The Lame Dame

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Posts tagged with "fibromyalgia"

Feb 7

Heat Tones Down Central Nervous System Pain

Although people with fibromyalgia hurt all over, a patient’s most painful area can be the driving factor for determining a person’s overall pain level. Applying heat to the region of most intense pain may not only “feel good,” it can also bring down your fibromyalgia pain to more tolerable levels. And, if the widespread pain is keeping you awake at night, take a long hot bath or shower just before bedtime (better yet, sit in a hot tub). For local pains, apply topical heat to the area during the day or at night (e.g., microwavable heat wraps, heating pads, or ThermaCare wraps by Procter and Gamble).

 

*This is vital to my daily self care. Since using a hot tub daily (sometimes multiple times) I’ve been able to decrease the number of pain killers and muscle relaxers I need in a day, dropped my absences due to pain from once a week to less than one a month, and have greatly improved the number of hours slept, if not always the quality. I also take fewer NSAIDS, because my daily tension headaches are soothed in the tub.*

Random stranger overhearing crippled talk: “You have fibromyalgia? Oh, I USED to have it too […]”

chetivepoupeesouffreteuse:

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“I read this book, and stopped eating this and that, I prayed to the Lord and it CURED me, you should try it.”

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Jan 7

chetivepoupeesouffreteuse:

My rheum is sending me to see a psychiatrist to investigate the probability my fibromyalgia is just a somatoform disorder. I’m scared as hell. She said it won’t change my treatment because I don’t respond to antidepressants, but I will still be branded as mentally ill and other doctors probably will want to try and “cure” me.

Yes, I have some worries about my normal symptoms, because pain is a warning sign for your body, and when you always have pain, you lose that sense of warning, you never know if something is actually wrong or if you’re just having a flare up. Because you know I once lived 4 days with an infected kidney without realizing it was time to go to the ER and I could have lost my kidney. I think it’s pretty normal to be overly aware of every slight fluctuation in your symptoms, because the normal way to keep track of things is unusable.

Yes, I do know things about my illness, because I need to know when it’s the fibro acting up or when there is something worth worrying for.

Yes I try to monitor my pulse when I have chest pains and my body temperature when I feel overly cold, or overly warm, or when I just plainly feel like my insides are rotting inside me. Yes I am relieved when I see my pulse rate is a bit fast but it’s ok, and yes I’m as relieved when I see my body temperature is a bit low but at least I don’t have a fever.

Yes I write down every dose I take in the day in case I lose consciousness so that my health care practionners can know what to give or not to give me. Yes I keep track of my doses and know when my medication is starting to fail to do its job, because my liver is too efficient at doing its job.

Yes, I do go to school and try to do something with my life, because I lived years with feeling sorry for myself and resting and I was still in as much pain as I am now.

This would potentially mean I have a mental illness? Am I losing it?

Am I insane?

I don’t think sane/insane is a valid dichotomy for your situation. Whether your pain is caused by Fibro or by Mental Illness, it’s still valid pain, and you still deserve the best treatment. I had a spontaneous remission in high school, and when my symptoms came back I was given mental health care for the first two years, because my docs were convinced it was a somatoform disorder related to my PTSD, and not my Fibro flaring. 

Ideally, working with your medical doctors and psychiatric team will either cement a Somataform Diag, or poke holes in it, and bring you back to the diag drawing board. And having a somataform diagnosis does not mean you are imaging it, or it’s all in your head; it means your body is physically reacting to psychiatric trauma and pain. If any sort of treatment would allow me to return to a fully functional and pain free life, I’d try it (and I’ve tried them all) Don’t feel like a mental illness is the end of your life, it’s just another health concern, and should be treated as such. 

Best of Luck and Take Care. ~Kendall

Jan 7

Can we just talk about the reality of fibro fog?

heartofcathedrals:

I was in denial for a long, long time, but now I can’t ignore it. I forget everything, especially if I took pills or not or put deodorant on, and then I have to backtrack. Now I put my pill bottles in one place if I’ve taken them in the morning, and another place at night. Sometimes I go into rooms and forget why I went there in the first place. I’ve become hopeless at routines because I don’t remember them, which is an issue at work. Sometimes I just sit for minutes at a time trying to figure out what the hell I was going to do next. Writing papers is like pulling teeth because I can’t get things to make sense. I was an English major in college and writing was never this hard. I can’t be the only one.

