I am on plaquenil, norco 7.5/325 (which irritates my rheumy to no end but my internal medicine Dr. is fine with), nabumetone 750 mg x 2 a day, I have arthritis gloves and socks by IMAK that were a godsend, I use arnica gel like crazy (it surprising really helps!) and I am a huge fan of rice bags I just put them where it hurts. I STAY AWAY from Prednisone, it has caused more problems with me over time than it helped. It usually causes me to puff up like a balloon and my legs get it bad which causes serious mobility issues for me. I decided the benefits didn't outweigh the problems it caused me and now all of my Dr.s know I won't take it unless for a few days when I have to. Showers can be difficult some days so Epsom bath soaks with essential oils helps. Make sure you have a good mattress and pillow too, after a recent trip out of town I was reminded the damage an uncomfortable one can do by being kept up all night feeling the springs on every inch of my body until I finally laid down on the floor and gave up trying to sleep until everyone started getting up. You will find things that help for you but this is the stuff I use. If you are taking that much ibuprofen you are risking your liver and kidneys and I highly suggest you stop that is a very dangerous amount and if it were working you shouldn't need that much. If you Dr. won't help you try a different type of doctor (like internal medicine ;) wink wink. If you are not on Omega-3, Vitamin D, B-complex and Vitamin E I suggest adding those into your routine and staying away from supplements that could boost your immune system, that isn't what you want and will make you feel worse (trust me I made that mistake for years before someone told me better.) To be honest with all of the things I do I still hurt quite a bit and some days you just have to say forget it and lay in bed and rest until you gain some energy and the pain eases up. I am worried about that dose of Prednisone, that is quite high. I would also get your kidney and liver function checked now since you were urinating blood that can be very dangerous. I seriously doubt you want to be on dialysis. You shouldn't buy meds off the street you never know where they come from, get a good Dr. that listens to you and fire the rest!

First of all, thank you JWinn82 for your input. It's been such a lonely road that getting this reply made my heart smile :)

I have an awesome couple of docs now - one focused on food/diet/vitamins and the other is pondering over MCTD info this weekend to best help me.

As I read about people's posts, I'm wondering if my symptoms are as extreme as others...I'm dealing with elbow burn/stab and ankles are doing the same. Last week, my right hand lost feeling and is kind of useless now ... in the pinky and ring finger. But I don't have all these big word issues (well, yet, i guess).

I thank you Jwinn - I just hope this is how I "reply" to your posts

Plaquenil, prednisone, steroid injections, rest, prescription pain killers. Get a pain management doctor.

welcome to the site.....I am sorry you are in such pain. A good doctor will send you to a pain specialist. The prednisone should help some, once the inflammation is more under control. Plaquenil should help to, but it takes a few weeks to fully kick in.

I hope you get some relief....I have found that heat helps too and I used to wear braces on my wrists at nite.

Good luck and let us know how you're doing.

I agree with all the other posts on here. I am also on a slew of meds, but have turned down steroids from my dr. b/c they cause other issues. You need to see a pain management person. Ive learned some bio-feedback techniques that i use daily. They dont make the pain go away, but help me relax a little. Getting tensed up over pain makes it worse. Ive also had some luck adjusting my diet - but ive had problems with my left leg ever since my diagnosis and nothing seems to help (hence the suggestion for cortisone). I think we are ALL in pretty extreme pain, we just deal with it and motor ahead - if that's not possible then we rest and recover as much as possible. Maybe you are doing too much? Ive got little kids and work part-time, so the option to rest isn't available as much as I would like (such as this morning, i would LOVE to just go back to bed!!). Don't buy narcotics off the street, who knows what you really get and would it be worth it if you got caught? I think some docs dont like to prescribe them b/c they are habit forming. Additionally, I've got a lot of nerve pain and dont really think the narcotics help much. Rice packs, heating pad, rest are all probably the best. Good luck!

First of all, thank you ALL for your input.

I have never heard of a Pain Mgmt Doctor before, so this will be interesting to dig into. I live in a remote part of the state...our medical options here are pretty sad: bad doctors end up in remote locations for some reason. I find I just have to take matters into my own hands.

I have been on Prednisone for 5 days and my hand is still numb and my elbows are still screaming. Since I've had over 11 steroid shots, the new doc won't do anymore.

Does anyone know how long Prednisone takes before it starts to relieve the swelling?

Again, thank you for pain info - love it.

