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Thank you so much for this post Kelly! I’m printing up the study to take to my rheumatologist. He has never taken my pain seriously. He’s never even asked me to rate my pain, which was asked at every appointment with my old doctor. He’s never asked how it affects my daily life or anything to that effect. His nurse practitioners (who are women, as was my former rheumy) are the ones who have noted the constant swelling in places like my knees and shoulders.
I hope it helps, Aubrey. Let me know.
I’ve never been asked about my pain levels either. It’s just doctor’s style, I guess. But if there were one of the RAPID forms or digital ways to register my symptoms, I know it would make my chart look a lot different. I feel like it says “RA patient came in. Took prescriptions. Went home.” That’s nothing like what is in this study – what’s real info that is patient generated.
Two comments:
1. Value of Web-based research vs. ordinary CT and physician polling cannot be overstated.
2. Chronic pain and fatigue appear to be linked. That’s a double-wammy.
Bob
Thanks, Bob. Great points.
And I don’t know why they studied women only. I do appreciate this work so much, but the fact that men suffer too makes us women look less “hysterical” regarding pain.
Not to “Man Bash” but some how I don’t think most men with RA probably aren’t all that stoic about their pain either.
Love the research charts, very enlightening. Thank you.
Hi Kelly,
If you get a chance to talk with Dr. Strand, I would like to know what kind of pain and pain management training that rheumatologists typically recieve. I’d also like to hear her opinions on how she thinks that RA patients should address the issue of poorly managed pain with their doctors.
I’m hesitant to say this (knock on wood), but I’ve gotten an early Christmas present from my immune system. For the last week or so my pain, stiffness and swelling have been much reduced. What a joy it has been to wake up and work through my morning stiffness in 5 or 10 minutes. I hope it will last.
Great input. & I’m glad to hear of your remitting symptoms. Sneaky RA does give most patients a break now and then. Enjoy.
A thank you doesn’t quite seem like enough to tell Dr Strand for the study but what else do we have. It is so hard to get anyone to listen to you when you try and describe your pain (sometimes we really don’t know how to describe it) your doctor shouldn’t have to be convinced! I think most of us try to hide it so we don’t scare/worry/irritate our partners, family and friends. Not to mention we are afraid they will stop listening and then we will be alone-sure seems like more people walk out then in when you have RA. We are afraid to tell our doctors about our pain for fear it won’t be taken seriously or be told it is all in our head, or maybe worse that we just have to learn to live with it-we already know that. My lumbar has not been anywhere near acceptable after my surgery, I tried telling the docs and they just said it will take time. Now, 2 years later and a neurological exam from hell later the news is, well horrible! Maybe if they would have listened sooner, who knows. After the appointment and a discussion with my husband we were sitting in the parking lot of a camera store when he said, well are you ready to go get your Christmas present? I sat and cried, as hard as I have cried in years! The only positive thing the neurologist said was I didn’t have carpal tunnel (would rather have that then what he said) Poor guy just looked at me and said “You never break down?!” Some times we do and if our doctors would listen closer, hear what we say, don’t make us beg for pain relief our lives would be just that much easier. Guess what doc, we really do NOT want another pill to take a day! We aren’t drug abusers, we aren’t selling them on the black market and we won’t share with others because they are precious to us (the pills).
Thank you Dr Strand for doing the research, thank you Kelly for getting the word out and thank you RA Warriors for not walking out. Live to fight another day, hey can one of you warriors help hold up the other end of this spear? Been one of those weeks! Blessings to all
Dee, thank you for the fabulous insights. I hope lots of doctors stumble across your comments here. Let’s all hold up the spear together.
Dee I have the other end of that spear because I lost mine 2 days ago. Couple months back got a new PCP who took me off the narcotics and gave me tramadol which does nothing for me except make me sick ( found out it interacts with my antidepressant). Luckily I have saved pain meds I can take to get me through awhile. I don’t like to take them, I don’t like the way they make me feel mentally. 20 years ago when I had my hysterectomy and chemo I would take 1/4 percocet during the day and 1/2 percocet at night. I am stupid for 2 days if I take a whole one even now. This snow storm that just came through had me in agony. I wanted to lay in the bed and pray God would just take me home. I was taking 1/2 percocet every 6 hours just to knock the edge off. My mother calls and says ” just take a 1/4 of one” I lost it and yelled at my almost 90yr old mother. I told her to come get the pills, I would rather die then her think I was a drug addict. I then got the “I know you are in pain..” and I really lost it then, no, you really dont know about my pain, i hide the worst of it, I dont compain until I can’t stand it anymore. I apologized for yelling (but still feel bad about it). I dont want to take narcotics, I dont want to have RA. But I can only tolerate so much, chronic pain slowly eats away at you. RA takes so much, but the never ending pain is the worst. I could live without walking, i can live using adaptive devices to wash, open things, etc., I can live with the deformity. Just not the pain.
