RA, AS, Lupus and any other AI joint pain Hivers

[Pawz4me]

I know from current and past threads there are several of us here.

I have rambling questions for those of you who've been at this longer than me. I'm not even sure exactly how to word it, so bear with me if you will.

I guess the simplest I can boil it down to is -- what are your goals for treatment regarding pain, and how do you describe things so that your rheumy understands? Do you try to get to pain free? Is that even possible, or realistic? Or is it absolutely what I should be shooting for? I'm trying to figure out how to best communicate with my rheumy and how to best advocate for myself.

Short history--After having on/off symptoms for about a decade, and having very "on" symptoms that I put on the back burner for months (due to DH's medical issues, mostly) I was diagnosed last year with seropositive RA. I got an appointment with a rheumy relatively quickly, and he started me on methotrexate, added in leflunomide, played around with the methotrexate dosage a bit (mostly because he doesn't think it's helping me). I think he has me listed as stage 2. At my last appointment he mentioned a biologic. 

When I first started treatment and asked him about goals, his response was "No swollen joints and as pain free as possible."

So . .  swollen joints are fairly easy. They're either swollen or they're not, a lot or a little. FWIW,  one of my PIP joints still is/always has been swollen, and my right elbow is now fairly consistently staying slightly swollen.

But how do you quantify "as pain free as possible"? Unless you miraculously got to pain free with the first treatment or two--how would you know when you were "as pain free as possible" without trying them all?

I hurt to some degree almost every day. Some more than others, of course, but always something. I've been told all my life by medical professionals that I seem to have a very high tolerance for pain, and I believe that's probably true. So some days I can shove it to the back of my mind and get on with my day. As long as the fatigue is under control I can deal with pain. But -- that's probably not a good approach, as I'm thinking that even without significant swelling pain may indicate increasing joint damage. Which I definitely want to avoid, of course.

So, back to the questions -- How do you quantify your joint pain? I hate the grade-your-pain-on-a-1-to-10-scale thing, as I'm a bit afraid that I may be under rating mine plus it's one snapshot he's asking about. What I'm feeling right then, not necessarily what I've felt in general over the last two or three months. Are there any key words that you use with your rheumy to describe your pain or the level?

And feel free to use this thread to discuss any other issues or concerns. Maybe we can all learn something.

[Serenade]

16 minutes ago, Pawz4me said:

 

I hate the grade-your-pain-on-a-1-to-10-scale thing, as I'm a bit afraid that I may be under rating mine plus it's one snapshot he's asking about. 

 

 

With RA, it's hard to rate the pain.  One minute it might be zero, the next you might step funny and it will be 7. 

In the past, I've had times when I've been relatively pain free for stretches at a time, except during flares, which were usually short.  For most of my time with RA, I was treated with a combination of Sulfasalazine En-tabs and Relafen, with prednisone as needed for flares.  This worked well for me.  I purposefully chose not to take Methotrexate. I'm not even sure anyone uses Sulfasalazine anymore.   I chose that treatment because it's what a German friend used successfully.  It didn't have as many potential side effects as Methotrexate, and I was able to take it while pregnant.

Then I stopped going to the doctor for a while, too long, really, but I made my choice. There's a bit of a story there that I'm not comfortable sharing here, but let's just say that even though I did fine for awhile, and I don't regret my choice, I'm going in for a total knee replacement next week.  I probably need both knees done.  After that,  I'll probably see a rheumatologist again, which I'm dreading.

Right now I have a lot of pain, although often I can sit down and feel fine for a long time, too.  This weather we're having in central NC right now affects me a lot.  I'm wondering how much of my pain is due to my other joints getting out of whack due to my knee problem, and how much is due to a true flare. I guess time will tell.  

 

[Pawz4me]

2 minutes ago, Serenade said:

 

This weather we're having in central NC right now affects me a lot.  

 

I know! I'm probably just a bit west of you in NC. Humidity is evil. I used to think weather didn't make much difference with RA, but I've changed my thinking on that. I think our joints are like old wooden doors--they never close right, maybe they're always just a wee bit swollen. Add in some humidity and . . . 

