I have previously talked about What Fibromyalgia is and Who Spoonies are but I thought it was worth taking the time to answer the question What does Fibromyalgia Feel like? To do this I am going to share details of my experience and provide you with a round-up of other people’s experiences that I think you will find helpful.
For me, Fibro provides a variety of different feelings. There are obvious ones like pain, Fibromyalgia is not just Fibromyalgia goes into more detail about the different types of pain. The pain itself I can describe as ‘Original Fibro’ for want of a better term. In other words, pain is generated by having Fibromyalgia. Or ‘Fibro intensified.’ In other words, how Fibro feels when I do various activities or have experienced them. An example of Fibro Original would be when I have a severe headache, or one of my joints stiffens up and becomes painful to move. Fibro Intensified is more to do with something that causes minimal pain or discomfort causing a lot more, because of the Fibro.
A perfect example of Fibro Intensified Pain would be the smear test. Almost everyone (non-spoonies) I hear talking about it describes it as either pain-free or slightly uncomfortable. This is very far from my experience. During my last one, I literally cried out in pain. As with all medical appointments Michael came with me, and he was sitting on the chair at the other side of the curtain.
When it hurt so much and he spoke to reassure me, the nurse said that more “other halves” should come and be present for the tests. This in itself makes me wonder if the description of pain-free and slight discomfort is a massive downplay and healthy people do have more problems than they let on.
Another example of Fibro Intensified pain includes scratching yourself. Once we are out of infancy the majority of people are not unduly bothered by a light scratch that doesn’t even draw blood. Something as seemingly trivial as this will be still stinging, smarting, and potentially throbbing for me, several hours later. To answer the question of what Fibromyalgia feels like I would say there seems to be no end to everyday experiences that are made painful or more intensive by Fibromyalgia.
As well as pain Fibromyalgia is responsible for many strange sensations. For instance, I get twitches. I explained this in my post about my Fibro Companions, twitchy is one of them. Muscles in my body seem to develop a mind of their own. Although this doesn’t hurt as such, if it lasts too long it can cause the muscle to ache and it can certainly be distracting for both myself and potentially anyone around me.
Another sensation I experience is when I go ‘woozy’ which is sometimes accompanied by ‘the shakes,’ I get the feeling this is a little like what happens to be diabetic if their blood sugar drops too low. Although I am not diabetic. I only have a small amount of alcohol once or twice a year so it is not related to drinking either.
Fibromyalgia feels like a lot of different physical sensations I have referred to but it also feels like living in an unpredictable state. As I have mentioned before somebody without a chronic illness a few times in a year may wake up with a virus like a cold but in general, they wake up expecting to feel relatively well. When you have a chronic illness like Fibro every day is a 50/50 gamble.
It is interesting looking around the web and seeing how other people describe it. Some are similar to mine and others are different.
Now, imagine waking up in that pre-flu state every day. Like every. Single. Day.
Stephanie uses the same analogy as me, with different wording. I think it is one of the most important messages to share. With a disability (depending upon what it is), you can have things adapted for you to allow you to carry out the tasks you need to do. With a chronic illness, you may have some of the difficulties of disability but on top of this, you are or have the potential to be ill every single day. I discussed this in more detail in the post I’m not disabled I’m chronically ill.
A lot of us have pain that doesn’t seem to make sense.
Adrienne mentions some of the seemingly illogical pains. Some of these are similar to my Fibro intensified pains. Waistbands of clothing and bra straps. With regard to bra straps, I have found things get worse as time goes along. I have never been able to do underwires as they have always ended up in my armpits, even after being professionally measured!
I used to be able to wear traditional non-wired bras but in the early days of Fibro, they became uncomfortable so I began by swapping bras for Sports bras (although they are not supportive enough). These days though I can’t even wear one of them for more than a short period of time. Basically, I only put one on to leave the house.
For Amy Mullholand, simple chores like washing the dishes or making breakfast can be incredibly challenging. “On a good day, I can get through the cups and the silverware, then I must sit for at least 15 to 20 minutes. Then I tackle the bowls. Then I sit and rest,” said Mullholand. “On a bad day, I have literally cried from the pain of standing long enough to fry an egg.”
The experience of Amy that Dr. Gupta is describing is so very familiar. I am fortunate that I don’t have to do the cooking these days. Before Covid19 when Michael was still going to the office I used to make my own lunch and the majority of days putting something in the microwave was as good as it got. On a better day, I could scramble eggs in a pan and use the toaster. There are some items like the larger pans that I can’t even pick up on any bar on the very best days.
My major nemesis is folding the laundry to put it away. It is a catch 22. Michael is always happy to do it but I like to do it myself as my folding is a little neater. Yes, I have KonMaried my drawers. I even have a Sheldon Cooper t-shirt folder. Although the neatly organised drawers give me satisfaction my back is screaming in pain by the time I have finished doing it.
I can only consider doing this job on a pretty good day. I confess last time I was in a flare-up and I got sick of seeing the bag full of clean laundry I ended up putting handfuls of knickers into the drawer just as they were. In a couple of days when I had improved a bit, I came and folded them…
“You just start thinking you are crazy,” she added. “I start thinking ‘why am I not being believed?’. I feel like a fraud a lot of the time because I look normal and people treat me like I’m normal – but I’m not.”
I am quite fortunate, to date I have had to deal with one Rheumatologist who “doesn’t believe in Fibromyalgia” every other medical professional I have seen has either had a working knowledge of the condition or has gone away and done their homework. There are doctors who actually refer to the patients to understand the condition better. After all, we live with the condition every day, they at best have had one lecture while studying. One of the biggest frustrations is that Fibro can’t be diagnosed with x rays or blood tests.
How is the general public expected to understand how Fibro feels, a syndrome that ill-educated professionals have still not got to grips with! At least my family doctor apologized for my experience with the rheumatologist. Whenever I think about this subject I am always reminded of this scene from Patch Adams:
“Everybody who comes is a patient and everybody is also a doctor.” When you live with a condition like Fibromyalgia the online community is very much like this. We are all there to both give and receive help. A lot of the time advice from a fellow Spoonie is far more beneficial than a “treatment” from a doctor. Many times an alternative therapy is more effective than a drug.
It can be hard to put into words what the various types of chronic pain from fibromyalgia feel like – especially if you’re talking to someone who doesn’t have the condition. For those of you who express yourselves through art and creativity, sometimes the best way to describe your pain is to let a visual representation do the “talking.”
Over on the Mighty. Paige has gathered together a selection of images created by people who have been asked: “What does Fibromyalgia feel like?” I love the fact that the artwork comes in all shapes and sizes, from skilled artists to free form expression. Of course, I can hardly call myself creative without creating my own image for you. So here is my visual interpretation of What does Fibromyalgia feels like.
If you have found this useful I would love it if you could share it on your social media channels of choice so others can have the chance to read it too. Perhaps you have an article or blog post that you would like included? Just get in contact and as long as it is suitable I would be happy to take a quote and link back to you.
Why not hop into the comments below and share your experience of what Fibromyalgia feels like, it’s good to talk
Fibro Women Blogs
Chronic Woman Blogs
Chronic Illness Blogs
Official Fibromyalgia Blogs