thumb problems - OUCH!!!

I don't see him until mid-October.  Frankly, I think I've been in a flare since mid-August.  A lot of things are hurting more, but the thumb has never been anything close, though both joints in the thumb are not good (the base of the thumb, the usual site RA hits, got a cortisone shot before I was diagnosed, and in fact that set off the original swelling in my wrist - go figure!  But it loosened up the joint and though I have some pain/ache there, it's the other joint that is sending me through the roof.

     I am also starting to get more frequent pain on my left side in various places, so I think the RA is finally starting to hit that side.  It hasn't really been very symmetric to date, I guess because it was caught so early (lucky me!).  But - I think I may be in for it.  My lower back/hip, especially on the left side, has been acting up lately too.  That's totally new (O joy!)

     I was going to go for acupuncture today, but I feel rather than just get a temporary boost, I'm going to go "full speed ahead" and investigate what I can do for a) my neck -still getting those spasms that don't seem to be totally muscle or anything seriously skeletal.  Finally will get an MRI - maybe it's a rheumatoid nodule in my neck?

b) thumb - will see the hand surgeon's PA next week.  I know this would again be a trade-off (might make it harder to write since it's my dominant hand, but I type more than I write anyway!)

     Will let you know how things go -

I recommend you try to get an earlier appointment - waiting two months when you're in a flare can cause damage to your joints. I'm assuming that appointment was made back when your RA was well-managed and if that situation has changed, so should your appointment schedule.

Good luck with the fusion information quest!

It's very unlikely that I could get in, but I was thinking of faxing them about what's going on. (It can be difficult even to reach them by phone, and sometimes it takes several days for them to get back to me when I do get a message through.)

But you're right.  It's ironic that at my last appointment, HE was the one saying 'back off if you can' because normally I was saying 'I'll back off when possible' and he was always saying, the RA usually comes roaring back. 

Surprisingly, my sleep is not too bad.  When my back hurts, I go to a different bed which has more support (but is not on an incline for reflux).  Right now it's my (grown-up) daughter's bed, because my sewing room, which has a day bed raised at one end, just got painted by my wonderful husband (finally) and the shades aren't back up yet, which means there's way too much light in there at night.  (Next chore on my list!)

I took 1/2 percocet (Ahhhh!~) last night along with the regular Tylenol (so as not to go over my personal acetaminophen limit (which is half what's usually recommended) and boy did I wake up feeling better - until I'd been up for 15 minutes and my neck started up again!  but it was nice to have a clear brain - not  befogged by pain.  (When you have RA, who needs torture?  And yet, I know there are people who are so much worse, I keep thinking I must just be a wimp...

My rheumatologist seems to think that it's only the additional OA that's confounding me, since my sed rate is still low (28 or so).  So I don't know if this is a bona fide flare of RA, it may just be the FM - school starting up, etc, and more RA meds will not help that.  In fact, my FM is worst when the RA is under control, almost as if there's a fork in the disease road, and when one path is blocked, the pain/stress/etc goes down the other road (thus RA becomes "The Road Not Taken", to be poetic). 

But OA isn't normally associated with swelling (though I've seem articles that now seem to be saying that may not always be true).  BOTH of my thumbs, the distal (far) joints have swelled now and in the past, even before I had RA.  But before RA, it was not associated with pain, just joint enlargement (definitely OA), and now there is fluid swelling and serious pain, which certainly sounds more like RA than OA...maybe I'm just a mutant!  I really think all of these things have to be linked in ways we really don't understand yet.

Well, I guess I've gone and babbled enough here!

Thanks for writing, I do need to let the doc know -have a good day yourself!

Pardon me for sounding like a bossy big sister for a moment...

