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Trapped In A Box, No Longer
Last night, I had one of my longest cries in a long time. On Monday of this week, I called my doctor because my rheumatoid arthritis continues to worsen, even though two weeks ago we upped all of my medications and added a one-month Prednisone boost. One of the worst feelings in the world--even though I know that these meds often ...Knock Me Down, Pick Me Up
After a couple of relatively symptom-free weeks, my rhuematoid arthritis is once again knocking me down. Today I didn't get out of bed until around 1:00 p.m. Even then, I did't much get past first gear...although I am proud to say that even as my day passed by in slow-motion, I was able to make it into the kitchen to ...Cheers To Quality Of Life!
"Quality of Life (QoL) is a phrase used to refer to an individual’s total wellbeing. This includes all emotional, social, and physical aspects of the individual’s life. However, when the phrase is used in reference to medicine and healthcare as Health Related Quality of Life (HRQoL), it refers to how the individual’s wellbeing may be impacted over time by a ...How My Pain And Disability Improved My Life
Nine years ago tomorrow--on the day that I turned 30--I submitted a letter of resignation to my manager. My roaring twenties were over, and I could not be happier. By all practical purposes, the previous decade had been filled with many different successes: I graduated from Columbia, I graduated from Harvard, and only a few years later, I was earning ...Through The Looking Glass
I used to think that accepting the reality of my rheumatoid arthritis meant that I would be giving in to this disease. As long as I grabbed on to the life that I wanted (thus avoiding what was obviously becoming the life that I had), I figured that I would be okay. For a while this actually seemed to work, and ...My Own Personal Serenity Prayer
I had big plans for this morning. First, I was supposed to wake up early to take my dog Alva to the vet, so that we could check her blood sugar levels. Then, later in the morning we were going to do some shopping, followed by lunch at whatever restaurant happened to be in the vicinity of wherever we found ...The Importance Of Having Confidence In Our Decisions
Many readers know that, for almost the past year, I have been treating my rheumatoid arthritis without medications. Some people have interpreted this as me saying that I'm not doing anything for my RA, something which could not be further from the truth. During this past year, I attended physical therapy on a 2x or 3x weekly basis, I successfully incorporated ...Cleanup In Aisle 7, Please
Yesterday morning, I started my Friday in my usual way: I left my house at 10:00 am, in order to go to physical therapy. (I rarely ever make commitments before lunchtime, but I will make an exception for PT.) During my session, we did some of our regular therapies: heat, ultrasound, and electrotherapy. I was a little surprised that toward the ...What Is A Rheumatoid Arthritis Flare?
This is a rheumatoid arthritis flare: January 16, 2011 I woke up crying today. It used to be that I could alleviate some of the pain by staying still…but today, the exact opposite seems to hold true. It hurts to sit down. It hurts to stand up. It hurts to lay down. Pressing my forearms down on a tabletop, placing all of my weight ...Rheumatoid Arthritis And Physical Therapy
"Physical therapists, also known as physiotherapists, comprehensively assess RA patients in an ongoing manner. The evaluation of each patient includes an examination of affected joint flexibility, bony alignment/joint deformity, muscle strength, endurance, mobility, ambulatory status, and the ability to perform activities of daily living. It can be a delicate balance to enhance mobility and strength without fatiguing the patient or ...
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Copyright © Rheumatoid Arthritis Guy, 2009-2013. Rheumatoid Arthritis Guy™. 60-Second Guide to RA™. Real Profiles of RA™. All rights reserved.
Captain Caveman beat me up in the middle of the night with his large wooden club.
http://rannygahoots.blogspot.com/2011/07/psa-on-psa.html
Or: Compared to the pain and fatigue of PsA, giving birth and the sleep deprivation that followed was nothing!
I’m walking on marbles. WTH!? Who put them in the soles of my feet?! How do I get them out? Oh wait that’ll be a $35 co-pay!
It’s like Getting caught in a fishing net and slowy drowning..the more you wiggle the more tangled you get. But not moving is certain death. So I wiggle more, I get more tangled..then I stop. slowing sinking. So I wiggle again thinking I can work thru this. I can get out!… All I know for sure is that there are more nets waiting tomorrow.
Childbirth experience that doesn’t end.
Fatigue is like someone gave me a sedative shot lately and holding a book feels like 50 lbs. My pain isn’t bad thanks to a high threshold.
Like carrying around a ton of bricks
Like having all the life sucked out of your body till there is nothing left but a shell.
I also have the feeling of walking on marbles all the time. Get really frustrated that I cant wear strappy shoes with sky scraper heels, or with any kind of heels:(
A continuous and constant reminder that something is not normal in my body.
