NeuroTalk Support Groups - What the heck is going on?

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What the heck is going on?

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!:eek:
Does ANY of this sound familiar?
Erin

Erin,

:hug: 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.

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

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!:D

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!:D

No antibiotics right now. Thankfully!

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

Love,
Erin:hug:

Quote:

Originally Posted by Joanmarie63 (Post 568243)

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........:D LOL!

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

How are YOU feeling?

Love,
Erin:hug:

Quote:

Originally Posted by AnnieB3 (Post 568269)

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.