Lab results negative for SLE Lupus (that's the really bad one) so that's great news!

I do have discoid lupus erythematosus though.

That one effects the skin and explains these rashes that have been appearing on and off for quiet some time.

Still in the dark about the source of all this chronic pain and fatigue.

I reckon the answers will eventually reveal themselves, but until then ...

[sarahsweets]

I always post here because I have sjogrens. Went to the Rheumatologist’s office yesterday and have to have a biopsy of my salivary gland. Blood work was all over the place. Oh and the reason my toes are curling on my left foot? More reactive arthritis!

feeling low pain

able to get out today for a brief period of time which was nice

feeling the breeze on my face

[lizardlady]

Pfrog, sounds like good and not so good news about lupus. At least it's not the really bad kind.

(*(*(*(*pfrov*)*)*)*)

[~Christina]

Appointment with my Rhuemtologist today

He walks in the door and says ... “ oh no your really hurting I’ve never seen you look so rough”

I guess that would offend some people. Hell I’m just glad I didn’t even have to explain my pain fir once.

Upon exam he noticed most of my joints are more difficult to move.

Anyway we are doing a course of steroids to see if between them and my new biological Humira gets me back on less painful feet.

Pfrog, I’m sorry about your diagnosis, I’m very limited knowledge wise on it, what treatment is available ?

Liz, has your flare decreased at all yet???

@~Christina

I hope the steroids and Humira bring you some relief.

Hurting sucks!

As far as that discoid lupus goes, it mainly effects the skin so non-steroidal topicals such as ointments and creams are helpful.

If it does start getting overly involved there are anti-malarial medications that help as well as immunosuppressive medications.

Other things that help are:

Avoiding exposure to sunlight (especially during peak heat times 10:00 a.m. - 4:00 p.m.)
Wearing long sleeves and hats
Using sunscreens

That still leaves unresolved questions about the source of the chronic pain not associated with the osteoarthritis.

Having CPTSD (and how that eventually impacts ones physical health) has been discussed as a possibility.

Gentle hugs to you and @lizardlady and hopes for a few good days sprinkled in there somewhere.

[~Christina]

Here’s hoping you find help with the least intrusive measures

Thank you for your support

[lizardlady]

Christina, flare settled down to background noise after a couple of days. I always have mixed feelings when a doc recognizes I'm in pain. Nice that they acknowledge it. Suvks to be hurting that badly though.

Pfrog, this ole lizard would be mighty unhappy to be told to stay out of the sun. I am solar powered.

ol, @lizardlady ... I'll probably end up non-compliant on that one and go with sleeves and a hat to help ... I have to have my sunshine too!

Great news regarding work (and as it applies to the arthritis and chronic pain issues) ... My boss (he's an awesome one & thanks to the generosity of a co-worker) has assigned me a route that has a restroom and lunch break area close by so that I do not have to do a lot of walking which is quiet painful and aggravates said condition and pain.

The co-worker had already picked the route but when he found out that the route I had chosen had fallen through and was going to leave me with some rather unfavorable choices, he opted to return to training new hires so I could have an easier go of things considering the pain I'm in ... (I'm tearing up here thinking about his generosity - these are happy tears though).

The boss also told me to get with HR and go ahead with an ADA Reasonable Accommodation Request to cement the deal.

That protects us from those ne'er do well employees that may want to say I got "special treatment" - Sheesh, if those you know whats want to see how special it feels to live with a chronic and painful condition, they're welcome to walk in my shoes for one day!

But, we're not gonna let them rain on this parade!

I'm focusing on the good ones that have my back, not the ones that talk nonsense behind it!

As bad as it all can be most times, sometimes something really good happens!

Hope you and @~Christina are both having a better day with the pain today.

I hereby decree that all Saturdays are to be pain free! (Did It Work?) ... If only it were that easy!

[lizardlady]

Pfrog, your boss sounds like a great person! Good for you for focusing on the positives. It's so easy to focus on negatives when we hurt.

