Hello all! Something is seriously wrong with me lately - maybe fibro, all I know is that it started with my back and has spread to my whole body. The only way to describe it is a deep, down to the marrow pain that wakes me up and makes me miserable!
I have had xray after xray to rule out fractures and blood work to rule out anemia, etc and there doesn't seem to be an answer,
this has gotten a WHOLE lot worse since my trip to NY!
My neuro says its the roids - thats why we cut back to the 40/20 and I really hope it is but am worrying b/c despite wearing pain patches and taking meds I am never really FREE of pain anymore.
I have always had a high tolerance for pain! The day after giving birth to my son I was up cooking and cleaning and after having 8 teeth (including 4 impacted wisdom teeth) removed I went out to see Copperfield and dinner, so when I say I hurt I HURT!
Does ANY of this sound familiar?
Erin

Erin,

I feel your pain {literally} have your B-12 checked if you haven't already.. also are you taking any antibiotics? I have learned that depending on the kind it can cause pain like we get. Please keep us updated.

Hey sweetie! I have had my b-12 checked - I've had EVERYTHING checked weekly - except for my antibodies - which were down to 127 the last time I was in the hospital! Down from 600! YAY!

That is why I am wondering if I DO have fibro.......I emailed my GP @ 3:00 to tell her about the pain - the squeaky wheel does get the grease!

No antibiotics right now. Thankfully!

How are YOU doing? How do you cope with the pain?

Love,
Erin

Erin, Have they checked your erythrocyte sedimentation rate? Because you are immunosuppressed, a CBC may not show an infection. What if you have an infection? Have you taken your temp? When I had Clostridium Difficile, I had that kind of deep bone ache.

Has anyone checked your bone density?

You have a hematologist. Maybe it would be a good idea to see him now.

Whatever is going on, it isn't normal to feel that way. Keep a lookout for any signs of infection.

I hope you can figure it out and feel better soon! When in doubt, go in.

Annie

Hello again! I've had EVERYTHING checked - they know SOMETHING is wrong, but don't know what I am dealing with....is there any type of test for fibro?

Bone density is great. Blood is wonky - but still with all of the vitamins I take it is good as well. I am scared b/c the pain just won;t go away. That's why I emailed my Dr. @ 3:00 AM to tell her what is going on........ LOL!

I'm going to see my GP on Monday and Dr. I on Wednesday........

How are YOU feeling?

Love,
Erin

Erin,

I hope you are feeling better! I have a thought, although most likely this is not it. When I first had a kidney infection I had the pain you described..started in my back and pain spread everywhere(felt like it was in my bones)...I had no idea it was kidney pain. A person can have these pains from other kidney problems and with medications the kidneys have to work extra hard. So I am suggesting that it is the medication and/or dehyration. I know I have to drink extra water since starting mestinon or my back hurts....and it is actually my kidneys needing more water.

I am glad you are talking to your doctor.

Good point, Susan.

Erin, How much vitamin D do you take? You also may not be absorbing nutrients as well while on Pred.