Not the only one by far…

  • I put a key hook by my front door so I could get to work on time
  • I used a weekly pill bottle so I can SEE if I took my pills or not
  • I pick a keyword to remind me why I’m travelling, and repeat it until I get to the new room
  • I’ve written down step by step instructions for my job duties (ostensibly so someone could fill in for me if I need extended time off again, but really for my foggy days)
  • I carry around sticky notes to remind myself where I left off in a project, and what the next step is (to keep me from doubling my work)
  • I have two proofreaders to double check any correspondence I send out for the company, and I practice writing every night at home to keep the wheels greased
  • my biggest difficulties when foggy is spoken language, I can usually word salad my thoughts clearly enough to be decoded by the ones I love; but I feel a bit like a toddler when service people will blink at me and then ask my companion for a translation.

The daily battle…

bunnika:

laughingotter:

I am so sick of waking up in pain every day.

I think that deep down on an instinctive level, I believe when I wake up that this is the most refreshed and rested I’ll feel all day, and to wake up already exhausted and feeling as if I’ve been beaten by Ninjas in the night, and that they set fire to my skin, it just makes the thought of having to do… well, anything, so damn hard.

So every morning- EVERY MORNING- I go through this same battle. I want to call in. I want to go back to sleep under heavy blankets that for some reason lessen the pain.  Or if I can’t sleep, which let’s face it, is pretty likely, I want to read, or stare at the wall and stumble through my brain fog without having to try and lead anyone else through it with me.

But…

My logical brain reminds me, every morning, that my pain does tend to get more manageable during the day, until evening when it gets worse again..  And my checklists and reminders and notes at work will help me navigate the brainfog enough to successfully pass, almost, for the competent and intelligent employee I used to be.

And my logical brain reminds me that I have to feed my kids, which takes money, which means work since getting disability with a diagnosis of Fibro is so very, very hard. And work is actually a bit easier to live with on a daily basis than the fight to get disability benefits would be, at least for me, at least for now.

So, the battle moves from the mental to the physical.  I half fall out of bed, struggling to get my legs under me, my back straightened.  I shufffle to the top of the stairs, and grimly grasp the handrail as I carefully navigate each step, each muscle screaming at me. I start my shower, debating as I do every morning- hot water to ease muscle pain? Or cool water to ease the skin pain? Hot water usually wins.  

My shower done, I dress and then need to sit and rest. Showers are exhausting, but at least by now the muscle pain is somewhat better, and the battle is half over.

A few minutes of respite, and then I have to get my feet dressed, which in the summer isn’t so bad- sandals are my friend. But now in the winter, I have to fight with my boots, and it makes me cry..  Someday, I think the boots are going to win, and I’ll just call in.

But, I gather the lunch I made last night, the phone and tablet I charged last night, and I bundle up and head out the door.

I’ve won, today.  I’ll go to work, and I’ll stay there all day because it’s easier than admitting that I want to quit and hide from my pain in my bed, and then I’ll come home and somehow get through checking homework, making dinner, getting some housework done, before the nightly battle of “do I climb the stairs and sleep in my bed, or do I collapse in my recliner and pass out downstairs?”

Because one battle a day is not enough.

*so many hugs*

Even though I’m a million different kinds of dubious at the suggestion that I could have fibro, there’s still so much I can relate with here, and you don’t have my sympathy, you have my empathy and wishes and prayers for a day when it gets easier.

Maybe the day we build out Hobbit houses together and can live off the land and have legitimately wonderful, inspiring reasons to want to get out of bed and do things.  I imagine you’d rather help me tend the orchard than head into work, no?  ;-)

still not made it out of my blankets today :/

Painkiller Paranoia: The Stigma of Narcotic Use Among Chronically Ill Patients

chroniccurve:

Examining the fear behind proper narcotic use and what it really means to be chronically ill and using narcotics.

Read More

chronicallycrafty:

an afternoon of bracelet making.

chronicallycrafty:

an afternoon of bracelet making.

I’m so tired of people casually throwing the word ‘fatigue’ about.

quiltingqueer:

helloelloh:

rainbowspottedguineapigs:

Fatigue is not when you’re tired at the end of an 8 hour work day. That’s being tired.
Fatigue is not lacking energy at 6pm because you didn’t sleep well the night before. That’s being tired.
Fatigue is not looking forward to bed time because you’re tired after going to the supermarket, visiting your family, going to the gym and cleaning your house. That’s being tired. That’s your body’s rational feelings after doing a lot of activity, you’re tired.