Tanya, I know exactly how you feel. I am exactly like you; I never complain unless the pain is unbearable. Sometimes I think I’ll just drive my car off a cliff and be done with it. I wish people would just understand the excruciating pain. I guess because we push onwards with our lives and don’t lay on the ground in the fetal position moaning and groaning, people figure we are okay. Stay strong!
I can’t stand the pain either. I taking a long acting morphine and 3 vicdon a day to stand checking grocerys all day. Still have pain but after 3 years I can make it through the day. I hate the pian the causes. Rhonda
A big thank you to this dr. What a wonderful study. FINALLY! Something we can print out and take to our dr’s. This came on a day when I woke up in an extreme amount of pain and needed pain meds before I got out of bed. I’ve had RA since I was 10, 29 yrs now, and only in the past 5 yrs have I had a dr. who gives me adequate pain management. That, plus a disabled parking permit, has made me able to raise my kids and participate in family life.
That is quite a statement – 5 years out of 29. I know for certain that my good doctor has no idea how much pain I live with. There are so many clues, but not treating the pain is the biggest. I remember how emphaticly they were warning me about how painful the injections were. They must know that joint injections hurt since people without RA get them, too. But my joints hurt that bad many times a day and they have no way of knowing what that’s like.
I want to add that I am a VERY good self advocate, and despite explaining clearly to the docs how much pain I was in, just how much it affected my daily living, etc, I was rarely offered anything stronger than NSAIDS until maybe the past 10 yrs, and then maybe 10 pills of Tylenol-3. Pathetic really. It wasn’t until I demanded an eval at a pain management clinic (which I didn’t really know existed) that I started to get proper pain management, which my rheum. was then willing to continue.
I still have awful days, and tough weeks as the seasons change, but now I have the meds to manage them.
I can honestly say, now that I look back on it, I have lived in chronic pain for over 10 years. It crept up on me. At first before I knew it was RA related I blamed it on getting old. (But 10 years ago I was 47, now by today’s standards that is not old) When the joint pain worsened I finally realized that my previously diagnosed RA has returned full force. I had mistakenly believed I had been in remission all of that time. I was shocked at how MD’s dismissed my pain. They did give me small doses of pain killers, many of which I cannot take due to nausea, but I endured comments such as, “I wonder why you are in so much pain, your inflammation markers look good” or “You really don’t have much swelling it must be OA” or “It must be Fibro, because you are Anti-CCP Negative” or “It is Bursitis or Tendinitis and that has nothing to do with your RA” Knowing what I know about RA and my own body, I would push the Doc a bit and question his reasoning, but you can’t argue with someone with that mindset. My Rheumy does have me rate my pain level, and asks me how I accomplish daily tasks…like getting out of bed, but never asks how may social events do you miss monthly due to RA related pain? or How does your pain interfere with family life? or How does pain impact your life, and everything in it? Docs seem more interested if you can take a shower regardless of how much pain it took you to get in and out! Also, if a Rheum Doc is accessing RA activity with lab tests and waiting for the massively swollen joint to determine disease activity and ignoring the fact that patients with RA are having their lives at times, totally destroyed by pain. It worms it’s way into a person’s soul and stays there like a cancer. So I guess I would like to ask, Just how much does the level of pain an RA patient has weigh into your assessment of RA Disease activity? As a patient, if pain is not taken into consideration how can we continue to function? How can we continue to move about, when that is the very thing that Rheumy’s keep telling us we must do? (I laugh internally when my Rheum Doc says exercise!) I believe that patients need to have not only their pain assessed at each appointment but they need it NOT to be minimized or overlooked. When overlooked it directly impacts our physical and emotional well being. I don’t just want to function and get by, I want to thrive.
Wow! I would like to thank Dr. Strand for her wonderful job in presenting this information in such a concise and easy to understand format (yeah, doctors appreciate that as much as patients do). Hopefully, it will be helpful to many, many doctors and result in better care for all RA patients everywhere. She must be a wonderful doctor. We could use more like her.
I was just at the Rheum doc yesterday and realized (after I left) that he checked for swelling but did not ask one question about my level of pain or my level of functioning. Why? Does he assume I don’t have any? My serum levels ARE within normal after all 😉 He IS a nice, caring Dr. so I want to give him a chance………. I think maybe I should fill out/score a Modified Health Assessment Questionnaire(MHAQ) every week and then present them to him when I see him and ask for them to be placed in my chart.
Maybe it will help to quantify the effect on my life. Thanks to Dr Strand for helping us get closer to being understood!
I have not been asked to fill out one ever. Or a RAPID-3 which can be done in less than a minute, I believe. Another patient told me last week on the phone that her doc has a version of HAQ done by scantron before appointments. Then it is electronically scored before he sees her. How does *that* sound?
