check out the "treatments" part of this website.
i can't take NSAIDs anymroe (over te counter stuff like advil) because it ruins my kidneys but i finally got a dr who will give me *something* and i found percocet to be helpful. i try to take as little as possible so i don't get addicted. so far, so good. been over a year with it.

I was recently prescribed ultram ER and so far has helped a lot. This medicine doesn't seem to put me in the fog that others do and is taken only once a day.

Hello! Have u talked to your doctor? Normally if you have pain it's because u have inflammation which means u need to get rid of the inflammation. Usually the dr. puts me on prednisone which zaps the pain in literally 3 hours. It's steroids but it kills infections and takes pain away. Other then that, tylenol, asprin and stuff like that you could try but usually it takes something stronger.

while i agree that pain can often be a symptom on inflammation, adn that shold be addressed, lest you leave your organs inflamed and let them acculuate damage; prednisone doesn't kill infections (in fact it makes you vulnerable to more infections by lowering your resistance- that's how it works, by suppressing your immune system, including the inflammation response)

it does do a great job on inflammation. if you can handle the side effects! i've had pain even when on prednisone, like headaches and sometimes muscle/ joint pains if i overdo it with activities.

i was on ultram, which seems to have a lot fewer horrible long-term side effects than prednisone, and i really liked it. but i had to quit it because i was also on paxil, and you aren't supposed to take them together. can cause siezures? i think.

predisone works but the side effects are awful i have been on 15mgs for six years cant seem to taper off and i still have pain everyday i cant take anything with asprin in it so i do take darvocet and that kind of works i really dont dare to take anything else because of all the horror stories i read and hear about people getting addicted

For my really bad times I end up taking OxyContin. I try not to use it that often because it is so addictive. My doc kept trying me on otc stuff first and then we ended up working my way up to where I am now. I also take Vicodin at times for the pain.

yea, i take methadone for my pain, i take 70 mgs daily. its not a high dose, but it really helps me and its affordable, since i dont have insurance. It is a long acting med, which means everything to me. i have to take enough meds already, so i was asked had i ataken it before, which i had been prescribed it long ago. So im glad to have it for relief. It doesn't always take all the pain away- but it helps tremendosley.

Steph,,

What other AI diseases do you have? I ask because sometimes pain is nerve pain which needs different meds. Most of the long-timers on this site have heard my pain management lecture, but for you and those who haven't heard it yet, here goes.

First, you should NEVER be in a lot of pain. If you are (and you don't have a broken leg or something major outside of the AI stuff), then you're pain is not being controlled properly. There are many fabulous pain meds, but people get caught up in common misconceptions about pain meds so I'll go through this for you.

Pain meds (and we're not talking about meds to control your diseases because you should be on those already) fall mostly in to two categories: narcotic and non-narcotics. Non-narcotic medications are almost entirely NSAIDS like Motrin or Naproxen or Acetominiphen (Tylenol). Although Tylenol is OTC, it is NOT SAFE FOR LONG TERM PAIN CONTROL. Doctors often push patients to drugs with Tylenol as a combination (Percoset, Vicodin, etc.) without realizing that the patients are in CHRONIC PAIN and will need to take a toxic dose to get relief. BTW, if you take 4000 mg of Tylenol (that's just 8 Extra Strength Tylenol) you've reached a toxic and deadly level that can cause liver failure. Tylenol is responsible for MORE overdoses and deaths than ANY OTHER DRUG. If you don't believe me, check the CDC statistics.

Patients who are in chronic pain usually NEED narcotics for relief (unless it is nerve pain which I'll get to). Non-narcotic drugs just don't do it no matter how much you take for most patients.

There are several narcotic drugs and delivery systems used for pain patients. The idea is for a patient to take the medication ALL THE TIME. A lot of pain patients think that they shouldn't be on pain meds and so hold out until they absolutely can't stand the pain. That's WRONG. By that point, it takes 4X as much pain medication to fix the problem. Pain medication should be taken ON A SCHEDULE (set by your doctor). The idea is to have a schedule that gives you as little "breakthrough pain" as possible. (I'll deal with breakthrough pain later). To this end, the options are:

1. Pills (last as long as the halflife of the drug)
2. Patches (last for 3 days)
3. Pumps (work 24/7 until the pump is empty anywhere from 5 weeks to 5 months)

Many doctors don't like to write prescriptions for controlled substances and try to make patients get by on lesser meds like Vicodin or Tylenol 3. Unfortunately, these drugs are combined with Tylenol and have a high risk of toxicity IF YOU TAKE AS MUCH AS YOU NEED. The most important thing is to find a doctor to treat your pain who is NOT AFRAID of the DEA swooping down on him if he treats you appropriately. Unfortunately, the DEA has come down on docs for writing too many prescriptions so some docs are afraid. Honestly, that's NOT our problem. As pain patients, we deserve the necessary medication to make ourselves comfortable. We're not junkies. Even if we NEED the medication, that still doesn't make us addicts. Long term pain patients develop tolerances. As for "needing" the meds as a definition of addiction---would you call a diabetic an addict? He/she needs that medication too. If you stop the insulin, they get very sick and die. But pain is not taken very seriously in this country.

