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Just came across this..so very accurate.

Apr 17, 2016 8:00 PM

Early Morning
You start to wake up, though its a bit later in the morning than you used to. When you first open your eyes, there is some grogginess (from your previous nights meds) and your head hurts a bit. You slowly move your feet over the bed and onto the floor. That takes about 10 minutes. You then get enough courage to stand up. That might take 4 or 5 tries, but you finally succeed!. Ok, now that you are standing, whats next? You try to take a few steps. The first 3 drive pain all over your body. You just want to stop and dive back into bed. But you keep thinking to yourself, If I can only make it to the shower, then I will feel better You do shower, but towel drying is hard because you cant move the towel that easy.

You are up, start to get dressed. Gosh how difficult is it to put on socks. Then you try to put pants on. If you are standing, you almost fall because one leg gets stuck. If you are sitting, you get both legs on but then realize you cant get up without falling. Shoes, for now forget them. You have some coffee (or tea) and find something that will calm down your stomach.

Mid Morning
On your way to work, or like many of us, cant work, but have some errands to run. You get into your car. Now that is a feat in itself. You never realized how difficult going from standing up to sitting in a car seat is. You plopped your butt on the seat and try to get your legs to swing into the car. Now you are set, heading out. Five minutes on the road and road rage erupts.... (well for me at least) Why are there other people on the road? Doesnt everyone know that when I go out in the car and have to go someplace, no one else should be on the road!

You are exhausted, you hurt, you are waiting for the recent dosage of pain meds to kick in. Lunch time comes and you have no appetite, you skip it.

Gosh, isnt the day over yet? but its only 2:00pm. You try to smile you way through the afternoon. But all the while you just wish you could be laying down, sitting in a hot pool or anything to give you some relief. The phone rings one ring, two,,,three... guess thats why there are phone machines.

Early evening
Day is almost over for most, but for you its been a century. People start coming home from work, getting ready for dinner. You want to sit down, you really cant think of much except you are hurting and want to be alone. Dinner comes, if its a good day, you muster up strength and act normal for everyone.
Evening You try to watch TV, but your legs are burning, you have tingling in your toes and are just uncomfortable. Sometimes family and/or friends join in to make it a good night. You get a few "Oh you look good, are you getting better?" You do everything you can to not jump up and attack that person... Instead you mutter something or just look the other way.

You get ready for bed. For a second you wish things were so different. You cry a little and realize that you will have to go through the same thing tomorrow!

Chronic Pain is no FUN!

I just wish everyone coukd understand. I wanted to post this on my fb page but not sure if it will be received well.

Apr 17, 2016 8:15 PM

That about sums it up for me today too. Very well said.

Apr 17, 2016 8:17 PM

Me too dipbop ..I wish we could get the healthy people to see and understand this.

Apr 17, 2016 11:32 PM

Newfibrogirl, the only thing I would change is that I cook the dinner hoping that I can stand up long enough to get that last job done before I slide down into a murky painful puddle.
You nailed it.

Apr 17, 2016 11:34 PM

Wow, that covers it so well. Thanks for posting...

Apr 18, 2016 8:00 PM

So sums it up! Just add kissing the floor a lot daily to that.

Apr 18, 2016 8:08 PM

Kamel..I've had to add that too..legs just stop working with no notice.

Apr 18, 2016 8:13 PM

I feel you

Apr 18, 2016 8:24 PM

That was so true. I had to laugh at the road rage. I was in a car with a friend from Russia when he yelled "everyone in front of me is my enemy" (add the accent :) It took me back to the place and time. I thought I was going to die but it was funny. Well it is funny now anyway. Have a great day all.

Apr 18, 2016 8:36 PM


Apr 18, 2016 11:54 PM

Thank you for sharing... Now if only our docs would believe it!

Apr 19, 2016 1:31 AM

I'd say post anyway! The less we say to make others more comfortable, the less we are understood. Then again I'm in my insomnia stage so I could very well be super cranky.

Apr 19, 2016 4:58 PM

Cranky day for me too - hey we all have them! I'm surprised my attitude isn't horrendous EVERY day due to my constant pain levels! Great description of just one day!

