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What does someone with Fibromyalgia look like?

What does someone suffering from fibromyalgia look like? #Spoonie #ChronicPain #ChronicIllness #Fibro #Fibromyalgia Fierce Fibro Femme

What does someone with Fibromyalgia look like ?

Fibromyalgia is a disorder with symptoms that include but are not limited to ; severe weakness in muscles and joints, extreme pain (not typical aches and pains), cognitive impairement like difficulty accessing speech or memory loss, and is believed to be due to the way our brains processes pain signals.

Given the extensive amounts of different symptoms, flares and just general changes in how our bodies are made , we are quite often misconstrued as able bodied. There are no physical visible differences between someone who does have CFS and who does not. However, the symptoms that may come along with Fibromyalgia can absolutely alter the way you look. This includes but is not limited to - hair loss (alopecia), weight loss or gain (especially in combination with medication), chronic red and dry eyes, some bloating and some general rashes. The beauty in  fibro patient is they're absolutely sense of optimism and willingness to help others even when their bodies do not allow for it. There is no way of showing the symptoms outwardly, making us pass very often as able-bodied people . It truly is an invisible illness


When I was younger, I was heavily involved in competitive gymnastics. I started at the age of 18 months, having my mother quit her career to support my furthering in sports to support me as my coach. I spent every day stretching, bending and contortionist my body in ways that were barely human.
My first debilitating injury happened during an important prelim , where I over rotated and fractured my skull on the beam while exerting too much pressure onto my spine making it collapse. It took years to work up to the level of flexibility I had, but with cheerleading and dance, I managed to regain mobility in my body.
Fast forward a few injuries, I am 20 years old and joining the military. This was to be my career, what I had longed for since I was old enough to understand serving my country. I loved every miserable moment of training up until , once again, I was injured. Many of you know I spent a great deal of the next couple of years in a wheelchair, then crutches and now due to fibromyalgia will forever be aided by mobility devices.
THIS however, is a win. I have been working on stretching over the past year, slowly building my stability, flexibility and resilience to maintain a pose long enough outside to shoot it! I have fallen in love with the ways yoga has helped and changed my body, and the benefits I see when it comes to maintaining my condition. (1)

• SO RAD •

(after conversation over the topic)...The previous post“Burn, Baby, Burn” spoke about some of the symptoms that come with fibromyalgia as well as comorbid conditions such as lupus, cfs, arthritis, degenerative disk disease, osteoporosis, ibs , chrones, depression, anxiety and so many more. The fact that so many of you could relate to having an invisible illness that causes impairment in daily life which is not often understood by others broke my heart , but also brought a sense of community and belonging. As much as chronic pain, illness or condition may be a struggle to deal with, it has made us all in the end stronger and more empathetic. Most of the pictures that you see are only glimpses into my life; It does not portray the pain of having to pose, how difficult it was to walk in the sand and getting a face and eye full of sand at the end of the shoot (that one is only because of my natural clumsiness!). Although it may sometimes feel lonely, someone to count on is amazing designer @radicalbuttons who makes it easy to identify yourself with pins the read invisible illness. If thats not your jam, then there’s hundred of incredible and supportive pins and gadgets ranging from mental health destigmatization to feminist ideologies and everything in between. Not only are the pins absolutely stellar, but the owner is an incredible and patient person.
Invisible illnesses are real EVEN when they are in your head (my PTSD is a brain/mental health condition!). They are valid even if you can only see it, and it is still valid even for those of you who dont have the formal diagnosis yet. (3)