[Serenade]

4 minutes ago, Pawz4me said:

I know! I'm probably just a bit west of you in NC. Humidity is evil. I used to think weather didn't make much difference with RA, but I've changed my thinking on that. I think our joints are like old wooden doors--they never close right, maybe they're always just a wee bit swollen. Add in some humidity and . . . 

 

This is so true.   Those weeks where it was very hot and dry, I felt much better.  Maybe I should move to Arizona....

[Pen]

Offering sympathy.  

I haven’t even been able to find a rheumatologist who I can see, let alone who will listen or understands anything since I left New York.   My old gp retired.  My new one is not very  sympatico.  

I mostly self treat with over the counter medications, supplements, herbs, Epsom salts, ice packs, heat packs, etc. etc.  

 

I don’t have goals like “to get pain free”.  I have goals of doing what I can do on a day to day or hour to hour basis in life—with limiting pain to where I can cope being a part of the challenge, but not a goal itself 

[prairiewindmomma]

I was diagnosed with seronegative RA ten years ago. I've had a fluctuating positive RF factor for the last few years. I have a high degree of pain tolerance; I think most people with chronic AI disease do because we haul our butts out of bed in the morning and keep on at life.

A few thoughts:

1. My goal is to have all of my pain be ignorable.  If I sit and think I can list things that hurt, but if I'm just going about my day, I don't want things nagging at me, interfering with life, or making me grumpy at a subconscious level. 

2. I, occasionally, have a pain free day.  It reminds me of other people's normal, and helps me gain perspective. I think it's possible to lose perspective about pain and carry more than we need to. I had a rheumy up my meds a year ago and I am doing much better and have been in remission for the most part for two years now (I had a flare in October for 3 weeks).

3. I sometimes misattribute things to RA which are actually solvable problems. I am now educated about plantar fasciitis and achilles tendonitis, but I wasn't several years ago, and my rheumy didn't clue in that what I was describing was not joint pain but soft tissue issues.  I think that it's so important to do joint counts and measurements and to physically palpitate stuff AND to occasionally go visit PT to get a fresh set of eyes on things. In an ideal healthcare world, I think we'd be doing a lot more physiotherapy than we do in the US to maximize range of motion and physical strength and to work on learning how to manage life in a proactive way to minimize joint strain. (ie--how to exercise and do life in a healthy way)

4. When I am training a new rheumy in how to work with me and interpret what I've saying (I've had two major cross country relos in the last four years), I describe my pain relative to real life things they may have experienced---my fingers are hurting with sharp pains that also throb, as if I am being stung by bees repeatedly....or, this hurts to the point of where I am almost about to cry and I really have to breathe through this and can't think about anything else, like when I shattered my ankle or birthed my ten pound daughter naturally. When I describe the bee sting pain as being a 2 and broken bones as a 5....they have an idea of my scale. Like, an 8 for me is when I was throwing up from the pain until I  passed out kind of deal.  We have this conversation early on, so that they know that if I'm calling and I'm describing real pain and asking for steroids, I'm not getting blown off.  (I cannot take ibuprofen or tylenol and refuse to take prescription painkillers--so far--so they also know I'm not a pain pill seeker, which apparently is a big problem in most practices.) 

5. I describe things that I can or cannot do.  When things are bad, I cannot hold my phone or a pen.  When things are ok, I can do most of life, but not do my own necklace or earrings or any type of hand intensive thing. I have to take breaks folding a load of laundry.  Life is really good right now--I hand stitched some clothing repairs last night, and I am cooking with my cast iron skillet. Talking about functional differences in your life with regards to how you're doing in another way to quantify how well you're doing without talking about an arbitrary thing like pain. 

[Jean in Newcastle]

I have Fibro so probably a bit different.  But my goal is functionality and "not being in an active flare".  The daily pain of a non-flare day has become background noise but I have had to live with it for 30 years now so it really is my normal.  Not that I've ever learned to like it or to "embrace it".  But the daily pain of a non-flare day is an achiness that I can consciously ignore if I try hard enough.  Flares are banging at the windows with all their might and can not be ignored.