Debilitating. Now I have ulcers too from meds… I’m tired of being tired and tired of being sick!
I say fatigue feels like moving through jello, everything takes extra effort and life is heavier. It is different than being tired where you can muster some energy and get something done, with fatugue there is no mustering anything =)
The fatigue, I refer to as “The wall”. I sometimes wake up fine and everything is ok, go to work and go about my job. Suddenly at any given time..usually in afternoon I hit “The wall”…..It’s very much like something has just drained me almost instantly of energy, and I yawn and am deeply fatigued. Sometimes so fatigued no amount of sleep or rest seems to help. I imagined it as the end of the battle of the cells inside our bodies, with the battle field scattered with little antibodies laying around wounded and dying, after the battle. And they need rest to regenerate to fight again. Energy drinks, coffee, etc phooey have no effect. When “The wall” is hit I’m done and need to rest.
The fatigue feels like I haven’t slept in a week. The pain is something I have never experienced. It is constant, unrelenting, like I am tied to that torture device “the rack”.
does anyone have any suggestions on how to help someone who feels this way?
It’s kind of like a really, really bad hangover…and you got beat up the night before.
I recognise when my husband goes into a ‘flat’ phase as we call it (when suddenly all energy goes), then I sit him down give him some food and drink and make him stay there. Then I leave him alone, come back and we think of something we can look forward to. x x
it feels like i climbed the tallest tree until every muscle was aching and exhausted….and then i slipped and fell hitting every branch on the way down before landing in wet cement that i had to swim through until i could force myself out of the blankets and into the kitchen for coffee….really should slow down on the superhero antics.
My sister and I call the really bad ones “Mack Truck Days”. Because it feels like that is what ran over us.
(And unrelated to RA, I have an implanted defibrillator – I call him Skippy).
We need to name things – takes away some of their power……..
I once was in a car accident (not my fault), totaled the car, cut open my head, left me dazed and bleeding on the side of the road. Put me out of commission for 2 months or so recovering. That was such a nice experience in comparison.
Pain: feels like I’ve been in a boxing match (it doesn’t matter who I fought against, because I’m the loser.) Fatigue: feels like Sleeping Beauty, RA is the poison apple and no kiss can cure the spell.
The fatigue is at times bone-crushing when it takes over my body so abruptly and at the worst time. The pain can sometimes be described as a nagging dull ache to a sharp knife ripping thru my joints, muscles and bones. It can be caused by a hand shake or a quick body jerking. And then the pain and fatigue could feel like none of this and that just keeps me guessing.
As a creative person, I have trouble with the typical “is it burning, stabbing, blah blah blah” the pain forms always say. So I made up my own. The si joint pain is “crowbar pain” where it feels like someone stuck a crowbar in the joint and is slowly applying pressure. The burning stomach of gastritis I call “volcano pain” which is a perfect description. There is an odd pain in my mid back I just call “icky back” where the muscles feel rotten.
There are more, of course since AS comes with hundreds of pains!
Needless to say my doctors think I’m a nut job.
the pain for me is penetrating and so deep it starts on the surface of the skin, through the first layer, into the muscle, on through the deep tissue piercing the bone then…it does the same thing as it goes out the other side of the limb…
the fatigue is like someone has asked me to get to where they are and I have to pass through snow up to my neck and a fog that prevents me from seeing clearly while the wind is blowing so loudly I cannot hear or think clearly….
Nan
Hi, I myself was dx with RA. Supposing to be in remission. I also have Fibromyalgia with spinal dx’s.
To me the pain is all over, it never stops. There are bad days and good days. I’ve had the hangover feeling,Nausea,joint pain of different types. Some are high pain, some are dull. If just depends on the day. Right now my hand joints are swollen and painful. My back feels like it’s going to break from the back of my head down to my coccyx bone!!! I’m not to sure about that remission. :>/
I describe my mornings as: waking up but instead of a bed, I’m in an invisible vat of molasses. It’s hard to move because I’m so stiff, and it takes lots on energy to move a few inches and the struggle is painful. Once I get moving, the molasses lighten up, but at the end of the day, when I lose the momentum, the molasses firm up and I’m out of energy to fight it.
