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How Do You Describe Your Pain?
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Christine Miserandino posted:
I hear it all the time from doctors and nurses: "Tell me your pain on a scale from 1 to 10". I always cringe at the thought of summarizing my pain and fatigue down to a number. I also get scared at the thought that I have never felt below a 4 or 5.

We all know that pain and fatigue is different for everyone. Some people who have lupus use great adjectives to describe their pain, like a "piercing" pain in their shoulder, or an "achy" pain that feels like they're bruised all over. I've found that using descriptive words helps others understand my pain because I'm painting a better picture for them to relate to and understand.

We all have ways to communicate how lupus affects our lives. As an example, I once used a handful of spoons to describe to a friend what it was like to live with lupus and to be forced to make certain choices when it comes to performing the everyday activities that most people take for granted. People with lupus have to parcel out their daily activities and tasks because they often aren't able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my "spoon theory" with family and friends as they ask me how many spoons I have left, or even give me spoon gifts to brighten my day.

I know that as much as I try to communicate what I'm going through, it sometimes feels like only other people living with lupus really get it and understand. That's why message boards like this are so important.

What methods have you tried to explain what living with lupus is like? How do you describe your pain to others? Do you use the pain scale, descriptive words, or maybe that chart with all the expressive faces on it?
- Christine Miserandino
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lupylisa44 responded:
I usually say " Remember in the movie Rocky, when he was beating up the cow (side of beef)...I'm the beef!"
With love, with patience and with faith, we'll make our way.
 
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lisaisweavebee responded:
When I'm asked about my pain level, I usually tell them that I am barely 5 feet tall, but I gave birth to a 9 pound 14 1/2 ounce boy that caused me to tear and lose vast amounts of blood (had to have 5 emergency units!) and I almost died....and then I say "I wished I felt that good right now !"

Lisa
 
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Andie_WebMD_Staff replied to lisaisweavebee's response:
Hey there Lisa and Lisa...

Ugh! The pain you must feel everyday has got to be so overwhelming sometimes. I admire each of you for your strength to get up and keep going...and still keep a sense of humor!

Have either of you ever used Christine's Spoon Theory to describe your pain? Sometimes others just don't get it, so maybe a visual would help them understand.

What other ways are there to describe your pain besides words?
 
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christianeby responded:
I don't have lupus but I do have RSD. I hate those pain scales also. It gets their attention when I say "What one stands for "I pray for death?" The room goes silent. Most of the time they don't know what to say but every once in a while, I get a person who says something like "It can't be that bad". How do I get them to realize that I am serious and one day, I will find that number and I will "cash in all my chips" and go home.
 
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Jude29065 replied to christianeby's response:
My mother has very severe neuropathy & ulcerated legs and
in terrible pain all the time.

When she found out she had throat cancer - she was OK with it as it meant she wouldn't have to live so long in pain with the neuropathy.

She flew home had a great time with everyone - saw all
her friends, ended up in the hospital and was told she
would never make it back here to us. But she did - we
had a blessed Christmas and then she was gone.

One to Ten can't even begin to gauge the pain some
are in and sometimes it is just a dumb question. But
sounds like there are a lot of wonderful people out
there who do understand and who care.
 
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Christine Miserandino replied to Jude29065's response:
Hi Everyone,

I find that when I use numbers to describe my pain level it is hard because something gets lost in "translation". I have learned that someone who is healthy and does not deal with pain on a pretty consistant basis might have a totally different concept of what a pain level 5 is. For them that might be pretty bad, but for me that might be average.

When not using "spoons" to describe my illness.... I have found using descriptive words, like throbbing, piercing, swollen joints etc. Or describing it by saying "I feel like I have the flu" this way they have something to relate to or imagine.

-Christine
- Christine Miserandino
 
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Kat_bet replied to Christine Miserandino's response:
I often tell people that I feel like I've been beaten with a baseball bat. Of course, many of them think I'm joking. I'm learning to use those descriptive words like 'throbbing', 'sharp', 'piercing', and 'achy'.

My daughter-in-law is a nurse and hates the 1 - 10 scale as much as I do. She works in the post-surgical unit, so she's dealing with a different type of pain, but she asks questions like, "Can you carry on a conversation?" "Can you sit still long enough to watch a TV show? a movie?" I know she's dealing with acute pain, but we can take a page from her book by describing what we honestly can and can't do with our level of pain at the time.
 
