05.12.2016

What I wish others knew about fibromyalgia and ME/CFS …

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Well, today’s the day…May 12, 2016 – International ME/CFS and Fibromyalgia Awareness Day!

Last month, I posed a question to my blog readers and social media followers: What would you like for others to know about fibromyalgia and ME/CFS?

My inbox was flooded with answers, and you guys didn’t hold back! As promised, I’ve compiled a sampling of the responses below. I’ve also created graphics that you’re welcome to share on social media to raise awareness for fibromyalgia and ME/CFS on this day (or any day, for that matter).

If you missed my prior invitation, feel free to share what you would like others to know about fibromyalgia and/or ME/CFS in the comments below!

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Fibromyalgia Awareness 2016…

Debbie B., Colorado, USA: 

“I would like for people to know that when we say ‘I just can’t go or do one more thing,’ WE are way more disappointed and frustrated than you are. It’s sad and maddening feeling weak and tired and having people think you just don’t want to do things. And when I ‘overreact’ to a bump or stubbed toe….yes, it DOES hurt that bad. I HATE feeling weak.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Linda B., Georgia, USA: 

“Fibromyalgia is still a mystery in general and to the medical community. Yet to those of us diagnosed with fibromyalgia, there is no mystery. We are so fatigued, others think we are lazy. We are in pain that never leaves. We are in what is called “fibro fog” where our brains function as if we were at sea with no land in sight. We have memory loss. Individuals have a plethora of symptoms.

“You can not see our symptoms. You do not understand … Yet how could you? We suffer in silence from others’ lack of knowledge. Yet when you ask us, ‘How are you?,’ we answer, ‘Just fine.’ Please educate yourselves to support those you love and care for.”

Cheryl C., Rhode Island, USA: 

“I would like people to be aware of how difficult it is to get through every day doing daily tasks like working and laundry and cleaning, etc., with the pain and exhaustion. I also would like people to know that this is a real illness. Just because I don’t mope around feeling sorry for myself and looking for sympathy doesn’t mean I’m not in pain or exhausted and can barely function.

“Also, by the end of the day I’m totally wiped out, and I can’t go out and do things like I used to. I don’t want people to feel sorry for me, just to try to understand and get educated so they do understand that this invisible illness is real. Also, it’s not just pain and exhaustion. There are so many other symptoms that come with fibromyalgia. It almost mirrors MS. I just want a little understanding and kindness and maybe some help once in a while instead of brushing it off and complaining when I can’t do things because I’m struggling.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Lynne C., United Kingdom:

On the worse days, getting dressed seems like a might achievement. On these days, I feel like I have been hit by several lorries or buses. Some of those stopped and tried to put me out of my misery by reversing over me several times. Simple things such as reaching for the television remote make me shout in pain.

I can’t think straight. When having a conversation, the names of things are forgotten. For instance, I might want to say to my husband to put those dishes in the dishwasher. I say, ‘Put those dishes in the…’ and I am looking at it, and for the life of me I can’t remember what it is called. I might say the washing machine. Or I might curse and say ‘that bloody great white thing’ and point at it.

“I am 52 and have had half a life for so long. I am not depressed, but I pray that I don’t live to be old because I can barely stand the pain now.”

Brandi Clevinger, Being Fibro Mom, South Carolina, USA:

“The one thing I would like others to know about fibromyalgia is that only a small, tiny really, percentage of sufferers use their illness as a crutch, a way to seek attention or to get medication. That tiny percentage should not, in any way, represent the vast majority of sufferers that are actively seeking help and treatment for their pain. Our pain caused by fibromyalgia should not be minimized, dismissed, ridiculed or mocked because of a stereotype or what someone might think.

“If there was a more open-minded way of thinking towards fibromyalgia, we would not have to go months or even years without treatment. Having symptoms dismissed only worsens the pain and prolongs healing. We want to get better and would rather live our lives as best as possible without the stigma of ‘you don’t look sick.'”

Katie Cupcake, Katie Cupcake Life with ME, United Kingdom:

“These chronic illnesses change our lives completely. Everything we once took for granted, like showering, is suddenly a huge challenge. Cooking ourselves a meal now feels like a huge achievement!

