Continuous pain

DeeDee Member New Member
I was diagnosed late in life, last October at the age of 59 years old. I was put on 200 mg plaquenil in October and the dosage was doubled to 400 mg in May. I continue to have pain that keeps me from working out. While I'm able to manage my pain, it's still there, especially with certain movements, weather related as well as air conditioning. In addition, I have side effects of tinnitus and I'm struggling with my vision. Is anyone else struggling with this? What are people doing to combat the pain?  


  • olya2564olya2564 Member New Member
    Try working out in pool, I found out that swimming is the best option for me. At first is quite painful, but then it improves my quality of life! GL!
  • helpfor2020helpfor2020 Member New Member
    edited February 2020
    I also live in constant pain & fatigue. Pain meds don't even help anymore. Due to long term prednisone I now have a dx of autonomy  neuropathy. Pituitary gland doesn't work anymore to produce natural cortisol. So, my body doesn't respond to meds of "normal" doses like most ppl take.  I sweat horribly for NO reason & BP goes up & drops at any given time. My body doesn't know how to respond to over come symptoms.  Examples... antibiotics, prednisone, pain meds & just about anything else as well.  So, most drs don't really know what to do or want to take the time to understand or try other options to help me.  Always blame on lupus & prednisone.  So, I guess I seem crazy & feel judged as a pain med seeker.   Ironically the only relief I get from pain is very high doses of prednisone.  And that's not a fun way to live for long term. I take plaquenil, prednisone, vitamins & for about 1 yr now I've been on ACTHAR GEL injections.  Also, IVIG infusion's to help my immune system. Plus tons of other med. I've been on almost every treatment possible.  Only 1 left is Rituxin. I'm always researching for anything new to help myself.  Any suggestions would be GREATLY appreciated!!! 
    I guess I'm better than before but still flare almost weekly & feel horrible. I think theres got to be something better out there.   
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