Thats just crazy!..My 1st Rheumy made me come in every month to get my pain meds…had to sit in the waiting room for a very long time….then i get 2 form full of questions! no way i couldnt take that every month…somtimes i would wait so long that i would just lay out on the floor till they took care of me! ha ha So he didnt keep me waiting to long after that! Didnt want other patients to see me laying on his floor! 🙂
hello 2
Each time I see my RD I am asked to complete a form that shows the “smiley faces” and a questionnaire as to what level of activities I can do. My problem with that is the fluctuations of my day-to-day life. If I complete it on a “good” day it would totally disregard the “bad” days I have had since my last visit. Sometimes I feel like we are hamsters running on a wheel in a cage – just going in circles. There’s no cure, no one pain pill, no one RA medication, and we are all so different with our symptoms, pain levels, ability to function. Oh sorry, I’m on my whine, whine, whine kick. Guess I just need some wine.
Kelly,
Thanks for this info. I finally went to a Pain Clinic. My last Rheumy visit I told him of a new area in my lower back that had been bothering me. This area has been inflammed. Very hot to touch. His response, (remember this is a research Doc from UAB) was that RA doesn’t usually effect your spine. The Pain Docs told me about an area in your back called the Fatia joints – a nerve center. Apparently RA can and will invade this area of your spine. Was given bilateral fatia joint injections. They used contrast to take pictures of the joints and in the words of this Doc, minr looked like those of an 80 year old. I’m 49, not sure what anybody’s joints look like at any age but at least a report will go back to my Rheumy with yes, I do have inflamation and joint destruction in this area of my spine. One small victory!
You go girl!!
Thank God for this…I don’t take narcotics at all, but only because I can’t. At my worst, unable to move even a finger, I recall laying in bed and praying to die. I told my husband that, if this is what life was goign to be liek with RA, the quality of life was completely unbearable. The only pain the remotely approached it was the last few moments of childbirth when the baby’s head crowns…but that lasted less than 3 minutes. This level of pain for hours, days. It’s unbearable. My doc told me that the nature of RA pain is distinctive and is due to pressure on the nerves that could best be described to the uninitiated as “imagine a raw exposed tooth nerve , then multiply that over every joint of your body, where any motion or pressure sets off jolts of pain.” He nailed it EXACTLY. I wish other doctors were as enlightened as mine is, and I have used this description to others who say “Oh, I know how that feels, I have arthritis in my finger”. Oy vey.
Judy, that is a brilliant doctor. It would be great if he were teaching his philosophy to other doctors.
Not to minimize in any way the impact of RA pain in women… but why are men left out of this discussion? Is male pain somehow less? As a male RA patient of 18 years, I don’t think so…
That’s great Len, I did apologized the first time I posted it on FB. The stats are likely to be similar. When I talk w/ Dr Strand, I’ll ask her. I do not think males feel RA pain less than women do.
This description likening the pain to the exposed nerve is spot on! I’ll be using that. My doctor is hesitant with the pain pills also. He says they don’t help with the nerve pain. I did get a prescription but every time I go in he says I need to start weening myself off of them. That they don’t touch my pain? Oh, but Doctor, I do get some relief. I’m not skipping down the driveway to get the paper, but I am up and brushing my teeth. Thanks, I’ve passed this post on to many people.
Wish i could find a doctor like that! i feel so guilty taking pain meds and not being able to see my mom as much!Not being able to go everywhere with my daughter to find her wedding dress, not being able to be there for my husband..the list goes on and on………………………………………………………………………………
I guess I’ve been fortunate with my doctors. They’ve been very concerned about pain. From day one my rheumatologist greeted me with the most gentle handshake, which I appreciate since a normal handshake now seems bone crushing….
I have been dismayed by the necessity to hide pain with my family though. They don’t want to hear any involuntary gasps or groans when I try to get up out of a chair or out of bed, so I have to be more conscious of that. I sorta understand. When there is nothing you can do about someone else’s pain it just makes you feel bad to be reminded about it all time.
It really bothers me how RA seems to cramp my family’s style. I sometimes kinda feel in the way, less valued… 🙁
Less valued by your family? Don’t believe it. Over Christmas I got Bell’s Palsy–half of my face got paralyzed. But we were mostly afraid I was having a stroke. My kids were great, and I ended up feeling really loved just the way I am. Even if I can’t DO a lot, I am still the parent they talk to when they are upset. So hang in there!! They need you!!
Try telling them once how you feel…see what they say.
I have a really great rheumy. I am asked to fill out a sheet rating my pain levels and how it affects my daily activities at every visit. My pain is mostly well managed 80% of the time. Fatigue is what gets me. No matter what I do, try, take my fatigue levels continue to be problematic and definitely affect my daily life… job performance, relationships, ability to do housework etc. I am super thankful for websites like these and all the research being done to find newer, better treatments for RA. I hope that it continues to gain recognition and that more people start to understand that it isn’t “just arthritis”. Thanks for the awesome website!!
Seems to me that the pain and guilt go hand in hand.
How many of us honestly talk about our pain med use?
Do we shy away from discussions about narcotics, for fear of being “labeled”?
I’d love to hear the Doctor’s ideas about a forum, and way to spread AWARENESS about the REAL RA!
How do we get “pink everywhere” and realistic ads on TV?
