New here...no firm diagnosis

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steve63

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Hi Everyone,

I'm new to this forum. I've been dealing with chronic pain now for six years. Here are my symptoms:

- constant lower back pain, radiating down the left leg (doc says it's sciatica)
- very sore tender areas at different spots along my spine
- occasional random bursts of sharp nerve pain in other parts of my body
- anxiety and noise sensitivity

I've been to a rheumatologist, 2 neurologists and a chiropractor. I've had numerous blood tests, cat scans, 2 MRIs. They all came up with nothing. My doctors seem to be at a loss and that is very discouraging. I take Neurontin for the sharp pains (helps some) and Tramadol for the back pain. The Tramadol worked great at first but I think it's starting to lose it's punch.

Is there anyone else out there suffering from undiagnosed back pain? If anyone has any help or suggestions to offer I would greatly appreciate it. I'm starting to get depressed.

Steve
 
Hi Steve,

SounRAB like you are in quite a pickle. First, try not to get too far down in the dumps-it is not always easy to get back up right away. When you feel low, always feel free to come to this board. We help each other in ways our loved ones cannot because you truly do not understand unless you have gone through the debilitating back pain or continue to go through it. It is odd to me that with your symptoms, nothing shows up on your CT scan or MRI's. Sciatic pain IS caused by something. Often it is due to your SI joint (not same as S1) which is part of the tailbone area. Something is pressing against that nerve causing the pain to radiate down your leg. At least that is what I was told by one of my doctors. Have you had any surgeries on your back in the past? It can also be scar tissue. A wrong turn can cause it and the inflamation causes the pain to increase.

With nothing really found, you might want to see about being referred to a pain management doctor. At least he can regulate your meRAB and treat your pain with injections that might help as well.

I suffer from lower back pain and sciatic nerve pain that radiates on my right side. I had a posterior lurabar interbody fusion L4-S1 May of 2006. Since that time my pain has gotten worse and my right lower leg has gone nurab (almost a year ago now) and I get terrible spasm's in my lower leg that cause the foot to turn in. Man is it painful but not constant and doesn't last too long. Since the surgery, I have only seen the neuro that performed the surgery but he can't see anything causing my symptoms. My previous PM doctor however does so eventually I will have to find another Neuro or Ortheopedic doctor that specializes in the spine. It took visits to many neurosurgeons before one would talk to me at length and explain what was going on. Others either refused to treat me or claimed I was too young to go through this. I have the spine of an old woman apparently. Regardless, it takes a long long time and constant battles to get them to listen to you. Do not give up and do not automatically choose surgery because that doesn't always work either. The Tramadol works well for many for quite some time but as with all pain meRAB, you build up a tolerance and they don't work as well for you as they did initially. Good luck to you. I hope that others here will have some additional or better advice for you. Keep us posted.

Sincerely,
Llincoln
 
And just to add to what LLincoln said, sometimes what the pain management doctor will do can diagnose your problem. He may do something to treat a symptom, but by whether it helps or not he can tell the source of the problem.

Hope you get some answers.
Emily
 
I agree about the sciatica. Something neeRAB to be compressing a nerve somewhere to cause it. And depending on where the pain is traveling it might give a doc a good idea at what spine level it may be coming from. Also MRI's dont' always show everything. I know how this kind of pain can bring you down. Luckily when I've gotten sciatica and had an MRI, it's always showed something and i've had good success with nerve blocks and epidurals that helped the pain. Bad thing is I keep getting more herniations, plus I have scar tissue, and I have more thickening of all my lurabar facet joints. But that nerve pain can drive one to insanity! I also think you should try a Pain Managment doctor, maybe he can see somethign that the others havent. On my first MRI, my PM saw a tear in a disc that wasnt mentinoed in my MRI report. He said that would have explained the very local deep burning pain I had for a short time in a particular area that I pinpointed. He said that burning pain would have been from the gel like substance that leaked out of the disc from the tear. And that irritated the nerves around it.

You mentioned you had 2 MRI's...which parts of the spine were they on? Lurabar, thoracic, cervical?

Aside from that, please don't give up on yourself. You know that something is wrong and pain is a symptom. Pain is not normal, so you need to keep going and find someone that will help you solve your puzzle. You have to fight for yourself because no one else will. And wheneven you want, come here to ask our opinions or just come here to vent & get it off your chest.
 
Lincoln, Emily & Baybreeze,

Thanks for your responses!

I forgot to mention I did go to a Pain Doc last year. He gave me some Lidocaine patches which helped a little bit at night. He said the next step for me would be some type of injections but I'm afraid to go there. Two years ago I had a spinal in order to blast a kidney stone and it really caused my nerve pain to flair up bad. My neurologist says I have some type of centralized nerve hyperexcitability and that I should avoid having needles put in my spine at all cost.

I'm puzzled too why the MRIs did not show something in regard to the sciatica. I'm not sure what part of the spine my MRI's were done on. A few months ago it was so bad I could barely walk, although by the time I had the MRI done the sciatic pain had subsided alot. Right now the pain that is bothering me the most is the pain in my spine itself. It's like a bad toothache that never goes away, all the way down to the tailbone. The only thing that kills the pain now is Percocet, but I only have 30 pills so I have to use them very sparingly.

The hardest part of this is not having a diagnosis. Some people (even docs) have told me that perhaps it's all anxiety or stress related, which to me implies it's all in my head. At least my neurologist says he can tell I'm hurting - he says he can see all the muscles in my back are tightened up due to the pain. But sometimes you start to doubt yourself when every test comes back as normal.

Thank you all again for your encouragement. It's nice having a place to come vent and know there are people who understand.

Steve
 
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