I was diagnosed with a Lupus about two years ago. In the last year or so, I have had really bad pain that feels like it's in my muscles as well as my joints. I'm also very tired most days (which I know is the Lupus). The doctor prescribed hydrocodone which I only take at night because I'm trying to work during the day. Is this kind of pain typical for Lupus? I'm familiar with the joint pain, but muscle pain now too? I don't know anyone else that has this so I'm hoping you all might be able to help me with this. My rheumy isn't all that helpful so you all are my lifeline....thanks!
heymj,
I hope you can find some resolution and don't have to suffer much. Try to be firmly assertive with your rheumy. They don't bite. But, they can get upset because they lack the information for an answer.
And so begins our journey . . .
I have had the joint and muscle pains for 12 years. And it's become worse the last three. One of my 6 doctors gave me the same med. Even though I'm retired, I only take one at night. Wouldn't be able to function during the day.
I've been exercising (walking dogs) and eating a good clean diet (organic) which has helped some. All this helps the fatigue and aches and pains. But I still have days when I wake up in the morning and feel like I've been at the bottom of an elephant stampede all night. Getting up and moving helps reduce the pain and fatigue, doesn't necessarily take it all away.
Lately, the docs have even got down to I couldn't take "any" type of pain meds for this and that medical reason (depending on the specialist). Really! I had to politely kick some dirt to get into a pain management program which started today with an interview with a psychologist. Very promising.
You will find others on this site with their experiences. I would like to hear their challenges. Please keep us posted
You've got to hold on.
Thanks so much for replying. Yeah, I'm trying to walk as often as I can and I eat only organic. Food allergy testing revealed allergy to wheat and corn, so I don't eat these, but the pain and fatigue remain on most days for me. I have had a few days in the last few months where I actually felt good, but the pain and fatigue always return. Some days more than others. I am thinking about pain management as well. I don't want to take the hydrocodone, but I also don't want to hurt so much that I can't sleep. I am still trying to work a modified schedule at work, but even a modified schedule is tough going some days. You hold on too. I hope the pain management helps. Please keep me posted as I may be going the same direction. Thanks again, Heymj
I can remember feeling pain in my 20's. Then I realized that I ached all over all the time. Then I thought it was my bones everywhere and it became my muscles too. Finally in my 40's I was told it is fibro and it just kept getting worse year to year. I think doctors should ask us where we do NOT hurt. That would be easier to answer. I was finally told that I probably have had lupus for 40+ years along with other problems. Muscle spasms are normal for me for this long. Maybe a muscle relaxer is needed for you at night. That is the only time I take them and it has helped me tremendously over the years. I think the spasms have been reduced a lot through the day since I have been taking the for so long. I can take Norco during the day now to help with pain too. When I was still working and the pain was so bad I could take that and I could work so much better because my pain was reduced so much more. Hope this helps.
I understand how you feel. I was just learning about the joint pain and how that effected my life, when I started hurting in other places. I kept telling myself the other pain couldn't be lupus related and kept putting off going back to my rheumy. Finally I felt so bad that I had to go and he determined that I was having an active Lupus flare and that I also have fibromyalgia. That was about 6 months ago, so I'm still learning about the all over pain now. So you may have fibro along with the lupus, which is pretty common.
I have muscular pain as well. And at times, it feels like bone pain. I have found that some of that can be attributed to vitamin D deficiency, which has been reported to be associated with Lupus.
So many of us with lupus have fibromyalgia as well. Have you asked your rheumy to test you (tender points) for fibromyalgia? The medications for fibro are different from those for lupus; I take Lyrica plus Cymbalta and it has really helped with my muscle pain! Feel better soon!
Hi All,
Thanks so much for all the great information!
Rheumy checked for fibro and don't have enough of the pressure points for a diagnosis, although I tried Lyrica. Lyrica was very bad for me and actually increased my pain believe or not. The rheumy had me double the dose and the pain doubled too and I had some sort of emotional reaction too. Lucky me! So no more Lyrica.
My vitamin D level was 12 about two years ago. I started supplementing and last it was check it was up to 42, still a little low but not as low as 12!
Reet, I liked what your wrote. I think it would be easier to ask where I don't hurt :-)
So it sounds like this pain is pretty normal for most of us. I think I'm somewhat relieved in that I was beginning to worry that there was something more wrong, or something else. It helps to know I'm not some sort of weirdo. I feel like such a baby with this, but I'm so tired and tired of the pain all the time.
I will bring the issue up at my next appointment and see if he can give me something more or different. Maybe muscle relaxers. Although I've take flexeril and it really knocks me out. Not sure I could work while taking it but haven't tried so maybe.
Anyway thanks again!
