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LUPUS and FIBROMYALGIA

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Posted 3/22/2012 7:48 PM (GMT 0)

I was diagnosed with SLE and Discoid Lupus in 2008. Prior to the last year I have experienced pretty mild Lupus symtoms. Last year I went to the ER for major headache, swollen lympnodes in my neck. They did a lumbar puncture, but could not determine the cause. Since then, I have been in pain from head to toe, numbness and tingling in my extremities, swelling etc. I was recently diagnosed with Fibromyalgia and being screened for possibly Osteoarthritis. It is getting more difficult to work and current employers are giving me a hard time regarding my health condition. Does anyone know of any medications other than Gabapentin, Lyrica, and Tramadol that could possibly help my pain and discomfort, but still allow me to be coherent enough to work?

Posted 3/22/2012 9:22 PM (GMT 0)
Hello! Sorry to hear that you are having so much trouble. I take Savella and Tramadol. I had no relief from my pain for 5 years until I tried Savella. There are some side effects but none that really bother me. I am not tired though...that was a major problem with the other meds. As you know, everyone is different so it really is just trial and error.

Hope that you get to feeling better soon.

LupusMomma
Posted 3/22/2012 9:40 PM (GMT 0)
Are you on plaquenil or another DMARD, too? Or a biologic?

I take mobic 15mg everyday and tramadol for emergencies.
Posted 3/30/2012 9:10 AM (GMT 0)
sorry to hear that. I know how u feel. i've been a little hard headed. I have stop taking my meds because i start having problems getting the pills down because of the amount. but that was one of the biggest mistakes I could have ever done.
Posted 4/2/2012 1:48 AM (GMT 0)
Are you being treated with anything to inhibit the disease or treat other symptoms besides pain? Generally it is better to address Lupus inflammation (the source of the pain) rather than going directly to painkillers. The pain is a secondary problem, what is causing the pain should always be addressed first.

Perhaps it is time to visit the rheumy again and get a full workup as it sounds like your situation has changed since your original treatment plan?

Best wishes,
Posted 4/5/2012 1:40 AM (GMT 0)
Although most ppl distrustful of pain meds, I have to be honest & tell you that without them I would not be functional at all! This is a very individual & personal decision and one that should be made between you & your physician.
I guess my theory is this (& it's based on research as well): Real pain - otherwise known as "legitimate pain" when treated properly does not cause addiction. And for me, it doesn't make me unable to function. Personally, I cannot get out of bed due to severe pain & I agree w Lynnwood - you have to treat the underlying cause such as inflammation (or in my case, Fibromyalgia too).
I certainly hope you get help & do not just suffer in pain! I too did that for long enough & took ibupfrofen and ended up with a GI bleed (stomach)! Pls keep us posted!
Posted 4/5/2012 1:45 AM (GMT 0)
Oh! I forgot to mention - Lyrica sometimes causes more "loopy-ness" than pain meds!
Also, I have had good luck with Cymbalta - it helps with not only moods related to pain but pain itself! Good luck & hang in there! We are all behind you! :)
Posted 4/5/2012 5:40 AM (GMT 0)
You are my new best friend sunshine hehe. I have fibro too, but do not have lupus. I have wegener's, which is treated the same way so this group is rather helpful. medication to help pain besides what you named: percocet, oxycodone (pure no tynol), morphine, amatripyline (sp), torodol...


I hope it helps
Posted 4/7/2012 2:07 AM (GMT 0)

 I feel for you but have no sure fire remedy.  I've battled chronic pain for 25 years due to OA, FMS, Lupus, etc. and am never pain free no matter what meds I try.  I would suggest trying one or more of the following therapies that I have utilized with varying success:  yoga, mindfulness breathing, meditation, physical therapy, or massage to help manage the pain more easily, although they probably won't make the pain all go away. I would also recommend keeping a daily journal of what hurts, how bad it hurts (scale of 1-10), ways the pain and other health problems interfer with your daily living skills, family life, work, etc.  This helps when you visit with your doctor(s) and could also prove beneficial should you at some time need to apply for Social Security Disability. My journal entires were even positively referenced in the appeal results I received from my Social Security Disability application, that was initially turned town, then later approved.

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