A woman in bed, holding her head in pain.

When I Was Asked to Describe My Chronic Pain

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I have suffered from chronic fatigue syndrome for 26 years. I was sick for about a year before I received a diagnosis. About five years ago, I also developed fibromyalgia. I live my life always in pain at some level, and exhaustion is my constant companion.

A few days ago my dear mother – who, at 73 years old, runs circles around me – asked a simple question:

“Can you tell me how it hurts, where it hurts?”

Now that’s the question. For many of us who live with chronic pain conditions, describing our pain – not only the location, but the quality of the pain – is problematic. How does one describe seemingly infinite types of pain so that someone else can understand?

Years ago, when I worked as a paramedic, I asked people to describe their pain as though someone was doing something to them to cause the pain. Was that hypothetical person stabbing them, and if so, with what? A knife? A needle? Was that person pinching, poking, burning, or slicing them? Was that person standing on some part of their body? This gave us a common ground for communicating something as complex as one person’s perception of pain.

Chronic fatigue syndrome causes pain deep in my body. It’s an intense ache that gets worse with physical exertion and stress. Fibromyalgia causes nerve pain, which is a bit harder to corral. My skin often hurts, like when you’re getting the flu and have a fever. Even my hair hurts. I can’t stand anything that isn’t extremely soft touching my skin – even to the point of not wanting to lay down in my bed because more of my skin is pressing against something. At its most extreme, even air moving across my skin causes severe pain.

My muscles ache, and I feel like I have pain right down in my bones. But more interesting is the sudden, severe pains that strike in random locations throughout my body. These are the pains that change each time, not only in location, but in quality.

These sudden pains strike hard enough to make me call out and rob me of my breath. But they usually repeat only several times, then stop… for a while. These are the pains that might be stabbing (with a knife or a needle), burning, tearing, pricking, tingling, or any combination of these. On a good day I can expect this type of episode once or twice. On a bad day, a day in which my body is letting me know I did way too much, these episodes are nearly continual. I have a short break after one episode, only to grab a different part of my body, holding my breath in pain, a few moments later.

Nighttime is the worst, as my body deals with the activities of the day – even though I have cut back my activity to working a couple of hours a day from home, in a recliner, on my laptop computer. I write and edit, keeping odd hours as my foggy brain and pain level allow. I have to get ahead of the pain, remembering to take my pain medication before it becomes unbearable, even though my instinct is to put it off. Otherwise there is no catching up with it.

Can you tell me how it hurts?”

I’m grateful to those close to me who care enough to ask this difficult question. It’s not something I would want to attempt to describe to random people who are merely curious, as that simply takes too much energy.

Have you come up with a different way to describe be how it hurts? Perhaps you can share here.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Hemera Technologies

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14 Bra Brands Women With Fibromyalgia Recommend

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When you’re dealing with the skin sensitivities and widespread pain of fibromyalgia, the last thing you probably want to do is put on a bra. If you’re at home, wearing several layers or have a small chest, you may feel totally comfortable skipping a bra entirely — and that’s great! But for many women, there are occasions when a bra feels necessary. Perhaps you feel physically uncomfortable and unsupported without one, or you need to go run errands and feel self-conscious skipping it.

On these occasions, you’ll want a bra that’s soft, isn’t too tight and doesn’t add to the pain you’re already feeling. As any person with fibromyalgia who’s gone bra shopping knows, many bra styles and brands just won’t work. 

We asked our Mighty fibro community to share which brands offer styles they can tolerate. Check out their recommendations below.

Remember, too, that fit plays a huge role in whether or not bras are comfortable, so be sure to ask a salesperson to measure you, or grab a tape measure and use a bra calculator to find out your correct size.

Just so you know, we’ve selected these links to make shopping easier for you. We do not receive any funds from purchases you make.

1. True & Co.

true and co true body scoop neck bra

“True & Co. True Body Collection. So comfy! Feels like wearing nothing!” said Jess Pflieger.