I've had the muscle pain for 20 years, mostly in my shoulders. for me it turned out to be fibromyalgia (it's not uncommon for people with an autoimmune disease to have more than one diagnosis). I tried everything under the sun, including acupuncture, TENs unit, narcotics, advil, heating pad, physical therapy, chiropractic... Finally I went on a gluten free dairy free diet (which cleared up the lupus but not the fibro). I also got rid of nutrasweet (aspartame/ Equal) and MSG, which cleared up the migraines but not the muscle pain.
Finally this year i went on cymbalta and that did it. I started on 30 mg, which worked for a few weeks, then I had to double it (on dr's orders). Then I connected the dots with eating chocolate and getting a fibro flareup. So I gave up chocolate. And that has allowed me to not have to increase the Cymbalta any further. My dr says she usually uses 120 mg to control pain, but so far I'm doing fine on 60 as long as I 1) avoid chocolate and the other things on my list and 2)don't spend too much time sitting on the computer and iphone (like 14-16 hours a day- I can be compulsive!).
That's what's working for me. So grateful to have the pain not ruling my life and ruining my sleep anymore! Hope this is helpful to someone.
I have done lots of changes to my diet (no red meat, no corn, no rye, no barley, no wheat, all organic) and my pain still continues to get worse. I have yet to give up chocolate but I have had extensive food allergy testing which did not reveal any autoimmune reaction to it. I may try giving it up anyway just to see if it helps.
As far as exercise, the work in a warm pool sounds really good to me but right now I am not sure where I would find the warm pool. I will have search it out. I am walking at least a couple times a week.
I am taking Lexapro right now for depression, so I would have to go off of that to go on Cymbalta. I may try that as well.
Thanks for all the input!
Hello, well let me say, YES!! And that comes with Love. 3years ago come Feb.7, 2010/2011, my doctor gave me the results of Lupus with rheumatoid arthrites, which affect all body part and organs (SLE). And it well cripple me in the future. He said within one-two years I would not be able to walk at all due to the rheumatoid will over ride the Lupus , pluse the problems of the Lupus would kick into full affect.!! But trying to stay in control as much as possible , I do walk and rest ALOT , but when it rain all muscles hurt like crazy, I get stiff so bad the only thing that helps when this happens is my best friend -The Heating pad,LOL
Ask your doctor to run the test for arthrites!! This is something serious , the pain in the muscles are no joke! Try to do your best and when your body start feeling like it is getting to have the pain bet it to the punch-go lay down and try not to focous on Nothing!! This help me to relax. Hope that things work out for you…Beverly L.
Hi Christy,
My pain is all over, mostly where my muscles connect to my bones in my feet, hands, arms, legs. My neck also hurts, and my shoulders. My left jaw and ear also hurt but this is a different kind of pulsing pain. Basically I hurt all over. :-(
Christy said:
Where exactly was your pain. I've had on and off pain along my left side/ back area . Right below rib cage I guess
Doc told me a while ago it was muscle related probably but recently (this week) it's caused me alot of pain.
I'm nt in pain right now but earlier today it hurt a lot.
Ann A. said:Dear heymj
I wish you the best of luck. I am not pain free. But at age 66 my pain level is lower than it has been in decades. It turned out that only a small part of my pain was coming from lupus. For six decades physicians had missed a couple of anatomical and skeletal malformations with which I was born. These are things that are now usually detected in newborn infants before they leave the hospital. I was dx at age 21 and almost every pain after that was dismissed as being caused by lupus and I was told that I should just learn to live with it. One of my knee surgeons actually responded to my complaint about pain with the words, "Ann get a life."
The problem with kidney was discovered by accident when I my old PCP sent me for an ultrasound. The newer pain of which I was complaining was an ulcer in my stomach. But the ultrasound tecnician touched a little lower and asked if I ever had pain in that spot. I told her that the pain was so severe that sometimes it put me on my knees.
So, I commend you for wanting to try things that will help with your pain. Don't give up. Don't ever give up.
Hugs
Thanks for all the great replies. I wish there was some way we could all feel better! I'm trying to work, and I don't have anyone to help, except my daughter, but I hate to ask her for help as she has her own family. I feel really scared and alone right now. I don't know if I'll be able to keep working and that really scares me. I keep thinking things will get better but they aren't, no matter what I try. I am asking for a referral to a pain management specialist as I don't know what else to do. Anyway, it is a great relief for me to have a place where I can go to talk about all this where I feel as though what I'm going through is understood. So thanks everyone!
Many times people with Lupus have other conditions such as Fibromyalgia that cause the muscular pain. Someone on here once said "Lupus never comes to the party alone". Fibro is a connective tissue disorder that can cause muscular pain although there are many other conditions that could possibly cause the pain. It's important to talk to your doctor about it and perhaps ask for a referral to a pain mgt specialist. Sometimes just simple treatments or easy exercises can help you.
Best of luck and please let us know what happens,
DeAnne