I have learned to describe my symptoms in ways that doctors can quantify or to put it in words that they can "see" even though they can't identify from their own non-fibro experience.  So for me, "It takes me 3 hours to vacuum a room that a 'normal' person my age would be able to do in 10 minutes" (which was a real life example from a few years ago) gives them a picture of my functionality and quality of life that a number on a pain scale cannot give.  Or "If I do this exercise, I have to do my Lamaze breathing while doing it".  Or my most recent description which has finally gotten some attention from the doctors for my muscle issues:  "I am tired of auditioning for The Exorcist".

Pain scales don't do me any good.  When you are in constant pain then it's like very strong static - you can't pinpoint the locations easily or even the strength because it overwhelms the senses.  I have had doctors get really irritated when the answer to every question of "does this hurt" is "yes". 

[Pawz4me]

40 minutes ago, Pen said:

Offering sympathy.  

I haven’t even been able to find a rheumatologist who I can see, let alone who will listen or understands anything since I left New York.   My old gp retired.  My new one is not very  sympatico.  

I mostly self treat with over the counter medications, supplements, herbs, Epsom salts, ice packs, heat packs, etc. etc.  

 

I don’t have goals like “to get pain free”.  I have goals of doing what I can do on a day to day or hour to hour basis in life—with limiting pain to where I can cope being a part of the challenge, but not a goal itself 

Sorry you're having trouble getting adequate care. That stinks.

 

29 minutes ago, prairiewindmomma said:

I was diagnosed with seronegative RA ten years ago. I've had a fluctuating positive RF factor for the last few years. I have a high degree of pain tolerance; I think most people with chronic AI disease do because we haul our butts out of bed in the morning and keep on at life.

A few thoughts:

1. My goal is to have all of my pain be ignorable.  If I sit and think I can list things that hurt, but if I'm just going about my day, I don't want things nagging at me, interfering with life, or making me grumpy at a subconscious level. 

2. I, occasionally, have a pain free day.  It reminds me of other people's normal, and helps me gain perspective. I think it's possible to lose perspective about pain and carry more than we need to. I had a rheumy up my meds a year ago and I am doing much better and have been in remission for the most part for two years now (I had a flare in October for 3 weeks).

3. I sometimes misattribute things to RA which are actually solvable problems. I am now educated about plantar fasciitis and achilles tendonitis, but I wasn't several years ago, and my rheumy didn't clue in that what I was describing was not joint pain but soft tissue issues.  I think that it's so important to do joint counts and measurements and to physically palpitate stuff AND to occasionally go visit PT to get a fresh set of eyes on things. In an ideal healthcare world, I think we'd be doing a lot more physiotherapy than we do in the US to maximize range of motion and physical strength and to work on learning how to manage life in a proactive way to minimize joint strain. (ie--how to exercise and do life in a healthy way)

4. When I am training a new rheumy in how to work with me and interpret what I've saying (I've had two major cross country relos in the last four years), I describe my pain relative to real life things they may have experienced---my fingers are hurting with sharp pains that also throb, as if I am being stung by bees repeatedly....or, this hurts to the point of where I am almost about to cry and I really have to breathe through this and can't think about anything else, like when I shattered my ankle or birthed my ten pound daughter naturally. When I describe the bee sting pain as being a 2 and broken bones as a 5....they have an idea of my scale. Like, an 8 for me is when I was throwing up from the pain until I  passed out kind of deal.  We have this conversation early on, so that they know that if I'm calling and I'm describing real pain and asking for steroids, I'm not getting blown off.  (I cannot take ibuprofen or tylenol and refuse to take prescription painkillers--so far--so they also know I'm not a pain pill seeker, which apparently is a big problem in most practices.) 

