I've had all those symptoms. My major symptoms were joint and muscle pain and severe exhaustion.
Other lesser symptoms were malaise, nausea, dizziness, hair loss, optical migraines, weakness, swelling, sensitive skin and rashes, mouth sores, scalp sores, digestive issues among many others.

My 2 cents is that prednisone is one of those meds that can be a live saver, but can also be bad for our overall health in many ways. I hope to avoid it for the rest of my life. I have been on it, yes, and would like to say "never again."

I am currently on plaquinel and methotrexate (small dosage). These two took my pain from about an 8 to a zero. The only lingering problem I have is just that I am still exhausted, but not like I was when the pain was so high. Pain is exhausting in and of itself.

I'm sure not everyone would agree with my thoughts, but that is my own experience. I'd suggest you find a doc who knows how to use meds besides prednisone as a long-term plan. Keep trying rheumatologists until you find one who really listens and works with you on the meds instead of talking "at" you.

I found a good one at a research hospital. She was like a research guru on Methotrexate and really understood the dosages. She said most rheumies overdose on mtx. She's retired now, sadly. So keep looking!

P.S. If you want to talk further, just send me a message on here as I don't often get updates about threads I post on (my email link doesn't always forward to me like it does for others on DS). Thanks.

By "overdose" I mean that she said most docs write the scripts for too high of a dose for patients when a smaller dose would work better and be less toxic. Sorry, I should have added one of my big symptoms is BRAIN FOG!!!!
lol
oh dear.

Hi DSRM. I do have those symptoms too.

The fatigue is something my doc says is EXTREMELY hard to treat. It doesn't seem anything has helped for me.

My pain and swelling are better after treatments with prednisone, plaquenil and cellcept. I also take nefedipine for secondary Raynauds which has it's own kind of symptoms and numbness.

I have the numbness you describe in my hands and sometimes my arms, but my doc seems to think it is related to swelling in my hands/fingers. It hurt to even open doors, write, type, brush my teeth, etc.

I had physical therapy for about 6 weeks which did help. My therapist gave me splints to wear which I do when they start getting bad again. Supposed to wear them night and day. But, the thing is about the numbness--it doesn't totally go away--keeps coming back as the swelling gets bad again. I guess it is just one of those things I have to live with.

Not sure if this is the same for you, but this is what did help somewhat for me. Maybe ask if you can get a referral for occupational therapy--maybe it will help or maybe your doc can come up with some suggestions! : )

DSRM, I think that we could be twin sisters! I'm so sorry of trying to explain what numbness and pain in the same joint or muscle feels like. Sort of an oxymoron but that is the easiest way to explain it. I too have dealt with the joint pain much longer but the last few months just walking to my neighbor's house (5 houses away) can leave my legs feeling like I just walked 5 miles. I would say at least 5 out of 7 days I wake feeling nauseous. I also have congestive heart failure so it is sometimes hard to tell where the symptoms are coming from. Antoher symptom that I'm not sure if it is related to Lupus at all is when I bend over to pick something up or put my shoes on, etc. my head feels like it is going to explode. The pressure seems phenomenol and my forehead feels very warm.
I have been on prednisone for 4 days now and my symptoms are much less severe. The tightness, pain and swelling in my hands and arms is much less. I do find myself still having palpitations and tightness in my chest especially at night. Tomorrow will be the last day of the prednisone and then my rheumatologist is going to have me try Plaquenil for a while and see how that does. Say a prayer for me that the Plaquenil will work as well and not cause any adverse reactions.

Mimi

Hi there!
I have similar symptoms...
Unpredictable fatigue, numbness in my fingers and toes,I had the muscle pain first, mainly my thighs, feels comparable to 'over doing it' at the gym or running a marathon, yet non of that took place. It's hard to squat down or sit on the floor to lay with my kids. I have had this every single day to some degree since February. Now I am getting the joint pain in my elbows, knees, what feels like carpal tunnel in my wrist at times. There are many more symtpoms I have, but these are the ones that are like what you may be experiencing. I am undiagnosed at the moment, just a + ANA and evrything but Lupus ruled out. No meds, just pushing through and LOVING hot showers!
Nicole :o)

Thank you so much for the replies, as it turns out my doc thinks i may have Fibromyalgia. I dont know much about it so Google here I come. He is starting me on Cymbalta pending further blood work to make sure its not lupus related. My job may not let me work now due to medical and medication restrictions. Its such a tough time now for me and i appreciate your support. Trying not to stress over it but just praying that everything will work out in the end. Please keep me in your thoughts and prayers.

I think the pain and fatigue in the thighs must be very symptomatic of Lupus, as I too have that problem. My fatigue also fluctuates, which makes it hard to plan things. Hope things get better soon....:)

I have alot of the same symptoms too. The fatique is killing me right now. I hate it, as with 3 kids it is so hard to just lay around all the time. Plaquinil was a life saver for me in the begining, but didn't do enough so I went on prednisone about September last year, I can't get off of it.. I would never go on it again had I known I wouldn't be off of it by now..

I have major joint pain, numbness in my arms from the elbow down to the fingers, numbness in my feet (but that might be from my back as I have major back problems so hard to tell what is causing what). hair falling out, burn and rash if I even think about going out in the sun, nausea all the time.

Just wanted you to know you aren't alone... Good luck, and hope you feel better soon.

Yes, I get them all. I have joint/muscle pain, tingly feeling in my fingers in the winter, and fatigue for sure. Im always tired and I cant sleep at night I have insomnia as well. I use to take prednisone but my doctor took me off because it made me sick so know Im taking Plaquenil & Methotrexate and so far it helps. When I go to the gym I really feel the pain the next day but its good to workout a little to move your muscle/ joints.

I just recently went to the doctor with so many of these very symptoms. My ANA came back postive and my titer number was 160 or something of that nature. The other various test that she ran pointed to Lupus. However the RA doctor suggested that it was just a "mild" case of Lupus and I shouldn't worry. Since seeing her I have become increasingly nausea and achy. I am search of a new RA doctor. The nausea is new for me. My body is alo increasing in it's level of pain. I have not experienced any numbness, however.