• B U R N , B A B Y , B U R N•

It's difficult explaining what type and kind of pain fibromyalgia and nerve damage bring. It's even harder trying to explain the concept of chronic pain to someone who is able bodied.
I've always been an active yet clumsy child. I grew up doing competitive gymnastics and would always be covered head to toe in bruises. Other than for a couple of surgeries when I was between 2 and 5 , I would say I was quite healthy and fit growing up, other than for back pain caused by a disproportionate chest. After gymnastics, I moved on to dance, rugby, kickboxing, , cheerleading and many other incredibly physically active past times.
I was injured in the military with a hip dislocation, torn hamstring and nerve damage in my dominant hand. This seems to be the physically stressful event that may have activated my fibromyalgia. These past few years, I am finding myself much more in pain. It's not a pain like you've stabbed your toe, but more like the ache of two days after an intense workout , constantly , with additional burning even in my extremeties. It feels like there is an incredibly amount of pressure applied to my nerves all while they are on fire.
If you meet me in person, you'll often notice I am wearing looser fitted clothing. Tight clothes, especially jeans, exarcerberate my chronic pain and it feels as if i am being attacked by a million tiny ants all while losing all strenght in my legs. It feels like a special kind of hellish chicken pox.
Not only am I in constant pain, but my natural clumsiness has increased tenfold. Sometimes I can't tell the difference between hot and cold , making it difficult when things are TOO hot and I don't realized I've been burned, or I lose all feeling at the tip of my fingers. This makes for a lot of broken mugs and plates! I sometimes struggle with opening jars because my fingers will feel inflammed , can't be standing for longer than a certain amount of time and am exhausted after only being out for a few hours.
Chronic pain and illnesses are valid and real, even when you can't see them. Support your local spoonies <3 (2)

31 thoughts on “What does someone with Fibromyalgia look like?”

    1. I find it really interesting and validating to know there are so many of us fibromyalgia fighters out there! As much as it may be an invisible illness, it definitely isn’t an imaginary one.

  1. Hi Femme, I truly appreciate this post its so reflective of a lot of my fibromyalgia symptoms. I have lived with Fibro from early childhood and am soon turning 59 —-what a train wreck of a life!—- Not bad enough to have an invisible garbage can disease but then to be a guy even a child with a “woman’s” invisible garbage can disease at that. The world owes us so much in the way of apology, right across the board society, Doctors, the Medical industry and especially the Governments who have left us out to dry and to die.

    ANNNNYYWAYSS thanks for being my friend here on wordpress.

    LV Hubert

    1. Hey Hubert!
      I can not imagine the pain you must have suffered as you were aging since fibromyalgia just recently started having more research done on it, nor being a man having fibromyalgia as the gendered expectations are different and you are expected to do much more manual labor-which is near impossible with this disability! My heart goes out to you.
      I hope that with time, all those who caused opposition or any pain can understand a fraction of what living with this illness is like.
      Take care

  2. Yet another one who relates. Jars. I once threw one across the kitchen because even with a gadget to help open it… nope, wouldn’t budge. Didn’t break either. Fingers and hands can be useless sometimes. I like your writing, and thank you for sharing this, we all need to share this.. it quiets the inner chatter.

    1. I am actually working on a post as we speak about tools that have made my life a thousand times easier in different parts of the house! I am so lucky to have someone to open jars for me or else I would never be able to eat anything pickled ever again. I absolutely relate to the frustration that comes with Fibromyalgia, but with more people speaking out about it, hopefully the more research will be done!
      Very gentle pats

  3. I really appreciate how this blogger describes having Fibromyalgia. At one point she writes that it is like being attacked by many,many ants. She is a very excellent writer and this helps me understand. Tanya Lester

    1. Thank you so much for your kind response! I always love hearing when others who do not have the same symptoms as I do help understand.
      Hope you’re having a splendid day ,

  4. I am really happy that i have been cured from (HERPES SIMPLEX VIRUS) with the herbal medicine of Dr Ofua Ofure. , i have been suffering from this disease for the past 2 years and 7 mouth without solution until i came across the blog of this doctor who have cure so many people with his herbal medicine, i also choose to give him a chance to help me and my husband, he told me what to do and i kindly did it, and he gave us his herbal medicine and direct me on how to use it, i also follow his instructions for use and he ask us to go for a check up after 2 week and 4days which i did, to my greatest surprise our result came out as negative, and ever since then, we have had no more outbreak and we are healthy, we are really happy that there is someone like this doctor who is ready to help anytime any day. he also render cure to the following diseases below