5. I describe things that I can or cannot do.  When things are bad, I cannot hold my phone or a pen.  When things are ok, I can do most of life, but not do my own necklace or earrings or any type of hand intensive thing. I have to take breaks folding a load of laundry.  Life is really good right now--I hand stitched some clothing repairs last night, and I am cooking with my cast iron skillet. Talking about functional differences in your life with regards to how you're doing in another way to quantify how well you're doing without talking about an arbitrary thing like pain. 

That's all very helpful. I'm going to come back and re-read it in a bit. I think you're absolutely right about losing perspective about pain, and I think that's at least part of what I was trying to address. I don't trust that I remember what normal feels like.

 

29 minutes ago, Jean in Newcastle said:

I have Fibro so probably a bit different. 

Or maybe not--there's a pretty strong overlap and correlation between fibro and RA. Apparently as many as 30 percent of people with RA will eventually also get a fibro diagnosis, and people with fibro are at significantly increased risk of developing RA. My rheumy casually threw out the possibility that I might have fibro a couple of appointments ago. I tried to ignore that. I don't need anything else, and at least for now I really don't think it fits.

[TravelingChris]

16 hours ago, Serenade said:

 

This is so true.   Those weeks where it was very hot and dry, I felt much better.  Maybe I should move to Arizona....

I lived in New Mexico for 4 years with RA, lupus, etc.  I had plenty of times, I could barely walk, use my hands, etc, etc, etc.  I also am on a number of facebook groups dealing with my AI diseases.  There are a lot of people in dry climates who are suffering too.

[Pawz4me]

56 minutes ago, TravelingChris said:

I lived in New Mexico for 4 years with RA, lupus, etc.  I had plenty of times, I could barely walk, use my hands, etc, etc, etc.  I also am on a number of facebook groups dealing with my AI diseases.  There are a lot of people in dry climates who are suffering too.

I don't think anyone believes a dry climate is a miracle cure by any stretch of the imagination. But I do know for myself humidity is an aggravating factor. My symptoms are still there on beautiful, low humidity days. But they're usually not quite as bad.

[Junie]

My RA was well controlled, but it isn't any longer.  😞

I went on a biologic shortly after diagnosis but I had to stop taking it because I found out that I was expecting dd11.  (Biologics are now deemed safe enough during pregnancy, but they were not then.)  I went on a gluten-free diet after discovering a wheat allergy and my immune system settled down for a while.

A couple of years ago the RA sprung back to life when a hurricane came up the East Coast.  It hasn't settled down yet.  I went on a biologic and it seems to help, but I still have a lot of bad days.  My arthritis is very much affected by the barometric pressure.  I have actually gotten quite good at predicting precipitation up to two days in advance.

My wrists used to bother me quite a lot, but in recent years the pain has decreased.  My rheumy showed me that my wrists are actually locked.  Apparently some of my wrist bones have fused together!  The good news is that they don't hurt any more.  The bad news is that I have limited mobility in my wrists.

[TravelingChris]

18 hours ago, Serenade said:

 

This is so true.   Those weeks where it was very hot and dry, I felt much better.  Maybe I should move to Arizona....

Yes, I generally feel better over here when it is hot and dry too but a lot of it has to do with pressure and pollen/mold issues aggravating at least my RA.  But what happens when you move to a place that is dry and has different plants/molds/etc, different pressure patterns/  is that your body adjusts and then your immune system generally decides to go to work again and starts attacking inappropriately.  

I have lived in many different climates and my RA/AS/lupus/Sjogren's didn't get better anywhere.  A change in climate for short times did make it better, often.   I know that for me, the ocean has been the best place for me to feel better but never a hundred percent.  And I cannot be cruising or taking boat trips all the time either.

[TravelingChris]

19 hours ago, Pawz4me said:

I know from current and past threads there are several of us here.

I have rambling questions for those of you who've been at this longer than me. I'm not even sure exactly how to word it, so bear with me if you will.

I guess the simplest I can boil it down to is -- what are your goals for treatment regarding pain, and how do you describe things so that your rheumy understands? Do you try to get to pain free? Is that even possible, or realistic? Or is it absolutely what I should be shooting for? I'm trying to figure out how to best communicate with my rheumy and how to best advocate for myself.

