The "Damn, I hurt!" Thread

[Mark_Ilaan]

I had a wonderful doctor but I was also lucky enough to have a sister with fibro and she told me to talk to the doctor about it. Kat and I go through a bunch of the same things, both missing gall bladders, both have chronic kidney stones, both with fibro. I had a dog that I had to have put to sleep because she had a cancer starting in her right front leg. A month later, my sister's dog had to be put down for the exact same thing. It's a bit spooky.

Hi, beautiful. Hope you feel better soon and I'm sorry about your dog.

 

[ABSTRUSE]

Chronic migranes. And the fiance has Fibro also. I htink we should form a Lit "Living with Fibromyalgia" group...

I like that idea, they think I may have that.

Pain can change who you are at times.

 

[BlackShanglan]

Ever heard things like these?

"Nobody likes a whiner."
"Suck it up and get on with it."
"So you hurt--we all hurt!"
"You don't look like anything's wrong with you."

So, most times we just swallow the pain and soldier on.

But there oughta be a thread where those of us living with chronic pain can come and scream, blow off some steam, bitch, whine, kvetch, and just maybe learn something that will help.

It's a good idea to question others' assumptions now and then. I spent 20 years with undiagnosed IBS because in my childhood I was told over and over that pain wasn't pain, it was "discomfort" and I should stop being a baby. That message was so effectively ingrained that even after the SO found me semi-conscious on the floor of the shower and threatened to call an ambulance, I was still hesitant to trouble a doctor. Thank goodness I went; at least now I can avoid the worst of it by keeping a careful eye on what I eat.

Hmmmm

Perspective.

Amen to that. It's good to have a kick in the rump now and then to remind me that there's a lot worse out there.

The IBS itself, at least for most of my life, hasn't been too difficult a cross to bear. Just a mild noodge to learn patience and a little discipline. The more recent development has been trickier - constant (as in 24 hours a day for a month, and immediately recurring if I stop the medication) nausea and dull lower abdominal pain. The medication controls it, but also makes it difficult for me to concentrate and think clearly, and leaves me listless and sleepy.

Hooves crossed. I'm meeting with my doctor next week and hoping that we might find another way to come at this thing. It's been nearly four months now, and not being able to do almost any serious writing has become very painful in its own way.

 

[BlackShanglan]

Five years ago, I would've lived in this thread.

This is a rare moment when I will be delighted not to see you on a thread.

 

[Vermilion]

You know what I really *really* hate...? It's when I try to explain my illness and I get comments like 'yeah, I get really tired sometimes' or 'so? everyone gets tired'

It's not tired - it's fucking exhaustion and it goes on day after day after fucking day.

 

[ABSTRUSE]

It's a good idea to question others' assumptions now and then. I spent 20 years with undiagnosed IBS because in my childhood I was told over and over that pain wasn't pain, it was "discomfort" and I should stop being a baby. That message was so effectively ingrained that even after the SO found me semi-conscious on the floor of the shower and threatened to call an ambulance, I was still hesitant to trouble a doctor. Thank goodness I went; at least now I can avoid the worst of it by keeping a careful eye on what I eat.

I get that!
I grew up with 'growing pains'. My legs would hurt like hell. I would be in tears. My parents would rub my legs with alcohol to try and help me sleep.
I still have those pains, now its arthritis and possibly fibromyalgia. At least its not in my head.
I too wait until the pain becomes unbearable to really do something because in my mind there are other people who have worse pain than I do.
I learned how to measure and tolerate my pain. I've accepted its part of my life and I live with it, only now I've learned its okay to say....jesus this hurts and I want it to go away, what do we do next?

I like the idea of a place where you can whine and others know what you're talking about.

 

[carsonshepherd]

meralgia paresthetica - hey, what the hell is that? constant nerve pain in the hips and outer thighs, sometimes getting into the sciatic - it's not debilitating, but it is very tiresome. Especially annoying at night, when I can't sleep on my sides, or I turn to the side in my sleep and wake up with a numb leg.

