Chronic pain is more or less untreatable in my experience. Not all medicines seem to work on treating it and any medication can stop working for you. I’d say the worst part is the feeling of being disabled from doing everything we once were able to do. It manifests itself through so many areas of life that mental health is also a concern. Learning to live with it seems to be the word from a lot of care providers. We understand and it’s ok to hurt whether doctors recognize it or not, blessings.

Well said. I often feel like I am going crazy but as soon as I get a brief break from the pain it is like a cloud lifts and I am clear and happy again. I just can't help wondering if there isn't something all the doctors are missing that could help us all...need to do more research on pain in general and the nervous system. Do you ever feel like you are earning your PHD with all the research you do? xo

Dear Khadi,
You didn't mention your symptoms nor the duration of your pain- not that that matters, any pain is too much and too long to handle :( I can only speak for myself but I had to do a lot of searching for answers on my own. The Doctors were willing to treat the pain but I wanted to know why and where is was coming from, ya know? It took awhile to connect the dots but when I broke out in a full body rash they did some biopsies and I was formally dx'd with lupus a little over 12 years ago. As I said, it connected a lot of dots in my medical history; colds that turned into bronchitis then pneumonia, achy, swollen joints that ultimately led to joint repair/replacement, constant fatigue even upon sleeping 10 hours, fevers in the afternoons, etc., etc. I now have a pretty serious case of osteoporosis which had led to diminished height (yes, I shrunk almost 4 inches in 5 years), I have 12 compression fractures in my spine (hence the diminished height), a compromised immune system, scoliosis is 2 areas of my back. I'm unable to stand or sit for longer than 10 minutes at a time. I qualified, hands-down for full medical disability from my State position which has been a God-send. Fortunately I was vested and was able to go out on State Disability (60% of my income and full medical benefits for life. My youngest is still in college and is covered for 2 more years. Not sure I could manage on the max of SSDI, $1,700 a month- that covers mortgage and 2 weeks of groceries in my house!
I am so sorry you are having such a rough time- you will find support here as many of us struggle on a daily basis. I cherish the good days, the days that I am able to get out of the house and go do something. We are coming up to my favorite time of the year- SPRING. Went to Florida for 2 weeks and just got back last week- I couldn't take anymore of this extended winter- UGH! I suffer from depression and anxiety as well so Mother Nature and I were definitely on the 'outs'. The warm weather down there did wonders for my pain level and my mood. I know it's hard but TRY, try to get out and get some form of exercise- it will do wonders for you. It's easy to tell my patients to do this but far more difficult to practice what I preach! Hang in there and keep reaching out, Connecting with others is essential! You are in my prayers, xo- Lyn

Well you certainly have had your share of pain and I am so sorry. I just wonder WHY? Has it always been this way? Is something changing that is making more of us be in pain as a species? All these autoimmune issues...why? All these nervous system issues....

I don't know a ton about Lupus but I do know self-care is so important. I am glad you have been able to get some assistance to help you care for yourself. Glad you got to go somewhere warm, that must have helped! Thank goodness spring is here! xo