Short history--After having on/off symptoms for about a decade, and having very "on" symptoms that I put on the back burner for months (due to DH's medical issues, mostly) I was diagnosed last year with seropositive RA. I got an appointment with a rheumy relatively quickly, and he started me on methotrexate, added in leflunomide, played around with the methotrexate dosage a bit (mostly because he doesn't think it's helping me). I think he has me listed as stage 2. At my last appointment he mentioned a biologic. 

When I first started treatment and asked him about goals, his response was "No swollen joints and as pain free as possible."

So . .  swollen joints are fairly easy. They're either swollen or they're not, a lot or a little. FWIW,  one of my PIP joints still is/always has been swollen, and my right elbow is now fairly consistently staying slightly swollen.

But how do you quantify "as pain free as possible"? Unless you miraculously got to pain free with the first treatment or two--how would you know when you were "as pain free as possible" without trying them all?

I hurt to some degree almost every day. Some more than others, of course, but always something. I've been told all my life by medical professionals that I seem to have a very high tolerance for pain, and I believe that's probably true. So some days I can shove it to the back of my mind and get on with my day. As long as the fatigue is under control I can deal with pain. But -- that's probably not a good approach, as I'm thinking that even without significant swelling pain may indicate increasing joint damage. Which I definitely want to avoid, of course.

So, back to the questions -- How do you quantify your joint pain? I hate the grade-your-pain-on-a-1-to-10-scale thing, as I'm a bit afraid that I may be under rating mine plus it's one snapshot he's asking about. What I'm feeling right then, not necessarily what I've felt in general over the last two or three months. Are there any key words that you use with your rheumy to describe your pain or the level?

And feel free to use this thread to discuss any other issues or concerns. Maybe we can all learn something.

Same here.  And I have a rheumatologist appointment next Monday and am totally unsure whether to ask for a change in biologic ( I am on Cimzia now), to go back to 20 mg leflunomine (I was lowered to 10 mg due to elevated liver functions), just keep taking extra steriods,   start taking opioids much more regularly, some other medication or just wait for weather to turn better.

Pawz4me, about biologics, they have many other benefits than just your RA.  TNF ijnhibitors- like Humira, Enbrel, Cimzia, and a number of others have all had unexpected benefits like greatly lowering heart attack risk to reducing chances of developing Alzheimer\s to reducing asthma issues.  I was scared to take biologics for a number of years.  I regret that.  I could have been a better homeschooling mom to my youngest if I had been on them.

[Junie]

Oh, and about the pain scale...

I use the pain scale, but I will also explain that unmedicated childbirth was a 7.  

[Jean in Newcastle]

I don't know how to interpret my own pain.  I was in the ER walking and joking around and they didn't believe that I had kidney stones - until they did a scan.  But other times little things (like getting cold) seem to cause me great pain.  So do I have good pain tolerance or bad?  I just can't tell.  The one thing I can count on as an indicator is if I start throwing up non-stop then the pain must be bad even if I don't feel the pain as "pain" as such. 

[Pen]

19 hours ago, Pawz4me said:

Sorry you're having trouble getting adequate care. That stinks.

 

Yes— except...

 I have the feeling that when I had adequate care l had better outer symptom management, but with the underlying condition getting worse.  

Managing on my own I think I have a more stable situation as regards the AI 

Like I am more able to deal with myself as a whole being rather than as symptom treatment and maybe causing more harm...   sort of like a lesser version of the treatment for stage IV  cancer thread situation where treatment  itself can perhaps cause more problems 

also recognition of possible relationship between Lyme et al and AI was helpful in my case

 

[Pawz4me]

My appointment this morning went well, I think. After mulling over all the helpful comments you all have made I decided to approach things mostly from a functional standpoint -- I've definitely been having more issues with jar lids and can openers, and I'm dropping things more, etc. I feel more assured speaking about things like that than trying to gauge pain.

Regarding soft tissue versus joint -- One of my new issues since the last appointment is right elbow. He thinks it's tenosynovitis, possibly (probably?) related to the RA. I had that in the two middle fingers of both hands prior to diagnosis--I was home treating them by splinting with craft sticks and self stick gauze at night to keep them from triggering. Fun memories (not).

