Tired - Joint/Bone Pain - Frustrated!

[vz101]

In September I had a GI bleed resulting in three hospitalizations and the infusion of 8 units of blood. I have not felt the same since being discharged from the hospital. I'm exhausted, and have terrible joint pain in my elbows, knees, and kneck. Plus my legs swell at the calves every night. Then I'm up urinating several times a night.

My CBC is holding at a 10. The only new med is a IV iron Infed but the last dose was 6 weeks ago. The GI Dr check my Thyroid all is ok. He thinks I'm depressed. Which I maybe a little depressed, but I don't think its the cause of my issues.

My primary care Dr. ran a variety of tests and that came back with a vitamin D deficiency and low testosterone levels.

I'm still concerned they are missing something.

 

[If*]

Hello, big giant gentle hug. I am not sure if this is the same but I have had joint and bone pain ~ right before - during - and shortly after a flare. The bone pain feels like a throbbing headache in the bone and has happened in my arm bones. The joint pain is in ankles, elbows and hands. The kind of pain that makes reaching, putting dishes away painful. The bone and joint pain when they finally do go away seem to over night.
I have had swelling in my lower legs, ankles and feet. Usually in a flare and when malnutrition is present and I have suffered weight loss at a fast pace. It makes my feet feel like they will burst. I keep them propped up when this happens and I try to walk as much as I can. I have nerve damage 24/7 and it gets even worse with the swelling. My toes bend up the wrong way and stay cramped for days. Can you ask your DR. what to do for the swelling?
You mention you are urinating often, have they checked your blood sugar?

For me, it can take so much longer to build back up then a flare and the knock down took.

This is a trying illness ~ an effort to not be depressed. It makes me sad especially when I am struggling.
I am not sure if any of this helps, I guess I just didn't want you to feel alone.
I hope you feel better soon.

Much peace.
I pray for a cure for ALL of us.
:hug:

 

[afidz]

As far as the joint and bone pain, have you considered seeing a rheumatologist? Its possible that you have started developing some type of arthritis, it is very common amoung IBD sufferers.
Depression in itself can make you tired, add in that you are flaring, and from what it sounds like, a pretty bad flare, it only makes sense for you to be tired.
Your body is fighting, it needs a lot of energy, its ok to give in to it (easier said than done, responsibilities unfortunately still have priority)
I hope you start to feel better and someone figures out how to help you
:hug:

 

[carrollco]

After getting infusions of antibiotics, taking Humira and 6 mp, I was suffering severe muscle and joint pain. Turned out I was low on D B13 and, oh yeah, magnesium. A few months after starting it began to ease off. To me, it felt like knives in my bones. Horrible feeling.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[carrollco]

That would be B12. Sheesh.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[Ribo]

That would be B12. Sheesh.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

I think I'd rather try B13. It sounds more interesting, if slightly less lucky

 

[vz101]

I have had my sugar levels checked several times but they have always been "fine". The swelling is isolated to my calves, but when they do swell my knees get very stiff as well. The joint/bone pain is strange to because it started after the last hospitalization, at which time I was on prednisone. Both Dr said that if it was arthritis the pred should help. Also I'm on humira and methotrexate which is often prescribed for people with arthritis.

My B12 level are stable.

Unfortunately I dont know who to call about what, the GI, PCP, or Hematologist. UGH...