“Your friend isn’t avoiding you; she’s just too unwell to leave the house. Your colleague isn’t pulling a sickie or exaggerating; they’re feeling too poorly to even brush their teeth and get dressed.

“I’d love people to bear in mind that although someone looks ‘able,’ they may be suffering from any amount of invisible illnesses that really affect their abilities – ME, fibromyalgia, arthritis, Behcets, POTS, MS and so many more. If you don’t know what’s wrong with someone, don’t make assumptions. Most of us are happy to be asked questions, as it leads to awareness and understanding. If I had to put it in three words, it’s simple: Please be kind!”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Jen D., Wyoming, USA:

“I would like people to know that these are REAL conditions that we suffer from daily. Some days are better than others, but we do our best to put on a mask each day. Everyone needs to know that these conditions can affect anyone, no matter their age. There is no cure, only band-aids that help us get through each day.”

Tracy D., Canada:

“Here’s what being diagnosed with ME/CFS over 12 years ago has brought me: Loss of a beloved career as a registered nurse, poverty, being ostracized and ignored by my own family, almost total isolation, severe depression and anxiety, loss of ability to engage in hobbies and as a former athlete, inability to engage in sports and physical fitness, daily, non-stop pain and difficulty in more actively participating in my beloved grandsons’ lives, which is very heartbreaking.

“What have I gained? The ability to enjoy even the smallest moments when I’m able to go outside and look at the world outside of my four walls. Every cloud in the sky, every tree, the sound of the wind, the smell of the earth, are infinitely more precious to me than all the gold in the world.”

Amy H., Idaho, USA: 

“I’d like for people to know that no two people experience fibromyalgia or ME/CFS the same. Just because you may know what was working for someone else doesn’t necessarily mean it will work well for another. We know you mean well, but please cease with trying to give advice. What we all have in common is a need for understanding and patience. Learn what you can about what science has discovered about the condition. Don’t hold it against us if we have to cancel plans. Offer help if you see we are struggling. Just be a friend.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Synth H., Australia: 

“I feel like I am dying and ready to slip into oblivion. I sink into my bed and sleep, thinking I might not wake up. Then the insomnia hits again, and I am stuck in this vicious cycle.

Cari K., Texas, USA: 

“My disease waxes and wanes depending upon the weather, my stress levels, foods that I eat and even the quality of sleep that I get on any given day. I never know how I will feel today, tomorrow and even the next few hours, if I will be okay or bedridden with today’s bout of pain and medication-induced nausea, or migraine, or muscle pain, or extreme fatigue.

“I think that I would want people to know that when we say nausea or pain or fatigue, I would want them to picture the worst bout of flu or the time they felt pain so badly they needed to go to the doctor to find out the cause or were so tired from lack of sleep, working late or getting up early with little sleep, and magnify those all by a factor of 100 percent. There is something wrong. There is no cure yet.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Sarah K., United Kingdom: 

“We aren’t all lazy, and some days are better than others. Just because we all don’t moan and retreat to our houses does not mean we aren’t struggling. It isn’t the same every day. Some days, just stringing a sentence together is difficult, then other days we can’t unfold ourselves out of bed. All of these things are normal. Don’t judge us because some days we ‘seem okay.’ It doesn’t mean we aren’t fighting inside to keep going. Please be patient with us, and educate yourselves on our problems before judging. We are all just winging it through life after all.”

Diana L., Colorado, USA: 

I have lived with the pain and fatigue of fibromyalgia since 1993. My husband thought that I was just lazy.  My 82-year-old mother and I now live together, and she runs circles around me! I feel guilty for not being able to do more. If I try to do something when I am flaring it can be a disaster! I would love to have energy! I can muddle through pain, but not the fatigue.”

Brenda M., Texas, USA: 

The pain is so exhausting. Those that don’t have fibro just don’t understand. They see you sleeping all the time, so they think you should be well rested, but you’re not. You never are. So folks just assume that you are lazy and are trying to get out of doing things: working, cleaning the house, taking care of the kids/family/pets, etc., etc., etc., which this, too, becomes exhausting to a person with fibro who has to constantly defend themselves for their actions or lack of actions.