Still getting “fluff” pieces in the magazines.
Anyone see Arthritis Today this month???????
Thanks for reading————–love you all!
I have to be offline for a few hours, but please leave your comments anyway & I’ll be back asap to reply. Thanks.
Very good points Jackie! This *is* how Doctors researchers think too. Quite sad really. They like to use other studies to “jump off” or support their own theories.
Again, I go back to the physiology of RA. How can one expect, knowing what a joint ends up looking (like mush), that the sufferer will have NO pain. Why is this such a freaking problem.
It really makes me angry to know that there is not a tier based pain plan for RA’ers. And such dis-compassion about pain. Really. Only a few pain pills? Only on NSAIDS? No, muscles relaxers? No pain patches, or extended release meds? How about anti-nausea pills with the pain pills?
I look at it as, If I can keep my pain under control, I can lead a productive life; work, keep family, exercise.
Perhaps, if we go to our rheumy’s with what our goals are stated simply per rote: “I want to help control my pain, so that I can work/keep my family/exercise/think. It is effecting my sleep/activities of daily living/eating. I want to have some concrete plans for pain management.” No wishy washy. And bring someone to witness the interaction: spouse, sister/brother, good friend with medical backround, medical advocate. See what happens.
I’m glad you “bumped” this post on Facebook, Kelly – it got me thinking…
What would I ask Dr. Strand? First and foremost, I would like to know why embark on a gender-specific study of effects that are not biological in nature? I understand why research segregates genders when measuring drug efficacy, since men and women tend to differ in biological response. But when the metrics are related to quality of life, why is there any expectation that the genders should be measured separately?
In my opinion, this seems to indicate a presumption that thrives in the medical community: women are more “sensitive” to effects of RA; more “sensitive” to pain; tend to “catastrophize” or “exaggerate” or … fill in the blank.
While I want to be as optimistic as you are that this study is a good thing, I just see it as based on a slightly different version of the same old Catch-22: If you are female and you express your RA pain, then you must be hysterical; if you are stoic about your RA pain, then you prove the theory that others are hysterical. But, if you are male and you express your pain, then it must be exactly as described, because we all know that men are always stoic about their pain.
I have wondered why RA patients are treated like a lower class of people when they get their pain meds filled.. the pharmicist at wal-mart, says it like this.. you have a 100 of these babies, and gives you a look.. does he think I really want to take these, does he think I am an addict? Then the advantage plan I have, now says that they will monitor, closely the amount you can get per year..
When our liver protests because of the meds, and our kidneys protest from the motrin.. we need releif from pain without the ibufrofin and tylenol.. They should have to walk in our shoes for one year and then we might see a different reaction when we say we need something to get us thru our days and nights..
well, said Rae.
Hi Kelly,
here’s a version of last year’s EULAR review of the work as well, to maybe add to your links as that 1000 page PDF ate my bandwidth:)
http://www.ucb.com/_up/ucb_com_news/documents/CZP%20Good%20Days%20EULAR.pdf
If you get contact with her, could she release you a copy of the full paper for your website, I’d love to read it but don’t have access to the UK academic journal subscriptions anymore. That’d be the reduction in ability to work due to chronic pain….
I like that the study focuses on women’s lives with RA pain. We have a 2-3 times increased incidence and prevalence of it, and new cases amongst women are rising disproportionately fast. At the same time, we continue to shoulder a lot of family work, a lot of work out of the home, and increasingly a lot of care for our elders.
I think there is some evidence emerging/emerged that men and women do experience pain differently and that there are also cultural differences in how we receive and express pain – there’s a very interesting book here:
http://books.google.co.uk/books?id=Pms0hxH8f-sC&pg=RA1-PA99&lpg=RA1-PA99&dq=differences+in+male+and+female+attitude+to+chronic+pain&source=bl&ots=5BapWj5Kv6&sig=OA8lcPMsaUu9ZoQ8FcRYkK8rblE&hl=en&ei=x7lbTfmOJYPAhAeV64y6DQ&sa=X&oi=book_result&ct=result&resnum=1&ved=0CB4Q6AEwAA#v=onepage&q&f=false
Re: the catch 22 I know it is hard to escape. As the page above points out, there are so many forms of pain complaint seen by healthcarers that are clearly the result of the person being stuck in an otherwise intractable position – the book cites low back pain and US workers – with making yourself a patient a way out. But what I think this study does do is say, look, across all these nations, all these women report high and consistent issues with pain, and are in fact hiding most of it from you, Dr! I find it very heartening.
I am on all the typical RA meds; methotrexate 8 weekly, plaquenil twice daily, flexeril twice daily, ibuprofen 800 prn, orencia infusions monthly, ambien cr to sleep.
With all of the above medications my pain level is never below a 4 but usually 5-6. However, this is great compared to 2 year ago. My pain level then was on average 8 – 10.
I have had two shoulder surgeries due to tendon tears and one knee surgery for same reason.
I’m praying for the day we are no longer in pain due RA.