“True Body is the only bra I can wear anymore. I don’t know how much money I wasted buying hoards of bras until I found something that didn’t hurt,” Lisa Hero said.

Buy the True Body Scoop Neck Bra featured above for $44 at True & Co.

2. Glamorise

glamorise sports bra

“Glamorise sports bra! It is all I can wear. I am a 44G and it is the only type that holds them up without underwire and doesn’t make my neck and back hurt,” Adrienne Heeren said. “Anytime I try to wear a different bra within a couple of hours the pain becomes unbearable.”

Buy the Glamorise Ultimate Full-Figure Bra featured above for $48.99 at Glamorise.

3. Hanes

hanes pink and gray bra

Truthfully my favorites are these cheap Hanes bras (they are non-compression athletic-looking bras) from Walmart,” said Karen Lyons.

“I’ve used Hanes with no underwire, the material is very soft and flexible,” explained Sonya Ouellet.

Buy the Hanes X-Temp Foam Wirefree Bra featured above for $12.50 at Hanes.

4. Wonderbra

wonderbra strapless lace bra

“One hundred percent this one [featured above] by Wonderbra!” Michelle Green recommended. “Discovered it when researching for my wedding day lingerie and have since bought two more.”

Buy the Wonderbra Refined Glamour Ultimate Lace Strapless Everyday Bra featured above starting at $49.99 on Amazon.

5. Maidenform

maidenform bra

“Maidenform has been my life saver!” said Kelsi Jones. “It actually has great support, looks cute and the straps are soft and wide enough that they don’t dig in.”

Buy the Maidenform Comfort Devotion Tailored Extra Coverage T-Shirt Bra featured above for $20 at One Hanes Place.

6. Aerie

aerie bralette

“Aerie all the way! It’s American Eagle’s version of [Victoria’s Secret] PINK but their stuff is so much better and so comfortable,” Bea Cohen said. “The sales associates are super helpful too and make sure you find exactly what you’re looking for.”

“Unwired bralettes are the best I’ve found,” Jessica Lentz recommended. “Aerie has some amazing ones that are priced fair and are a quality product from my experience.”

Buy the Aerie Real Me Bralette featured above for $34.95 at American Eagle.

7. Victoria’s Secret

victoria's secret bralette

“Always Victoria’s Secret,” recommended Alexandra Cook. “They have so many different types to find the perfect type and you get a personal bra fitting and they last forever — completely worth the money.”

“I have a handful of bralettes from Victoria’s Secret. Fortunately for me, I am rather small chested so they offer the comfort and support I need,” said Cameron Leff.

Buy the Victoria’s Secret Easy Plunge Bra featured above for $29.50 at Victoria’s Secret.

8. Reebok

reebok sports bra

“Reebok sports bras: I’m almost a DDD, and it’s supportive enough for the level of exercise I can manage to do, it’s not constricting, and it’s a very soft material,” said Mattie McAfoos.

Buy the Reebok Hero Racer Padded Sports Bra featured above for $40 at Reebok.

9. La Senza

la senza turquoise bra

“La Senza is the only brand I can wear. It’s not too thin that it cuts and the bras with and without underwire seem to not hurt me until the end of the day. Plus they still give me that yummy cleavage!” said Koroleva Voyny.

Buy the La Senza Lightly Lined Full Coverage Bra featured above for $25.95 at La Senza.

10. Rosie For Autograph

rosie for autograph blue floral bra

“Rosie bras at Marks & Spencer are amazing,” Claire Hewitt recommended. “So, so comfy and pretty, too. I got loads in the sale recently.”

Buy the Silk & Lace Padded Plunge Bra featured above for $44 at Marks & Spencer.

11. Miss Mary of Sweden

miss mary of sweden bra

“Miss Mary of Sweden make a really good front fastening posture bra. When my arms are tired or painful I can’t handle a back fastening bra, even fastening it at the front and twisting it around isn’t an option,” Sophie Robinson explained. “When I’m tired I know I slouch, being rather top heavy this means going bra-free causes even more posture problems. It doesn’t completely solve the problem but it definitely helps. Definitely not a thing of beauty but I really don’t care!”

