being able to go alone because the weight of he cart with the groceries on it and then putting the stuff on the check out belt and carrying the bags was too much for me. I still 90% of the time don’t grocery shop! I also used to get crazy anxiety thinking about traveling. Being in a plane or a car for hours isn’t something that someone with fibromyalgia can tolerate for too long. Even though now I am feeling better I still get anxious when thinking about these things. You feel like if you do it then you might over do it and flare up. I spend every minute of every day doing things really carefully so that I avoid those flares.
- Migraine – My journey started with the migraines. To describe what the migraines felt like I would have to tell you that the pressure felt like an anvil being dropped on your head and being stuck there. OR picture being hit by that pro baseball player on the back of your head at the base of your skull. I often would find the back base of my skull swollen and hot to the touch and extremely painful. When I first started having migraines I also would suffer from something called Occipital Neuralgia. That is where the occipital muscles (at the base of your skull) would swell up and compress the occipital nerve that ran up the back of your head and then fingered out like a tree around the side of your head. Whit the occipital neuralgia I would randomly get painful zaps randomly throughout my head. It felt like someone was zapping that spot with electric, like have you ever stuck your finger in a light socket or gotten a zap from a cord. That’s what it felt like randomly and constantly through various spots on my head. Other times it would feel like the anvil dropped on my head or the best times was when I had both combined! Super fun. So, if a fibromyalgia patient tells you that they have a migraine they aren’t kidding. They are no joke. Migraine meds rarely would ease the pain and they would last 4 or 5 days straight. Thank goodness that I have them under control now because that was definitely a rough time.
- Fibro Flare – so I might have mentioned above the term fibro flare. Just to give an understanding, a fibro flare can consist of any or all of the issues that I mentioned above. Sometimes a flare will be just a day or two or sadly enough they can last for years. Before diagnosis I was in a 3 year constant fibro flare with almost all of the issues above happening daily, oh and I was working full-time with those issues too. Now when I flare it’s fortunately only once or twice a month and for a much shorter period of time. Usually 2 days, 3 max.
Those are the words and feelings about each word that comes to mind when I think about how fibromyalgia feels to me at least. It’s not pretty. I wouldn’t wish it on my worse enemy. I can however say 100% that I am ok now. I am 98% prescription drug free. (I still use lidocaine pain patches sometimes to avoid a flare or to pull myself out of one.) I learned how to manage the fibromyalgia symptoms naturally after a lot of hard work and high quality supplements and herbs and major dietary changes. Because of fibromyalgia I have completely changed the direction of my life. I have dedicated my life to becoming health coach and helping others dealing with these issues find relief!
If you have any questions about what fibromyalgia feels like or you’d like to add some of your symptoms then please comment below or feel free to message me with any questions!