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New Member

Date Joined Feb 2009
Total Posts : 6
   Posted 4/27/2009 10:12 AM (GMT -6)   
It's been awhile since I have been on the forum.  The last couple of weeks have been not great.  My joints feel like they are on fire.  I'm exhausted, and down to sum it up.
I went to the dentist and explained about mouth sores, and that I have Lupus.  He sent me to yet another specialist about this.  The specialist said the I have inflammation of the salivary ducts and that really there was nothing that could be done.  Of course not....
As well, I went to my GP for a physical, and she questions the diagnosis of Lupus.  She doesn't believe the blood work and wants further testing done, yet has done nothing about it.  I called my rheumy and explained what was going on, and the only time I can see him is for my appointment in June.  I find it so frustrating which isn't good for me.... it just exhausts me.
Any thoughts would be appreciated.  And to top off the weekend, I ordered my Tramacet and my Drug plan doesn't cover it! UGH!  Not that it is working for me anymore.....
Sorry I am just in a lousy mood right now, please excuse me.   

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2009 12:05 PM (GMT -6)   
Arg! I'm not happy with your GP.

GP's are *not* fully trained in diagnosing lupus or other auto-immune diseases -- it's a specialty best handled by a rhuemy!!! I would blow off the GP's opinion/requests and stick with the rheumy -- especially if he is the one ordering meds to address the symptoms.

I'd be mad and in a bad mood too if I heard this news!
I hope your day gets better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

New Member

Date Joined Feb 2009
Total Posts : 6
   Posted 4/27/2009 11:20 PM (GMT -6)   

Thank you for your support - I needed that!  I worked today until 9 pm and then have a 30 minute drive home.  By the time I arrived home, I was exhausted.  I have a pile of laundry that isn't shrinking and no energy to do anything about it.  Thank goodness I don't have to be at work until 3 pm tomorrow, so I can get some extra rest.  I feel like a walking dead person....


Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 4/28/2009 7:03 PM (GMT -6)   
I am very supprised that your gp is questioning what your rhuemy diagnosed.  How can she not believe blood work? Blood work doesnt least I don't think it does. I am glad you will have a chance to get some rest. Sorry things are going so crummy for you. Hope they start looking up soon! I have added you to my prayer journal :-)



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 4/29/2009 6:55 AM (GMT -6)   
Hi Red, I'm new in this forum, and don't know a whole lot about details on taking care of this Lupus mess in the midst of trying to hold down a job, keep house and deal with endless doc appointments. All that I know is that it is so very hard and my heart hears your struggle. I too wonder how much more must I endure. All day long I want to crawl into my bed. All day long I pray the Pain and fatigue will lift. I had so many doctors say it was depression and menapause that was causing my problems. I had ulsers in my mouth and nose. I had rashes and a mass in my lymph system, etc.,etc. It was the Rhuemy that was on target. Fortunately my pcp had the good sense to let the rhuemy to take over! I pray your rhuemy steps up to the plate and takes care of your flair needs. God bless you Red. Tammy

I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

New Member

Date Joined Feb 2009
Total Posts : 6
   Posted 5/11/2009 9:07 AM (GMT -6)   
Thanks for your support - it means a great deal to me...
I went to my Rheumy last thursday (Apr 30th) (I called Wednesday after work and they fit me in).
My Theumy took me off Celebrex and put me on Meloxicam 15 mg and Cesamet 0.5 mg for bedtime, so the pain won't wake me up.  I also requested cortisone shots in both ankles so I would be able to walk.  So far, I can walk a little better, but this flair is holding on strong. 
I went to my sister's yesterday for Mother's Day and crashed in a chair.  I slept the entire visit....On the way home, I stated how exhausted I was, and the comment received was, "I don't see how you could, you slept all afternoon!"  It is so frustrating....
The one positive of yesterday, I was able to go to church....I haven't been able to go for two weeks, and I really missed going.
I better close off now.  Take care. blush

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/11/2009 10:55 AM (GMT -6)   

I'm sorry you're suffering so much. People can be so insensitive. I never say anything about how I feel except with my hubby, and that's because he understands. Most people don't. And if they don't try to understand, that's their loss. I've also learned not to rely on other's opinions.

Having lupus has given me new insight into people. Some, with whom I've been close, are totally insensitive. Others, whom I hardly knew, offer empathy and support that amazes and uplifts me.

The Lynnwood and the others are right on. Are you feeling better since on the new meds?

Hang in there Red, and take good care of yourself. And come here for support -- it's often much more helpful than friends.

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

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

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/11/2009 3:41 PM (GMT -6)   
Hi Red,

Sorry you are flaring right now. (((((((( Red )))))))))) My pcp did the same thing to me!! I struggled along with him for another couple years and have now found a new pcp. I was tired of trying to drag him along on this journey and him denying I had any real issues and doing a poor job of keeping track of my records. I'd need to remind him each visit of things that needed to be followed up on and then he'd plow through my file and say "oh, ya . . . here it is right here" . . . what??? I meet my new pcp end of June . . . yeah!!

I hope you are keeping notes on your symptoms. Write down all the issues you are having and bring notes with you to your rheumy appointment. Call their office again if you need to and tell them that you'd like to go on the cancellation list. They love to fill in any cancellations and that might get you in tomorrow!!

Keep us posted.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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