I've found that Cymbalta really helped me with the pain. My rheumy put me on it about 12 months ago and it greatly improved my quality of life. Of course I'm missing it like crazy since I had to stop all meds since DH and I are trying to conceive.

I have been really hesitant to try narcotics because of the ease of addiction, but I've gone a few rounds with the prednisone devil over the years.

But I agree with everyone else that a pain management specialist is the right solution. Your doctors should be ashamed that they let you deal with that much pain for so long. Good luck!

Kitten and Others -

I have good information from you all and I thank you deeply. I will be following up on Cymbalta, a Pain Mgmt Doc, and more. I will continue to buy my pain meds from a friend of a friend until a professional helps; but, at least I have some solid ideas.

Thank you!!!!!!!!!!!!

I agree about Cymbalta. It helps tremendously with fatigue and pain. Best wishes for you.

I agree with the others but also want to offer a word of caution re: pain management doctors. They come in all flavors. There are many that practice for the money and for the fact that they can get you addicted and coming back very often. Theses are known as "pill mills." If you go to one and something seems "off, " it is. Go to the one who offers a multi disciplinary approach to the pain: biofeedback, pain killers, acupuncture, etc. If they just keep stuffing you with narcotics, they are not doing you any favors. Unfortunately, I have been down that road. Narcotic pain relief rebounds on itself and then you need more. Initially, it is like bliss, but eventually it is just hell. That is not to say, when you need some, it is isn't warranted. Just be careful that the doctor you go to has some sort of certification to practice pain management and is not a total charlatan. Good luck.

I'm also going to pipe in on the pain meds. As much as I would love, love, love to use them, my Rheumy won't give me any pain meds whatsoever. I can use Aleve if I'm having an arthritis flare up, but otherwise, no prescription pain meds. His goal is to fight the disease and not the symptoms. While I understand this, it can sometimes be frustrating! On the other hand, I have learned really fast, the hard way, not to overdo things.

As for the Prednisone, it has helped me greatly and so far, the only adverse reaction I've had is weight gain. However, the first time I went on it, my Rheumy started me at 30mg and it took almost five days for me to notice any real change with the pain. The first time was the only time it has taken that long. Now when I go on a higher dose, it only takes a two days before I notice a difference.

I have found out with auto-immune diseases, you have to be your own best advocate. Educate yourself as much as you can on every symptom you have, but don't go overboard! Google can be your friend or your enemy when looking up symptoms.

Don't worry about if your symptoms are as extreme as others. They are yours and they are affecting your quality of life. My Rheumy has drilled it into me that this disease has hills and valleys. We all have our ups and down with it.

I spoke with my doctor on the phone today. I told him I was on this support board to get feedback from others with MCTD and/or Lupus. He was very glad as this illness is vague and rare to our area

I asked him about Cymbalta, Pain Mgmt Doc, etc. He was supportive; but, he did his homework this weekend on (our) disease and he suggested to ask you all what you thought of Naltrexone.

He admits his shortcoming on this disease; so, we are hoping you all can give us your thoughts.

And no, I don't drink or do drugs :) Maybe too much coffee.

Moorgrace......I am really big on trying Naltrexone! I mean, Low Dose Naltrexone. (LDN) I did a ton of research and am seeing that MANY have huge success rates with it. Do check out the websites on it. Google it. It is very much worth a try. It's just not promoted because the pharmaceuticals aren't making money off it. Give it a try! I just started last night and am more optimistic than I've been in years! Keep me posted.

I could not agree more with keifertaylor, she is absolutely right. I have - over the past 20 years - been trying many pain-management specialists and they had no constructive offers of help me in my pain. Most of them were into addictive pain-killer-drugs and I thought that could not be constructive because that would only exchange one big problem for another huge problem and I thought I had already enough problems with MCTD/SLE and the pain it brings.
I finally stopped searching for any more pain-management-specialists when in the last pain-management-clinic I met a young girl and she was so badly drugged with pain-killers that she did not even notice what time of the day it was and what year it was. I did not fancy to end up like that and went home straight away. I then found my own ways to deal with the pain. I take a calming bath with some calming herbs, lay on the sofa afterwards and watch a silly film to take away my attention from my pain and then I wait until the flare-up eases and I can get up from the sofa again. That is all. I don't think constructive pain-management without damage to any other organs does exist, so I stay clear of all of any pain-killers or steroids for the time being until something rally constructive has been found to deal with the pain. Ce ca. Good luck from Kristina.