Apr 23, 2016 2:32 PM

I'm 33 and that pretty much sums up my day every day I had a knee replacement in October and a fall on the ice in January I swear there's something wrong with my knee cap and my orthopedic surgeon won't listen to me I'm in so much pain and I'm so tired that I can't do the things that I used to I'm limited with house cleaning and cooking and taking care of pets grocery shopping it all wiped me out and then I go to bed and wake up and it's all the same thing over again like Groundhog's Day I was told because of my age that pain management isn't an option so I take gabapentin 3 times a day and 15 milligrams of OxyContin twice a day which takes the edge off but about 10 hours into the first dosage of my medication on it wears off I'm in so much pain that I have to lay down in bed no one to listen to me and everyone thinks it's in my head which makes me feel like I'm crazy

Apr 23, 2016 9:13 PM

This is great. It explains a chronic pain suffer's normal day so will.
I expecially agree with the part were you try not to hurt the person who acts like you must be getting better because you managed to make it to dinner or anywhere out of the house that rquried you wear a bra.

May 17, 2016 10:10 PM

Wow.....that sounds about right only one thing the pain gets worse instead of getting less

May 19, 2016 6:24 PM

This is me daily. I'm forced to keep working, disability has denied me twice. Everyday gets harder and pain increases. I get wknds off and occasionally I spend that time resting. I usually do my housework but last wknd was a bad one, I didn't do anything other than rest

May 24, 2016 1:14 PM

Yeh pain everyday. Nerves on edge and so irritable.every noise sounds amplified and that causes stress. VICIOUS CIRCLE !!

May 24, 2016 5:29 PM

If I say I'm cranky, my husband will say "you better not be." It is then that I feel the huge roar that starts in my heels & builds such power as it travels up my body to annihilate him. Redrum

May 24, 2016 5:52 PM

Perfectly described

May 24, 2016 10:07 PM

Well said! Taking a shower is a huge accomplishment! That takes many spoons for me. I can't cook or do most housework because I can't stand for more than about a minute. I don't bother with beds or sofas recently, I'm just on the floor. It's so hard to explain unless you have felt it before. I'm grateful for this community as I feel understood for the first time in a long time. πŸ’Ÿ

May 29, 2016 12:42 PM

Hi I just new to this webpage thank you for sharing I cry most days I go to sleep pray to god to heal me then morning comes I half open my eyes from exhaustion wondering did he heal me no it's still there I feel like screaming I've had enough it shoots out my thighs like a knife I keep thinking I had an operation and surgeon left an knife inside my stomach I have two disc bulges and anneleur tear some nights I don't want to b around to go thru next day I can't think of anything else this condition frightens me so much and annoying thing is on my mris it says minor oh it's only minor yet my pain management consultant says I'll get more debilitated over time and no intervention can help me medicine wise or surgically I often angry at god cause I Think well yours was over in a day my pain and others is everyday of ever week it even stabs when I talk I can't lift even if it's litre of milk I have to drop it fast cause stabbing gets worse I so want to work and can't I got this way trying to save a woman from falling

May 29, 2016 12:45 PM

And I forget to add this people see me walk and say god I saw u out walking swinging your arm just cause I'm walking and I in desperate pain it's coming out my fingers as I write this thanks everyone

May 29, 2016 3:57 PM

Yep about covers my days except when I start moving out my bed I wait for the joints to slot back into where they should lol

May 31, 2016 10:18 PM

Well put you've summed up my day as well for me plus a few insensitive statements from my boss or others, mean comments from " loved ones" or a comment from someone who thinks I am not handicap enough to be parking in a handicap space. Isn't like grand for us chronically ill.

Jun 01, 2016 12:05 AM

Exactly what its like. I'm going through the very slow process of being diagnosed. When people can't see your pain or illness, they don't believe you. I suggested Fibro to my Gp & Neurologist & both didn't want to listen, even though its the only thing that fits all my symptoms. 'sigh'πŸ˜–

Jun 22, 2016 9:19 PM

That's me Plz place on fb to inform others if what life is truly like for us everyday

Jun 25, 2016 10:48 AM

That's about right. It takes me about 2 hrs to get into the shower after waking up if I even shower at all that day! And I can't work any longer but I still don't usually cook dinner. It's never been my favorite thing to do but now it requires so much energy and strength that I don't have. My son usually does the cooking and I assist lol

Jun 25, 2016 11:17 AM

I can relate to that...lol....recently I have been getting tired easily by walking ....I been thinking in askingthe Doc.for a wheelchair. ..I can't even go grocery shopping at Walmart without my legs hurting so bad it's ridiculous. ..this pain is so unbearable and unbeatable. ...all I can do is make jokes to be able to laugh instead of crying

Jun 25, 2016 2:26 PM

Hil66 have you ever used the chairs they have at the grocery stores. I've had to breakdown and use them. It's helped my shopping trips a lot. Although,expending engery at all is a major task now a days.

Jun 25, 2016 2:44 PM

Yes,I have I had a bad experience I actually ended up under the clothes. ..lol

Jun 25, 2016 2:47 PM

Lol..well it takes some getting use to. At this point I've gotten to where I can do a zero turn in the middle of the isle.