Pain isn't a competition, it should not be measured against somebody else's pain, judging yourself to be a wuss because you're having trouble coping. Your pain is relative to your experience and should be measured in terms of its impact on your ability to lead your life and lead it well. And unless you have a medical issue that requires you to take less medication, why not take the medication you need in order to function instead of rationing it and walking through life in pain? Go read Better Living with Chemistry again - I regularly read it myself (yes, despite having written it) whenever I need the reminder that pain meds are tools to help me live my life, not my enemy.

In terms of your neck pain - I'm the lucky owner of a more or less permanent neck injury/whiplash thing that gets worse with the fibro and although all pain can do a number on your mind and wellbeing, there is nothing like neck pain to impact all of your body and fog up your mind. It's as if with other types of pain you can get to a point where you can almost tune it out (even just a little while), but neck pain, you can't. It permeates everything. If it's related to fibromyalgia, ask for a prescription for either Lyrica or a muscle relaxants like cyclobenzaprine. I take the muscle relaxants when I couldn't sleep and it helps to sort of "reset the clock" with the fibromyalgia muscle spasm/clenches.

   I've got the cyclobenzaprine and believe me, I use it when I need it.  But it's not helping as much as usual.  I really think there is a nerve/cervical spine issue here, because of that.  I also had PT, and while it relaxed the muscles that had become stiff & spasmy, beyond that it also made the pain spasm (as opposed to the muscle spasm) more frequent.  (Obviously I was bracing muscles against the spasm, and also grinding...)  In the past, I've found that rubbing inflamed nerves actually makes them worse, and I think that's why massage is making things worse. 

   Again, there has to be something else going on.  I may have mentioned a funny lump in my neck that one person called a lymph node, a doctor said was just a spinous process, the PT said was definitely not a spinous process (and she poked around a lot more than he did).  After X-rays looked OK and an ultrasound showed nothing, my guess is that it's a rheumatoid nodule.  Maybe it will have to be removed.  If they do find something, I'm sure it will have to be at least biopsied.  Whatever it is (or isn't), I hope the cause of the problem is found.

    I'd be happy if I could take percocet regularly, but I've found that if I take it when I don't ABSOLUTELY need it, I get nauseous and feel worse.  So - I wait to see if the Tylenol will work by itself, and if not, I move on to the 'big guns' in small doses.  (I am very careful about the total acetaminophen.  It used to be recommended that people not go over 4 grams a day.   I don't take more than 2 grams a day (except for immediately after surgery when I may have taken a bit more). I just don't have a lot of tolerance for drugs in general, this is nothing new for me.  I attribute it to a weak liver - when diagnosed with RA back in 2004 I had been on 100 mg of Celebrex and 10 mg of amitriptyline for about 5-6 months, and my liver enzymes were up in the 100s.  I stopped everything and they were back to normal in 2 weeks.  (It's supposed to take months...)  So - the bad news is, they go up easily, the good news is: they come down fast. 

     I find meditative practices help when I can do it.  I used to be able to do silent meditation, but now Tai Chi works better (when I remember to do it, and/or not be lazy...)

Actually, the sensitivity to medication can also be due to fibromyalgia - for as long as I can remember, I've required much lower doses of meds than recommended (and my rheumatologist used to think I was nuts). However, there's a recent study proving that fibromyalgia makes you more sensitive to medication, just as it makes you more sensitive to everything else.  I take my meds in half a pill for e.g., Tylenol and in terms of codeine and cyclobenzaprine, it's a quarter. So I hear you.  Just wanted to make sure that you weren't depriving yourself because you thought you were a wuss.

Yes, that's very true.

     But the liver/med thing may run in my family:

a) My nest oldest sister (the healthy one, who still runs triathlons at 62...) used to take 1/4 of a baby aspirin as a teen, for the worst possible headache, because more was too much!

b) My oldest sister had back pain and was prescribed lodine.  After the second dose she turned green & yellow.  Her doctor said, if it didn't clear up, he'd put her on the liver transplant list!  Fortunately, she recovered after 5 weeks on disability... she now has polymyalgia rheumatica (happened later).

c) my next youngest sister got addicted to headache meds (codeine primarily, I think) and is a (non)recovered alcoholic.  She has major fibro and I hate to say it, but is an accident waiting to happen, because she isn't very controlled on meds.

d) my youngest sister has polymyalgia rheumatica as well.  She's responsible, and on a low dose of prednisone... she's really young to have this (she doesn't meet the normal age criteria even close), and I just hope it's not going to turn into RA...she's not positive for rheumatoid factor but has a high ANA level and ESR (before she got the meds).