Also, constant TMJ pain in the sides of my face, right under my ears. It's gotten better over the last couple of years, but for some reason has been acting up lately. Giving up chips, tacos, chewy bread and the like has helped.

I've been thinking about trying acupuncture for the hip pain.

 

[BlackShanglan]

You know what I really *really* hate...? It's when I try to explain my illness and I get comments like 'yeah, I get really tired sometimes' or 'so? everyone gets tired'

It's not tired - it's fucking exhaustion and it goes on day after day after fucking day.

Yes, that is a particularly tedious response. That and I often get armchair diagnoses / recommendations for treatment, which are frustrating in their own way. I know they're well-intended, but the problem in my case isn't a lack of possible explanations. It's trying to work out which of a hundred possible alternatives or approaches to focus on. It's confusing even without the medication muddling my wits.

Still, like Abs says, you do build up some strength. Going in to minor surgery, I was given the 1-10 pain scale talk; they looked a bit startled when I rated my post-operative discomfort as a "2 to 3" with the nausea accounting for most of it and later starting laughing and tapping my incision site to see if it really hurt that little. As Recidiva once said, the bad stuff can make other pain look rather amusingly cute - "Aw, look! It's trying to hurt!"

 

[Vermilion]

Yes, that is a particularly tedious response. That and I often get armchair diagnoses / recommendations for treatment, which are frustrating in their own way. I know they're well-intended, but the problem in my case isn't a lack of possible explanations. It's trying to work out which of a hundred possible alternatives or approaches to focus on. It's confusing even without the medication muddling my wits.

Still, like Abs says, you do build up some strength. Going in to minor surgery, I was given the 1-10 pain scale talk; they looked a bit startled when I rated my post-operative discomfort as a "2 to 3" with the nausea accounting for most of it and later starting laughing and tapping my incision site to see if it really hurt that little. As Recidiva once said, the bad stuff can make other pain look rather amusingly cute - "Aw, look! It's trying to hurt!"

<nods>
I'm like that with tiredness. I can actually function when most people would give up and go home - because I have to, even though it's ... there isn;t really a word.

Pain on the other hand - that scares me. Pain is worse because of the tiredness. Even the tiniest injuries are agonising. Bodies are the most ridiculous things, aren't they?

<hugs to everyone> We are a sorry bunch, aren't we?
x
V

 

[Guest]

Not the same scale.

But valid. Having a past of addiction and avoidance of life through - "pain/illness" because of poor mental health - I'm always second guessing myself.

I changed, grew, and now it's quite difficult to share/unload these things.

I try to ignore little pains, and then they grow to big ones.

For a year now I've been dealing with possible rotator cuff injury in one shoulder (that's been coming on for years, I think) and tennis elbow on the opposite arm - minor on the scale but chronic. Every day, every hour I am reminded. When I want to to things, it's always there.

I have to stop in the middle of "things" :wink: because I just can't support myself/move my arms, etc.

It brings me to tears sometime, because the only thing I've been able to do for it is dose myself to the gills with narcs, and well - considering my past - my doc keeps a pretty close watch on that, and well - I'm sure my tolerance for codiene is off the scale.

Never mind the damage I'll be doing to my liver.

Anti-inflammatories don't seem to touch either problem. I've done physio, chiro, massage - exercise (within the pain tolerance) changed my work ergonomics - everything that's been suggested. Nothing but getting worse, and now I feel it without moving.

Finally I am seeing an orthopedic surgeon tomorrow. With an article in my hand talking about gender-bias for surgurey here in Canada.

I'm gonna get him to look at my neck too - got a pretty little rear-ender three weeks ago and I'm still not right.

The problems I have are probably fixable. Still - it will take another 6 month minimum to get into the chop shop, even if I convice this guy I need it. But it has been a long time, and in the meantime there are days where I will have to go into a dark room and cry.

I cannot begin to understand what you all are going through - I've had the gall bladder excized, female parts removed, pretty nasty stuff, but once again, it was fixable. I am blessed.