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mikeyBianculli replied to Christine Miserandino's response:
christine miserandino i have had lupus since i was 17 im 26 now and i have not been dealing to well.it has been a roller coaster ride to say the least. i was just starting to enjoy life when it hit i had a really bad car acident when it came out and since then lupus really did a # on me.it affected my kidneys,heart,and gave me avn of my knees and hips.i sort have pulled away from everyone i lost all my friends i grew up with and lost my job and my girlfriend since then not because i got sick because i with drew my self.i myself do not belong to a support group but after watching you i think there is some hope.i too live in ny,valleystream and i laughed so hard when u were talking about the dinners.thank you for doing what you do.
 
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Lupussufferersince15 replied to mikeyBianculli's response:
Hi I'm 22 and I've been dealing with Lupus for 7 years now. When I'm describing my lupus I get the question what's it like. I stop and try to think, then I go on to explain that my joints swell and hurt. My body aches all the time, there isn't a minute of a day where I'm not in pain. People start to realize when they see me struggle to get up because my knees are acting up. I look like an 80 year old woman who's healthy but aged enough to where her joints don't work as well anymore. Or when I'm walking in a way that hopefully won't jar my body too much, they ask me if I'm okay.
There are many times I've said "Yeah I'm fine, I just feel like I got hit by a bus before I woke up this morning that's all. I'm just waiting for the pain meds to take a little bit of the edge off. I'll be okay." I get worried looks and find myself reassuring them that I truly will be okay. It seems to hit them all at once when they first realize a little bit of what its like. Afterwards though they'll help me get up from a sitting position if my knees are locking, they'll pick up the heavy stuff that I can't lift sometimes, they'll even open the water bottle that apparently was sealed by the Hulk.
I've read the spoon method now and I might use it sometime if the time presents itself. It's a very good visual way to describe it. Most people don't realize that I have Lupus until I tell them, apparently I hide the pain well. One day though I'll need the spoon method when someone doesn't comprehend my other ways of describing it.
 
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1027sherbear responded:
My pain is many during the day. I experience more fevers than I used to. The flares are daily with the fever. The pain is there but you learn to say "FINE", because we get use to it. The fevers seem to bring on more fatigue. I really enjoy reading your memos and videos. Thanks for sharing.
 
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lisatru62 responded:
It's true that many lupus sufferers have constant pain that ebbs and flows, like the tide. I try and describe it in natural terms because everyone has taken the time to observe nature. Some days I wake up and the pain is in full force, like a tidal wave hitting me square in the knees. Other times it's just slowly comes on like storm clouds moving in.

I'm shocked and surprised that I can be in so much pain on a daily basis. I try and stay away from pain killers because of a fear of addiction that so many people talk about but it can get bad. Some times I wonder if it will ever go away.

Lisa T.
 
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Leigh1997 replied to lisatru62's response:
Hi Lisa,
My pain is the ebb and flow type. But, with age it has gotten worse. My doctor has prescribed pain medication but I only take it when I absolutely can't stand the pain and need to lay down. Otherwise I take Tylenol. My worse pain is in my hips, knees and shoulders. It can get pretty bad. My doctor said that he was not afraid I'd get addicted...that his fear is mostly that I might accidentally overdose. So, I'm extremely careful about taking the prescription pain pills. Take care.
Rita
 
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lisatru62 replied to Leigh1997's response:
Addiction is my greatest fear as I can't seem to get through the day without at least one pill. I have kidney nephritis and can't take any NSAIDs, bummer. I also have to watch my Tylenol intake because of my liver, bummer again. That leaves narcotics which are scary but work.

I never know how much is too much and the doctors won't give me an answer. They just say don't take more than prescribed but that seems like a lot. Do you have the same problem? Also how long will they keep giving me pills? At some point will they say I've been on them too long and tell me to live with the pain? My husband hurt his back and the doctor sent him to a pain class. No drugs, just using your mental calming powers to make the pain go away. I thought he was kidding but it's true, weird.

Lisatru62
 
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LupusJulz replied to 1027sherbear's response:
Hi,
I amso pleased to have found this site.
I'm new here. I am 46 years old and have had 'diagnosed' Lupus & Fibromyalgia for 4 years - However the symptoms have been rearing their ugly heads since I was 17.
Can anyone explain the cause of the fevers, the hot flushes.
I have at least 30 sweaty outbursts a day ( which makes life really difficult)
Why does this happen ????
Is there anything I can do to lessen these fevers????
Cheers to all
Julz


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