The Part of Life With Fibromyalgia I Haven’t Told You About

I’m a fairly open person when it comes to physical and mental illness, but I can also be very reserved, especially about my chronic pain and fatigue. It’s not because I don’t want to share about what’s going on with me, but because I don’t want people to think I’m a “whiner” or “attention seeker.” I am neither of those things. In fact, I’m quite the opposite.

A lot of people know I have fibromyalgia. What they don’t know is the reality of what I deal with. They see a positive, silly, young 25-year-old woman on the outside, but they don’t realize how much pain I’m in, or how badly my anxiety is affecting me. I don’t think people really understand the intensity of my conditions. I’ll admit that part of it is my fault, for showing only the good parts of my life on social media, but showing the not so good parts can sometimes come off as attention-seeking. I don’t want attention, I want my conditions to stop being stigmatized. I don’t want pity, I want people to understand these illnesses.

Here is the reality of someone with fibromyalgia:

1. Pain

When you tell someone you’re in pain, they don’t really take it very seriously. They usually think that you have a typical headache or backache. They don’t realize that your whole body is experiencing aches, stabbing pain, needles, numbness, or oftentimes a burning sensation. They also don’t realize that the clothing you’re wearing, or the cloth chair you’re sitting on could be causing you pain as well. People with fibromyalgia have sensitivity to certain fabrics and materials. Some of us (including myself) feel pain in our organs. I’ve had ovarian pain for years and didn’t know what it was until I was diagnosed with fibromyalgia.

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Our pain is often unbearable and can cause difficulties in everyday situations. When I’m going through bad flare-ups, I am sometimes late to work. It seems like no matter how early I wake up, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are locked, and my hands ache. Carrying a grocery basket can cause my hands and elbows to tense up, opening jars is sometimes impossible, household chores can take everything out of you, and the list could go on.

2. Fatigue

Speaking of being late to work, fatigue is another reason it’s so difficult to get out of bed. I could have had the best sleep of my life, but it will feel like I didn’t sleep a wink. For me, chronic fatigue is one of the most difficult symptoms. There have been days I’m nervous to drive long distances because the sun causes really bad fatigue. I work a desk job, but by midday, I feel like I’ve been doing hard labor, and all I want to do is go home and sit on the couch. And good luck trying to schedule anything with me after work. I’ll just be too exhausted to do anything. If you’re able to get me to hang out with you on weekdays, it’s probably because no matter how tired I am, I really need your company.

3. Brain Fog

This is the last symptom I will touch on. Brain fog is a bitch, to say the least. Completely forgetting a conversation you had yesterday, having to pause mid-sentence because you forgot what you were saying, or stopping a conversation altogether because you can’t think of the right words to use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me because of this. I find at times, I can’t even remember how to spell a word when I’m typing. I proofread my text messages, emails, and social media posts multiple times before pressing the “send” or “submit” button. The embarrassment of brain fog causes me so much anxiety. I just want people to know can’t control the way my brain works sometimes.

Here are some other common things fibro warriors struggle with:

1. Mental illness including, but not limited to, depression and anxiety.

2. Temperature sensitives. Summers, and especially Winters are often unbearable.

3. Irritable bowel syndrome (IBS).

4. Night sweats/hot and cold flashes.

5. Insomnia.

6. Painful and irregular menstrual cycles.

7. Problems with balance.

8. Tinnitus (ringing in the ears).

9. Restless leg syndrome.

10. Rashes and skin disorders.

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It’s very common that individuals with fibromyalgia will struggle with different symptoms than others. All symptoms are different for everyone, so it’s difficult to explain to doctors what your symptoms are. Chronically ill patients seem to know more about their illness than professionals, and that can be hard when it comes to medications and treatments. We’re all in this together, and we need support and understanding from the people and loved ones in our lives.

I hope this sheds some light on this awful illness. If you know someone living with fibromyalgia, go give them a (gentle) hug and ask what you can do to help them. Just being there to listen could mean the world!


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10 Responses

  1. Nessa says:

    Thank you for your post.
    I can totally relate to not wanting to share the bad because people have told me to stop exaggerating, or respond with your always in pain.
    The brain fog and memory issues I get are devisating and beyond embarrassing. Especially when I can see the the irritation it causes the people closest to me.
    I am in a constant worry that I’m not doing enough or being resented by the people I live with because I can’t do as much as them or even house work.
    The most devisating part of this disease is fighting with medical professionals who dismiss it because they don’t believe it exists.
    Actually even more than that is the distance people who care about me back away and add distance because when I can’t hide how I’m being affected by my symptoms as well as I usually can. No one who cares for me can see me the same once they see me in pain.

    • Carrie says:

      I so understand every word you are saying, I have a couple of friends who have fibro & they are the only people who truly understand & believe what’s happening.
      This condition has effected every part of my life.
      I am currently going through a marriage break up because of the arguments between me & my husband about him saying he’s spoken to me about something & I can’t remember the conversations, it has become so heated & things have been said that can’t be unsaid that we can’t carry on together. He has become my full time carer & resents me because it has changed his life so much. He used to work & go to the pub everyday now he doesn’t, he’s started taking drugs as in his words its the only way he can live with me. That has caused too many nasty words to carry on.