“I also have issues with people who ask how I’m doing, and I’ll respond I’m doing okay. They comment, ‘So you are doing better, so you should be well soon.’ No, I’m just feeling better at this moment; I’ll never be free of the fibromyalgia grip. I do my best to not talk about my fibromyalgia pain as I don’t want to drag others into this dark abyss that I call my life. It’s very sad and dark.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Shannon P., Texas, USA: 

“I have found the most difficult challenge with having fibro are the various people who don’t believe it to be a condition. Many people tell me if I just change my diet and don’t think about it, that will make my symptoms go away. Those two antidotes do help, but they are NOT a cure. Even with Lyrica, changing my diet, doing meditation and mindfulness, and exercise, I still have episodes that make me crumble in bed. I am grieving the energetic and optimistic person I was pre-pain and fatigue. I certainly have not lost those traits completely, but it’s been a challenge and taken great effort to maintain them as I am newly diagnosed.

“Another challenge is the way that it impacts my family. There are often moments I have had to stay behind and miss certain activities because I could not muster the energy or push through the pain. Due to this, I have made a concerted effort to educate my family about fibro and the way I experience it so that may enlighten them and create some understanding and compassion. The fact that I am a Licensed Professional Counselor has been a blessing as I already have been proficient in understanding pain management. It’s also bittersweet to say it’s cultivated a deeper, empathetic approach with my clients who suffer from chronic pain issues of all kinds.

All of this said, I will not allow fibro to control me. It is my daily devotion to lean on my faith to give it up and do the best that I can!”

Pat P., Indiana, USA:

“Even though I look okay, I am not okay! I am in pain most all the time, even when I am smiling. When I say I’m tired, I am really tired. In fact I am always exhausted. It is so difficult having an illness people can’t see. I have a handful of friends that notice in my eyes that I don’t feel good, that’s all.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Tamara R., Kansas, USA: 

“I think the main thing I would like people to know about those with fibromyalgia or ME/CFS is that we are not lazy nor weak. Quite the contrary. It takes a lot of inner strength to deal with exhaustion, pain and a myriad of other symptoms day in and day out for months, or even years, and the emotional bouts that go along with having to give up our careers, fun activities, etc. And it’s far from lazy when we push ourselves through these symptoms just to get out of bed in the morning.”

Julie Ryan, Counting My Spoons, Alabama, USA:

What I’d like for people to know about fibromyalgia is that there is no magic pill that will suddenly take us from feeling terrible to kayaking or visiting the circus. We can feel better; however, it takes a lot of work and a lot of trial and error, and what works for one person won’t work for another. It’s rarely ever just one thing but rather a huge combination of things that helps us feel better, and even then we’ll never be back to the person we were before we were sick.”

Deb S., Massachusetts, USA:

Our smiles do not mean that we’re okay. They usually mean we’re putting up a front so we don’t have to explain, yet again, pain that is unexplainable unless you live it. We cry behind closed doors. We often face the world alone – either because we can’t participate or others have given up on us.

“No, we don’t like the way our houses look. We wish we could keep up with all of the kids’ messes and things that normal people do daily. Vacuuming alone requires a two-hour rest. We love our family and friends; please do visit.

“We have tried everything we’ve come across to beat this. Please don’t say things like, ‘Maybe if you try … maybe if you walk more …’ (My legs are already 5x their size.) Please, if doctors can’t find something then it’s highly doubtful your advice will work.

“And one last thing, if you’re a seller of some ‘miracle drug,’ please stop preying on already vulnerable people.”

Melissa Swanson, Fibro Warriors ~ Living Life, Wisconsin, USA: 

Fibromyalgia affects 10 million men, women and children in the United States. There is no cure, but there are treatments that can help relieve symptoms, such as prescription medications, supplements, myofascial release, acupuncture, chiropractor, water therapy and meditation.

We are in pain and tired 24/7. The levels of pain and fatigue can change by the hour due to many factors. Our minds do not work like they did before we were sick. We experience cognitive problems, such as memory loss and difficulties using language. There are approximately 100 overlapping conditions that often co-exist with fibromyalgia.

“We need people in our lives that are supportive, understanding and willing to be a caregiver. We want our old lives back and mourn who we were before fibromyalgia. However, with the right treatments and the right people in our lives, it is possible for us to live a full life in spite of fibromyalgia.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Sharon S., Ireland:

I want people to know I did not choose to have ME. I wish I could dance and do all the activities that I used to. I feel guilty when my daughter asks me to go for a walk, and sometimes I don’t have enough energy to do so.