Jun 25, 2016 2:49 PM

Lol that sounds like fun..
I really think it was or is my pride I get embarrassed even to use the walker or the cane it takes a lot out of me to admit that I need help and I am seriously sick

Jun 25, 2016 2:55 PM

Oh..u preaching to the choir. I'm right there with you. I'm just now getting to a point t where I'm allowing my body to be sick. It's been sick for almost four years now but just the last two are when this happens hit critical mass. And even then and now I fight against myself. But I always end up in worse shape. I'm in physical therapy now and my therapist has told me that I'm working to hard. Many times he had to put restrictions on me.

Jun 25, 2016 3:31 PM

Hil66 I finally did ask my dr about a wheelchair because I can't go grocery shopping or even clothes shopping for that matter. He said he didn't want me to have a chair because people end up becoming dependent on them and stop walking. He wants me walking as long as possible. He is thinking one of those walkers that have the seat. Deal is, I have CRPS in my arms/hands also. I don't know that I could handle using a walker. For now I only go to the store on my really good days. I have had to break down and use the store wheelchair but it's so humiliating for me! I really don't want to end up in a chair.

Jun 25, 2016 4:42 PM

Humiliating it is......that's what they told me to walk as much as possible until I couldn't stand the pain....now they want me to stay off of them ....honestly I don't understand what they really want I do as much as I can then I sit down and cry because the pain gets to be to much....
Thanks you all for letting me vent...

Jun 25, 2016 5:15 PM

I understand! I feel like if I used a chair for the bigger walks that it would actually help me to walk more and keep that leg from flaring up. Does that make sense? Plus then I could enjoy going to craft fairs and things with my mom and sisters. Now I don't even go so they don't have to deal with me if I can't make it thru.

Jun 25, 2016 5:23 PM

Six flags is right around the corner I don't even know if I will be able to do what my kids expect me to...I tell you it is so card for me I guess within time I will get used to it ...

Jun 25, 2016 5:26 PM

I took my kids to the zoo in April. I had been wanting to for such a long time. I decided I was going and nothing would stop me but I make sure that they had wheelchairs just in case. I actually made it thru the whole thing! Towards the end I would sit every chance I got and let the boys go look at the animals but it was a memory made!!! I wish you the best of luck at Six Flags. That is quite an undertaking! Rest plenty before so you can try to save up some spoons!

Jun 25, 2016 6:03 PM

My fibro fog seems to be getting worse too, which scares me. When I bake or cook ,I sometimes kneel on a chair which helps alot

Jun 26, 2016 11:20 PM

This is pretty much how I live my days! Except the driving part, I can't drive anymore as I find sitting is a massive task for me. But well said!

Jun 27, 2016 1:02 AM

There is a Doctor I am following. Jarred Younger, Ph.D., in Alabama, who specializes in fibromyalgia. There is a great article, 'Prisoners of Pain', by Katherine Shonrsy, October 22, 2015.

Jun 27, 2016 3:06 AM

@newfibrogirl and all,
You're in my head! This pain is crazy. With no notice -I could be sleeping or innocently going about my day when Bang! Pain hits like a locomotive. Legs hurt so badly I want them cut off. Or Wham! IBS puts me in more pain than childbirth. Or ZingπŸ‘Ή my back goes into spam, or my joints all feel electrocuted. Etc. Etc. And yes, there's more PAIN every day. Still I feel depressed because the judge inside me says there's no excuse for not doing the housework or cooking or working or any of the things I used to do. Even when all of this hurts at once- often for most of my waking hours. It hurts
No matter what I do, standing or walking or sitting or sleeping. And I'm rarely if ever myself any more... I don't think well but usually don't know it until I've done some really nonsensical things.
I'm going to look for the article you mentioned. Thank you. I hope this does get out on FB.

Jun 27, 2016 10:17 AM

I hope something works for you...I feel your pain, your NOT ALONE...think of that when you're depressed. I get depressed alot also. I have always been very active, I don't see my friends anymore because they don't understand. And we won't even talk about the house. I love a clean house a beautiful garden, when I try to do these things ,I'm worse, I just want to scream I CAN'T DO THIS. But I won't let myself feel that way. So I do it and hurt more, do it and hurt more ,etc...I wish ALL OF YOU WELL, my prayers I'm sending your way. There is alot of us, I'm glad I'm not alone. I used to think I was a hypochondriac, but since then (10 years now) I'm worse. So I now know it's real. I wish more Doctors would take it seriously!

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