I live every day pretending to be “fine”. RA patients look great. We look healthy, we look normal, this makes it so much more difficult for people to take your pain serious.
I would love to wake up and not have pain in my hands, elbows shoulders and knee’s. But I get up anyway and do all the things that need doing.
Cindy, I’d like to reply to your comment: “What she said.”
Hooray for this article. While it is wonderful that someone recognizes the extreme pain we endure, it is also a shame that we often feel the need to hide the degree of pain we experience. I would like Dr. Strand to know that it is very difficult and causes emotional, mental & physical stress for us to pretend that the pain isn’t as great as it is; I pray that one day our pain will be more widely recognized and a solution can be found for relief from the pain.
For the moment, this disease is incurable & you come to accept that; however, the chronic pain becomes overwhelming month after month, year after year. If we can get significant pain relief, as we have gotten a reduction in joint deformity, that would go a long way in helping people who have RA, specifically women.
Do not allow yourself to be in pain! Talk to your Dr. Beg him for something strong for the pain. if NSAIDS work, good. If not ask for something stronger. If Darvocet doens’t work, ask again. I was on hydrocodone for years,atleast 10. It is the second number to beware of on 5/500mg. When I went beyond 7.5 I requested 10/325 made by Norco. I have been on that for over 10 years. Take supplements to protect your liver.
The thing about pain is it causes you not to move and when you don’t move the RA gets worse. Yes, these drugs can be addictive but if you are careful and mindful you will be the Warrior of your daily life.
If you need joint replacement do not procrastinate. The sooner you do it the more bone the Dr has to work with.
Sincerely
RA Winner for 42 years!
I am so glad to hear this because so much of the time, I feel like I am all alone even though have a great husband who is very sympathetic. I feel like such a complainer & that I should just suck it up & take it. After reading this, I feel almost normal. LOL.
Anna, what you’re saying does sound very typical. I guess you are normal. 🙂
I stopped eating red meat 20 years ago. I eat chicken, turkey, fish. When shopping for lunch meat I buy only from the deli. Ask if the t/c breast is whole and not pressed. Avoiding processed lunch meat is a must. If you have to buy your own and bake it to make your own do so. Make your own soup and use frozen vegetables instead of canned. The closer you stay to “foods in the raw” the better you will be. No MSG, Aspartame. I try to stay away from artificial sugar altogether. No fast foods, you don’t even want to know what is in that processed meat. Drink lots of purified water and if you can stand it a teaspoon a day of vinegar with the “mother” in it. Remember my comrads, Rome was not built in a day. There are better days ahead! Blessings to all of you!
Pain forced me to retire. Now,years later I cannot take prescription pain medication. I take Tylenol — four arthritis tabs a day. I take prozac which supposely helps. I use caffeine and chocolate. I use warmth. I hurt.
Recently I asked for help. My doctor put me back on prednisone. It’s, for me, bad med. I feel like my tight rope has gotten very frayed; is ready to break; and going to cast me into the fiery abyss. I have only moderate problems with my malady. I just don’t know what to do.
What is the definition of pain? I have had one of those self pity parties for myself this week. I have hurt not horrible pain for 2 weeks. I am having a lot of swelling in my feet and my back has been bothering me enough to make me cry with frustration!! Now the feet maybe caused from a months worth of very high temperatures outside.But being hot makes me cranky.So I am cranking around hurting and no really wants to know that I hurt. I am looked at like I am crazy. I bet this month at least a half a dozen times people would say what’s wrong and when I said I have rheumatoid, they would say how there knees hurt and or they have arthritis too.If I tried to correct them about osteoarthritis and rheumatoid they didn’t really want to know. I think pain is like the word happiness. When asked once in a philosophy class, what is happiness? Not one person could come up with the same definition. It is in the eyes of the beholder. Thanks for the soap box today. I gave myself permission to whine a half day. Gotta go My half day is almost up.
God bless and keep you.
Steph
I’m 55 and on Celebrex twice a day, flexeril at night meth injectionns once a week and Cimzia every 2 weeks. I recently got total double knee relplacements. Wow- that was hard.
But, I realized while on the Percocet my understanding Ortho kept me on for almost two months, that I could cope so much better and function semi normally during the day. that was a wake up call for me. Chronic pain alters you.
I’m back to the Celebrex…. Which doesn’t even seem to help anymore! My rheum just wants to stay with Tramadol, which doesn’t help.
This post is so important!
Chronic pain alters you.
good points, Cyndi. and I had a similar post-surgery experience – realizing how much pain I deal with by having good relief from the meds I was given post op. I also wondered if anyone realized how severe RA pain is since no one had prescribed such doses for my RA pain which is as severe at times.
For me, Celebrex did nothing at all – it was actually created for regular arthritis (OA) from what I’ve read. I hope you find something that works better for you!
Another thought,
I used alcohol for years to treat my pain because I feared being addicted to narcotics. Guess what- I developed a problem with alcohol! Now- I’m sober and wondering if pain management with narcotics would have been the way to go all along?