“I have episodes of brain fog that are unbelievably upsetting. I have almost crashed my car because of the effects of insomnia. I am running on empty. I do not have the energy to keep up with the smallest amounts of housework. Driving drains my energy completely, therefore work is very taxing, and I am fit for bed at 7 p.m. Then I wake up at 2 am and cannot go back to sleep.

“Going to parties is tiring. I am ready to go home after an hour. I cannot drink alcohol because the pains are very bad the following day. I take a strong painkiller along with Cymbalta. I take magnesium, omega 3 and rhodiola. My energy levels have risen from 30 percent to 53 percent since August. Acupuncture and sound healing are starting to help me get stronger. Pilates is also good.”

Christine T., Oregon, USA: 

“People with fibromyalgia aren’t lazy! Fibromyalgia is NOT for wimps! We may appear perfectly fine on the outside, but can be in excruciating pain. It’s like having the flu, but the only symptom is very severe body aches. A treatment or drug that works for one person may not work for another person. Being in constant pain is exhausting and can truly change your life.

“I had an amazing job that I excelled at, and now I’m disabled and do things from home to keep myself busy. The severity of symptoms can vary from person to person. After first being diagnosed, I was in denial for at least a year. Getting other people to understand what you’re experiencing can be a major challenge. Having a positive attitude can be very beneficial, but can also be very difficult to keep when you are in pain.”

Amelia V., New Hampshire, USA:

I would like people to know that pain is not usually visible. Just because my face is not showing pain, it does not mean I am not in pain. This has been especially true for me as my pain has gotten worse over the years. There is a certain amount of ‘getting used to’ the pain. I am always in pain, usually around a 5 on a 1-10 scale. When I am only at a 5, I probably run errands, go grocery shopping, etc. Afterwards, the pain level will be closer to the 10, but no one will see that. I will stay cocooned until the pain goes back down to 5.”

Cindy V., Indiana, USA: 

I would like for people to know that I was once a very hard-working and productive member of society. Like all of us, I was juggling many balls and thought I had a firm grip. Somehow I managed to get mononucleosis just before I turned 40, and life has never been the same. I don’t like being in pain and ill all the time. Most certainly, I don’t like the added stress it added to my husband, children and family. I wish we could be more free to discuss our situations without the worry of ridicule. This ends up making me withdraw more over time and isolate myself. Sad.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Deborah W., Texas, USA: 

“I want people to know how fibromyalgia completely changes your life. We go from being active outgoing, fun-loving people to introverts who don’t know if they can go out because they don’t know if they’re pain level is manageable or if they even feel well enough to go out.

“Imagine feeling sick every day of your life and knowing that there’s no cure. I want them to understand that fibro fog feels like your brain was put in a blender, mashed all up and then poured back into your skull. Try thinking clearly then, you can’t.

“I want people to see we’re NOT JUNKIES. We need pain medication just to survive daily. Can you imagine breaking your arm or having surgery and then being told by your doctor that you can’t have any pain medication while you’re recuperating? Now do you see what we’re living with daily? Imagine pain everywhere everyday. Could YOU function? Could YOU live normally? I don’t think so, but WE have to.”

Diane W., Nebraska, USA: 

Yes, I do have to take all these pills. I am up on all the latest tests and what is going on with fibromyalgia. No, I am not a freak because my case is more severe than what you are used to. Going to the Mayo Clinic isn’t going to help. There is not a ‘take this one pill and be pain free/symptom free’ or ‘just eat right and exercise, and it will all be better.’ I think I could pass and get a doctor’s degree in this from studying it so much. So stop telling me I’m not normal, that I should go do this or not do this.”

Margaret W., Tennessee, USA: 

“Fibromyalgia is Napoleon. My body is Europe, circa 1812. My mind, Russia; it’s beleaguered, but not easily conquered. After 25 years of disabling pain, none of the countless treatments I’ve tried has yielded much improvement in functioning. Fibromyalgia is living in a lemon of a car you cannot leave. It’s the presence of much that is negative and the absence of much that is positive. ‘Success’ must be redefined because effort and outcome are so loosely linked. Fibro is the ball-and-chain you can’t divorce. A bad dream, recycled daily. Nobody organizes charity walks for you. The disregard of doctors shames you like a hospital gown. You’re bootless in a ‘by your bootstraps’ world. And yet, the strongest parts of me have been nurtured by its pungent soil, fertilizer for the beauty that is endurance. Tolstoy wrote, ‘The most powerful warriors are patience and time.’ Here’s to our liberation.”

