[BerDuH]

Hello,
I wanted to post and share my story. If you're here, its likely that you or a loved one is suffering from back related pain. You know its a very scary thing. The spine is a very complex thing, and pain from issues can be mild to excruciating. I've been there for over 8 years.
Honestly, the doctors are not 100% sure what's wrong with me. That by itself was so scary. I started with pain in my forearms and fingers on the pinky side. Since I am in the computer field, I was misdiagnosed with carpal tunnel 3 times. Eventually, I wasn't able to work or drive. I was self employed and had to move back to my hometown so my family could care for me and so I could get healthcare. I'm sure many of you have experienced skeptical doctors who treated you like some junkie, just wanting pain meds. Yep. Been there many times. All they could tell me is that I have idiopathic neuropathy. So no reason that I literally couldn't do more than writhe on the floor in pain at times. I started seeing a chiropractor, which is when i started having leg and sciatic pain to the point where i couldn't walk without a cane, at the age of 27. They doped me up starting with Vicodin and ending with Fentanyl. I coped as best I could. I've had dozens of diagnostic tests, and the only thing that came from that was I have disc degeneration at C5-C7 and L4-S1.
They put me on increasing doses of Neurontin, which made me loopy and non functional. I finally got health insurance thanks to my husband and was referred to the best pain management doc in the state. He put me on Lyrica, a close cousin to Neurontin. It made me nauseous, so I started taking the dose at night. That was the beginning of relief for me. I also get steroidal epidurals every few months, which is painful as heck but the cervical ones help. I started working again. I could walk without the cane. I started working for a place that is huge into ergonomics and got a special chair. I also got a sleep number bed because I couldn't even sleep in the same bed as my husband. With all of this, I am now working full time. I take Vicodin for breakthrough pain but it isn't often. I also go to massage therapy and acupuncture. I use lots of ice and icy hot and heat. What do I have to lose by trying as much as I can?
Long and short of my story, never ever give up. You are not your disease. Keep an open mind, educate yourself, ask questions, and never stop trying. Listen to your body but try not to spend your whole day resting if you can because it can make it worse. I say listen to your body because I was shocked how much certain sitting/laying positions affect my condition. It doesn't always hurt right away so do think about the past day of activities if you have a very bad day. Ask your medical team who the best pain management doctor is in your area and don't think pain meds are the only solution.
Most of all, never do any new treatment (even home remedies) without consulting at least one doctor. Every procedure has risks, so ask questions. Be patient with yourself. Work with your doctor to try different ways of taking meds if you have side effects. And I'm not going to lie, I started therapy and that helped me cope with the sense of loss, hopelessness, fear, and anger I had from losing function in my life. Though I hurt, I am thankful. It has taught me so much. I can now ask for help without shame. I can work again. I'm even in school. I'm not saying your situation will have a positive outcome, but never stop trying.
My prayers are with you and your loved ones. Best of luck.
Berta

[pebblebeach2]

Berta:

So much I want to say after reading your post. I too have a long history, a very long history.
First let me say that it is great that you are able to work and are back in school That is wonderful to hear that someone is able to move on.

For me, I so wish I could do so many things. But my tolerance level is ever so limited.

Here is my story. I will try to give you the story without dragging it out more then I have to.

In 1988, I ws 35 at the time. I took sick. Didnt know what was wrong. I ws getting nauseous etc. I contacted my primary doc and because of the symptoms thought it was Kidney stongs. Well I went the necessary test and lo and behold first it was not Kidney Stones. What amazing thing they did find was that I was born with 1 kidney. No one ever knew. You never really check the kdineys unless there is an issue. So here I find I was born with kidney; thus the problem was not Kidney stones. Why the nausea? Why the radiagint pain? Long story short it turned out that i had bulging discs in the lumbar spine that set off all the symptoms. I went into traction; physical therapy and was fine until 1993 or so. When the bulges became herniated.

Thus the beginning of my spine surgeries. I went thru lumbar surgery and I was fine.Went back to wrok. That was 1994. In 1995 I developed stenosis of the neck, thus the next surgery. 1996 comes around more low back surgery. It took a while to figure out what was wrong and what to do. 1997 finally I went thru surgery of the lumbar spine and they put in Harrington Rods. Back to wrok in 1998 I think.

1999 comes around back to cervical/neck issues. This time I had to go thru a 12 hour surgery on the neck and it had to be done over a 2 day period and wearing a neck brace for 4+ months. Back to work again

I was on and off disability so many times.

2003 rolls around I wound up in the ER and found 1 I was diabetic. My blood sugar was over 1500. Almost died from that. I also had a blood clot in my left leg so surgery was done. I was told there was a chance of amputation. The leg was saved. As I first stated I found I had 1 kidney well at this time I went into kidney failure and had to go thru dialysis temporarily. Right now I do have kidney disease and being monitored as to when dialysis will be started again and if and when I will go on a transplant list.

This also started my permanent disability. In 2007 I found a mass on my pancreas and went thru pancreatic cancer surgery. I survived. I lucked out again. I lucked out also when diagnosed witht the diabetes no one expected me to survive.

I also had a spinal cord stimulator implanted for pain but removed since it wasnt helping the pain.

For now I have severe nerve damage in the neck and low back; arthritis severe and neuropathy from the spine and from the diabetes.

They found that I have more neck issues but are afraid to touch me because of all the surgeries that I have been thru; all the other health risks as well. I am losing function in my arms. They are getting weaker. I have severe numbness in the left leg but is now spread to the right leg.

Thus sitting any length of time; standing doing any activity because of the weakness is a problem.

I am being medicated to help me deal with the pain issues. I may need to go onto something stronger. On hydrocodone now but is a morphone pump in my future? That is the question at hand at the moment.

Do I feel hopeless at times? I would be lying to you and everyone else if I said no.

But you are right you have to have some hope to help you keep going. Who knows what is around the next corner. You always have to be searching for an answer.

I will close for now. Good luck in your endeavors. I wish you the best of luck.


Allan

[ginnie]

You are inspiration!!!!! Yes there is always hope.! I did go the surgery route, and had alot of pain left over. I found a new kind of Doctor called a physiatrist. Treats at a cellular level, to help with neruopathic pain. She is also a pain specialist. I got to stop taking narcotic after 10 years. There is hope that someone can get better! I take a host of suppliments, and they help. Good for you for never giving up.!~! Glad you found Neruo Talk. To get this story of yours gives all back sufferers a positive outlook. I hope you continue to have a great life. This type of message is good for all of us. ginnie