I’m also curious how many people out there might have the same problem. Vodka is a potent painkiller.
It might be an idea for a discussion.
Thanks for all your blood,sweat and tears to bring us together Kelly!
Thank you – good point – we’ll do that.
What I’m becoming aware of this past week is that as my pain has gone up another level or two and seems to be staying there is that while I figure it is useless to fuss about it (I’ve lived with pain for years, and there are years more to go, so if I start fussing, then when will I stop?) as I work harder to ignore the pain, I end up stuffing most all of my feelings along with it. I love my husband, I truly do, and yet I feel very little toward him. I think it is because I’ve got all my feelings on lock down so the pain doesn’t overwelm. I’m not depressed. I’m just bottled up. Stoic.
NSADS don’t cut it anymore.
very well put… And that will work for a while to cope, but I probably don’t need to tell you that long-term – I’m sure finding another way would be healthier for you. Hoping with you that something helps it get better. I did some grief counseling – but she didn’t “get” RA so it was limited help with this. I finally did get some lortab to take when it’s really bad or when I have to push myself to move about in front of people even while the pain is so bad – to take the edge off.
This article is one of the examples of why I love this website. I feel less alone and misunderstood. Thank you so much. I am in so much pain today, but I know there are others who understand.
I am sorry it’s so bad right now. It helps me also to know you guys are out there. Hang in there for better days, Nancy.
past 2 weeks now, my hands have hurt so bad I have just broken down & cried. I can barely move my right hand & am really pushing the limits of the left’s usage- it is starting to feel the effects of taking on the double duty. I go to a pain management dr & take norco (7.5/325) & methadone (5mg) but on these days, like today, while every joint feels like a hot knife searing through it over & over, even the pain meds aren’t taking the edge off enough to do anything productive beyond shuffling to the bathroom (only when i can’t put it off anymore) & to the kitchen (when I feel too guilty to ask my daughter).
The stress of chronic pain does alter your life & the lives of your loved ones. My relationship w/ my boyfriend has changed drastically in the past 6 months since my RA has gotten worse. I hid the symptoms, pain, etc from him even when we first started dating so I would appear “normal” & not stress him out. Lately, he’s been so stressed about me & me about him that we don’t have anything close to a “normal” relationship. Dates? no. He can’t plan anything bc of how I might be feeling day to day or hour to hour. Sometimes I think I’d be better off alone so no one else would have to deal with this crap disease but me. I already hate that my mom & daughter have to see me like this. Why punish anyone else?
Yes, doctors have to take into account how the excruciating pain of RA affects our lives & all aspects of daily living. It hurts to hold a toothbrush- it’s too heavy. I can’t brush my hair, it’s too far to reach to the top of my head-same with shampoo. I can’t stand today bc the heel of my feet feels like the bones are being crushed- that’s with shoes, and those hurt to even touch my toes. My hips do not want to be put through the grind of literally grinding next to the top the femur to move my legs to walk. they are screaming already, not even moving.
It seems like I am always complaining on this site. I guess when I am not posting, i feel better & am doing everything i can possibly do that day. I can’t complain or whine anywhere else! maybe twitter lol..
Thanks again for being here.
God bless always & thank you Kelly!
I just read your comments this morning and I can feel your pain, frustration and loneliness. Believe it or not, I too am suffering from constant RA pain in my hands, shoulders, ankles, hips making my daily life a living hell… I too go to my room and just cry until I dont have the energy to move. Oh, I forgot to mention that I havent cried actual tears in 15 years! Yeah, can you believe it! I have Sjogren Syndrome and it affects not just my tear production but my saliva too. When you get an opportunity look it up, you’ll find it’s more common with RA patients than most people think. It effect the moisture glands, as well as the skin and organ, in their ability to produce and regulate moisture thru out the body. So, no tears and not enough saliva to moisten my mouth, makes for a very grumpy and depressed lady! So, crying is like someone has thrown a handful of sand into my eyes and eating anything is like chewing on a big wad of paper without water. I’m miserable and sick and tired of being sick and tired!!! Between the pain in my joints, scratchy eyes, dry mouth…death seems sooo much better at times! I’m 50 yrs old, living with my dementia mother (which is a whole different story) and trying not to be a burden on my only son! I cant talk to any of my family members because I already feel like they think I’m just a hypochondiac. I have no friends close enough even to think about burden them with my problems. So, I just keep to myself my true feelings and pretend in front of others.I understand your pain, your struggle the stress, the uncertainty of life and I thank God for this site for providing me the outlet to express my internal turmoil. You made this post awhile back, I hope that you’ll reply to mine. Would love to give you additional support while you drudge thru whatever is keeping you from living a more joyous and productive life. Despite my home life, my pain, the depression, my struggle to maintain as normal of life as possible, I continue to find little pieces of hope (like this site and members)that remind me that life goes on and there are individuals out there who genuinely care whether or not I’m in pain, alone and suffering. So, sistah from another mother, keep your head up, keep hope alive and know that you are not alone!