The plan is to stick with 20 mg. of leflunomide and increase the methotrexate back to 15 mg. And assuming my TB test is okay he's going to start the insurance process to get me approved for a biologic. He mentioned both Enbrel and Humira, but said it will of course depend on what my insurance covers. My impression is that he doesn't necessarily think I'm *that* bad, but rather believes that pretty much everyone with RA should be on a biologic if possible. And since we've now passed the "step up" time required by most insurance he wants to go for it.

[Pawz4me]

2 hours ago, Jean in Newcastle said:

I don't know how to interpret my own pain.  I was in the ER walking and joking around and they didn't believe that I had kidney stones - until they did a scan.  But other times little things (like getting cold) seem to cause me great pain.  So do I have good pain tolerance or bad?  I just can't tell.  The one thing I can count on as an indicator is if I start throwing up non-stop then the pain must be bad even if I don't feel the pain as "pain" as such. 

I hear you. When I was in labor with oldest DS the contractions were nowhere near as painful as I thought they were supposed to be. I'd been having them for fifteen hours before I decided I probably should go get checked, but the thing that really made me decide to go was that they were getting closer together, not that they were painful. I think I was dilated to about eight when I got the epidural, and I still didn't feel like the pain was anything to really get excited about. But a few years later I had a horrible sinus infection and so much pressure that I truly felt like I was dying. I guess we're all more/less sensitive to different types of pain, even if overall we have a higher tolerance.

[6packofun]

I have a question, if you all don't mind?  My 20yo dd is dating a great young man who has RA. What are some things she should know, questions she should ask in order to be sensitive to his condition, things that might help him, etc.?   It has only been 3-4 months but they are fairly serious and I have a feeling that he might be "the one."  If you'd prefer I ask in a separate thread, I can do that, as well.  Thank you!

[Pawz4me]

43 minutes ago, 6packofun said:

I have a question, if you all don't mind?  My 20yo dd is dating a great young man who has RA. What are some things she should know, questions she should ask in order to be sensitive to his condition, things that might help him, etc.?   It has only been 3-4 months but they are fairly serious and I have a feeling that he might be "the one."  If you'd prefer I ask in a separate thread, I can do that, as well.  Thank you!

You're fine asking here, as far as I'm concerned.

Others will probably know more than me, but I think in general the younger a person is when they're diagnosed the worse it's likely to be. A doctor a few years back explained it to me this way -- the younger you are the stronger the immune system is. So when an auto immune illness strikes a young person the immune system is capable of hurting or fighting its own body more. When you're older and the immune system is starting to weaken it's usually less bad. (But I never liked him much, so it won't bother me if somebody says he was wrong.)

For me the fatigue is what really bothers me the most. You might want to have her read about spoon theory. She probably shouldn't expect him to have nearly as much energy as most people his age, and if he says he's tired he's probably really, really tired.

[ktgrok]

I'm following along because I'm realizing I did not give an accurate picture of what was going on when I saw the orthopedist. I think the idea to focus on practical things I can and can't do, the functionality of it, makes SO much sense! Like, I flat out can't open a package that says "tear here",  and wince when i open a can of soda, and have to use my other hand to open a bottle of water. 

Also, ways I'm accommodating. So I have to stop sitting tailor style because it makes my knee hurt so I limp when I get up. 

[Pawz4me]

Good luck, Katie. I started having symptoms about ten years ago. It took that long to get a diagnosis other than "probably osteoarthritis," and I don't think that time frame is unusual.

My knees aren't affected by RA, but I do have to be careful how I sit or they ache, and I have to be very careful to replace shoes when the support starts to go or the knees let me know loud and clear that it's time. But for me I think that's mostly just plain old aging. I can't even say it might be OA (or at least not yet), because as long as I treat them right they behave.

[prairiewindmomma]

I think a lot of older people with RA also have some joints with OA. It’s not uncommon at all.