My bones/joints/muscles are aching

[eyeamdry]

I am in bad pain in my shoulder joints.  I can remember having this when the Sjogrens finally hit me good and I knew I was sick with something.  It's not even the movement of the shoulders.  It's a painful burn when I'm not even moving.  Vicodin and Lyrica don't seem to help.  I do have an appt with my rheumy this Friday--but there is nothing they can really do for pain.  I get my pain meds from my GP locally and I see a rheumy 75 miles away.  Wonder if I need something else/different?

I had a partial knee replacement 7 or 8 years ago, long before I knew I had SJS and it's began to hurt around the implant for the first time.  First thing tomorrow is for me to make an appt with my orthopedic doc and have him take a look at this.  I get this pain all the time and don't know if it's a flare, or just day to day.  Or maybe I'm just a flare all the time. lol. 

It's 5 am and I haven't been able to sleep at all.  I will try again.  I have sore eyes too.  Just ate two popsicles to try and soothe the dry throat.  Good night Lucy

[kim31072]

Lucy I hope that you are able to get some sleep and that your dr is able to help you figure out if this is a flare or something that might be a new normal.I hope they can get everything straightened out and you are able to rest better..I think that figures in alot..

kim

[jonnell]

Lucy  Im sorry your not feeling well.  Jenna takes naproxen for her pain but yours sounds like its beyond that.  My thoughts and prayers are with you.   Hugs and kisses and lots of love       Jonnell and Jenna

[JannaLee]

Geeze honey!

I have pretty bad shoulder/neck (actually all my joints) pain 24/7...but no burning.  Mine is a terrible ache and muscle soreness like the day after weight lifting.   

Do you need something for neuro pain?  like Gabapenten (sp?)  Is the burning like a tingling from neuro pain?

It is not good when pain keeps you from sleeping!  You gotta get SOMETHING for this. 

Janna

[KYMOM]

Lucy,  Sorry you have to wait until Friday for your appt.  Hope you find some relief and some sleep till then.  Please let us know how your appt goes.  Roxanne

[wednesday mc haggis]

lucy

this was way i was with fibro, but i know they use lyrica for the fibro pain.
  Also this come sand goes with me, like flare up then settles down, few weks back my knees felt like they were on fire, when i was right stresed, went again, id say it was a flare you were having but then im no rheumy, can you call your rhumy for advice ?/ possibly a short term course of prednisilone ?  sorry your having this i know it aint nice
t x

[marilyn143]

I take lyrica and plaquenil and I am still having the same issues as you.I have alot of  numbing pain at times when I am really flaring.spring seems to be real bad.I also have times when nothing helps and I know it's gonna be a all nighter.I had a major improvement after going on the lyrica I'm down to 1-5 nights a month vs 5-15.now if we can figure out the remaining pain that would be great.weather patterns seem to have a BIG effect on me. : I think maybe durring a bad flare my median nerve gets inflamed?

[eyeamdry]

I don't know when/if I'm in a flare or not.  I don't know what's "normal" any more.  I take so many meds it's not funny, but I am able to do some of the things I want.  I also had b. cancer six months after my SJS diagnosis two years ago.  I had surgery and radiation and that knocked me on my butt.  I'm still trying to get up. 

I also have an appt with my orthopedic surgeon to see about my partial knee replacement which is hurting after 7 or 8 years.  So, still waiting to hear from my GP about the 'yeast' problem which I think is brainfog.  Everythiing is hurry up and wait.  I have pain meds, so it's not too bad.  I have lots of numbness and it's hard to describe.  Numb legs, numb lips and parts of my face, hands etc.

Lucy

[gurs]

Lucy, are you going to see "our rheumy" on friday? Wasn't sure you were still seeing her? I'm going up to sparrow on saturday for my Rituxan infusion? (hopefully-this yeast is pretty bad)
Sounds like your having alot of neuropathy issues...I'm having it all the time, from head to toe. Its terrible. I used to be able to take
Vicoprofen, and it really helped. Vicodin did nothing for me at all?? Ever since my hysterectomy, cant take it, makes me too nervous.
It has motrin in it instead of acetaminophen..

I hope the doc has some good answers for you. I always hear "its the sjogrens" doing all this stuff. Let us know how it goes. Good luck sweetie!

Gursie

[ktfabian]

Lucy-

I'm sorry to hear of the pain you're in.  Like Wednesday, the buring you mention in your shoulders reminds me of the pain I get when my fibromyalgia is in a flare.  Lyrica has helped me with this quite a bit.  I don't know anything about pain related to a partial joint replacement, but I hope you get an answer soon.  In addition to the shoe box of medicine I take already, my rheumie has been prescribing pain medicine for me for almost a year for the pain that the others just don't quite cover.

Gursie- Just wanted to say that, I too, and crossing my fingers hard that I get to take my infusion of Rituxan.  Mine isn't til next Friday, but I thought I'd already be on the mend from the sinus/bronchitis bug my husband was kind enough to bring home.  I'm behind on my Rituxan, and this is to be the "catch-up" infusion that will hopefully put an end to the flare I've been in and will let me start weaning of steroids.
I hope the yeast goes away and that you get your infusion.

Good luck to both of you, Tracy

[eyeamdry]

Gursie-yes I am going to OUR rheumy on Friday, even she is out of the office.  :-(........I didn't want to cancel because I changed some things to make that appt and then I get this little letter explaining she won't be there but the other dr and PA's will be. 

i am having a lot of neuropathy issues, it seems.  More and more I'm just a bag of pajamas lying  on the couch all day.  I do have Vicodin and it does help.  Thing is, I've increased it from two a day to three sometimes and then I run short.  My GP is good with pain issues though. 

I wonder if my rheumy will ever try something "stronger" with me.  I've been on the regular SJs meds methotrexate, plaquenil for two years.  Started Lyrica recently and it helps the neuropathy issues.  Trouble is, it wears off quickly and I'm not going to a higher dose.  I'm at 100 mg 3 x a day and will not increase.  I did take prednisone for a year or so after the diagnosis, but don't want to go there again.  I don't seem to be stressed with infections and colds like a lot of people.  One bronchitis last winter and that's all.  I am also working on my stuff with my GP who thinks my brainfog is a "yeast' issue.  i'm waiting for his call.  Lucy

[gurs]

Oh, I wish you could see her...there is no comparison. Make sure next time you visit, you see her...seriously..especially with your symptoms.
I like the PA...Amanda is her name..she is very young, but seems to know her stuff. I love her entire office though. Like a 2nd family to me.

Yes, you prob need to try something different. Have you ever tried Imuran? I did super on that years ago? We'll, if I make it though both rituxan infusions,
I will let you know if it helps with all that numbess/burning all over....neuro issues. Hope you have a good trip and safe drive.

Gursie