Nerve Pain

Hello @colorbug, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it must be very difficult for you with your nerve pain and not being able to find relief or get the doctor's help to figure out if there is something that will work better for you.

@nmo2016, @grandmar, @sharonalllen, @lioness and other members may have some suggestions for you. Have you tried to seek help at a major teaching hospital or health facility like Mayo Clinic?

Hello @colorbug, welcome to Connect. You most definitely have come to the right place for community support, experience, and encouragement.

I'm very sorry to hear that you have pain throughout your body. I encourage you to advocate for yourself and not quit until a neurologist, rheumatologist, or any other Dr sees you. It's important to rule out diagnoses to get to the bottom of what creates your pain. This way you understand how to treat, or manage your symptoms in a more productive way.

Do you have a larger medical hospital or medical college that you can get to? Have you specifically asked your general doctor to refer you to a specialist?

I'm no Dr. and can't diagnose, but it sounds as if you have nerve pain, perhaps from neuropathy. A neurologist can evaluate an rule out different types of neuropathy via tests or skin biopsy.

The fact that you mention discomforts since childhood, brings me to Central Sensitization Syndrome (CSS). This is a chronic pain syndrome that can play unexplainable havoc throughout your body. Hence IBS, anxiety, nerve, joint, muscle pain, sensory issues. I have attached a video from the Mayo Clinic's Dr. Sletten explaining CSS:
https://youtu.be/8defN4iIbho
Will you please let me know your thoughts on the video? Please feel free to add more info about yourself so other members can offer their help.

@colorbug
Hello and welcome to the group!
I am so sorry for what you have been going through!
I wish I had some good advice, but I am going through some of the same things you are.
I suffered from back pain for many, many years.
I took shots, but they never worked until I found a doctor when I moved to Florida.
I got some relief for about 4 years and then it stopped.
By then, I had enough and decided to check with a neurosurgeon.
I am retired (currently 66 years old) and I had no quality of life, which is difficult to have when you are in 24/7/265 pain.
I found a FANTASTIC neurosurgeon.
My cervical and lumbar spine was a MESS!!!
I had 2 separate surgeries and after each, the pain in those areas were gone!
My surgeon picked the areas which were the worst and corrected them.
Sadly, about 1 1/2 yrs. after surgery, I noticed I could not raise my toes when my feet were flat on the floor and my ankles could not move from side to side. In addition, I noticed that one of the toes on my right foot was totally numb and did not move at all!
Apparently, I waited too long to have the surgery and developed lots of nerve damage.
Currently, I am having trouble walking.
My legs get tired and just stop working.
In addition, I have pain and pins and needles all over my body.
I went to a neurologist who SEEMED spot on!
He prescribed a medication (can't remember the name), but it could increase my anxiety and depression (which is under control with my current meds).
I called to talk with him but he NEVER returned my call.
I've been on Gabapentin before, but it messed with my memory and I didn't want to go on it again.
I went to see my neurosurgeon and got another prescription but it made me dizzy.
Finally, I got a response from a doctor who was covering for the neurologist who wanted me to up my anxiety meds.
It took me over 2 years to get it down to where it is today.
Next, I started with PT as the neurologist suggested.
They hurt me so much, but when I said something they told me they really couldn't do any less.
Now, I am suffering with pain, again.
Lastly, the neurologist wanted some MRIs.
The insurance company turned me down.
When I called to see if he would do anything, I was told he doesn't talk to the insurance companies and he'll see me at the next check up (which is 6 months away).
Called my neurosurgeon (again) and they ordered 3 MRIs.
I got turned down, but they called the insurance company and fought for it.
We won!!
I just had the 3 MRIs.
I go next month to see what is going on.
Don't give up and keep on searching.
Sometimes you have to kiss a few frogs before you find your prince (or princess).
Good luck!
Ronnie (GRANDMAr)

Sorry for the late response but I've actually gotten worse the last few weeks. Missing work now. But thanks for the reply. I'm in Joplin Missouri so there is nothing like Mayo around here.

This was very helpful. Have not heard of this but it sure does hit the nail on the head. I do have an appointment late November to have a nerve test done. Thank you for the information.

I can so relate to you. I've wondered about getting an MRI. But I do have an appointment for a nerve test late November. Just don't know if I can make it till then. Let me know what you find out. Thank you.

You're welcome! I'm glad you gained new knowledge and found the video helpful.

Best of luck with your nerve testing in November. Are you having both a nerve conduction study and an electromyography (EMG)?

Just an EMG as far as I know. Thanks again.

@colorbug
Hi!
Well I got my 3 MRIs and now I am waiting to see my neurosurgeon. I have lots of things going on and I'll have to decide what to do once I have my options (if there are any).
I wouldn't discount surgery, again.
I also went for 2 ultrasounds for my legs prescribed from a vascular doctor. According to him, my leg arteries are good, but a vein in each leg is transporting blood in the wrong direction and there is one block in one leg. He wants to do an ablation (burn the nerves). I've had them before on my back, neck and leg. Didn't help. So, I am going for a second opinion.
I had nerve tests way back and I definately had nerve damage.
The quest for an answer goes on.
If you can't make it to November, call and see if they can get you in earlier. If not, try another doctore.
Keep in touch!
Ronnie

Also, just have to mention that being in water is very helpful. Does anyone know why that is?