Severe pain for 8 years

Hello everybody.....need some guidance. I have had severe pain from my lumbar area to my knees for the last 8 years. I have always had a decent pain tolerance....had my 3 children without an epidural and have had many broken bones and didn't require medication. As long as I can remember my back and hips have bothered me. while I was pregnant with my 3rd child the pain became constant and more intense. Just thought it was from the pregnancy. 4 months after delivery I started getting this horrible stabbing in my left si area (upper butt), traveling around my leg, bilateral intermittent numbness, and severe low back pain. I was extremely healthy and fit. 8 years of testing and aggravation has left me with this:
T hey believe it to be autoimmune because I have a positive ana, my glands are constantly swollen and I test positive always for epstein barr. I have constant stabbing down my spine especially at l5s1. Pain in my hips down my legs and over both sides of my butt. I have had every test and procedure they can think of. I also get a generalized burning. It feels like when you have a  high fever and it feels like your skin hurts. In the evening I run a low grade temp usually around 100.I get horrible muscle spasms that are sometimes visible. My legs turn dark purple with red and white spots and when I stand for a few hours they get edematous. I take Lyrica, methadone, Nucynta, and a celebrex. I have nerve blocks twice a year but they have never been able to visualize anything on the mri that could cause this. I want answers because I don't want to just keep treating the symptoms . If I knew what this was then maybe I could actually treat the problem. Please let me know if you have any info. Thanks

[Dr Sharma]

Hi there. Apart from the contentions of an autommune disorder being missed, this also needs multiple sclerosis to be investigated. These multiple neurological symptoms could be due to a chronic demyelinating condition called multiple sclerosis where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Take care.

[Aprillemoyne]

I have had a mri without contrast of the brain and many ep tests which show only delays in the nerves in my lower extremities. They say it is probably just irritation. I was originally diagnosed with lupus because when it first started I had the butterfly rash over my nose and cheeks but after seeing a new rheumatologist he retracted that diagnosis

[achilles2]

Sorry you have been through so much pain. Has anyone looked at allergies. I recommend you find a good allergist immunologist-- plus if if it is autoimmune he or she would know a lot. If you are in the Chicago area I recommend that you go see Dr. Mary Tobin at RUSH (just google her name with RUSH and you will find her info).

I mention allergies because my allergies especially gluten (wheat, rye, barely) give me neurological symptoms such as migraines and nerve pain. (And allergies are autoimmune). Also has anyone look at your thyroid, you might want to consider getting a thyroid panal and having a an ultrasound of the thyroid to check for Hashimotos. Also the ranges for TSH are off so be sure to get your results if you and if it near 2.0 then you more than likely (especially with you symptoms have a unbalanced thyroid). To find out more info about thyroid I recommend "The Thyroid Solution."
http://www.amazon.com/Thyroid-Solution-Revolutionary-Mind-Body-Program/dp/0345429206

I hope this helps,

achilles2

PS Have your Vit b12 levels been checked? If not you might want to get them checked and this is another where you will want the results. The range starts at 250, yet my friends neurologist said that you have neurological symptoms with a level in the 500's. (I try to keep mine near 1000).

I hope this helps,

achilles2