Buy the Miss Mary of Sweden Soft Cup Bra With Front Closure featured above for $53.99 at Miss Mary of Sweden.

12. Champion

champion brand sports bra

“Champion brand sports bras. No underwire. Adjustable straps. Soft and comfortable,” said Nicole Marie.

Buy the Champion Spot Comfort Sports Bra featured above for $28.99 from Champion.

12. Genie

pink genie bra

“Genie bras. Inexpensive and extremely comfortable,” said Alice Charbarneau.

“I love Genie bras. It has been the only bras I have bought in the last five years,” recommended Abby Pinch.

Buy the Genie Bra featured above for $9.99 at Genie Bra.

13. Pact Organic camisole

black camisole tank top

“I’m all about the cami! That’s what I wear under my shirts instead of bras,” Krystina Kari Ferrari said. “And sometimes even that’s too much pressure on my chest!”

“At home, I have spandex tank tops I’ll put on under my shirts. It works well because I get cold easily too and it helps warm me up,” said Ashley Allison. “They’re a size smaller than what I wear so they’re a little snug. That provides decent support and I’m a DDD!”

Buy the Pact Organic Super Soft Cotton Women’s Camisole With Shelf Bra featured above for $16.99 from Target.

14. Uniqlo

uniqlo bra

“Love these wireless bras and straps don’t dig in,” said Danielle Masuda.

Buy the Uniqlo Wireless Bra featured above for $19.90 at Uniqlo.

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On Tough Days With Brain Fog, Sometimes I Just Have to Laugh at Myself

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It’s so funny sometimes when I really think about it. The brain fog and the memory loss and the confusion. I guess I get so wrapped up in the seriousness of it all that I forget, sometimes, it’s worth a good laugh!

 

For instance, I just returned home from the grocery store, and, as I checked out this afternoon, I could tell the unplanned, unorganized trip to the busy store was taking a toll on my foggy front quadrant, but didn’t realize how bad it was until I couldn’t remember my phone number when the cashier asked for it. My phone number. No one else’s – mine. And, I wasn’t leaving until I remembered it… because it was the key to my getting over $15.00 in rewards at the pump! Ha!

Many of you have been there – staring at the floor or the wall, or even the lady at the checkout saying, “Hold on… it’s on the tip of my tongue…” Thank goodness the people behind me were patient and had a sense of humor because once I did finally remember it, and celebrated as if I’d won the lottery, the cashier read me my new total and I so proudly smiled, graciously accepting the big discount that rewards number had gotten me. Then she just stared at me and I continued to smile back as it began to get a little awkward. I even looked at the couple behind me who were smiling, too, and I felt bad because the machine was holding them up even more… until I realized it wasn’t the machine at all – they were all staring at me afraid to tell me I hadn’t paid yet! OMG… are you serious? I just laughed, and inserted my card as the guy behind me kindly asked if I was driving and if I needed a ride home. “Nope, I’ll be fine,” as I laughed all the way to my car.

Another recent experience that deserved a good chuckle was my trip to Long John Silvers. Don’t ask why – I guess I was craving two pounds of grease with my fried crunchies and a side of fish (I can’t lie, I do like LJS once in awhile!). Anyhow, I just pulled on up to the window and waited… and waited. And when the friendly lady finally appeared and asked if she could help me… I realized, I didn’t even stop to order! Nope! I just drove on past the sign and intercom and right up to the window to wait for whatever it is I thought I had ordered! Ha. What a mess.

So often I find myself writing stories we can all relate to about pain or struggling, and I am always so comforted when I read comments and stories from readers that make me feel as if I’m not alone. But, my trip to the grocery store today reminded me that among all the ugly stuff that comes with chronic illness, if we pay close attention, there are some pretty hilarious moments we should be sharing, too! Because we all deserve a good laugh once in a while. I could go on and on, but I think it’d be more fun to hear from you all – what’s something you’ve been able to laugh at that we can all relate to? Please, share away!

