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Living With Fibromyalgia - Online Support Group

Fibromyalgia- what is fibromyalgia?

#1

What is fibromyalgia? We get asked this alot dont we? Well here ya go, first off your skin, It’s sometimes like burning pain, kind of like the pins-and-needles feeling of the blood rushing back into your foot after it’s fallen asleep. Like aching all over like you’ve been pounded by a meat tenderizer. You get electric zings and it feels like you got a terrible sunburn.
The pain doesn’t seem to make sense. It can be from usually harmless things, such as a cold breeze, soft fabric moving across the skin, ​or light pressure from a handshake.The waistband of a loose-fitting pair of pants, or the belt on a bathrobe, may cause searing pain. Bra straps, the elastic in socks and underwear, and the tag in a shirt may become major sources of irritation or pain. Its imsomnia, laying in bed at night exhausted without the ability to sleep. Waking up just as tired as when you layed down, even when you got "a good night’s sleep"
One day, you might have low pain levels and be able to function somewhat normally, while other days your bedridden with it. You may find one moment of relief and then have pain slam into you and make you feel like you were hit by a bus.
It can make you unable to think clearly or remember what we were just doing, you have difficulty remembering what you just read, so you read the same sentance over and over and over. Learning new material, or absorbing what people say to you—especially if there’s something competing for our attention, is impossible. Or even doing simple math becomes a challange. Becoming disoriented in familiar surroundings and loosing track of yourself becomes a day to day norm. even putting a simple sentence together can seem like it takes all your effort. It’s IBS every time you get stressed.
You are sensitave to everything! Loud or repetitive noises, bright or flashing lights, strong chemical smells (such as the laundry aisle at the grocery store) can all trigger a rush of symptoms.
It may seem crazy or unrealalistic that a noise would give you stabbing pains or an immediate need to rest, the smallest things can set it off. Then theres days when you feel nothing, not happy, sad, mad…just nothing. Like nothing makes sense, like there is no reason to get up. Sometimes my life feels like I’m watching a television show I know it’s my life I know that it’s me, but It feels nothing like me, I don’t even recognize myself or who I have become. I look at who I was and I don’t see me anymore.
I can’t handle the little things, you can’t even wrap your head around What a happening in front of you let alone what’s happening in the future. Everything seems so much harder than it should just doing the day to day seems impossible.
Then there is the guilt. Guilt that your not enough, not trying hard enough, not working hard enough, not enough for your family or yourself. Guilt over not being able to do those dishes in you sink or the laundry sitting next to you, knowing what you want to do and just not having the strength to complete.
When it takes everything you have to just smile. You always feel as if people believe your faking, you don’t look sick so your not, they see a healthy looking person , there’s no physical signs on the outside so they think you want attention, or you are just lazy. It’s the worst feeling in the world to know they think you are lying. It sometimes feels like the whole world is against you, even yourself. When your under any sort of stress your whole body feels like it’s crawling, it’s a constent feeling of how it feels when you lean back in a chair and your about to fall. It feels like you have no air, as if your trapped in your own head. Like you just want to lock yourself in a room but cannot move. Like your world is stuck in that moment and you are totally helpless. After the stress subsides then it’s like starting at square one and it takes a whole week to feel better again. You are drained, physically, emotionally and mentally. Fibromyalgia is so much more than a symptom. It’s a life altering invisible disease.

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#2

Hi I have not been on here alot but i am soooo glad I read my email today what you wrote has brought tears to my eyes everything you wrote describes my life My husband has called me useless my son gets mad at me when he asks me all these questions at once and i get all stressed out because i cant handle everything at once no one understands i used to work 4 16 hour shifts a week and right now i can only handle 3 8 hour shifts but not only do i have fibromyalgia it turns out i also have osteoarthritis pretty bad in my thumbs and my vitamin d level is very low and i have graves disease and hashimotos the graves disease has been in remission for 5 years now i think the hashimotos is acting up im going to the endocrinologist tomorrow but you couldnt have said the meaning of the life of fibromyalgia any better bravo :grin:

#3

Tiffany every word was perfect people ask me what my condition is all the time and I find it hard helping them to understand. Sometimes I don’t understand it myself. I’m so glad I read my email today thankyou and good luck xx

#4

I am so sorry that you are having such a difficult time . I wish I could help but this is perfectly describe my situation and how my life has changed . Having you want to talk to and listen to makes me feel so much more hopeful thank you

#5

Hi It explains this condition perfect. So pleased you mention tight clothing. I have again just had to return to the shop some trousers, as they make me ill will pain and sickness, pressing on my stomach. People I speak too cannot understand this when I tell them. I have also cut the labels off all my tops and clothes because of irritation. Today I have taken three painkillers, lirica and naproxen. Trying now to get through the housework, and really wanting to have enough energy to take my grandchildren to the park. However, by the afternoon fatigue catches up on you, and all you want to do it sit down. Last night I was awake several times, putting support bandages on my legs, and a support glove on my hand. Unfortunately this is life now and an every day thing which we all just get used to and in a way accept it. If one day we have a better day than just make the most of it. xxx

#6

Your description of the guilt is what brings me to tears. How do ration my energy out so I have some left for people I love and things I enjoy doing? Constant battle that makes you question career and what’s really important in life.

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#7

It means so much when i see all your comments!:heart: it helps knowing I am not alone at least i know it’s not just me dealing with this, I know I’m not going crazy!

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#8

Thank you for your kind words! I know it’s not easy to deal with the constant stresses of life, but when you throw health problems in the mix it’s nearly impossible! You are not alone! We truly do need to educate whoever is around us on how these problems affect our day to day lives. No healthy person can truly understand, but they can at least see a glimpse of our struggle.

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#9

This is the best reading that I have seen. I am 72 and have been in pain for 35 or more years . I have Lupus plus other things going on . I have seen loads of doctors and spend lots of money trying things that others have said if you try this or that it will help you . Well none of it has worked . Sometimes I just can,t find the right words to say how I feel or what it is that is happing and how bad the pain is . There are many days that I just can,t find the strength to get out of bed … but I know I have to as I now have a husband that has lung cancer . Thanks for the info its the best .

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#10

Thank you for taking the time to share this descriptor. I have had severe fibromyalgia for many years and was finally professionally diagnosed by a rheumatologist when I was 18. I discovered that I am in the 1 to 7 percentile to have fibromyalgia this young and this severely. It really does affect every aspect of your life and mental wellness, I am very relieved that fibromyalgia is finally being recognized as an auto immune disease as just a decade ago, it was considered a mental illness by most doctors. To me knowledge is power, and the more that sufferers of this auto immune disease speak out about what we are truly experiencing on a day to day basis will hopefully give some much needed insight to individuals everywhere.