Comments on: Does Rheumatoid Arthritis Pain Really Hurt That Much?

By: Kelly Young

Kelly Young — Wed, 01 Feb 2012 00:26:57 +0000

(Thanks, Raini. I did read your comment when it posted – but I’ve been too busy to type any replies the last few days.)
Thanks for what you posted on FB! We can all so our part to provide a clearer picture of what is really going on & explain how this mess of misunderstanding came about. You’re so right: it’s such an extreme disease that we somehow get a reputation of being extreme patients instead.You did a great job explaining.

By: Raini

Raini — Sat, 28 Jan 2012 07:51:00 +0000

Wow. Ok, so I read this entire piece of http://www.rawarrior.com ‘s blog on this subject. My first emotion was, of course, rage. How dare they tell ME what MY body feels like. Then I slipped into sadness, for if this is truly the belief of the medical “experts” or establishment, how will we ever find a cure? The sadness extended to how the public, friends, some family members and even I, sometimes see us (myself). Yes, there are times when I wonder if I have a realistic view of my disease. The sadness was followed by an almost despair. Feelings of disrespect, being seen as a hypochondriac or malingerer by the general public and by some “close” to us. I am not talking about anyone currently in my life, as I have pretty much shed those who didn’t/couldn’t hide their disgust/disbelief as I have no need of them in my life. It’s hard enough without feeling the need to CONVINCE someone that I AM sick and that I AM in pain. The despair was pretty quickly followed by anger again, along with a touch of obstinacy and more than a healthy dose of “kiss my ass-ed-ness”. I have been through a lot of pain in my life. Not the least of which was childbirth, done naturally (NO pain aids), for 17 hours, with no Lamaze tools, for the most part without support, and with contractions exclusively in my back (I say exclusive because I cannot remember what the uterine ones felt like as they were blotted out by the back). The back labor felt like someone was trying to bend me the wrong way and snap my spine in half. That was a very long time ago, and yes, I still remember the pain. My pain now, when someone gently squeezes a knee (doc’s gotta palpate yanno), outdoes that childbirth. It may not last as long, but it is just as intense. I had one doc (not my rheumie doc) thought she was gently squeezing my knee, when I burst into tears and moaned (I don’t make noise when I’m hurt). She said “I barely put any pressure on your knee, is it really that painful?”. I replied “yes”. She ended the exam and told me to see my rheumie instead (I went to her because I couldn’t get in to see my rheumie for several months). My point is, how would you feel if the very people who are supposed to help you and research a cure for your deadly disease, didn’t believe you even had it? Kind of an extreme comparison, but then RAD IS extreme. I do NOT want your pity, or your “there, there’s”. I simply want you to believe me. The sad part is that the people who NEED to understand and believe, won’t be the ones reading this. *SIGH*

Kelly, this is the comment I followed your blog with on my FB page. Again, I thank you for the information. We NEED to hear it though it is painful, discouraging and upsetting. We can’t fight it if we aren’t aware of it .

By: Kelly Young

Kelly Young — Tue, 10 Jan 2012 00:00:26 +0000

yes Lisa! and we need them to understand because these are the ones we are counting on to find answers & relief of our suffering!

By: Lisa Calhoun

Lisa Calhoun — Mon, 09 Jan 2012 23:10:31 +0000

How offensive to read these “scholars” of which none probably have ever had RAD. I like that word much better!! Low pain threshold, ARE YOU KIDDING ME? Living with RAD, many, many surgeries later, an anular tear in my disc in my back, yet everyday I get up and I get things done – I wish just for one day one of those individuals who wrote some of those articles could feel just half of OUR pain I bet they would recant their articles! I am so glad I found this site, THANK YOU!

By: Lorraine

Lorraine — Mon, 09 Jan 2012 20:05:50 +0000

I agree Jamie. Imagine if your livelihood was to fix the unfixable, maybe you would begin to tell all your customers that there was nothing wrong. The brokenness is all in their heads…These well paid professionals are probably frustrated with the magnitude of the unmoveable situation. They are taking their frustrations out on us victims. Someone should study what happens to high-status workers who are continually failing to “get the job done.” If they’d admit there was nothing they know to do, both doctor and patient could move in reality, and cope better with this awful condition.

