Is this a flare? I don't know :(

Hello all...I apologize I haven't been around since I first posted a few weeks ago. I have been feeling terrible. Since having sinus/nasal surgery I have just been feeling worse and worse. Over the last two weeks I have been going downhill and I don't know what to do. Since I am new to fibromyalgia and not even on medication yet, I really don't know if this is a fibro flare I'm going through, or something else entirely (there are a lot of things going on with my health, including possible lupus, and I'm always scared it's something more serious).

My fatigue is worsening, which is really saying something since it was already extreme, to the point where I feel almost out of breath from walking from my car to the house. On days when I don't absolutely have to do something like go to work I can barely get off the couch. I'm so nauseous, I feel like I'm going to throw up from just a tiny amount of food. I'm getting weird IBS symptoms too, like diarrhea, when my normal pattern is constipation. My body feels achy and hurts to touch. I've been having headaches (though I have those all the time) and my lymph node has been so swollen my ENT thought it was infected so he put me on prednisone. That just made my body aches WORSE and now my legs and back and butt hurt so badly. :( I don't know what to do to feel better. I feel constantly weak and literally shaky and pale.

I am starting on Lyrica tonight under the guidance of my neurologist...I have been on it before but that was before the fibro/lupus stuff started. So I don't know if it will help with things or not. So I'm nervous about that too. But I don't know if this is a fibro flare or something else..and if it is fibro I have no idea how to feel better :( :( I just feel lost.

Hi mcgraw,

I'm sorry to hear that you've been having such a rough time.  Are you still on the prednisone or off now?  I ask because I was on prednisone for a sever allergic reaction.  After the first few days I had to go back to the Dr. because I had such severe pain and muscle weakness and couldn't stand for longer than a few minutes.  Literally, my legs were so shakey and couldn't hold me up.  The Dr. ran some tests to make sure the prednisone wasn't causing the problem.  When the blood work came back fine she determined it was my body insisting I rest/a terrible flare and I was basically on bedrest.  After about 3 days of doing nothing but staying in bed sleeping or going to the couch I was fine.

When I came off the prednisone though I was in the worst shape I've ever been.  I tapered off properly and I still had terrible withdrawal effects.  I lost my appetite and became extremely nauseous.  I had no energy to do anything and just kept feeling worse and worse.  I was tested for mono because my Dr. was convinced that's what happened.  When that came back normal we thought we'd give it time.  By the next week I was still sleeping 12 - 14 hours a day and was running on empty.  I couldn't even force myself to eat.  I was getting heart palpitations and one day I was extremely winded walking from the elevator to my apartment, maybe 25 feet.  That night I wound up in the ER.  I was EXTREMELY dehydrated and my palpitations were out of control.  They ran numerous tests and everything was normal.  I had to do follow up work with a cardiologist due to premature heart beats and a very low heart rate.  The cardiologist said things were fine but that the only thing she could assume was that my body was still trying to recover from the prednisone.  Her and my regular Dr. both had never seen anything this severe, but they assume it was the combination of having fibromyalgia and stopping the steroids.  It took me months to start feeling a little better.

I know it isn't reassuring to hear that if it is the steroids then it may take a really long time, but so much of what you wrote is exactly what I went through.  Please make sure you're doing the best to take care of yourself though.  Make sure you drink plenty of water and try to get as many calories in as you can.  I also had terrible diahrrea at the same time as not being able to eat and I didn't notice how little I was drinking.  It was so easy to get dehydrated.  Maybe try drinking Ensure or anything you think you may be able to tolerate.

I really hope you begin to feel better soon.  I know how terrible those symptoms are and how much you wish they would go away.

I hate to ask but did anyone ever check the "un-obvious" things like iron deficiency, b-12 and vitamin D deficiency? The reason I ask is because I also went thru almost the same type of "flare" and I was extremely low in all three. It took several months to figure it out and get better from it. Now I know to have those checked first whenever I feel that way. It's really tough to go thru a flare but to go thru one and have other things wrong makes it almost feel impossible.

I hope you get to feeling better soon.

Hello all, thank you so much for your advice and kind words. I have taken Lyrica last night and this morning, and though I feel a little loopy and out of it...I think I feel a tad bit better already. I was able to get up this morning and go to my class that I usually have to skip due to pain and exhaustion. So, I suppose that's good. However, I'm still exhausted and having chest pain and the shortness of breath, etc.

My rheumatologist actually CALLED me yesterday (a miracle!!) and we talked for quite a while about what's going on. When I see my PC tomorrow my rheumy wants me to be tested for my levels of vitamin D (she said to get the 25 hydroxy test). I also want to be tested for B12, iron, thyroid, adrenal, kidney, etc. Are there are other vitamin deficiency tests I should get? I also am going to get SED rate, ANA, and all the lupus test. I wonder if my PC is going to think I'm crazy. Can they do all these tests on the same day? Is adrenal function a blood test also?

Also, my rheumy wants to start me on Plaquenil...which I am starting tomorrow. A little scared :(

Thank you all for your replies and advice!