For you with long term, chronic, non fixable stuff - I can't say I know how you feel, but I feel for you. *gentle squeezes for everyone*

 

[BlackShanglan]

*nuzzles* Good to see you, Babygrrl, and I'm sorry to hear about your health problems. They don't have to be worse than anything anyone else can come up with to be painful and disabling.

Sometimes I think that that is part of the difficulty from both the patient and the doctor perspective. We look at a hospital full of people with severe injuries and life-threatening illnesses and feel awkward about complaining about anything that's not actually gushing blood or leaving us completely bedridden. It's good to have a sense of perspective, but it's also good to have some determination to achieve some quality of life. It's all right to want problems fixed.

On the surgery issue - that's an interesting article you mentioned. I don't suppose that you've got an electronic link anywhere, do you? I've seen written materials about pain indications in patients that state that women are more likely to complain of pain than men are, and I suppose that as an average thing it's useful to keep in mind that a male patient might not be as open about pain he's experiencing. However, I'd hate to see that lead to doctors making the opposite assumption - that women who complain of pain shouldn't be taken as seriously. If nothing else, statistical averages are notoriously poor indicators of any specific person's actual state. You could be talking to a woman like Abs who is more likely to low-ball pain after a lifetime of constant exposure to it.

 

[LadyCibelle]

Gentle Hugs Lady C.

Thank you, beautiful.

Very gentle.

And a few for you too.

x 12

Thank you, DP.

Chronic migranes. And the fiance has Fibro also. I htink we should form a Lit "Living with Fibromyalgia" group...

I love your idea,JL.

Chronic Migraine
Chronic Head Ache
Screaming nerve pain in arms
A return of severe Infection called Mastoiditis...
and other things too numerous to mention
Hugs to you all

Christa, beautiful, sweet and kind, Christa. You should still be in bed and rest. What you went through those past few days require that you rest plenty.

But I know, you won't. so even with the pain, tiredness and aches, here's a couple and a huggles for you.

Chronic Fatigue Syndrome here. Coming up to the 8 year mark and I'm only 24.
Am feeling rather worse than usual right now because I just had an MLD treatment but, as I said in the blurt thread, at least that means it's doing something.

Might be worth considering for you, LadyCibelle - it's moved so much fluid off me that the fiance exclaimed in surprise when I got home at how slim my face looked.
PM me if you want info

x

V

Sending a PM in the next few minutes, Millie; thanks

I love it when they ask that stupid question. ON a scale of one to ten, where's your pain? Fifteen woman, okay?!

I'll be 34 this month and I feel like I'm ninty most days. It sucks.

Yeah that's a question that can get me see red. You want to know how in pain I am, dumbass! Picture yourself under a ten ton truck that keep going forward and back and your legs and back. Then picture yourself lifting that same ten ton truck with just your arms and shoulders. Pictures yourself not having slept for the past 3 weeks, how tired you would be, how cranky and impatient you would be? Well, dumbass; that's how I've been feeling for the past 3 years!!

I'm just so glad they finally got you diagnosed. It's terrible, feeling the pain of fibro and not knowing why you have the pain.

You're then one who pointed me in the right direction, beautiful. You deserve all the praise and thanks. If I hadn't mentionned to my doc and if he hadn't listened to me and start the ball rolling I'd still be in pain and think that it's all in my head.

You know what I really *really* hate...? It's when I try to explain my illness and I get comments like 'yeah, I get really tired sometimes' or 'so? everyone gets tired'

It's not tired - it's fucking exhaustion and it goes on day after day after fucking day.

Oh, God! Yes! I even get that kind of question from my parents, they don't seem to understand what I'm saying. They seem to think that if I went to bed at normal hours I wouldn't be so tired and in pain. As if I'm going to bed at ungodly hours just because I want to!

 

[Daniellekitten]

What I hate the most is those that roll their eyes when I tell them that I have fibro and it keeps me awake for days at a time. They say there is no such disease and I'm just whining. Fuck that. I'll let them experience what I go through anyday of the week and if they can handle it better than I do, they are welcome to it. I'd love to be able to take my dogs for a walk down to the park and let them play but between my back and the firbro, it's pretty much impossible. I'd like to be able to get on the floor and play with my dogs without having the problems getting up and then worry about how it will affect me the next few days. So when people say fibro is just a wussy excuse, I get pissed off.