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    1. I feel the exact same way ! I felt so lonely when I was diagnosed because the only other person I knew who had it, was already very much progressed in her symptoms so I wasn’t sure who to turn to. Sharing and reading stories is such a great way of connecting with other spoonie a 🥄

  5. It’s hard to plain to people with first world problems what it’s like to be stabbed to death with a fork from the inside, for everything you do for yourself to be an strong independent person who can be out and about with a smile/grimace on your face. While crying on the inside. Look forward to reading more after the 15th! Cheers,H

    1. It really is a difficult illness to explain and have people understand – especially when you go from having a good day to a flare. Hope you’re having a wonderful week 💜🦋

    1. I always thought CFS and Fibro were the same thing up until recently , then realized that they are two things but fibromyalgia sufferers also have CFS too ! Thank you for your support 💕

  6. I do not have fibro, but my sister does. I was born missing several discs in my spine, have arthritis in my so bad that 5 years ago (age 51) my doctor said I had the neck of a 90 year old, and then messed up knees so I understand pain I also experience a lot of the things that fibro patients do. People can be so cruel when an illness isn’t readily visible. It is good that you write about these things because people need to understand that just because you cannot see it doesn’t mean it doesn’t exist. I tell people you cannot see air now try doing without it. Be well and thank you for the follow.

    1. Oh my goodness , poor family of yours ! I’m from a family of spoonies too and it’s nice to have the support , but also one must wonder if there’s a genetic component at some point ! It’s absolutely true – someone once quoted that if they were faking an illness , they’d choose one that wasn’t invisible 😂

  7. Thank you so much for being so open and that you are sharing your story. I’m 26 and I have fibromyalgia for approx. 5-6 years now. It is exactly how you describe it: the burning sensation and pressure sensitivity, being very incoordinated and somehow also dull.
    I am happy to read that because for me it is difficult to find any comparison with others who live with that issue. For me Yoga is my way to go, and it alleviated my daily life tremendously! Luckily I usually get only “fibro-rushes” how I call it – which means, that I’m not experiencing it the whole time.

    Keep on your journey please! I wish you all the best 🙂

    1. I’ve actually ordered an aerial yoga kit and am going to start doing it soon 🧘🏼‍♀️ I find it really helps with allowing me to be mobile – if I stop doing yoga , my body immediately becomes jelly and im bedridden !
      It really is such a difficult pain to express but those who have fibro know it well. Sending you gentle hugs 💜

  8.  I was diagnosed with Fibromyalgia around 7 years ago although I’m certain I have had it much longer than that. I have suffered from sleeplessness, joint stiffness, severe pains, depression and fatigue. My neurologist prescribed duloxetin 40mg daily (Given as 20mg twice daily), although it did relieve some of the pain, I still suffered from joint stiffness and extreme fatigue. Finally, i started on Fibromyalgia herbal formula i ordered from Natural Herbal Gardens, this herbal formula did the magic! almost immediately i started usage, i started noticing a general reduction of symptoms including the very severe pains and fatigue. 9 weeks into usage, the disease has totally succumbed to this herbal treatment. The whole pains and terrible fatigue has seized and i am now able to function fully well again.

    1. I’ve also wondered if I’ve had fibromyalgia for longer but because of the injury I’ve aggravated it to a point of “no return”. I have found natural supplements to help a ton although definitely not enough to remove pain, more so that they allow me not to pass out when walking around the house and I can stand long enough to shower if I take them. May I ask what’s in your supplements since they worked so well ? 😊

    2. Also glad to hear duloxetine helps ! That’s what I’ve been put on but 30 mg to start and then upped to 60 mg. Should be starting in the next week and am hoping for a little bit of improvement

  9. It’s good to share stories like this so that others can understand your pain and to share theirs. Too many folks suffer alone when they don’t have to. Grace and peace.

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