New Survey Shows Devastating Impact Of RA Pain | Arthritis Information
A new survey of U.S. women living with rheumatoid arthritis (RA) published reveals that RA has a clear emotional impact on people living with the disease, with loss of self-confidence seen in their sex lives, in the workplace, and in their social lives. Survey findings suggest that almost 60 percent of women living with RA in the U.S. feel less self confident in their sex-life and over a third consistently find intimate relations painful, or have even stopped altogether.
The survey, sponsored by pharmaceutical company UCB, highlights that RA was a contributing factor to a quarter of divorces amongst women with the disease, and that 53 percent of the single women who responded to the survey have reported their RA is an additional obstacle in finding a life partner.
"My patients feel that their discomfort is not well-understood by family members and close associates which affects their social relationships significantly," said Roy Fleischmann, M.D., Clinical Professor of Medicine at The University of Texas Southwestern Medical Center in Dallas. "Many prefer to hide their degree of discomfort from others because they feel it is too difficult to try to explain pain and decreased ability and function to those who do not have these limitations."
Pain is a huge issue for women living with RA, with 85 percent of respondents experiencing pain on a daily basis, and 82 percent taking medication every day. 68 percent of respondents claim that they constantly look for new pain relief therapies to help them cope.
http://www.medicalnewstoday.com/articles/167086.php Lynn492009-10-26 05:40:16Bump...because it's important info and it may get lost in the fray....
The ACRA and the rheumatologist have criteria and treatment plans for the physical aspect of RA and the most they offer for pain is Tramadol.
Pain is the most significant part of the disease, it's tangible, we feel it, it can be seen in our face and our eyes and heard in our voices but RDs somehow miss all that. They look at joints, labs, xrays and seldom do they explain pain. They may ask us to tell them on a pain scale of 1-10 where our pain level is, but that's about it. They NEVER go into detail about our pain. They never ask if it affects our sexual relations; they only tell us to squeeze their fingers to gauge our grip.
My primary care doctor looked me in the eyes, saw my pain level and prescribed medication to help. My RD didn't. The expert never saw the amount of pain I was in, even when I told him it was a 9 on the scale all he offered was Tramadol - which I'm allergic to. Pain caused my BP to elevate, insomnia, and because I couldn't ambulate due to the pain I developed embolisms in my leg and eventually pulmonary embolisms due to inactivity. If I had been offered sufficient pain control which in turn would have made walking easier, I wouldn't have spent 3 days in ICU and almost died due to embolisms.
Pain control is a real serious issue and RDs don't care to deal with it and will pawn you off to a pain specialist. Not all patients need a pain clinic/specialist. I'm sure there are some RDs who treat pain reasonably well but I haven't been introduced to them. I thank my primary care doctor every day that he recognized what was in my eyes and face. Thanks for the article Lynn. This is one of the most important issues surrounding RA. Lindy
LinB2009-10-26 18:19:57
You are right, Lindy, pain is a serious issue and RDs are not the only ones not willing to deal with it in my experience. I am lucky to have an RD who does treat my pain. She is also the one who has treated my pain associated with my past surgeries as the surgeons didn't want to deal with it, nor my pcp, nor the specialist who sent me to the surgeon. She was fully aware of how being off meds for treatment/surgery would effect me and my recovery.
"Many prefer
to hide their degree of discomfort from others because they feel it is
too difficult to try to explain pain and decreased ability and function
to those who do not have these limitations."
Maybe what we need is a better way to communicate our pain in addition to health care professionals better trained to recognize pain cues.
Really good, Lynn, thanks!
I'm very fortunate to have a rheumatologist who thinks chronic pain is unacceptable, and new acute pain is worthy of investigation... and will prescribe appropriate medications (from NSAIDs to tramadol to opiates) and/or therapies (PT, OT, various injections, etc) to alleviate pain. She seems to really understand how severely pain can impact all areas of one's life.
After a while you don't like to talk about it any more. My husband is a doll, and has never made me feel like all I do is complain, but sometimes I feel like all I do is complain. I want sympathy at times when I'm feeling low, but hate to ask for it. I'm not in agony by any means, but I know that every time I get up and walk on painful feet or pick up something with my painful hands, it is going to hurt and I find myself wincing in anticipation. Tough times for me at the moment with the next step to any better pain relief being very heavy duty. I'm on relafen now and it's just not doing it.
See, I'm embarrassed to be complaining right now! Thank goodness you people are the ones I can do so to that will actually understand and not roll their eyes while thinking, "Man, isn't she over that yet?" Not that I've seen any evidence among my loved ones that this has happened, but I don't tell anyone other than my husband how I'm feeling. My parents don't want to know. They're the kind of people who feel if you don't talk about bad stuff, it doesn't exist.
Wow, I guess I'm in therapy here!
I too feel very lucky to have an RD that is very proavtive about treating chronic and acute pain. I don't think I would see someone who ignored my pain....Until a few short months ago I did not realize the extent of my pain and although I thought I was getting adequate pain control I was not. I minimized my level and degree of pain, according to one physician who quite literally demanded that I recognize pain and then give myself permission to voice not only the level/degree of pain, but also to request or even demand adequate pain control.