  2. J says:

    I came down with this disorder (I refuse to call it a disease) shortly after I had mono. I was in my mid-30s, and it was 1989. I wen to doctor after doctor, referral after referral, only to be turned over to someone else. After 5 years, I was told to consult a psychiatrist because I was obviously mentally ill. Another doctor told me I had “drug-seeking behavior”, even though I had repeated over and over again that I wanted a solution and an answer, not a bunch of pills to make the symptoms disappear.

    Finally, in 1995, our HMO plan changed, and I found myself sitting on another table, talking to another doctor. This guy was young, and I was just waiting for the not-so-gentle referral to “someone else”. Instead, he listened. He wrote down every stinking complaint I presented. And he handed me the Kleenex box. Finally, he said for me to sit and wait a minute, he’d be right back. He came back the with New England Journal of Medicine, a recent issue that had an article about chronic fatigue and other systemic issues. In it, there was mention of a “new” disorder called Fibromyalgia.

    22 years later, they have developed vaccines for HIV/AIDS (usually a lifestyle-choice disease) as well as Hep-C, and a host of other diseases. And what do we get? Happy pills to make us feel better about being in pain.

    • Katherine says:

      Thirty years I have had this and it does get worse. It has hindered my career and my hobbies. It affect me socially in many ways, too. I hate it.

  3. Marijke Groothuis says:

    My worst fear about Fibromyalgia was that I would get an attack of brain fog right in the middle of a lecture I was giving. Fortunately this never happened – I am sure it was the adrenaline that kept them at bay – but it added a stress to an already stressful life, that now has seen me also to have to deal with heart disease. Not knowing what is fibro-related and what is not, only exacerbates what is truly a most energy-sapping condition. I am not even upset that there are vaccines for HIV/AIDS, Hep C etc. What I find more reprehensible is the fact that the medical world has seen fit to make men’s erections or rather lack thereof more important than the quality of life for millions of women (predominantly) around the world who are suffering from this rotten disorder. A word of warning to all the men out there though: the more women get added to the list of those already suffering, the less likely it is that Viagra is going to help them get the pleasure they so clearly “need”.

  4. Florita says:

    I use hemp oil and it has helped a lot and it’s legal in all states a friend that’s a chiropractor recommended it to me

  5. Alison says:

    I feel for all of you I have fibro so on a good day if I can call it that you see people so like every one with this they think your ok but if they were to see you the day after they would see a different person .if you get a good day so called then you no there are bad days or weeks to come . But they don’t see that I’ve had Cronin pain for weeks now I’m so sick of it I have a 13year old to cope with aswell she was only 5 when I was told I had fibromyalgia and I worked and looked after my mum done every thing for her house work gardening etc . Then in 2012 she past away . My fibro got worse and I even ad to give up work . Every thing go’s when you have this illness it’s like you life has been taken away . Then there’s the hardships that comes with it aswell it’s like a Levine nightmare day in day out . And the fibromyalgia gets worse with time they said it was because l lost my other daughter with meningitis it was the shock of that . I feel for you 25 is so young to get this . I wish you the best keep going alie

  6. Dave Anderson says:

    Thank you for sharing your experience with everyone.
    My wife has Fibromyalgia and CFS and it is a daily struggle for her and I feel helpless as I don’t seem to grasp the reality of the pain levels that you sufferers feel.
    This has given me a better understanding of how much pain you suffer everyday.
    I just wish there was a cure for this but unfortunately there is no cure.
    My wife has battled with this for over 4 years now and is still battling the odds everyday.
    She came up with the pain scale of 1-10, this worked out as 1 – 3 nothing being done as flatlined today, 4 -5 possibility of doing some light things but just light things, 6 -8 yep I can manage some little heavier tasks, 9 – 10 bring it on I’m ready for the day ahead.
    I kind of get what she means now.
    So now when I ask her how she is she will say the score and I understand how she is and this system seems to work for us.
    It is frustrating for the partners of sufferers as they seems to be helpless in trying to help understand the cruelty that all Fibromyalgia sufferers have to go through. I applaud you for sharing this with us all and standing tall and proud just like my wife

  7. Gina Fry says:

    You just out into words what I haven’t been able to. I wish that my family and friends could understand what I am going thru. I am not a whknet, not lazy, not looking for excuses. I have a chronic medical condition and sometimes I feel like I am drowning in it. I misd the old me so very much.

  8. Clare capp says:

    I see you all & I know we are all warriors people think because you carry on & do as much as you able on any given day depending on the pain levels that you “can’t be that bad, you must just have a low pain threshold” but I feel for us the opposite is true, if our threshold was low then we would definitely be in trouble! We “carry on” regardless because the alternative would be to stay in bed & have no life to speak of, I push myself harder than ever on those 9-10 days & barely find the strength to even eat on those 1-3 days finding that those days follow each other respectively. And you are all right in that we need more understanding but even then I still feel guilty when my 73 year old mum is doing my housework because I can’t! ????

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