I haven't been a secretary for going on 25 or so years now, but ...

I just typed up the most beautiful ADA Request and e-mailed it to our wonderful HR lady to review and set into motion.

It's very difficult for me to ask for help, but the time has come I simply cannot put it off any longer and must.

I kept reminding myself that I'm not doing anything wrong and have been quite the trooper to make it this far on my own.

I also kept reminding myself that I am not selfish for asking for what I need.

After all, there is a difference between a want and a need, and this most definitely is a NEED!

It's a shame that my family of origin experiences made me feel so much guilt and shame and wrong and badness.

I am none of those things but have to fight those internal messages constantly.

I am proud (humbly so) that I have made it as far as I have thus far.

Many people would have caved by now.

So here is love to me and you because y'all are my support group and help me a lot in between those therapy sessions.

[lizardlady]

(*(*(*(*pfrog*)*)*)*)

[~Christina]

Pfrog glad your asking for help! You are very strong !!!

I've read somewhere that some stress is good for you, but I don't think that applies to those of us with chronic pain.

I had what would be considered a "good stress" day yesterday at work ... Loved every minute of it, too ... Beginning of Fall Semester, helping all those new (freshmen) students get to where they've got to be on a very large, sprawling campus ... Offering words of encouragement to hang in there and how they'd be pros at navigating the bus system and making their connections in no time.

Got home and my body was like pfft!, so straight to bed I went!

Still feeling a bit stiff and brittle all over this morning, but I'm gonna try to trooper on through.

Do any of you ever feel stiff and brittle all over like that?

When I do, I'm wondering if I'm having a flare.

I'm also concerned that if I tripped and fell down that I might shatter into a bunch of tiny little pieces.

So, I'm gonna be extra careful of my footing so as to not do that!

[lizardlady]

Pfrog, stress is a major trigger for a flare to me. Doesn't matter if it's good stress or bad, still sets off a flare.

This is first week of classes here. I'm based at a junior high. Can't count the number of sixth graders I've come across lost and close to tears. I help them s oh rt out where they are going and how to get there. Also assure them that most of the other sixth graders are feeling the same way. Like you I tell them they'll get the hang of it soon.

this week at the park my legs gave way, and it was the most terrifying, unpleasant experience, I've had for quite some time (dizzyness, pain, shaking)

it didn't help that my arm crashed in to a gate and I was entangled in a dog lead

ow

thankfully people at the park rushed to help, but yeah... it wasn't good

that was on tuesday, and my pain on tuesday just increased so much to the point I had to just scream

wednesday and today arn't as bad but still pretty noticeable.

[~Christina]

Wow RV , sorry all that happened. Ouch.

Stress is a huge trigger for Fibro Pain for me. But also any kind of weather fronts blow through and it hits me.

My PsA arthritis is awful , I had to stop one biologic and finally got the other authorized so it will take time to work, I hope it’s quick.

My bone density scan show my bones aren’t very strong so I’m on once a week Fosamax now , I do worry about a bone breaking.

Gentle hugs

[~Christina]

So first 5 days in Florida straight up rain ! So pain , now it’s all clearing and ushering in the screaming heat and hellish humidity !

I’ll be glad when we finally make our way back home to Tennessee, even tho it’s hot and heat index over 100 there’s none of this swampy humidity !

Love me some Tennessee!

Ride up there every chance I get!

Used to have dreams of building a little log cabin over there in Wears Valley.

That may never happen, but ain't nothin' stoppin' me from thinkin' of it still.

Originally Posted by ~Christina

So first 5 days in Florida straight up rain ! So pain , now it’s all clearing and ushering in the screaming heat and hellish humidity !

I’ll be glad when we finally make our way back home to Tennessee, even tho it’s hot and heat index over 100 there’s none of this swampy humidity !

when I think of florida, I always think about people flocking to disney and meeting mickey mouse and boiling in the process.

guess their's more to florida than I first thought