Unbearable hip/leg pain

I am 23, and for the past 4 years I have been hospitalized about 10 times. My hips and back hurt every day, but usually only when I have another ailment, (especially fever) do I have go to the ER because the pain (mostly in my legs) is unbearable to the point where I cant move or stand. This happened the first time when I had a very bad virus and a fever around 104.5.  My skin is also extremely sensitive as if I am bruised all over when this happens. This lasts until I am over my sickness.  To control the pain, I am administered 4mg of Morphine and 1-2mg of Dilaudid before I get any relief. Nothing else has ever worked. My last episode I was admitted for 2 weeks with multifocal pneumonia in both lungs and didn't walk for 10 days. During my stay, the doctors performed every test they could think of.  It is not my nerves, bones, muscles, or neurological.  It is not MS, Lupus, Polio, Meningitis, or anything else they tested for.  I have been to endless specialists, and even been told this is in my head which it is NOT.  They call me a "Dr. House situation."  Does anyone know what this could be?

[mkh9]

Just wondering if you had an MRI of your back? Perhaps you injured your hip/low back and the inflammation of being ill just trigger the back pain. Why it flares up I don't know. I was thinking it sounded like an autoimmune disease too. There are some back pain problems that are inflammatory. The pneumonia I don't know if that is related but it sounds like you also have lowered immunity.

[Di89]

The pneumonia wasn't realted to anything. i just got sick. the pain was a result of the pneumonia..I've had numerous MRI's and catscan of my back (which also hurts all the time but not the same type of pain) And I definitely have lowered immunity it seems.

[mkh9]

Do you have any reason/disease that would cause you to have lowered immunity such as diabetis or anything else?  Been on steroids for any reason ?It sounds like an infection of the spine that you got from another infection. When they tested you for meningitis did they do a spinal tap? Have you been tested for TB? It can also get in the spine. I know it is a bit out there but I'm just asking. Have they told you had a low lymphocyte count or white blood count or low immunoglobulin level?
mkh9

[mkh9]

One other question is do you have a mediterranean family (background)? There is familial mediterranean fever. The only symptom that you don't have with this is the abdominal pain (or do you)? It occurs in 95% of people with this disease. Google mediterranean fever and wikipedia or whichever site you like and it shows symptoms that are very similar except for the ab pain. Just trying.
mkh9

[Gio77Italy]

well first of all how do you know it was a virus? if it was a virus the cause of the problem then it should still be possible to detect it now.

there are molds and bacteria that can infect the lungs and cause osteomyelitis.

you should do blood culture for Streptococcus, Staphilocuccus Aureus which causes osteomyelitis.

maybe Bone scintigraphy

weak skin I don't know. was the skin thinned ?

you could try to consult University Hospitals, research centers ... good luck!

[Di89]

I am of Mediterranean backround, but that seems like a much more acute thing that requires immediate attention.. it doesnt sound like it could go on for years  i dont spike a fever often... and yes i was tested for ALL bacteria bone density tests... only thing i havnt done is a spinal tap.. i will do that soon.

[sherrisummers607]

I am not a dr but i experience leg,back and hip pain have you had your sciatica nerve checked this can cause hip,back,and leg pain.

[Di89]

i have :(

[Gio77Italy]

are there signs of infection/inflammation in your blood tests? platelets, liver enzims, serology, complements

[Di89]

bloodwork is always fine.... except one time when i was very sick all my levels were off to a point where she asked if I'd been starving myself for months ( no way ) and then they returned back to normal throughout the next two weeks, but they could never explain why my the numbers were so off in the first place...

[Niecy50]

I too have been having hip/pelvic leg and arm pain. It feels like when I have a fever, they ache so bad. I also had unexplained bruising, bad back pain and buttock pain. Some days I can't hardly stand. Ive had MRI, CT, and US and so many labs, checking my CBC and I'm always told everything is normal, except that I have a herniated disc in my neck that has protruded so far out that It's flattening my spinal cord, and the spinal fluid can't get around it. The spinal specialist said he would like to do surgery, but here is my dilema. In 2008, I had foot surgery and it wouldn't heal. Took several months and several different antibiotics, I had cellulutis and swelling. Then in 2010 I had another foot surgery in the same place, and the same thing happened. My Dr. Did MRI to male sure there was no foreign body and found nothing. Then I had an abdominal repair and had severe inflammation near my incision, which looked well on the outside. It was after that my ankle started hurting. Dr did an MRI to make sure that it wasn't a torn ligament,.nope. then I had the abdominal pain, then the hip/pelvic, buttock leg pain. My BP skyrocketed. My blood tests have continually showed low lymphocytes, high absolute neutrophils, high monocytes, high protein C, low AST, I also have abnormal bone marrow density on the foot. I've had extreme thirst and difficulty breathing like something has crushed my chest. I have been told by several docs that my lab numbers are nothing to be concerned about. My last Dr. after seeing her one time, told me my problem was anxiety. Guess whose not my dr. Anymore. Anyway my GYN, listened to me read off all my labs, and said i need to see a hematologist, which I will see July 17. Their going to do a perefrial blood smear. This should be able to determine if It's cancer, bacteria or an autoimmune disease. Have you seen a hematologist, or an endocronologist, or rhumatologist?

[Niecy50]

I too have been having hip/pelvic leg and arm pain. It feels like when I have a fever, they ache so bad. I also had unexplained bruising, bad back pain and buttock pain. Some days I can't hardly stand. Ive had MRI, CT, and US and so many labs, checking my CBC and I'm always told everything is normal, except that I have a herniated disc in my neck that has protruded so far out that It's flattening my spinal cord, and the spinal fluid can't get around it. The spinal specialist said he would like to do surgery, but here is my dilema. In 2008, I had foot surgery and it wouldn't heal. Took several months and several different antibiotics, I had cellulutis and swelling. Then in 2010 I had another foot surgery in the same place, and the same thing happened. My Dr. Did MRI to male sure there was no foreign body and found nothing. Then I had an abdominal repair and had severe inflammation near my incision, which looked well on the outside. It was after that my ankle started hurting. Dr did an MRI to make sure that it wasn't a torn ligament,.nope. then I had the abdominal pain, then the hip/pelvic, buttock leg pain. My BP skyrocketed. My blood tests have continually showed low lymphocytes, high absolute neutrophils, high monocytes, high protein C, low AST, I also have abnormal bone marrow density on the foot. I've had extreme thirst and difficulty breathing like something has crushed my chest. I have been told by several docs that my lab numbers are nothing to be concerned about. My last Dr. after seeing her one time, told me my problem was anxiety. Guess whose not my dr. Anymore. Anyway my GYN, listened to me read off all my labs, and said i need to see a hematologist, which I will see July 17. Their going to do a perefrial blood smear. This should be able to determine if It's cancer, bacteria or an autoimmune disease. Have you seen a hematologist, or an endocronologist, or rhumatologist?

[Mm14]

Have you had any luck with any answers? My wife is going threw the same thing and nobody can figure it out. It's everything you have posted on may 14th