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

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lady gaga

Lady Gaga Confirms She Has Fibromyalgia

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Lady Gaga has been open about her struggle with chronic pain, though she hasn’t always been clear about the exact causes of her pain. But today, she finally revealed her diagnosis: fibromyalgia.

Gaga posted a tweet confirming that fibromyalgia, a chronic condition that causes widespread pain, fatigue and brain fog, is the source of her chronic pain. Her struggle with the condition will be shown in her new Netflix documentary “Gaga: Five Foot Two,” which begins streaming on September 22.

“I wish to help raise awareness & connect people who have it,” Gaga wrote.

Others with fibromyalgia expressed their reactions on Twitter, with many thanking Gaga for opening up a conversation and others asking how she deals with the pain while still remaining physically active.

Previously, Gaga has said she tested “borderline positive” for lupus and that she dealt with chronic pain after breaking her hip.

At a press conference before the film’s premiere at the Toronto International Film Festival last week, Gaga explained that it was “hard, but liberating” to document her chronic pain, and said she believes pain is a “microphone.”

“My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they’re not alone. It’s freeing for me… and I want people that struggle with it to hear me,” Gaga said.

She also acknowledged the “self-deprecation and shame” involved with pain, and that people may not believe she is really struggling.

“I want people that watch it — that think there’s no way I live [with chronic pain] because they see me dance and sing and don’t think that could possibly be — to know I struggle with things like them,” Gaga said. I work through it and it can be done. We have to stick together. I don’t have to hide it because I’m afraid it’s weak. It’s a part of me.”

Photo courtesy of Lady Gaga’s Facebook page

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The Self-Doubt That Creeps In With Fibromyalgia

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One thing that continuously surprises me about fibromyalgia is self-doubt. We’ve all heard about fibromyalgia patients dealing with medical professionals who don’t believe their pain is real or who face disbelief from their friends and family around the validity of their diagnosis. But I didn’t expect to have to continually battle doubt within my own mind.

I think perhaps it has to do with the tenuous nature of the diagnosis. There isn’t a blood test or an x-ray we can point to as proof of our illness. Instead, we’re asked subjective questions that are really hard to answer.

“On a scale of one to 10, how tired are you?”

How do you define tired? Tired compared to whom?

 

“On a scale of one to 10, how much does it hurt?”

What is pain? Is it tenderness, a dull ache or a sharp pain? How much does it need to hurt to be considered pain? Do you mean according to my definition of pain now, or my definition of what pain was five years ago?

“When I press these spots, do they hurt?”

They’re sore but not excruciating. If you’d asked me three years ago, I would have said it hurt, but now it just feels tender. So, is that tender or painful? On a scale of one to 10, is that a five or an eight?

I remember leaving my rheumatologist’s office after just such an appointment with a diagnosis of fibromyalgia. In the following days and weeks I was overcome with doubt. Did I answer the questions correctly? If I’d answered differently, would I still have the same diagnosis? What if I’d exaggerated unintentionally?

Underlying the self-doubt, I’m sure, was a kernel of hope that my problem was fixable, that a few trips to a physical therapist could sort it out.

But self-doubt makes it really difficult to accept a diagnosis and that in turn makes it easy to push too hard and end up in a push/crash cycle.

It took me over a year to accept my diagnosis and I still find the doubts creeping in. Am I really sick or am I just being lazy? Am I really unable to make dinner tonight, or do I just not feel like it? That person with fibromyalgia is doing more than I am, so perhaps I’m just being overdramatic and could be doing a lot more. Maybe if I just exercise more, or take that particular supplement or change my diet…

The self-doubt makes an already overwhelming experience even more devastating because, not being able to trust even your own instincts, you feel particularly lost.

