Life With Lupus

Am I crazy


Hey Ann, I hear ya! The whole idea is crazy. Since when has congress gotten their medical licenses? Most MDs don't even know how to treat pain. Now we've got politicians trying to fix a serious and very complex issue like pain management. Oh yeah that'll fix it!

Ann A. said:

Dear heymj,

I don't think that you are being negative. I think that you are being realistic. For me the overcrowding has meant the loss of a great pain management physician and his replacement by one who is just average and too hurried to even take a decent history (which contributed to my loosing it in the procedure room two weeks ago). If the move to reschedule hydrocodone (like Vicodin) from class III to class II is successful, life will become even more complicated. Having to get a paper copy of each prescription is going to be very stressfull for those of us who have mobility issues with our chronic pain.



I think your doctor is crazy, and you need to switch to a pain management Doctor. Lupus is very painful if he only knew.


LUPUS IS PAINFUL. And I take about 120 Tramadol per month and that is just taking the edge off. You are not crazy you physician is.


OMG, your doctor is an idiot and completely wrong! Lupus is extremely painful for most everyone who has it! The amount of medication you take is not even close to “too much.” Please change doctors asap! In many cases, even four hydrocodone per day is normal and completely OK and needed legitimately. I am lucky if i can get by on only 3 per day, and i take them in halves, too, about 3-4 hours apart, since it’s just a half, and i still have breakthrough pain many days. I’ve had this nasty disease for 24 years, and have been prescribed as much as 5-6 per day before they loaded me up with plaquenil, increased my prednisone and started me on benlysta. This is a vicious disease that is very painful and needs to be treated seriously.


until someone who knows what it's like to feel the need to unzip your own skin to find relief from the pain they have no right to say lupus doesnt hurt that much dump the gp and find one who knows about this disease


Doesn't sound like you are even close to abusing your meds


Time for a new doc! I have a fam friend who is a doctor who told me what you were told and worse…it was insulting and showed me he knew nothing about lupus. We know what works for us.


I'm not sure if I have Lupus or not yet, but I have chronic pain in my legs and lungs from blood clots. I have an autoimmune disorder called "Hughes Syndrome - APS!" I have been cut down to just three Norco a day by my pain management doctor. He won't give me anything else besides Neurontin which doesn't work. My primary care doctor flat out refuses to write scripts for pain killers, not even for Tramadol.

I had to take a few extra pills last week because I was in a lot of pain from doing physical activity. I had to go four days this week with no pills at all. I'm seriously contemplating discontinuing the Norco and getting rid of the pain management doctor all together. I am fine with my current level of pain as long as I do not do an physical activity. Once I move around, go to the store, do work for more than two hours a day, the pain becomes really bad. My chest pain is constant though; same with the leg - but it's only a level 4 right now as long as I sit here with my legs elevated.

I'm going to look into getting a medical marijuana card. You get a card that costs 200 dollars for two years - and there are no hoops to jump through like you do with primary care docs and pain management docs. No one hassles you when you go to the shops to pick up your supply. I think I will just smoke some at night to help me sleep when the pain is really bad. What do you guys think about that plan?

And to the poster of this thread, you are most definitely not crazy. Doctors have no guts these days to band together and stand up to the DEA and advocate for their patients who live in chronic pain. I think it's a travesty of justice that so many people are going under-treated for their pain when we have the meds available to make them comfortable. I hope things get better for people with lupus and chronic pain. I hope you find a new doctor as well.


This battle is b.s. I mean if you have lupus and inside pain u need painkillers. They keep making this nerve pain meds for ppl with nerve pain but it doesn’t help lupus! Keep fighting go to a different doc or sue them. Trust me this pain med thing is getting out of control. I went to e.r. They sent me home with none they’re not aloud too. We need to fight we deserve to at LEAST have pain 80% under control. Not 100% because what I realized is we don’t rest when we need to God bless u. It takes a while to find the right doc


The pain is real baby.


I take 15 pills a day and that’s not including pain Meds. I have had lupus now for 7 years and been through a WHOLE lot. With taking all those pills the last thing I wanna do when I’m in pain is to take more pills cause that’s not good on the kidneys. You may wanna talk to your dr about medical marijuana. You don’t necessarily have to smoke it they have edibles,creams,topicals and of course the flower you smoke. He asked me does it help with the pain and I told him yes cause it does and I explained that I rather smoke than take more pills and he agreed it also helps with my appetite,sleep,depression and stress