I have had two divorces from men who finally didn’t want to deal with me and my RA any more. The 2nd one left me for a Triathlete!
I have been unable to work since 1994, despite having 2 Master’s degrees. When I really get to know someone, invariably they say “it is such a shame you can’t work….have you tried xyz?” YES!! I would love to be able to work!!! But with flare-ups and (mainly) terrible fatique, even part–time employers eventually want someone they can count on being a bit more regular in their hours.
For my pain, my rheum doc suggested Fentenyl Pain Patches!! It has helped me tremendously!! I get a constant dose of 100 mcg/ hour over a 72 hour period. Every 3 days I have to put on a new patch, but I don’t have the terrible ups-and-downs trying to stay ahead of the pain power curve.
Good luck to you all!!
Nina, Librarian in my heart, but that’s the only place!
I am recently diagnoses with RA. For many years my dr thought I had MS. You never know what life is going to throw at you. I thank God for websites like this that help me understand what is happening . sometimes I wale up in a lot of pain sometimes the pain is not too bad, but it’s an everyday struggle not to have pain. I truly forgot whatvabdayvis like not to be in pain. I work FT as a Correctional Nurse and I don’t know how long I will last there.One writer sayed it all it’s a disease in which it’s not noticed. Its not viewed as a big disease , but trying being in pain everyday,is very hard. I have to stop typing now because my wrist are very painful. Thank you
In the first of 2 calls my rheumatologist made himself to me, in the past month, he told me I was a fighter. He has been my doc for almost 20 years and has seen me through some really difficult times…and has tried all treatments available,but my RA has not been cooperative. But to hear him say I was a fighter, is also a great validation and good medicine ,in itself. He tries his best to also ease pain, fatigue and anything else that can interfere with daily quality of life.
I have been dealing with this for about 4-5 years now, and just lately it seems to be getting worse. I feel like I am losing my mind most of the time. My biggest fear is that I will end up a miserable person who makes everyone around me miserable.
Speaking as a woman, I think some of it has to do with the pressure to be able to take care of everything. Not to discount the men, as I know they have their own worries and pain – it’s just different. Many of the women I know feel like they have to work, take care of the home, care for the family, and just not say no to whatever is asked. Take all of that and add chronic pain, brain fades, dry eyes, crushing fatigues, etc., and it is just so hard to not flip out. But we fear making others unhappy, and so most of the time we jsut deal with it. Unfortunately that just makes it look like it’s not so bad. Then when we do say anything, people are surprised or unbelieveing because we were “just fine” the day before.
It’s funny and sad, but I even feel guilty for making this post, because it feels like I am whining – and on a day when I took 2 falls and could not go to work. RA sucks.
Dear Chris, I hope you realize that the things you say – worried that you’re losing your mind because you make it look like its not so bad and people wrongly believe we’re “fine” – and that you feel like whining to just talk about it – ALL OF THIS is very very common with this disease. This is one of the saddest aspects of this disease.
One of the most helpful things is to talk w/ others who get it because they have it too. An online community like this one or rheum4us.org – and meeting together face to face with others who have the disease is very helpful to know you are not crazy and we all go through the same issues with this mostly invisilble disease.
Hey everybody thank you for your honesty and well said answers.You help me so much.My pain has moved to my fingers it is sharp and swollen.my rhemy says my numbers look great because of the orencia .The joints that hurt before such as knees and back feel good.I was sleeping good too.Now I don’t sleep well.She says its stress handle that and it will go away.Granted there is stress but what can I do about that.Not worry I guess.Any suggestions would be helpful.
I called the physical therapy department at our rural hospital and spent a morning each with a physical therapist and an occupational therapist. They were so helpful and understanding. I learned what I need to look for in shoes (cushion and support), and types of exercise for different pain/energy levels without stressing joints. I learned about adaptive aides and have my “fat” silverware currently leant out to an acquaintance new to RA. My rheumatologist had not suggested it because so often insurance doesn’t cover it, but he felt it is key to the patient managing their symptoms. My insurance did cover it and was interested in the outcome. I have RA in the jaw and have found the night splint my dentist recommended also very helpful in keeping stressing the jaw joint minimal. I’m in my 12th year and 3 years ago had to cut my work schedule from full time to part-time. The financial stress contributes to my flare ups (lower income, higher medical costs). I am on Humira and a small dose of daily prednisone. My liver enzymes were becoming elevated so the methotrexate was discontinued. I have experienced skin cancer (basal cell) 3 years ago which may or may not have been related to the Humira. I chose to stay on the Humira and see a dermatologist annually. It has made a difference for me and the fatigue factor.
I am in pain everyday. I try not to complain and I am told by my RA Doctor to just keep on moving. Its hard somedays but I try not to complain. Since I look normal with nothing wrong, I am also told Oh you are ok. Im not OK but I try not to complain. I work as a Nurse in a county jail. I work 12 hr shifts. Days and Nights. I have a husband who is disabled and I try to do my best. I try not to complain. I Thank God for this website that I can relate to every story that I read.