By the way, I don't mind at all having a bossy big sister - it's nice to know that someone is listening and caring, even if I don't agree with the suggestions.  It's really helpful to be able to bounce my thoughts, feelings, etc on someone who more than 'knows the drill!'  Because, in pain, we don't always think very straight! 

     Or even think at all - moan, groan!  I thrive on speculating on future plans and possibilities, but sometimes they get out of control and are just all swirling about, leaving me in chaos - like, which symptom do I pay attention to first?  My half-numb foot at the end of the day (remnant of surgery or reoccurence of neuroma?), my stiff neck/back/shoulder?  (heating pad, hot shower, drugs?  All of the above?)    My fluttery heart (is that the cyclobenzaprine making that happen again?)  My sore knuckles (not just the one hand but now both?)  But if I go to bed too early, I'll wake up way too early... and need more drugs...  Well, you get the picture, and more.

    Then there's the unfulfilled expectations - I used to go on retreats fairly regularly - even one night away from home in a prayerful place can work wonders on the psyche... but now, that 3-hour drive is just an effort in itself, I have to drink extra caffeine just to get there ... after work, and I'm too tired .... to care... so I just go home and watch TV with the cat while my husband does his stuff or goes back to work.

     And that's just the beginning of what I no longer do!

Wow - I didn't know I could whine so much.  Mostly I keep it to myself.  Because ...

there are those roses to smell - I DON'T have to run around crazy doing all kinds of volunteer work like I used to.   It's OKAY ! to love being home, to putter, or just (heavens!) to rest.  To clean out my files, go through my fabric, contemplate my life, re-vision my future.  Think about my family that's 'gone ahead' and remember them.  One can't do all this if one is constantly on the run.  And at my ripe old age of 58, it's a necessary part of how my life is changing.  My father developed cancer when he was only a year older than I am, and passed away at 62 (didn't quite make the five-year mark).   A bereavement counselor gave me just one piece of advice, when I consulted her once after my mother died.  She said, "You have a lot of issues - but now, you can be who YOU are. You don't have to be who your mother wanted you to be."  9Did I ever do that?  Horrors....)   However, it goes further than than.  My mother never (consciously) tried to mold me (just my posture, and was unsuccessful!), however, I probably was TRYING to be what I THOUGHT she wanted me to be - and, au contraire, REACTING against some of HER assumptions.  I am able to let go of all that gradually.

     What has all this got to do with RA?  It's made me (forced me) to stop and think and feel.  Not in a very nice way, for sure, but (to paraphrase Clint Eastwood), "a person's got to know their limitations."  To make the most of your life, don't squander it on things you don't want, don't need, including meeting unrealistic expectations.  You can't 'make the most' of what you don't have!'   Yes, I had some personal ambitions. But here, it's not a question of giving up something good.  It's a matter of taking ownership of what you are, and have.  Church folks would say , "You shall know the truth, and the truth will set you free"  or  'that's good stewardship.'  Uh-oh - getting preachy, I'd best stop right here! (and get back to work...0

By the way, I don't mind at all having a bossy big sister - it's nice to know that someone is listening and caring, even if I don't agree with the suggestions.  It's really helpful to be able to bounce my thoughts, feelings, etc on someone who more than 'knows the drill!'  Because, in pain, we don't always think very straight! 