I Played soccer in college. We used to go to three day tournaments where we would play 2-3 games per day… The day after every muscle and joint felt abused and achy. It kind of feels like that. On the good days, that is… The fatigue is the worst. From my years of playing sports I have a pretty high tolerance for pain but nothing prepares you for fatigue to the point that putting one foot in front of the other takes all you got. When if hits it feels like my mind is a large building at closing time and someone is turning off the lights with me locked inside…
The ache I don’t mind. I’m used to it; I’ve had aches my whole life. But the stabbing pains are new; they make me stop what I’m doing and hold my fingers or toes in an effort to make it go away. Most days I do ok. But I still haven’t figured a way past the fatigue; I still need an “arthritis schedule,” if such a thing exists. A way to feel productive, as if I can still accomplish things. Lately it’s been worse because I’m anemic again–I have an appointment with my dr; hopefully she’ll give me an iron IV (as has been discussed) since my adventures with high dose iron pills resulted in weight loss, among other things. My most recent weight (a week or so ago) put me at 105 lbs (47.6 kgs). The hardest thing is that everyone thinks that it’s so cool to be underweight, that it should be so much fun. But it isn’t. It’s so easy to get bruised, and there’s so much stuffing and guilt tripping if I don’t gain or I lose. Oh and there’s new pain: my injection sites. I am trying to look for positives and stay hopeful. A friend told me that scientists are working on a new “pain vaccine.” Don’t know if it will amount to anything, but maybe there’s hope.
I have several forms of arthritis and other medical issues, so my severe pain can be variable depending on what’s aggravated–
Intense flare of spine pain: being kicked in the spine by a donkey
SI joint pain: a monster gnawing through the bone
Generalized entethesis- whole body flare: recovering from being beaten all over my body with sticks
Heart arrhythmmia: like being kicked in the chest
Inflammatory neuropathy: ropes of pain set on fire
Shoulder arthritis and arm nerve pain or severe hip inflammation: defies metaphor, just shoot me
Usually I can keep myself at a much lower level of pain, thank goodness! But it takes diligence, assistive devices, and extensive help from others, and doing way less than I’d like sometimes
The pain of a severe RA flare feels like there’s a silver butter knife slipped between the bones of the affected joint, and it’s being flexed up and down, back and forth, in time with my heartbeat. It becomes so painful that even the weight of a sheet on the joint is agonizing. I call the less severe flares “twinges,” and imagine a wicked, grinning red dragon with knobby, sharp scales curled around the joint, gnawing on it the way a puppy gnaws a chew-toy.
I don’t. I refuse to waste any mental energy giving words to something that sucks. I don’t want to be a person with 50 words for pain, and only 5 for comfort.
http://effthisra.blogspot.com/
Overwhelming and often when you least expect it.
When I wake up with that heavy fatigue and deep achiness that makes me feel that I can’t move my body to get out of bed, I tell my husband that I am feeling “crushed.” He has come to know what this means, even if he can’t quite understand it, and knows that I will be moving extra-slowly. It just takes that one word, “crushed,” to say all I need to say.
Oh, and I also wrote a song about this feeling – here are some of the lyrics:
But in the morning I will wake
With fingers curled and feet that wait to feel the broken glass
And you are out there somewhere moving through your day
While I wonder,
Will I move today?
Don’t try to tell me that it’s easy
You don’t know what it’s like to crawl
And someday I will hit the ground running
But today I won’t hit the ground at all
No, not today
Today I won’t hit the ground at all.
You can hear the song here: http://remicadedream.com/?p=513
The fatigue…like a dead man walking. The pain…like being nailed to the cross but in every joint.
I describe the pain and fatigue as variously a jailer or a heavy metal chain. I want nothing more than to lace up my running shoes and head out the door where I can physically feel the open road and the pleasant sensation of burning lungs and strong pumping muscles calling me, but at every door there’s a warden I can’t bribe or fight, and wound round every limb there’s a heavy metal chain biting into me.
Usually I can find some peace in sitting quietly and imagining myself out of my body, but forgive me if I sound a little depressed today, it’s been a bad week.
I got out of bed a couple of hours ago. The pain is so severe, and so constant, that I don’t sleep well at all. Constant pain is so draining, and I am always fatigued. Well, I was out of bed a couple of hours – a good day for me. After I post this comment, I’m going back to bed. – David in Phoenix
Wow, I love everyone’s different descriptions here. I always compared my fatigue to carrying an elephant around, but the moving through mud/jello/mollases ones are perfect. Everything feels heavier, the air is harder to breathe and my brain feels like it’s full of cotton wool. Sleeping doesn’t help.
My pain varies. Joints can ache but can also feel like something is gnawing away at them, then of course there’s the knife like pain of trying to move one you shouldn’t. Sometimes every inch of my body is sore and tender – even my eyebrows! – and I can only imagine that’s what it must feel like to get punched all over by someone wearing boxing gloves.