Stoicism is far overrated.
This is not a "ladies only" issue. I'm new to RA, having been at it only a year, and my condition is not yet under control. Thankfully it has improved greatly with meds. I don't know of any way to describe the pain and have it be clearly understood by another person. My wife can see that RA hurts but she will never know to what degree.
Man or woman, young or old, RA strikes me a life-altering condition. This is an experience I could have done without.
bumpPart of the pain issue was I didn't recognize the amount of pain that I was in until it was too late and I was at a 10 on the scale. I have a high tolerance for pain and then throw stubborness in the mix and it's a lethal combination.
I did find a new RD as soon as I was out of the hospital and was started on a new dmard, biologic and sufficient pain control. The other issue with constant, high level pain is your thought process is very static. I should have known and recognized all of this while it was happening but I didn't, not till I felt better. Lindy
[QUOTE=LinB]Part of the pain issue was I didn't recognize the amount of pain that I was in until it was too late and I was at a 10 on the scale. ...[/QUOTE]
A lethal combination indeed. I share both lack of recognition and stubbornness with you Lindy, and like you the impact of both has been less than sterling!
I appreciate all your responses.. but I have another "observation" if you will. I am not martyrizing myself..
I am fearful of over medicating my pain.... I wouldn't even take prednisone because I was fearful of it masking the pain......I want to feel it so that I don't over do.... over extend and hurt myself more.. When I am painfree... I am prone to pushing myself to do things cause I feel better then pay for DAYS!! or WEEKS! on to months.
Whereas if I have discomfort on one level on up to actual debilitating pain at higher levels....I act accordingly. I've hurt myself enough times you would think I could be careful anyway.. but I don't
I take it easy. I rest when needed. I am more careful.
I am also fearful of medicating more because my NSAID masks alot of other pains as well as handling my inflammation and discomfort w/ the joints... I'm fearful of "something" being wrong and not having the indications of it.... enough infections have not been caught til they escalated and I would have probably medicated if I had felt the fever and discomfort more.
.
babs102009-10-28 10:55:10Babs, My use of pain meds in the last 5 years or so helps with the damage pain and not so much the pain from a flare. Flare pain because they're not nearly as horrific as they used to be are managable but the damage pain isn't. If I want to golf I have to use pain meds. I refuse to give up anything and managing the damage pain is just part of my routine. I don't need pain meds everyday but I use them when I need them. I also will use them at night when bursitis flares in my leg. Sleep is important to me. It's when our bodies heal.
I've found if I don't do the things I love to do, don't exercise, and have a constant pain level that I'm not living my life the way I want to. It's much more important to me to be able to do the things I love than to try and pace myself. I'm older than most on the forum so I don't worry about the damage that I can do to myself but I do worry about RA damage. It's done much more damage than I could ever do to myself. Remember we're all different with different damage, pain levels, flare frequency, etc. so what I need to do to live a normal life will be different than what you need to do or Shug, or Lynn. Lindy
I feel that one of the most difficult issues with pain is the resultant amount of fatigue. The more energy I have, the higher my threshold of pain is - conversely, the less energy I have, the more the pain hurts. I am not sure which is the egg and which is the chicken. All I know is that when I do take a low-dose of pain med, the edge is taken off the pain and I feel energized. Who else feels that fatigue is one of the most difficult issues along with pain? And who feels that these two issues are so closely related? Not to get too personal, but is the loss of sex drive a result of pain or fatigue?Fatigue was just the first thing that entered my mind when I started reading this article. I mean I agree with the pain issues. I was just thinking to myself that I do not have the energy for a social life so I do not know if I feel self concious about things because of pain near as much as fatigue. Of course they are both equally disabling.
I am however having a painful week. Flare damage and barometric pressure combined. Extra stiff muscles tonight. My arm and hand locked up while mixing up some blueberry muffin mix. I have had serious issues with sleep from the damaged areas of my feet. Wow I have just hit the super stiff faze. Hope it paces as quickly as it came. Sometimes my pain meds do not touch it.
Justoday: I think both pain and fatigue coupled with depression would move one to have less sex drive.
Me, I have not saddled up for three years.
Just the thought of having to go out to the back paddock and lead the old nag back to the stalls, grab the bridle and saddle, starp it all on, grab the whip.
Oh man I'm exhausted just thinking about it.
I used to be so against pain meds. I think I took a total of 8 vicodin after my c-section. I didn't like to feel "foggy headed". Now I rely on pain meds. I wouldn't feel like leaving the house without them. I agree with Lindy and those who feel that their quality of life would be too low if they weren't out in the world, doing things.
When I was first dx'd, I would say no to going places because I knew how much I'd hurt. Now I realize that not going hurts even more.
As far as sex is concerned...there's still life in my sex life...but it always starts out as more of a duty than a pleasure. But having young children will do that to you, as will RA.
leila
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