i just feel terrible, i have lupus sle, i also have a really bad back, missing 2 lower discs.........i take major pain med 2 oxy 80's per day, and 5 15mg's oxycodone,,,,,,but nothing helps me with the lupus, i have an apt with a internest on the 13 of feb,,,,and hopefully i can get some prednisone, that helps my back also, i was just wondering if anyone else is on major pain meds like me........i have had lupus for 20yrs now......purrs..catspaw1955
Im on a 50mcg fentanyl patch every 72 hours plus morphine 15ml and tramadol 50 . Im only 100-105 lbs so this is a pretty heavy duty pain med regiment. I have systemic relapsing polycondritus that causes my soft cartilage to disappear and the hard (labrum ) to tear and fray , it’s unbelievably excruciating. . The lupus is overlapping and is severely affected my tendons (chronic tenosynavititis, bursitis, tendinitis )joints (inflammatory and osteoarthritis arthritis )protine C deficiency (painful superficial thrombophlebitis ) and bone marrow edema. . I really like fentanyl, it’s a miracle drug for bone pain and i never feel like im on anything and that’s very important to me… Over the past 6 months I’ve really began to suffer with aspacific area of my spine just at my bra hook level. I can feel a dull painful throb in that spot of my spin ,i know it’s just another part of my body deteriorating. Unfortunately .i can’t have any of my orthopedic issues surgically repaired until i am more stable some kind of remission but can you have back surgery? ?? If you’re in that much pain still on your pain med regiment id think your drs would want to correct this situation if possible? !?
Hi Catspaw! What a pretty feline you have!
I have fibro and suspect lupus due to some weird symptoms but I DO have the awful, awful back pain. I do have a herniated disk but supposedly it's not enough to cause the pain I'm in. I can't walk more than 10 steps before the back pain is excruciating. I've noticed that many, many, many fibro people have the same thing, and it seems that the lupus crowd has the same excruciating problem.
I'm on Lyrica for the pain, plus some helping hand drugs like Effexor and Nortriptyline. I wish that SOMETHING would erase the back pain but I'm empty handed in suggestions for you. I just wrote to you because I see a strong link between bad, bad back pain and fibro and also lupus. It will be interesting to see what others have to say about the subject.
I HOPE that someone here has a great suggestion for you. It would be so darned nice!
Hugs to you,
Petunia
hi petunia, my kitties name is BABETTE she is my pride and joy, i have had her since she was 2 weeks old, she is 12 yrs old now, but she still acts like a kitten........as for my back problems, i have spinal stenosis, and of course degenerative disc disease, they want to do a triple lower lumbar back fusion, but i am too scared to do it, and with the lupus sle, it will really screw up my back, because those stupid lupus cells wiill go right to where it is healing and mess with the good cells that are trying to heal me, but what i am really scared of is i am afraid of being knocked out the surgery take 7 hours. and i am afraid i will not wake up , i have been putting this surgery off for 8 yrs. now, and my back has gotten steadly worse, i have lost 2 discs so far and a 3rd one is now crumbling i have had 8 mri's in the past 4 fyrs.....and i am taking an enorous amount of pain meds....mly doctor said ii am getting what they would give a cancer patient.......i need prednisone but my doctor will not prescribe it for me so i am going to see an internist in feb so i hope he gives me some, i seem to see alot of lupus patients with back problems so i do not feel so alone any more and especially it helps that i found this lupus help site.....you take care sweetie, and i will pray you have pain free days.....purrs..catspaw1955
Hi
I probably shouldn't say this out loud but I have osteopenia 3 herniated discs spinal stenosis at bra level, and degenerative disc. but I have no pain to speak of, I don't take any pain meds or prednisone. I don't know why. I don't hurt like everyone else. I hope I didn't jinx myself. I'm sorry for all of you that are in so much pain.
