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Tired Tina
Regular Member

Date Joined Jul 2013
Total Posts : 34
   Posted 10/17/2013 1:00 AM (GMT -6)   
Lots of drs appts! And working to pay the bills:-( first let me say this hope all finds you all as well as can be!
Diagnosed discoid lupus in July, biopsys ect, elevated liver enzymes, since off antibiotics for being treated three months for staph, they came back to close to normal, accused of being alcholic! By the nurse pract not derm!

2 weeks of numb tingling( bugs in my back lol) developed terrible pain!! No rash. Couldn't see dr cause of holiday weekend. Labor Day, But strangely had an attack that felt like heart attack, hubby insisted ER visit, high bp and hr questioned about EKG? Stress test ? Sent home with 10 pain pills and muscle relaxers.

Immense pain!! at follow up the following Monday, anap,same one who accused me of alchahol abuse, sent me for X-rays thought pinched nerve? Asked for pain meds so I could work, informed I was only 40ish and not 80 she didn't want me addicted! Other then the 10 from ER had not had pain pills for years. After a very bad break of the collar bone mad drug seeker!!??

Rheum appt next day, positive ssa elevated esr and crp suspected sjoogrens? For reasons of liver enzymes, and 7 years on and off gallbladder probs had hida scan after normal ultra sound, normal! 62% op! But shingles!! Was finally diagnosed! Given meds not gone but much better!!

Sick as could be after hida scan, a week and a Half later had ct everything normal except right kidney hydronephrotic changes involving the right kidney are associated with Hydroureter. Site of obstruction and etiology unknown! See urologist Monday. but still having so much trouble with eating, pain and what comes after that! Today awful thrush in mouth, lots of pain and at my wits end!!

In the mix of it all hubby is very busy with crops, he has been my ROCK! no support as people think I'm nuts!! My job is suffering, my mental health is awful! ADHD meds, with anti anxiety and Wellbutrin! I can't sleep, scared to eat, and feel like my body is falling totally apart from the crazy rat on a wheel race I've always run!! Thousands of $ later since we are both self employed with high deductibles 5500 max pp. I feel I've got no where and I'm scared!! I can't hardly sleep, or get out of bed! Today I felt like needles in my shoes!! I don't know what to do!? about ready to go to mayo! Anyone been there?

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 10/17/2013 5:50 PM (GMT -6)   
Wow! Talk about when it rains it pours. You're having a rough patch are you not.
If I was having as a bad time as you're having I would just check myself in the hospital for a week. I hope you can find some relief and feel better soon.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Tired Tina
Regular Member

Date Joined Jul 2013
Total Posts : 34
   Posted 10/17/2013 7:37 PM (GMT -6)   
Joy, thank you for your response, I've seriously considered it, thinking about calling rheumatologist tomorrow, and see what she thinks of all of this? I'm so tired of crying every morning trying to get ready for work, once I get going I do better. But even if I don't eat for days I can't stay out of the bathroom with horrible abdominal and side pain:-( I've seriously thought about the mental ward also!! I can't keep going like this, 32 hours in three days working not being able to eat, I'm almost ready to collapse:-(

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 10/17/2013 10:38 PM (GMT -6)   
A review with your rheumy sounds like a good start.

I understand the pain from shingles can be IMMENSE and if not treated properly can cause permanent nerve damage (ie permanent pain). I'm not sure, but perhaps a neurologist is the right Dr for that instance?

After 7 yrs on/off gallbladder issues I would ask if it isn't a good idea to have it removed? Mine was taken out 6-7 years ago and I've had no issues since.

Also there is medication for mouth thrush, and you can also try eating yogurt. (Plain, non-sugared yogurt with probiotics). Sauerkraut is also a good source of probiotics.

Gotta keep searching till you can eat pain-free!!!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/17/2013 11:38 PM (GMT -6)   

Sounds like you've been thru the ringer, I certainly can relate to that. Shingles are so very painful, you do need something for the pain. Since shingles run along the nerve pathways, and medication to treat nerve pain might help you. Lyrica, Cymbalta, gabpentin, neurontin are the ones I can think of.

I also agree, you should call your rheumy and see what she has to say. A neurologist is probably a good idea too. Accusing you of having a drinking problem and becoming a drug seeker is a bit much, but there are medical professionals out there that do that all the time.

Your gallbladder issues have been around for a long time and it kinda sounds like it needs to come out. I had mine removed in 1987 the old fashioned way. That was after over 14 months of hearing there's nothing wrong with your gallbladder. I was 22 years old and the doctors couldn't believe I had a problem. Well, by the time I had surgery I couldn't eat at all, and had a nasty case of jaundice.

Low and behold they found that I had passed all my stones, with every attack I had the previous 14 months. When they went to remove the gallbladder if fell apart, I had gallbladder disease. So you may want to consider inquiring about getting it out. You need to be able to eat and it's very nice to get rid of all the pain that goes with it.

Magic Mary's Mouthwash is good for Thrush. Lupus is a hard disease to sometimes get under control and you have to keep fighting until you get the right treatment plan. Also, as far as the mental health issues, maybe talk with your rheumy or pcm about it and they can start you on an anti depressant or refer you to a therapist.

Hang in there, sorry that you're having such a rough time. Positive thoughts coming your way.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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