Life With Lupus

Am I crazy


I feel like maybe I have a pain med problem that im not noticing. I went to my doctor for a regular check up and he said that I use my pain meds too much and that lupus is not as painful as I think it is. He told me that its probably all in my head. My prescription for vicodin is 325 and it says I can take it twice a day. I usually cut them in half and total I may actually only take 2 pills in an entire month. Doc told me to manage my pain better but with two knee replacements…sometimes tylenol is not enough. 30 pills can last me over 4 months…so my question is am I really abusing my meds or does my primary care doctor not know what he is talking about?


The latter of the two. Time to look for a new doctor


Thanks…thought maybe I was being blind to my own problem


Maybe the doctor is not able to focus because HE is taking pain meds LOL


Oh my goodness gracious, is he wrong! My Lupus is really not all that bad (comparatively), and even so, it's crazy painful! Any idiot doctor who says Lupus is "not as painful as you think it is" to a Lupus patient is NUTS, and should be replaced immediately. That's utter nonsense! The "it's all in your head" response to Lupus is a very old, very outdated perspective. I've had a PCP like that myself, and I have kicked him to the curb. Don't be afraid to replace him if he's pulling this sort of thing on you. HE works for YOU, not the other way round.

Also, I would like to note that tylenol is not an anti-inflammatory, so isn't likely to be much help against Lupus pain. Check out NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and perhaps try one of them instead? It might help some. :;hugs:: Hang in there!


Poor thing- I would tell your Dr that they obviously never have experienced joint pain, crossover diseases, or lupus in general (unless were talking discoid lupus that strictly involves your skin- if your in pain, that is what pain meds are for!). UNLESS, your dr is concerned about your liver- Vicoden is an opioid, mixed with Tylenol. Too much Tylenol is not good for your liver- (same w/ Percocet)-
Since I was on a trial med, I was not able to take anything w/ Tylenol or Advil in it- (since my lupus affects my kidneys, I can’t take Advil or anything in the family (Motrin 800 worked great for me!). So, I was on tramadol or Nucynta until I started having seizures (CNS involvement- neuro said those meds can contribute to the seizures)… Obviously you can easily build up a tolerance to pain meds, but if he or she is a rheumatologist and your lupus is active, I would hope they have you on meds like plaqunil or doing blood work, as non active lupus shouldn’t be painful-

  • if your concerned about taking pain meds and aren’t in pain, there are several resources, however if you are in pain and your doctor is telling you that you’re not, then I strongly consider getting a second opinion- you shouldn’t be a mayrter!


Thank you everybody for your advice. …its nice to know I haven’t gone nutty yet


Obviously your Dr doesn’t have lupus.


That crazy he thinks that!! I like what Eagle41 said. If they could only walk in our shoes! My doc. Has given me a prescription for oxycodone and its 5mg and i can either take 1-2 and i only take 1. He is always willing to refill it when needed. And if I over do it or have something big to do, such as my brothers wedding, he gives pain med injections. I only use it sparingly and it lasts over the month. I’m thankful for a doc that understands lupus!


Sounds like this doctor shouldn’t even be a doctor. One attribute of health care professionals is supposed to be empathy especially since it is more then likely he or she is not in the same situation as you and also that fact that all medical situations are different and unique. He’s not in your body, who is he to tell you how you’re feeling? I agree with everyone else, find a new doctor.


I agree with everyone else your doctor is crazy! I take far more than that for my pain in part because I can’t take nsaids, but really anyone who tells you you’re not in pain with lupus is just plain wrong.


I have aches and pains similar to arthritis but nothing, too bad. I manage my pain without pain meds, understanding it’s the lupus with hot baths to relax my muscles. It helps, but, I do not want to start the pain med cycle.


Rebecca, you're not crazy, but your doctor is horrendously ill-informed. Vicodin is addictive, but you seem to be managing that medication quite adequately. I suggest that you look up and read a referenced paper that I posted to The Global Summit on Diagnostic Alternatives (DxSummit.org), the website of the Society for Humanistic Psychology. The title was "Psychogenic Pain and Iatrogenic Suicide", and google will pull it up as one of the top three hits on the phrase.