     Or even think at all - moan, groan!  I thrive on speculating on future plans and possibilities, but sometimes they get out of control and are just all swirling about, leaving me in chaos - like, which symptom do I pay attention to first?  My half-numb foot at the end of the day (remnant of surgery or reoccurence of neuroma?), my stiff neck/back/shoulder?  (heating pad, hot shower, drugs?  All of the above?)    My fluttery heart (is that the cyclobenzaprine making that happen again?)  My sore knuckles (not just the one hand but now both?)  But if I go to bed too early, I'll wake up way too early... and need more drugs...  Well, you get the picture, and more.

    Then there's the unfulfilled expectations - I used to go on retreats fairly regularly - even one night away from home in a prayerful place can work wonders on the psyche... but now, that 3-hour drive is just an effort in itself, I have to drink extra caffeine just to get there ... after work, and I'm too tired .... to care... so I just go home and watch TV with the cat while my husband does his stuff or goes back to work.

     And that's just the beginning of what I no longer do!

Wow - I didn't know I could whine so much.  Mostly I keep it to myself.  Because ...

there are those roses to smell - I DON'T have to run around crazy doing all kinds of volunteer work like I used to.   It's OKAY ! to love being home, to putter, or just (heavens!) to rest.  To clean out my files, go through my fabric, contemplate my life, re-vision my future.  Think about my family that's 'gone ahead' and remember them.  One can't do all this if one is constantly on the run.  And at my ripe old age of 58, it's a necessary part of how my life is changing.  My father developed cancer when he was only a year older than I am, and passed away at 62 (didn't quite make the five-year mark).   A bereavement counselor gave me just one piece of advice, when I consulted her once after my mother died.  She said, "You have a lot of issues - but now, you can be who YOU are. You don't have to be who your mother wanted you to be."  9Did I ever do that?  Horrors....)   However, it goes further than than.  My mother never (consciously) tried to mold me (just my posture, and was unsuccessful!), however, I probably was TRYING to be what I THOUGHT she wanted me to be - and, au contraire, REACTING against some of HER assumptions.  I am able to let go of all that gradually.

     What has all this got to do with RA?  It's made me (forced me) to stop and think and feel.  Not in a very nice way, for sure, but (to paraphrase Clint Eastwood), "a person's got to know their limitations."  To make the most of your life, don't squander it on things you don't want, don't need, including meeting unrealistic expectations.  You can't 'make the most' of what you don't have!'   Yes, I had some personal ambitions. But here, it's not a question of giving up something good.  It's a matter of taking ownership of what you are, and have.  Church folks would say , "You shall know the truth, and the truth will set you free"  or  'that's good stewardship.'  Uh-oh - getting preachy, I'd best stop right here! (and get back to work...0

It's also possible that the Enbrel is not working as well (how to know whether the disease is worse or the meds not working as well?!).  My doctor was saying I could spread out the shots more, however, I can't.  MAJOR FATIGUE hits at 3.5 days like clockwork!  Will discuss with him in October and hopefully will know more about all the rest by then...

The page wouldn't load for me, but I hear you on the thumb thing.  Mine's extended the wrong way, too - as long as my RA's pretty well controlled, it's fine. When not - OUCH!

And if you can't "go on" here, where can you?

If you google "hyperextended thumb" it will probably come up.  Funny, I tried for several days to find some reference but until I googled the right term, I came up with nothing. I did find out that when it's due to an injury it may be called "gamekeeper's thumb".  No one calls it the same as my parents, but that's probably politically incorrect anyway. Some call it "Hitchhiker's Thumb."  It also turns out the "thumbs up" gesture seems to mean different things in different cultures: either very good/perfect, or ... very obscene, like "the finger." 

I also had to regroup to remember which way is "flex" and which is "extend" -  Adducted vs. abducted is another swirl of confusion...

Ah, what we can learn from the web! Funny, I used to hate to hear about everyone else's surfing because I didn't want to even see a computer at home, after working on one all day.  Boy, has that changed!  But my husband's on it a lot at home, and now I have to wait to use it!