Dear Sue,
I know you try not to complain. But you are also only human and you need to have people who can listen once in a while. I feel like I just want to say you have “permission to complain” once in a while. You have so much responsibility and you’re doing so well to keep pushing yourself. I hope you also try to give yourself a break whenever you can.
Sue, I so agree with Kelly – she knows what she’s talking about (God love you, Kelly!). I give myself permission to cry, scream once in a while, preferably when my daughter and grandsons are out of the house LOL. You can’t hold it in forever – you need an outlet of some kind. Some days, when I leave work, I crank up my stereo and just scream as I’m leaving work (well, when I’m a little ways down the road from work – don’t want to freak them out! LOL). Take care of you, Sue. (((HUGS)))
I have a question that puzzles me on a regular basis: how would you describe your RA pain in comparison with say a toothache, a broken limb, etc? Why must RA suffers always have to come up with a pain comparison when they hurt? Why? Why? Pain is pain, the severity of the pain may vary but why are RA suffers always forced to water down their pain or put some type of label on it to keep from trying to compare it to injury pain. I find that many people have the urge to categorize pain in RA suffers because they cant see the obvious broken skin, gaping opening, or even blood…they may observe swollen joints but that dont seem to be enough for them. It’s a pet perve of mine! I even overheard comments from my own family that I was a sorta hypochondriac. That sadden me more than I would ever admit to them. So, many of times I sufferwd in silence to keep from getting those funny looks of disbelief from people. I know that I’m not the only one to have experienced such blatant disregards from other people but its the fact that no one is willing to fathom the severity of the pain of RA…not even the doctors that treat us. They prescribe milder dosage of pain medication, with the excuse of not wanting to make you addictive to any pain medication. But if a patient comes to them with a broken limb or an open wound, not once will you hear a doctor tell them that they will give them a milder pain reliever because they dont want them to become addictive to it. I know, I broke my left ankle in 2009, not one doctor made any mention of prescribing me a milder pain medication. Not all doctors but more than there should be. Most studies of the effects on RA suffers (especially when it comes to women), cant or wont address the devastating pain that one can experience when a flareup is upon them. They’re so busy concentrating on the prevention//drug trials of RA rather than the effects of it on the patient. That would include chronic pain and the inflammation, the effect it has on the relationship with others, your inability to carry on in any resembles of a normal life. That’s all we want, beside a cure it just to be able to live as normal of life as any other person that dont suffer from RA. By labeling the symptoms of RA with ineffectual labeling, only serve to stymie any empathy for non-RA suffers. It’s almost in the same category of giving birth. There are women that can give birth with barely a need for pain medication, and they have a lot of influence on the whole birthing moments. Ones tolerance to pain/discomfort should not be influence by the few that have manage to handle it better. Its to the point where women turn on each other trying to prove that they are more a woman if they give birth without the use of medication. But the ones that succumbs to the pain are somewhat less a woman. The whole argument is ridiculous! Period!! The same with pain and RA, researchers and doctors pit non-flaring RA suffers against each other with labeling like mild, remission…I dont like it and I wish that the medical/research community spend less time on grouping us all in one group. When will common sense come in to play? When one is in pain they only want the pain to subside, it doesnt matter if it’s from an injury or internal warfare from RA, we just want some relief from the pain!! We should be able to get it and not be judge by the amount of pain than any other chronic pain suffer. PERIOD!!!
Hi Valerie, here’s a link to where that was discussed, in case it helps. My daughter drew me a pain scale & then we challenged other bloggers to come up with their ideas http://www.rawarrior.com/crossing-the-language-barrier-of-pain-scales-rheum-blog-carnival/
Good point you made here: “the same with pain and RA, researchers and doctors pit non-flaring RA suffers against each other with labeling like mild, remission…I dont like it and I wish that the medical/research community spend less time on grouping us all in one group. When will common sense come in to play? When one is in pain they only want the pain to subside, it doesnt matter if it’s from an injury or internal warfare from RA, we just want some relief from the pain!! We should be able to get it and not be judge by the amount of pain than any other chronic pain suffer.”
“RA pain is really unexpectedly horrible.” Indeed.
I could cry and scream almost all day every day, but I choose not to. Well, I don’t have an option but not to, otherwise, I’d be committed! I never in my life thought I would hurt as much as I hurt at only 50 years old. I have to cover it up at work because (except for a couple of good friends one of which has fibromyalgia) no one really understands, and most of them really don’t care to understand. I mean, it’s not as if I have a bone sticking out of my body and I’m writhing in pain – so it can’t be THAT bad, can it? (ha!) Like I’ve said before, I wish the parts of my body that ache and hurt like hell would glow “neon” so other people could SEE where I hurt. They would be dumbfounded. Since that will never happen, we RAers continue our daily struggle to take it “one day at a time” and “deal with it” the best we can…..until we get home behind closed doors where we can fall apart – AND CRY AND SCREAM. God bless all of my fellow RAers – love and prayers to each of you.
Carole