 

[TxRad]

Shang

Pain is pain but my thinking on the scale thing is that men in general deal with pain more often than women and build up a tolerance. This not to say that it doesn't happen with women but the odds are better in most cases. I can't really remember not being in pain since the early 70's when I came back from Nam the last time.

When doctors ask me if it hurts I smile at them. What I consider a dull ache would put most grown men on their knees. My present doctor is ex military. He doesn't ask for scales, he just asks what hurts the worse and the least. Then he wants a comparison of the two.

He wants to do surgery on my left shoulder and remove my right big toe to scrap the calcium out of the joint. The calcium is so bad now that it limits the movement of the ligament on top of my foot. Maybe someday I'll let him but for now my pain keeps me moving.

Pain is relative and then again some relatives are pains so it balances out.

 

[LadyCibelle]

What I hate the most is those that roll their eyes when I tell them that I have fibro and it keeps me awake for days at a time. They say there is no such disease and I'm just whining. Fuck that. I'll let them experience what I go through anyday of the week and if they can handle it better than I do, they are welcome to it. I'd love to be able to take my dogs for a walk down to the park and let them play but between my back and the firbro, it's pretty much impossible. I'd like to be able to get on the floor and play with my dogs without having the problems getting up and then worry about how it will affect me the next few days. So when people say fibro is just a wussy excuse, I get pissed off.

Yeah those too. Or how going grocery shopping is quite an ordeal because I have to sit, squat or bend in two to relieve some pressure in back and people are looking at me like I'm a loony.

How entering the hospital for tests, the first thing people see is an 'apprently" healthy 40 yo woman who walks like she's ninety and holding herself on the wall so she can put one foot in front of the other. How walking the distance from one department to the next takes me 10-15 minutes when it should take 3-4 at the most. How after walking from department to department I'm sweating like a pig over the overexertion I've just put my body through.

What hurts the most? It's seeing the disgust in my kids' friends' eyes because I'm 'once again' in my Pj's or napping on the sofa. It's hearing those same kids whisper to my children that their mother is a slob and having my kids defend me to them. THAT hurts the most.

 

[Daniellekitten]

Yeah those too. Or how going grocery shopping is quite an ordeal because I have to sit, squat or bend in two to relieve some pressure in back and people are looking at me like I'm a loony.

How entering the hospital for tests, the first thing people see is an 'apprently" healthy 40 yo woman who walks like she's ninety and holding herself on the wall so she can put one foot in front of the other. How walking the distance from one department to the next takes me 10-15 minutes when it should take 3-4 at the most. How after walking from department to department I'm sweating like a pig over the overexertion I've just put my body through.

What hurts the most? It's seeing the disgust in my kids' friends' eyes because I'm 'once again' in my Pj's or napping on the sofa. It's hearing those same kids whisper to my children that their mother is a slob and having my kids defend me to them. THAT hurts the most.

I've heard Steph tell her friends, she doesn't sleep much so when she does, we have to keep it quiet, but then again, when Steph talks to friends she hasn't seen in a while, their first question always is, how's your sister?

Steph has decided to go to school close by so she can keep living with me to help me out. Is she a great sister or what?

 

[Guest]

*nuzzles* Good to see you, Babygrrl, and I'm sorry to hear about your health problems. They don't have to be worse than anything anyone else can come up with to be painful and disabling.

Sometimes I think that that is part of the difficulty from both the patient and the doctor perspective. We look at a hospital full of people with severe injuries and life-threatening illnesses and feel awkward about complaining about anything that's not actually gushing blood or leaving us completely bedridden. It's good to have a sense of perspective, but it's also good to have some determination to achieve some quality of life. It's all right to want problems fixed.

