Not sure which way to turn and what I am feeling
 

So, I was diagnosed with Idiopathic PN about 5 yrs ago. So far have dealt with the burning feet on and off, the constant nerve activity, and coldness. I also have always felt this is internally as feel vibes in my arms and body. I have had more tingling up my legs with all this.

Any way, I have a bad back and would go into spasm. I was getting deep tissue massages and chiro used the flexion/distraction table. Also did PT.
Well I went to another PT who talks about your body and movement and such and how you create some of the issues I guess. Unfortunately, I let him mess with my neck. Then to seek relief had deep tissue on my neck (an adjustment) which I did not want with the activator and stretching. I have been in burning pain ever since. Can neuropathy spread that quickly to your skull -around my neck- I also have upper back burning pain..not to mention I get little hot jabs of pain in many places now. I also have burning in my arms, back of legs, and tops of hands. It comes and goes.

What is so upsetting is I knew I could be in for this as had a bad experience before-and now don't know how to get relief. I can't take the drugs to help with the burning as too sedative. I cut amitrypline into quarters and still could not function. 50mg of Lyrica took 2 days to clear my system. The dr wants me to have an MRI on the neck to see if herniated a disk but then she said they would do spinal injections. I have had one before and scared to do this again after hearing what could be lifetime of pain if done wrong. My pain comes and goes. I know stress is not helping but I can't find a way out knowing I did this to myself. I wanted to get my back in better shape for a long flight for my daughter's wedding. Oh I have had my vertigo come back-but thank goodness did not last as yet. Migraine related I hope. What does anyone do that can't tolerate these meds ? I don't know how many on this forum take massive amts of drugs and don't want to stay in bed all day.
I am going to start using more of the supplements... not sure if should go to a pain dr. I did for the low back and she handed me drugs and then said she could do injections. That is what brought me to finding another way Now wish I had just dealt with the back spasms.

a bit of extra info on my last post
 

I did have a reaction the day after the massage with tingling upper spine and burning spreading even into my face. I also don't know if this means anything but have had tingling for some time down the back of my legs to my knees. I can touch say my neck or head and have a wave of sensation run down my legs. This one PT said this is the way my muscles are communicating. Now with having this hot burn in various places along with constant burning I don't know if something has been set off throughout now. How does neuropathy typically move into other places? I even feel burn sensation now with clothing. I had a small fiber test 2 yrs ago and found it to be useless.

Welcome to NeuroTalk.

I do not know if this pertains to you....but I had a shingles attack (pain only) following a massage.

I had had shingles a few years before in my neck and upper right arm, and a massage really triggered all the pain there all over again! I will never have another massage again!

Had deep tissue message a few years ago on my back. Did not want it but they did it anyway without my really knowing it. It did not hurt while it was being done but afterwards I could not sit decently for about three weeks. I've never been able to sit in my recliner (reclined) as I could before. All I had wanted was ultra sound heat as I had done many times before by my trusted chiropractor. But this was a new guy and he did deep tissue message after the ultrasound heat. Really stupid for him to do that. I've never been back since. My old chiropractor who understood had retired and so that is why I saw a new one.

I never have or will let anybody do anything with my neck.

Do those with PN feel the constant vibration in other parts of the body?
I have so much tingling everywhere.. on top of that. What other drugs can cut the pain besides the anti-depressants that just sedate me too much-even taking at night?
My skin has become very sensitive as well. Can PN spread that fast to other places you did not have it in before?


Thanks for the replies

Hi IllPn, Welcome.

I don't know if I have any answers for you—maybe some observations that may lead you to some answers.

One of the most important things I've learned here is that everyone is different, and with PN having over 100 possible causes, peoples' symptoms, responses to various treatments, meds, and supplements can be different as well. There are also psychological aspects; being aware of them, and that they happen to most/all of us (as well as physical symptoms) can help us cope with PN.

Because there are so many causes and types of neuropathy, some can spread more quickly than others.

Because of some of the symptoms and experiences you describe,, I think you may have more than just PN going on—or perhaps multiple causes.

The fact that some of your symptoms come and go—and are not constant—is encouraging; that damage may be treatable or even reversible to some extent.

I think an MRI is a good idea to find out if anything—and what—is going on with your spine. As far as the injections, I don't know if what you are describing is diagnostic or therapeutic, but you have the right to refuse any treatments. If they are merely a contrast agent for the MRI, those are very well tolerated by most patients, with a very low frequency of adverse reactions. Some agents can be administered orally instead of intravenously.

MRI contrast agent

MRI Contrast Agents and Adverse Reactions

I think supplements are a good idea, but best done adding one at a time (rather than a "shotgun approach") to determine what works and what doesn't. I take a low dose (10 mg.) of amitriptyline at night to help me sleep, but other than that, control my PN symptoms with supplements (R-Lipoic Acid, B-12, B-5, in particular; other folks here use what works for them).

It may take a while to absorb all the information available on this site, and while you will have many more questions as you learn, many of the answers can be found too. For example, you ask about other meds that can address the pain besides antidepressants. You mentioned Lyrica, so you may already know about antiseizure meds, but here is a thread about DRUGS (RX) ~~ Used for Treating Peripheral Neuropathy: and much more can be found in the PN Tips, Resources, Supplements & Other Treatments sub-forum. I would also encourage you to make use of google (e.g. medications for peripheral neuropathy) and other resources here, in the sub-forum, and elsewhere. Google is our friend. ;)

Again welcome, and best wishes.

Doc

This sudden onset--
 

--after a massage/manipulation does not seem like a spread of systemic peripheral neuropathy to me; it sounds like something additional, such as a sudden disc herniation or foraminal narrowing due to the mechanical forces. In other words, it sounds spinal and traumatic.

So,I would agree that imaging of the neck and probably also the thoracic/lumbar spine would be a good idea. (It's probably a good idea anyway in cases of wide-ranging neurologic symptoms, as the symptoms caused by spinal nerve impingement and those caused by more system conditions that affect nerves can be exactly the same.)

hello
I agree so much with Dr. Smith and Glentaj. You should have the spinal MRI. From your post Illpn I understand that the doctor had first suggested MRI, and then said, oh no she would do a injection????
She probably ment an Epidural Steroid Injection that is often used as symptom control often for herniated dics.
But I do not understand how your doctor could mix up???She needs to do an MRI first, then assess the ned for an epidural steroid injection

And, do you have a good orthopedic doctor or a Spinal/ortho doctor?
And, which doctor has been ordering the PT ? Did I see that you had used a Chiropractor? Perhaps I do not remember your post corectly. But I would not dare to go to a Chiropractor with the kind of symptoms you have.
I would suggest you assess, and see if you are satisfied with your Primary doctor or if you need another. But perhaps you could be referred to a oortho/ or a spinal/orth doctor
All the best

One should always have MRI before any spinal injections!

People can have hemangiomas in the spinal area (these are congenital malformations of blood vessels). They are pretty common. If a needle pierces one of these you can have a hemorrhage into the spinal cord. I know a woman who was having a neck epidural and this happened and she almost died!
She survived with an emergency surgery, but was left with severe chronic pain, as a result.