In that paper, I examine evidence from a sample of over four million Veterans Administration patients, which demonstrates that by assigning a diagnosis of "psychogenic pain", a doctor directly contributes to a 250% increase in the patient's risk of suicide. And the mechanism for this increase is that the diagnosis in and of itself will reliably result in the patient not receiving adequate medical investigation or care for whatever primary medical pain condition they actually have.

In my personal opinion, the term psychogenic pain comprises medical malpractice and gross negligence. That opinion is well supported in a book by Angela Kennedy, titled "Authors of our Own Misfortune? Problems with Psychogenic Explanations for Medical Disease." The book is very tough reading for a layman, but it's available on Amazon if you want to make the attempt. Your doctor should be suspended from practice until he does.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst,

Living With TN -- a sister community in the Ben's Friends group for patients with rare medical disorders.


You need to see a pain med specialist. …honestly you are on a really low dose and sorry to say this…your primary care doctor has no idea what he’s talking about (in my opinion). You shouldn’t be having to suffer.
lots of love


You are not crazy....how dare him...Lupus patients feel more pain than other people...I was trying to find a new dr upstate and he said the same thing....he did not believe I was in such pain...so I went back to my pain dr in Manhattan...unreal...they should only feel your pain for one day....he should not judge you....find another doctor...FAST....Zuppie


I'm sorry your doctor doesn't understand the pain you are in. I try to use alternatives to pain meds. The ones that I use a Solgar Tart Cherry caps, 1000mg one or two daily. I alternate with Tylenol and Advil since both are not good for us. But I also take turmeric and ginger, as they are anti-inflammatories. I sometimes use meditation, deep-breathing, and listening to relaxation CDs. This sometimes works for me....try it and see if it might help you. Good luck, and feel better. I think the idea of finding a pain management doctor is great.


I agree with the suggestion to go to a pain medicine specialist. They believe you are in pain (I can’t believe your primary doc said that…) and have wonderful therapies available. I have a friend in her 30s with severe rheumatoid arthritis and she has a pain doc who enables her to go to work every day, be completely coherent and almost never have to call out sick.

When I first started having the arm pains (before I was diagnosed) she let me try a cream he prescribed for her-it was amazing. Rub it on your skin and the pain goes away.

Unfortunately, those who abuse drugs have made it difficult for those with real pain to get the pain relief we need. In the ER, if you come in with “pain” you first have to overcome the stigma of someone who is just a “pain med seeker.”

Pain med doctors understand the need for real pain management and won’t brand you as a drug abuser, or get you “hooked” on drugs.

Good luck - and maybe it’s time to find a new primary care doc as well!



You need to get a new doctor, what a jerk!! I like to tell people like that until you spend 24 hours in my shoes you do not know what you are talking about. pay him no mind, get another doctor


I have definitely experienced the effects of the fear that pharmacies and doctors are being confronted with regarding prescribing narcotic pain meds. Unfortunately, doctors pushing everyone with chronic pain towards pain clinics and specialists has lead to overcrowding so that now there's a shortage of slots available, especially in the really good pain clinics here in central California. I just hope this gets straightened out soon because I would really like to have my pain evaluated and treated appropriately. I would love to not need to take narcotics for my pain, but so far that's all that works and according to my daughter, who is an oncology nurse who deals with pain treatment on a regular basis, my pain is still undertreated.

It's just frustrating. First you can't get diagnosed. Then when you finally do get diagnosed you're told the pain isn't real. Then when you finally convince everyone that the pain is real and are prescribed medication for the pain, you now have to deal with the possibility of being labeled as a drug addict, or being denied the medication you need just to function. I guess we'll just have to add this to the long list of things those of us with chronic disease and pain have to endure.

Sorry for being so negative. I guess I just needed to vent!


Your doc needs to educate him/herself about pain meds and lupus. Find another doc