Have had chronic fatigue (and probably FM too) for as long as I can remember. I’ve always had a sleeping disorder, it seems. Cycles of no sleep to can’t stay awake more than a few hours, or asleep for more than a few hours is my “normal”. Exhaustion is constant. The pain is fairly constant too. Bone-deep squirmy pain in the hips, knees, ankles that makes you want to climb walls. But mostly it’s my chest, where it seems someone is hugging me way too tight – can’t move without pain, can’t breathe without pain. Or someone has their thumb on my sternum pressing as hard as they can with no relief. Sucks.. but tomorrow IS another day
They say that misery loves company – but I don’t wish anyone to be in my company when I’m having a bad day
I’ve had enteropathic and reactive arthritis most of my life and was recently diagnosed with RA.
My pain was bad before – but felt nothing like RA. It’s MEAN! Mean I say! Someone above me gave a crowbar anology .. which is what I tell my doctors. It’s like someone prying apart your joints while another person is pouring boiling hot oil into them!
There is not enough pain medication to ease this
Like someone’s hitting your joints with a hammer
mostly all my left side joints and my lower spine feel as if i have a screwdrivers inserted between them. most of the time it feels like someone’s just pressing om the handle giving enough pain just to remind me its there, but sometimes, like the last 4 days they yank on the handle up & down.
i remember years ago having an acheing decayed tooth that had the nerve end exposed i sometimes foregot & would bite down on something hard, leaving the chair sat on or floor stood on to meet the ceiling above,
imagine a decaying tooth at each joint, moving is biting down on the nerve end. had the tooth pulled, problem solved, “joints” what can i say we don’t already know.
I’m new to this website. But thank you RA Guy, and thank you to everyone. This is the only ‘support’ i have found that I don’t feel so alone in this. It’s been about 6 months since the RA onset and then diagnosis, starting meds, and having some relief from the original onset flare. That said, the pain… the only way i currently know to describe the pain in brief words when people ask is “i’m in consant pain, even when i sleep. It’s the degree of pain at the moment that changes, daily,hourly,and by the minute”. I liked what the person said about hitting a ‘wall’…i have that wall effect too. Hitting a wall for me can last a couple hours, a day, or several days. I’m still learning to force myself to take breaks and rest before i hit a wall. And walking through jello…i hate jello btw, so good ananlogy!
My joints and muscles feel more like a gummy substance inside my skin–capable of nothing but burning. No one understands and that is starting to make me angry. I get endorphins from my job so I do not want to quit working. Some people help, but most are belittling by saying, “Oh, yeah, I’ve been so run down lately, too”. This is not “run down”. This is being burned alive. This is carrying everything with 2 hands. And when the fatigue strikes, I become suicidal. It took me a while to recognize that it was RA fatigue so I bounced around many psychotropic pill regimes. It is the humiliation of doing something that brings me joy, only to hear my spouse say, “if you have enough energy to sing in choir then you should have enough energy to do your laundry or keep the house tidy.” I want to die.
I understand your frustration Belinda, I have felt like this as well. It wasn’t until I spoke to another fellow RAer who advised me that pain lies within the beholder, it is invisible to others who will find it very difficult to understand fully what we are experiencing. We have each other and other fellow sufferers who understand.
The RA diagnosis came about 6 months ago. I’m on Methatrexate once a week and Remicaid every 4 weeks. The pain is unbearable most of the time and the fatigue is unrelenting! I feel like my life is controlled by my symptoms. I can’t do anything I once did and the depression is getting to me. I feel like I am just a shell of the person I once was. I have always been energetic, and had what I thought was a high pain tolerance, but now I feel like my life is in a crumbled heap. I have lost interest in most things I previously enjoyed. It just takes too much effort and energy. I’m sorry my post is so negative…it’s been a really bad day, week, month…..
I am trying to remember the good days, the ones that were filled with pain free motions, endless laughters, boundless energy, sun filled memories…where, when, how, why did it fade away? Why am I the lucky one? I am tired of waking to the throbbing pain of my twisted fingers, tired of looking out my windows as jogger passes by, tired of feeling useless, hopeless, lonely, tired of seeing doctors, swallowing medicines, tired of being so tired!
I am frustrated, like being trapped in a burried coffin, unable to breakout of my confinement, slowly suffercating. My limbs are useless against the wooden contraption as they are too swollen and painful to the touch, a recurring nightmere or painful reality? Unable to awake nor escape from this endless torture! When did I fall into this merciless trap? I am afraid that after 50 year, the battle is lost.