Take care
Cindy
Catspaw I’m sorry you are going through so much pain. I hope the new internist does better by you. If you decide to go through with surgery try to stay positive and dont think about what can go wrong. Think about how much your quality of life will improve.
Cindy, you are among the lucky people who have no pain associated with those issues. Multiple ortho doctors have told me that if mris are given to 10 random people, many will show issues with their back but majority will be symtomatic. I have osteopenia as well, there should be no pain with that condition. the 4 bulging discs and one herniation kill me sometimes, specially with flares.
Forgot to add deg disc disease as well. It really is not easy, i know, specially when nothing can be done.
Hi
It's kind of funny but I have osteoporosis in the wrist and that hurts me more than my back.LOL
You have to laugh sometimes to keep from crying, if you know what I mean.
Cindy
Do you see a pain mgmt dr? or a rheumy? For me im on fentanyl 75mcg steady rate for 72 hrs and breakthrough pain 5 mg oxy ir. The amt of pain pills and other meds is hard for my kidneys i have Stage 3 ckd. My rheumy prescribe the prednisone for inflammation. My pcp dr was an er surgeon, she umbrellas over the specialty dr and prescribe it for me if i cant seem to make my appts, she then covers me until i can get a flight to make my appt. When i feel a flare i call either rheumy or pcp then they'll prescribe 20mg of it and take that for 3 days and titrate back to the 10 mg that i take daily. In a flare or excruciating pain t he prednisone works faster to alleviate the pain.
freightliner said:
Hi
I probably shouldn't say this out loud but I have osteopenia 3 herniated discs spinal stenosis at bra level, and degenerative disc. but I have no pain to speak of, I don't take any pain meds or prednisone. I don't know why. I don't hurt like everyone else. I hope I didn't jinx myself. I'm sorry for all of you that are in so much pain.
Take care
Cindy hi cindy, i am so glad that you are pretty well pain free, god bless you dear..purrs..catspaw1955
I was diagnosed with fibromyalgia about 20 years ago and lupus, Reynauds and Sjogrens 2 years ago. My back pain got so bad at one point my doctor put me on oxycontin 40 mg 2x a say with Lortab 10mg for breakthrough pain. I stayed on that for a couple years and it really helped keep the flares down. I’ve had 3 cervical fusions and am beginning to think the disk problem is starting up again with my back as I’ve started having pain going down my leg now with numbness. My body seems do away with cartilage everywhere. I’ve had so many surgeries due to lack of cartilage in different places. I finally got myself off the oxy just a few months ago so now just take hydrocodone 10mg as needed. It gets rough at times but just feel better about myself not being oxy. I got tired of the looks from the nurses whenever I had to get my rx for it. Good luck with your pain control and know you aren’t alone with it.
Oh wow angelwing, im sorry you were getting looks from your nurses. If you need a stronger pain med for a while or for emergencies do not worry about what people think. Your quality of life matters most. I totally understand not wanting to be dependent on oxy though. It is highly addictive. Ive found the most relief from anti inflammatory plus tylenol and tramadol taken together. Doc said tyl and tram taken together increases effect of both. I havent tried stronger meds because i need to be able to drive and function. They really affect me lol you dont want to see me on anything strong.
Cindy, just a suggestion, get your wrists checked out because osteopenia and osteoperosis do not cause symtoms. Osteoporosis causes symptoms when there is damage or when severe. Check out web md web site. I read up on both when diagnosed with osteopenia.
Sorry i meant to say my orthopedic doc, a Major in the Army told me out of 10 people with issues showing up on MRI the majority will be asymptomatic. I think he said 7/10 but that was about 4 years ago so i may be wrong. The main thing i understood from it is that most people have more luck than others when it comes to back issues. 
Have you ever gone to pain management? My first appointment is Feb 4th. The only pain meds my Rheumatologist has prescribed up to this point is tramadol and Neurontin. She has since last week stopped my tramadol cold turkey on her even though I was begging for something stronger. I’m looking forward in hopes that pain management will help.