elbow pain and doctor call

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Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 7/10/2009 6:12 PM (GMT -6)   
I haven't written in a while.  I hope everyone is well.  I guess this is mostly a ranting message.  Just frustrated.  But, if anyone has any thoughts about anything please definitely share!!
I've been doing really well on the lower dose steroids and Plaquenil.  Until today...I woke up this morning with really bad pain in both elbows and the right elbow was so stiff and painful that it took me a while to actually extend it the whole way.  I came to work and the other nurse took a look at me and said that my elbow joints looked swollen and the symptoms continued to tightness and tingling in my fingers bilaterally.  My elbows feel slightly better now and the fingers are no longer tingly but everything else remains the same.
I placed a call in to my doc this morning to see if any changes should be made with the pain I was experiencing.  I was called back just now to be told no...no changes and that she would see me in August as previously scheduled- take up to 800mg ibuprofen daily with the meds if it continues.  I'm ok with the answer, I guess.  I'm just wondering about her thoughts behind it.  I'm wondering whether she wants to see if this will finally elicit more positive labwork to help diagnose in August.  I'm a little frustrated because anytime I call I feel like a hypochondriac.  I don't think it's the doctor making me feel this way, I think it's just me being a nurse, not wanting to bother anyone.  I'm just not sure when I'm supposed to call....for what new symptoms.
Also, I went and spent time in the mountains over the weekend with friends for the fourth.  The first day I used SPF 30 and reapplied throughout the day (which I thought would be good enough) and my scalp is burned (and now peeling) and my shoulders are burned.  The following day I used SPF 70 all day and it was much better.  But, could the sun exposure be causing the increase in pain today?
I'm hoping this email makes some sense.  I'm hoping maybe this is just a bad day for me.
Sitting at work having to stay late and feeling frustrated is NO FUN!!!
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 7/10/2009 6:34 PM (GMT -6)   
Hi! Nolatoco,
YOU ARE NOT A HYPOCHONDRIAC!!! One 'old' nurse to another. You are feeling like so many of us lupies often do. Remember! you are entitled to adequate pain relief! Call your md office back and remind them of JCAHO and the 5th vital sign. I am afraid your swollen elbows, like my poor feet, are a result of sun exposure, spf or not.......
hope you feel better soon,
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 7/10/2009 7:12 PM (GMT -6)   
Thanks, Sue!
I'm glad to know I'm feeling like all of ya'll out there!  I'm gonna try the ibuprofen she suggested in addition to the pred and plaquenil that I'm already on and hopefully this will work.
I really think the swollen elbows are related to the sun exposure.  I thought I would be ok as long as I applied and reapplied and reapplied the SPF...but I guess I'm now a lot more sensitive to the sun than I was aware of....

Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D

Regular Member

Date Joined Jun 2009
Total Posts : 66
   Posted 7/12/2009 11:54 AM (GMT -6)   

This was in another post, but wanted to add it to this post per moderator's request, so it would be located in one place:

So....I took the ibuprofen as suggested by the MD last night before I went to bed which helped with my pain.

However, I woke up this morning feeling like I was run over by a truck!!
I couldn't pull myself out of bed until about 15 minutes ago.  I am achy and tired and have absolutely no appetite.  I had to force myself to eat something in order to take my meds.
Is it possible to flare after sun exposure a week ago?  And is it possible to flare even on the meds that are supposed to make it better?  I wish I knew more about lupus and UCTD...I feel so uneducated about it even though I've read the books....I hate feeling like I still don't know enough about what's going on...
I am kicking myself for having a good time last weekend and for picking up an extra 12 hour shift at the hospital last week.  I was feeling so well though and so happy to be feeling well.
I know it seems like all I'm doing is ranting....but I'm just so FRUSTRATED!!
If this is a flare, should I be watching for other things to be involved and watching out for other symptoms?


Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 7/12/2009 12:03 PM (GMT -6)   

I'm so sorry you're having so much pain and so little compassion from your doctor.

My rheumy is a woman of few words (not my favorite trait of hers) but after every single visit, as I am walking to the nurses station, she says, "Use sunscreen and stay out of the sun."

I learned the hard way to take her advice. Sunscreen, a big floppy hat, sleeves, and sometimes an umbrella. It's a bummer but it beats a flare any ol' day.

Hope you start to feel better. And don't forget about ice packs, heat, and all those things you nurses are always reminding us of. By the way, my PCP's nurse is my favorite person in the world. Folks don't realize how important it is to develop a good close relationship with their doctor's nurse. Turns out she has lupus too.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 7/23/2009 10:04 PM (GMT -6)   
I have had swollen elbows, knees, ankles, wrists, and the bones on sides and top of my feet swollen for months now. The steriods didn't help nor did anything else. Once the joints inflame they usually stay that way for a while.. or that is my case anyways. The pain will come and go. Sometimes after taking Tramadol I have little pain, other days I have more regardless of what I do. It' hurts at times to just lay elbow down on arm rest it's so sore. I also have trouble with my hands like you do extending elbow. Sometimes its hard to drive. After griping steering wheel it's hard to straighten fingers out again. No matter how many joints or points swell my doctor does exactly what yours did... Nothing!!! I guess I have to walk around with my hands and feet looking like skelatons LOL.. The postive side is only that it makes me look really skinny because my bones all stick out LOL... Sorry that's the only small positive I can find.

Forum Moderator

Date Joined May 2005
Total Posts : 6942
   Posted 7/23/2009 10:22 PM (GMT -6)   
The sun can so darn easily cause a flare...
sometimes the next day, sometimes delayed a week or more.

This is a difficult disease to get used to...most of us have to learn the hard way that even those times we feel great (and want to pick up an extra 12-hr shift) we need to hold ourselves off and not go full out at anything.

Like do 1/2 of what you think you can, then stop. It's maddening, frustrating, and darn hard to pound into my thick head -- but that's the best way to feel the best I can for the longest time.

When I do as much as I think I can, I invariably pay it back by feeling worse for a few days (if not longer).

Being in a lot of sun just isn't possible anymore...direct sun for no more than 30-45 minutes, period, even with spf 70 & 1/2 way in the shade.

You'll slowly begin to learn your new body and it's limits and it's good points. I take more time to look for "the good stuff" and appreciate my life more than before.

Hang in there, it will get better,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

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