Good pain doctors usually start with Methadone. Despite its fame as a drug used for heroin addicts, it is used to treat pain patients because it has the longest half life. Before the pharmaceutical companies figured out how to make other drugs time release, methadone was the drug of choice. Now there is time release morphine, time release oxycontin and the choice is up to the doctor.

The next step up are Duragesic patches. These are patches with a reservoir of Fentynel that is released over a 3 day period. These patches aren't perfect, but they work well on many patients. (I was allergic to the adhesive and got blisters.)

Last on the list is an intrathecal morphine pump. That's what I have. It is implanted in my abdomen and connected under my skin via a catheter to my spine. I get a low drip of morphine to my spine 24/7. Unlike the pumps you may have seen in hospitals, these pumps cannot be controlled by the patient, only by the doctor via a special device. My pain is controlled about 85% with this pump and I rarely need breakthrough medication.

These pumps can also be filled with other substances depending on the problem: such as a numbing substance for back pain. Mine is just filled with morphine. I see a pain management physician to fill my pump every 5 weeks.

Despite what many people believe, I can function NORMALLY with this pump, better than I did with the pain. I can drive, operate heavy machinery, etc. A study done in Europe showed that people with these pumps were under the DUI limit.

Now breakthrough pain: most pain management docs give their patients some secondline meds to take if the pain isn't being controlled by the standard meds. These pills can be meds like Vicodin because they are only being taken occasionally. When your doc gives you meds like this for full time use, it shows that he's under the (false) impression that you're not in pain all the time!! You need to make sure he understands that. And if he won't treat your pain adequately, FIND ANOTHER DOCTOR.

Now about Nerve pain. Nerve pain is difficult to treat. The main drug used is gabapentin (aka Neurontin). Nerve pain is NOT inflammation, but sometimes incorrect signals so it needs to be blocked in a different method. These meds also need to be taken on a schedule not just when you have pain.

I know this is a lot to read, but trust me, I've been where you are, I've been in horrible pain. I feel pretty good most of the time lately. I still have fatigue, but my joint pain is a lot less.

Don't let people convince you that you don't need the meds. You KNOW if you really need the meds. Feel free to contact me off lit if you want to know anything about treating pain.

Tracy

Wow, Tracy: you're good. I think I'm going to copy and paste your post into a document so that I can save it. I just want to add that figuring out what type of pain is--while extremely difficult--is key. I'm definitely not pain free, but have made progress. I have Fibromyalgia (plus a few other things) and have found the Gabapentin to be a huge help. My rheumatologist's theory is that without it, I don't get the full benefits of sleep and my pain level is higher.

Good luck to you. It is certainly a long and tough road!

I really appreciate the information that Tracy wrote! I plan to mention quite a few of her points in my appointment with my pain management doctor later today. I have been suffering with lupus and fibromyalgia for a long time, and while my pain is somewhat managed with hydrocodone, the breakthrough pain that I experience is excruciating and debilitating.
Tracy is absolutely right; we should not have to suffer just because doctors are afraid of writing prescriptions. Nearly every one of us would rather be healthy and not on pain medication, however, in order to live life, sometimes we need it. Tracy has given me the strength I need to stand up for myself and say, "no more!" and demand that I no longer being made to suffer.

Hello,
I was told by doctors that pain-medicines for lupus/MCTD-flare-ups have terrible side-effects "in the long run" and they would have damaged my kidneys further and because of that I did not touch any pain-medication and rather took a hot bath and after that I took a rest on the sofa, whenever I was in lots of Lupus-MCTD-flare-up-pain......
Please make sure with your medical team that any pain medication you take does not damage other organs like your kidneys etc...
I was once told by a medical Professor that pain-medication comes at a very high price which everyone who takes them has to pay eventually...
Goo luck from Kristina.

I have lupus, Raynauds, and sjogrens. Recently they found a blood clot in my abdominal aorta and just had a EGD done and the Dr. Said I have severe erosive gastritis they found undigested food in my stomach and fresh blood, not actively bleeding. That's just part of what I deal with from my autoimmune disorders. Yes I take a lot of medicine. Methotrexate for lupus, blood thinners for my blood clot my blood is also hypercoagulating so I take meds for that heart and blood pressure meds. For pain I have been on fentanyl patches for years and Norco for breakthrough also phenergan because methotrexate makes me sick. All this to say I stay in alot of PAIN and all the Dr that did the EGD could talk about was how I was on way too many narcotics and that's why ALL that is going on with my stomach. ...yes it's not good for my stomach ALL the meds but either is sjogrens. It just really posses me off that he treated me like some junkie that didn't need PAIN meds because I shouldn't have that much pain with sle. I'll b glad to trade places with him for a day.....my hemotoligist, cardiologist, vascular surgeon, GP, and Rhuematoligist are all aware of my medication and are in agreement I have to be on strong meds to function. Just really pissed me off. Sorry venting