By: Lorraine

Lorraine — Mon, 09 Jan 2012 19:45:54 +0000

My goodness! My worst pain in life was slamming my finger in a car door. I have had c-section (awoke from anesthesia feeling as if stabbed),
broken mid foot in car wreck (didn’t hurt til I stood on it in ER) pulmonary embolism, numerous blood clots and phlebiitis, pseudotumor cerebri, and Rheumatoid disease since age 30, now 50. I think the context matters how I cope. In the car-door, I felt trapped, as if the electric shock through my body might not be stoppable. It happened maybe 20 years ago and
did not fracture. But WHILE I WAS IN IT, it paralyzed me, psychologically. Pain stops me. And everybody who experiences it wants it to stop, now. I would rather experience any pain I’ve had than the old car-door finger slam. I hope I never have another experience that white-hot and uncontrolled. Walking the airplane aisles 4 times last year, as an attempt to follow my spouse/caregiver’s new job DESPITE WHEELCHAIR BOUND 3 YEARS, began to approach the car-door in my damaged knees/hips/feet/ankles/back. Those who have episodic pain have NO idea of living in chronic, unremitting pain. When I realized I COULD NOT ESCAPE autoimmune disease pain, I began to freeze my body motions to lessen it. Making me move against the damaged joints takes me to the 10.Every time.

By: Alix Marie

Alix Marie — Mon, 09 Jan 2012 13:50:59 +0000

This whole argument gives me a pain–not a physical one, but a mental one. If I didn’t have pain, I would maybe have a life that is fuller than the one I have. Slowly over the years, I have had to give up things that were enjoyment to me because the body either would not even do that way more or the pain of doing it was enough to totally defuse the pleasure of the activity. I have two levels of pain right now–Good day–I can get up and do something–bad day–in the bed with the covers over my head. Of course, there are grades of each. Can I clean the house? No–mostly I can’t except in such little amounts that if I relied on this it would not ever get all the way clean before the first cleaned spot was dirty again.
Right now, I cannot write anymore as my fingers are red swollen and yes PAINFUL.

By: Fathima

Fathima — Tue, 03 Jan 2012 13:07:12 +0000

To Whom It May concern,

I am an RA sufferer, and i dont think that its fair to assume the pain that we go through – i am also researching the disease and possibilities to reduce pain.

I honestly believe that no-one knows exactly what an RA patient goes through unless they have the illness. sometimes perhaps our pain is lighter than other days – but most of the time its a haunting pain that makes you imobile and restricts so much of your ability – the things that you take for granted all of a sudden become a challenge – perhaps you believe our threshold for pain is lower, i personally think that it is not – i have been for chemotherapy, bone marrow transplant various joint ops as a cancer sufferer for example its chemo and radiation right? and ops wherever possible – the funny thing is that cancer does not pain but when you look at a cancerer sufferer being all weak and unable to do things – imagine that with 10 fold pain and then you’ll realise what an RA patient goes through…. dont get me wrong – i dont have pain everyday…and im not bed ridden everyday, i love the fact that i have a purpose and it gives me the stregnth to wake up everyday – yes there is moderate pain and at times you must understand that the pain experienced is unbearable and all you want to can do is take a hole lot of painkillers and sleep – my point is just that unless you dont have it or never experienced it – i dont think that is fair to assume it… many people have to deal with this struggle mentally, emotionally, and now to say that RA patients have a weak threshold for pain is mereley adding to that list making it seem that we want pity – its not the case in many instances we dont go anywhere to inconvenience others good times – i myself prefer some quite time at home… no-one wishes pain on any other human being no matter how mild or how severe – i just think by using these comments and the way that these articles are written you are adding more pressure and causing me emotional trauma.

i sincerely hope that you can Understand where i am coming from and try and understand it from the ‘horses mouth’

By: calugg

calugg — Thu, 15 Dec 2011 00:02:01 +0000

Here’s my take: The vast majority of patients with RA are female, and there are endless studies pointing out that women with pain are NOT taken seriously by MDs. It’s all in our heads…why women with cardiac systems aren’t taken seriously, women with major cancer pain aren’t taken seriously and on and on.

I suspect this is also true for men with RA since it’s a gendered disease. We’re just a bunch of whiny females (total SNARK!)

By: Jennifer

Jennifer — Mon, 28 Nov 2011 22:43:13 +0000

With regards to the pain threshold, l feel l have a higher one and with having RA since 29yrs old now 50yrs, l deal very well with the constant pain or knawing pain at my body.

l think that this the part that people find hard rather than the headache that will go away once you take a pill, where the RA medication numbs the pain but it never goes away !! we are given a raw deal on how we feel sometimes!!! as we still have to deal with the ever day things, can you imagine having constant headache and dealing with lists of to do, dealing with the kids, loud music, meals to organize, shopping, l am sure many people would be complaining. Yours truly cheery disposition!!