Hi, Undefinable 5, and welcome to this forum of nice people. I hope you will be encouraged here. Be sure to read old posts, as they contain lots of good information.

In 2006 when I first became ill, my muscles, joints, and bones all hurt badly 24/7. However, doctors couldn't figure out what was wrong with me. My GP suspected lupus, but blood work was always negative so he said he couldn't treat me. In 2008 I was diagnosed with polymyositis, in 2009 osteoporosis, and in 2010/2011 I was diagnosed with lupus (via skin biopsies). Polymyositis is when the muscles are so inflamed that they are unable to receive messages from the brain and nerves. Thus you become weaker and weaker, until you are unable to move. I was nearly paralyzed from the jaw downward and a couple weeks from dying before a neuro figured out my problem. Over the years I have done lots of research and discovered that untreated lupus can trigger myositis. (Believe me, you don't want any form of myositis.) Lupus-induced myositis is usually treatable with prednisone. So one of the reasons why I suspect my myositis was triggered by untreated lupus is because prednisone was the only medication I needed.

At some point, I discovered that gluten causes muscle inflammation for me within 30-60 minutes of ingestion. My current doctor said that "Gluten is like a poison for anyone with an autoimmune disease." Also, artificial sweeteners cause me joint pain (even a few swallows of diet soda pop). My current GP is a holistic M.D. and has helped me find suitable supplements that have helped with many things. In fact I am no longer on any prescription meds and my pain levels are usually low. Yay!

Again, welcome. And best wishes to you. Hope you feel better soon.

Thank you for the reply. So you are able to free of prescribed meds? That is awesome. I'm hoping that myositis is not the case for me. I will discuss it with my GP on my next appt Friday. I just seems like my muscles become weaker every morning in a different area of my body. This morning I woke up with a burning pain on the back of my right leg. It feels like someone placed a hot iron on my skin; however, there are no burns, rashes, bruises, etc. It is hurting me to wear blue jeans today.

You might have better results going to a rheumatologists. They are more up on different rheumatological conditions.

I have a rheumatologist doctor also, unfortunately she haven't been much help. She told me any symptoms related to lupus could not be helped other than taking plaquenil. My Primary physician takes the time to listen and encourage.

I have had a lot of muscle pain over the years, after 7 months on plaquenil I am starting to have more relaxed muscles, with less pain.
I noticed it 2 weeks ago, when I was resting in bed, my muscles were no longer knotted, but relaxed, this is after almost 40 years of pain and tension. My first thought was how strange it felt, not having tension all the time. I still have pain from OA and PN, but this is a big improvement!

I have polymyositis as well. I was dx'd 1 year after my lupus dx. It started with weakness in my arms and hands (related to joints) but was controlled with meds. I've been taking plaquenil for a while now and have recently added prednisone (among others) because it got a lot worse. It was getting to the point that I could barely lift my legs. I had so much pain all the time. The drugs work though, because just yesterday I climbed the stairs for the first time in months! I hope your docs help you figure it out. good luck!

Hello,
I am very sorry for the pain you experience...From my talks to other SLE/MCTD-patients, I did notice over the years, that muscle-pain is quite common umongst us.
The only "medicine" that helps and assists me every time, is taking a hot (not too hot) bath with some added pine-oils (to freshen up) or some really muscle-relaxing Juniper-oils... Whenever my muscle pain is really very bad, I take a "Joint & Muscle Rescue Bath" for about 15-20 minutes with Arnica oils... During every bath I also listen and concentrate on my favourite classical composers like Bach, Haendel or Vivaldi and their wonderful music always adds to the relaxing experience of the oil in my bath...
These bathes always help me a lot, they relaxe my body a lot and after every bath I always take a good rest on the sofa and a few hours later and also the next day I already feel much better again.
The oils I take in my bathes originate from a well known Continental Health Company and their (well known medical) oils are based on the herbal discoveries of a protestant priest...
Perhaps everyone has their own medical help/assistance when they suffer from these debilitating muscle pains, but what I have described above has helped and assisted me for many years...
Good luck from Kristina.

Sorry you are in such pain I hope they dx it soon. Some said that Lupus will cause muscles aches. I have had Fibromyalgia for many years so already had the muscle aches. I have noticed that since starting the Plaquenil a little of a mon ago the muscle aches are not as severe, still happen but not like before. Whereas I have new worsened joint pain ...but I imagine it will take awhile for the Plaquenil to work on that.
Before I did notice if I rested too much and muscles became weak I had more pain. Exercise helped (wen I was not in a flare).
Your pain might be due to the muscle relaxers ... it is possible for them to make you very weak, I never liked that SE so I never take muscle relaxers. You might try tapering off with Dr's approval and see if there is improvement. I had a friend who did that and that was the fix, also to her extreme fatigue and depression ... too much muscle relaxers.
Heron

Heron2, just wait until the 6-7 months of taking Plaquenil, that is when I really noticed the difference. Still getting used to relaxed muscles, at least a couple times a day...

Heron2 I agree that it could be the muscle relaxers making it worse but I was given the relaxers because of the severe pain. @Jonsparky I'm waiting for the Plaquenil to kick in.