On the surgery issue - that's an interesting article you mentioned. I don't suppose that you've got an electronic link anywhere, do you? I've seen written materials about pain indications in patients that state that women are more likely to complain of pain than men are, and I suppose that as an average thing it's useful to keep in mind that a male patient might not be as open about pain he's experiencing. However, I'd hate to see that lead to doctors making the opposite assumption - that women who complain of pain shouldn't be taken as seriously. If nothing else, statistical averages are notoriously poor indicators of any specific person's actual state. You could be talking to a woman like Abs who is more likely to low-ball pain after a lifetime of constant exposure to it.

http://www.canada.com/theprovince/news/story.html?id=d8e9e56e-2b1e-44c5-b028-6c8338c7c889

Damn - logged out and I just typed a crapload of stuff.

There's the article, anyway.

 

[Guest]

Shang

Pain is pain but my thinking on the scale thing is that men in general deal with pain more often than women and build up a tolerance. This not to say that it doesn't happen with women but the odds are better in most cases. I can't really remember not being in pain since the early 70's when I came back from Nam the last time.

When doctors ask me if it hurts I smile at them. What I consider a dull ache would put most grown men on their knees. My present doctor is ex military. He doesn't ask for scales, he just asks what hurts the worse and the least. Then he wants a comparison of the two.

He wants to do surgery on my left shoulder and remove my right big toe to scrap the calcium out of the joint. The calcium is so bad now that it limits the movement of the ligament on top of my foot. Maybe someday I'll let him but for now my pain keeps me moving.

Pain is relative and then again some relatives are pains so it balances out.

Tex - at first I wanted to slug ya re: "amounts" & "tolerance".
*smile* But you're just so damn beautiful...

Then I am reminded of my husband on our wedding day.

The night before he went to a martial arts course and damn near broke his ankle. Did anyone but me know the next day? Nuh - uh.

 

[Vermilion]

<big hugs to you all>

I don't know why it should help to read of other people who are having as much trouble with their health as me, but it does. It's upsetting, but, like when I was diagnosed, it's so comforting somehow to know that other people are going through difficulties like me.

Does anyone else have trouble associating the word 'disabled' with themself? I do and I don't know if it's the implications that that word has, or whether it's because my illness is so variable and some days I am almost fully able, whilst others I'm crippled. The word is so loaded though, isn;t it?

Another thing I hate? When I am shattered, I have to do the food shop or otherwise we don;t eat, so I park the car in the disabled bay and fish out my badge. As soon as I get out the car people tut, shake their heads, crane their heads to see if I have a badge. A couple of people have even confronted me about it. How fucking dare they? I had to fill out a comprehensive form and undergo a medical examination to receive that badge. If they felt I deserved what right is it of yours, Mrs. Interfering Busbody, to question me? When I'm on my own I ignore it, but the fiance gets really indignant on my behalf. Sometimes I fake a limp or exaggerate my trouble getting out of the car just to stop the comments before they start.

x
V

 

[ABSTRUSE]

<big hugs to you all>

I don't know why it should help to read of other people who are having as much trouble with their health as me, but it does. It's upsetting, but, like when I was diagnosed, it's so comforting somehow to know that other people are going through difficulties like me.

Does anyone else have trouble associating the word 'disabled' with themself? I do and I don't know if it's the implications that that word has, or whether it's because my illness is so variable and some days I am almost fully able, whilst others I'm crippled. The word is so loaded though, isn;t it?

Another thing I hate? When I am shattered, I have to do the food shop or otherwise we don;t eat, so I park the car in the disabled bay and fish out my badge. As soon as I get out the car people tut, shake their heads, crane their heads to see if I have a badge. A couple of people have even confronted me about it. How fucking dare they? I had to fill out a comprehensive form and undergo a medical examination to receive that badge. If they felt I deserved what right is it of yours, Mrs. Interfering Busbody, to question me? When I'm on my own I ignore it, but the fiance gets really indignant on my behalf. Sometimes I fake a limp or exaggerate my trouble getting out of the car just to stop the comments before they start.

x
V

Been there.
I hate telling people I'm on disability, they immediately look at you to see if you have fake limbs or something. Part of my disability is my depression.
I have good days and bad days like everyone else. I don't feel the need to explain my pain to them.