Fatigue is when - after being awake for two hours and in those two hours you have only gone to the bathroom, forced yourself to ignore the nausea and eaten a small snack, and brushed your teeth - you feel like someone is sitting on your chest because breathing takes up more energy than you ever realised.
Fatigue is when you feel like your brain is shutting down and your eyes are going to fall out and your legs just will not move after forcing yourself to stay awake to finish that stupid essay.
Fatigue is the moment when you collapse on your kitchen floor when you’re trying to make dinner, when your energy levels reach the minus figures and for a moment you’re unsure if you’ll ever be able to get yourself standing again.
Fatigue is the restlessness, the frustration, the broken social life, the depression, the feelings that you are just sodding useless that comes with it all.

But I guess you can’t understand that until you’ve experienced it. Fatigue is a gut wrenching word and it changes your life forever.

Fatigue is when you’re lying in bed, bored and unable to do anything, so you go to trace a pattern on your sheet and the effort of lifting your finger is too much.

Fatigue is reading the same page over and over again and your brain falling out. Fatigue is going to class for two hours and feeling as though you’ve run a marathon. Fatigue is relying on your power scooter to get around. Fatigue is stumbling out of the house to walk your dog and having it hurt you more than you could imagine. 

fatigue is being too tired to add contentto this list orusethe spacebar

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat. Text reads: “Stairs and stares”]

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat. Text reads: “Stairs and stares”]

katgezicht:

thelamedame:

iamnotthedamselindistress:

withthefacinorous:

sasha-smithy:

tianatarantula:

Nothing is stopping this guy who’s wheelchair bound from playing bowling. #inspire #inspirational #wheelchair #bowling #motivation #motivate #dontgiveup #possible

HE’S JUST BOWLING! Does he know you took this picture of him and posted it online without regard for what he thinks?
CRIPPLES DO NORMAL SHIT LIKE DRIVE AND GO BOWLING AND GO TO PARTIES. We’re not here to ~inspire~ you or motivate you to get off your own ass. Our lives are not tragedies that you can twist to make you feel better about yourself.

fuck this inspiration porn. Perhaps I will send you a picture of me eating cereal so you can caption it ~oh this brave strong woman, eating her cereal and shit~
You creeper, did you even ask him if you can take this picture? Did you even talk to him? Or did you just stare at him from a distance as if he was a three-headed dragon?
If any stranger did a picture of me because while doing random stuff of my disability i’d FLIP MY SHIT.

NO WORDS. NO WORDS.
I sincerely hope you had his permission (which  I genuinely believe you didn’t ask for). Should I send you pics of me brushing my teeth or drinking a cup of water for your ~inspiration collection~?




Cripples Making Really Stupid Inspirational Porn of Themselves Meme, three two one go

katgezicht:

thelamedame:

iamnotthedamselindistress:

withthefacinorous:

sasha-smithy:

tianatarantula:

Nothing is stopping this guy who’s wheelchair bound from playing bowling. #inspire #inspirational #wheelchair #bowling #motivation #motivate #dontgiveup #possible

HE’S JUST BOWLING! Does he know you took this picture of him and posted it online without regard for what he thinks?

CRIPPLES DO NORMAL SHIT LIKE DRIVE AND GO BOWLING AND GO TO PARTIES. We’re not here to ~inspire~ you or motivate you to get off your own ass. Our lives are not tragedies that you can twist to make you feel better about yourself.

fuck this inspiration porn. Perhaps I will send you a picture of me eating cereal so you can caption it ~oh this brave strong woman, eating her cereal and shit~

You creeper, did you even ask him if you can take this picture? Did you even talk to him? Or did you just stare at him from a distance as if he was a three-headed dragon?

If any stranger did a picture of me because while doing random stuff of my disability i’d FLIP MY SHIT.

NO WORDS. NO WORDS.

I sincerely hope you had his permission (which  I genuinely believe you didn’t ask for). Should I send you pics of me brushing my teeth or drinking a cup of water for your ~inspiration collection~?

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Cripples Making Really Stupid Inspirational Porn of Themselves Meme, three two one go