For May 12, 2016 - International ME/CFS & Fibromyalgia Awareness Day, I asked my fellow chronic illness warriors, "What would you like others to know about life with fibromyalgia and/or ME/CFS?" Here are their responses!

Now, it’s your turn: What do you wish others knew about fibromyalgia and/or ME/CFS? I’d love to read your answers in the comments below!

 

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Comments

  1. James says:

    Even though this is associated mostly with women, it affects men too! Everything stated here apples to male sufferers as well!

    • Donna Gregory/FedUpwithFatigue.com says:

      Most definitely! Unfortunately, I didn’t have any males who responded to my request.

  2. Dianna Burge says:

    I wasn’t diagnosed with Fibro until 2009. I had suffered with many symptoms prior to the diagnosis. Doctor’s always said it was arthritis. My Rheumatologist finally diagnosed me with Fibro, when he started pushing on the tender spots. I have no idea why he didn’t do this on the first visit. Every day my pain level is a 5 or 6. I have learned to tolerate it. It would be a wonderful day if I could be on a level 2 even. I have forgotten what that feels like. When my pain level is 8 to 10 I could just scream. I take nine supplements recommended by my PCP. The vitamin B-12 did help me have more energy throughout the day. I thank God that I am retired and not expected to work every day. I wouldn’t be able to do it. My heart goes out to all that do, and are raising a family. My children are all grown now. I’m probably like most people who have been given every type of medicine there is. Right now, I’m on Gabapentin 300 mg, 3 times per day. It works, but not as good as I’d like it too. I take medicine at night before bed to help me with pain, and I take 5 mg ambien to help me sleep. Every day is a vicious circle.

  3. Can we post this on my Fibromyalgia is Real series? This would give people a good idea of how widespread it is and how different it is for each of us.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Mandy, you’re welcome to share a link to this post w/in your Fibromyalgia is Real series. Thank you for asking!

  4. Thank you for sharing all of our insights to what we want others to know of fibromyalgia. We all have different perspectives, and sharing that difference shows how versatile fibromyalgia is and works in us. It shows the various of degrees in symptoms and how complex it truly is.

    Like one of the fibromyalgia thrivers said, don’t judge someone because you don’t know what’s truly going on in their body.

  5. Paul Nichols says:

    You guys are luckier than I am (so to speak). I don’t have a diagnosis. All of the doctors I have seen get a far-off look in their eyes and mumble about “there is so much that we don’t know about the human body”. I mean, come on, not even a guess? So I have to read up on everything just in case something pops. Whatever my diagnosis, it has the word chronic in it, I know that much. I have had a massive headache for several years now, 24/7/365, and it often wakes me up to perform its “chew the top of my head off” routine. When that happens, nothing works. Most of my head pain centers on the left side of my head, in a general kind of way. My right leg didn’t get the memo though. It starts the day with a sunburned feeling, then moves to fire ants and plantar muscle cramps then by the time bedtime rolls around it feels like it is being boiled in oil, from my toes to my privates. With all that, it’s no surprise that I don’t sleep well at night, which explains my long naps. But no medical professional has a clue as to what might be wrong. Lots of amateur advice, however.

    • Lorri B says:

      I lived 25 yrs with Fibro before a pain management specialist diagnosed me. I was with her for about 3 yrs before she moved on to work strictly at the hospital which meant I had to find a new family doc. First question I asked was “do you believe in fibromyalgia and can you support me throughout”. Her response was a resounding YES OF COURSE. I then spent 8 yrs having to encourage her to try different meds, refer to other specialists, xrays, therapies, treatments ets. Finally I called her on it (I was tired of being the one to suggest things that SHE as a doctor should offer to me). Her response was for me to find a new doctor (she basically confirmed it was all in my mind). What would I like others to know? I WISH ALL DOCTORS WOULD GET ON THE SAME PAGE, these are real symptoms, the pain is real, the fatigue is real, the insomnia is real, the brain fog is real…..

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