I really didn’t understand how much pain I was in until I experienced a particularly odd migraine. It was one of those marathon migraines and, unusually, it ended with an aura. While I had the aura, I had absolutely no pain. It lasted for a few, blissful hours and it was such a revelation to me – that this is what a normal person feels like. For just a little while, the sand bags fell off my limbs and the pain, tightness and stiffness lifted. I felt grateful for that brief respite, mostly because it made me realize the full truth of my situation. I have fibromyalgia. I have chronic pain and fatigue.

orange butterfly

I’m finding the path of acceptance is one we all have to travel and discover on our own –  naming our illness, recognizing our limitations, defining our needs and then figuring out the balance between a healthy (for us) level of activity and the rest we need. It’s not an easy journey and no one can give us a map to lead us through. Fortunately, through forums like this, we can support each other on our travels.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Wavebreakmedia.

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When Chronic Pain Made Me Unable to Sit

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All sorts of things can go wrong with these bodies of ours. But still I feel somewhat embarrassed that I can’t sit down.

It’s not easy to explain to others, especially since neither I nor the doctors know the exact cause of the problem. I have had fibromyalgia for 24 years, and I fractured a mid-back vertebra (T12) falling from a horse 14 years ago. Since then, I have had varying degrees of nerve pain in my hips, which would come and go. But the past five years it has been intense and unrelenting. It seems to have been triggered during a year when I was underweight and lacked sufficient padding. But despite gaining weight since then, it has not diminished.

I have lived with a problem knee for most of my life, and expected I might lose my ability to walk, or at least to walk with ease. But I never imagined I’d lose the ability to sit. So often this affliction seems surreal, absurd.

Of course, embarrassment and the absurdity of it are the least of my issues. As you can imagine, my activities are severely curtailed. These past several years I have not traveled, attended a meeting or movie, nor any other sort of event. Occasionally I’ll go out for a short lunch or coffee with friends. But I must sit on a special cushion and clench my glutes the whole time to minimize the pain. It hardly makes for a leisurely outing.

Due to my knee problem, time standing or walking is limited, too. So between these afflictions, I am unable to work. I do my best to take care of the housework and cooking and run short errands for my husband and myself. But most of the day I’m supine on the sofa or bed, online or reading, meditating or just being. I recline on special air cushions, but still must shift and turn every 10 minutes or so to manage the pain. Although the pain is focused in the sitting bones, it is also active in my lower back, thighs and every other part of my hips. The days often seem very long.

Pain — it should be so simple to treat, or at least mask over. Give it time, take medication, try acupuncture, electrical stimulation, massage, etc. Of course, I’ve done all that, and nothing touches it. I put most of my faith in time, but at this point — five years in — I am accepting that this may be my lot for the rest of this body’s life. I’m 54, which is not so young, but thoughts of another 30 or forty 40 like this are often distressing, frustrating and depressing.

I know I am not alone. No one wants pain or disability. But we have what we have. I have not given up hope that somehow, someday this problem will diminish or resolve. But I am at the point where I also must accept that this is where I am right now, with no foreseeable end in sight, and do my best to shift my attention to appreciate all that is good in my life.

The first thing I can do is release the shame of having an unusual condition with no sound explanation, and the guilt of not being able to participate in life as I once did. Bodies do what they do, I did not cause or ask for this. And I am replacing old values with new, narrowing them down to what really matters each day for me: learning and loving. I have certainly learned a lot from this ordeal, most importantly compassion and patience, both with myself and others. And I continue to explore and learn something new each day. I have especially enjoyed spiritual exploration, which both intrigues and comforts me. And nothing can stop me from loving.

I love my husband, cat, my few friends and family members. And I love the world. I just can’t judge anyone anymore. I know we all struggle, and I love and admire all of us for that. Because I can’t get out and be of service as I’d like to, I spend a lot of time praying for or sending loving vibes to whomever comes to mind, whether it’s a close friend, someone I hear about in the news, our country or the whole world.

Someday I may sit up again with comfort. That would be glorious. I often dream of this, both in sleep and waking life. But this vision is beginning to seem less and less likely ever to arrive. That will be OK, too, as it must be, should reality offer me no other option. And so I will continue to toss and turn, and love and learn. As long as I can do that, this is still a beautiful life.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: ladi59

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