 

[Daniellekitten]

<big hugs to you all>

I don't know why it should help to read of other people who are having as much trouble with their health as me, but it does. It's upsetting, but, like when I was diagnosed, it's so comforting somehow to know that other people are going through difficulties like me.

Does anyone else have trouble associating the word 'disabled' with themself? I do and I don't know if it's the implications that that word has, or whether it's because my illness is so variable and some days I am almost fully able, whilst others I'm crippled. The word is so loaded though, isn;t it?

Another thing I hate? When I am shattered, I have to do the food shop or otherwise we don;t eat, so I park the car in the disabled bay and fish out my badge. As soon as I get out the car people tut, shake their heads, crane their heads to see if I have a badge. A couple of people have even confronted me about it. How fucking dare they? I had to fill out a comprehensive form and undergo a medical examination to receive that badge. If they felt I deserved what right is it of yours, Mrs. Interfering Busbody, to question me? When I'm on my own I ignore it, but the fiance gets really indignant on my behalf. Sometimes I fake a limp or exaggerate my trouble getting out of the car just to stop the comments before they start.

x
V

My sister cares for my mother and she has handicap plates for her car. We go anywhere and I tell her she doesn't need to use them for me but she does anyway. I've gotten some of those same looks. It helps when I bring my cane with me but I hate the damn thing and hate to use it. I'm too young to have to use a freaking cane which is the reason this is my second one, I ran the first one over with my car.

No one deserves those looks or to have others bash them for their problems.

 

[LadyCibelle]

My sister cares for my mother and she has handicap plates for her car. We go anywhere and I tell her she doesn't need to use them for me but she does anyway. I've gotten some of those same looks. It helps when I bring my cane with me but I hate the damn thing and hate to use it. I'm too young to have to use a freaking cane which is the reason this is my second one, I ran the first one over with my car.

No one deserves those looks or to have others bash them for their problems.

Too true, but unfortunately what people see is splendid looking women who look fit, healthy, and they can't reconcile it with what they don't see; the fact that it took us hours just to get ready to go out because we have to stop every few minutes because we're too tired or too much in pain.

 

[Vermilion]

Too true, but unfortunately what people see is splendid looking women who look fit, healthy, and they can't reconcile it with what they don't see; the fact that it took us hours just to get ready to go out because we have to stop every few minutes because we're too tired or too much in pain.

Not to mention the 2 inch thick layer of makeup and blusher we put on because the last thing we want is to bloody well look as shitty as we feel. Being ill doesn't mean you lose pride, self-respect or the desire to look attractive. I have to be *really* fucking ill to go out without blusher and mascara *at least*.

x
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[LadyCibelle]

Not to mention the 2 inch thick layer of makeup and blusher we put on because the last thing we want is to bloody well look as shitty as we feel. Being ill doesn't mean you lose pride, self-respect or the desire to look attractive. I have to be *really* fucking ill to go out without blusher and mascara *at least*.

x
V

Weird as it may sound, I'll be ecstatic the day I'll feel like that These days the most I can do wear a ponytail, put on my sunglasses and look down because I don't want to see reprobative look in people's eyes.

 

[BlackShanglan]

Pain is relative and then again some relatives are pains so it balances out.

*laugh* Nice one, Tx.

I suspect you're right ... on the average. What worries me is when what's true of the average gets mapped directly onto the individual without some checks to see if the individual fits the average trend. The average genderless horse might express pain in lesser or stronger terms, but then the average genderless horse is two hands shorter, a degree of body temperature higher, and can eat a wide variety of things that I can't. I'd hate for my doctor to let averages dictate too much of his approach to me.

What I hate the most is those that roll their eyes when I tell them that I have fibro and it keeps me awake for days at a time. They say there is no such disease and I'm just whining.

I worry about this a lot. IBS is, thankfully, more comonly recognized, but because it has no identifiable cause or mechanism, I'm always a bit anxious about whether even my doctor will accept what I say about it, as we have only my own word to go on. Thank heavens, the doctor and the SO have been absolutely stellar. It means the world to me to have their support.