Hi, I just saw this now. Oops.
I have tried everything you mentioned!! ( capsiacin cream,magnesium oil,on lyrica)
I was on instant release oxycodone. Now I'm only on the patch and yesterday all that they would give me is clonidine for withdrawals. At my pain clinic they prescribe minimal narcotics. They feel that you should find other ways to deal with any breakthrough pain.
Horrible huh?? However...I am ready to get my mind back again. I feel very dumb..and clouded. Quite sick often..can't explain it. Just not ME


I feel OK today.


It seems

Hi there, I feel your pain, trust me. I am also dealing with burning pain (nerves) and I have found that the least xr-mri-ct scans you have, the better. When I went off the painkillers it was hell for few days (oversensing) hell on earth.
However once the postwithdrawal symptoms receded, I started to feel much better (emotionally, mentally) the pain is back to being very bad however, I have found that a combo of
Voltaren with 100% lavender lotion immediatly eases the nerve pain and the burning sensations.
The problem with voltaren is that it can be mean on your stomack even if is topically used.
As a result, avoid drinking coffe, alcohol and any other irritants while on this treatment..
YOU will be able to sleep and to feel better (less is more, no more meds, they make you sicker) of course talk to your doctor to wind off painkillers, is not impossible is more the fear of people, use over the counter tylenol back pain while on withdrawals and maelox and you will be fine.
it is better to feel the pain but be sober and foggyless during the day, then feeling the pain and feeling like dead walking. I hope this helps!

I totally feel your pain. I have been disabled since I was 24 and I am now 54. I just went through the most terrifying experience of my life. I realized I was having substantial blackouts. Periods of confusion got so bad that I no longer recognized my own name. My verbal output was totally scrambled although in my head I knew the answser I wanted to give it was not what would come out my mouth.

I have CFS, ADD, hypothyroidism, dysthymic disorder, chronic major depressive disorder, general anxiety disorder and of course, B12 deficiency and pernicious anemia which apparently as it has not been treated iin 10 years because of my insurance company denying treatment this is what caused my recent experience and possibly everything else.

At the ER they did a CT scan that proved no dementia or early onset Alzheimers but it took weeks in the hospital and weeks of out patient and advocating for myself to get my B12 levels tested. They are barely over 100. Now that I have an answer I finally have hope but I am here to find out what appropriate treatment should be to insure that I will get what I need to get well.

For me, faith has been what has gotten me thru. During that time that I did not even know my own name and thought it was 1916 I was writing on my daily forms give me B12 shots. Only God could have provided that information when I was in such a condition. It was not done and when I was released I continued to do my own research and got tested. Have faith. Get tested. Be persistent. You do not deserve to be feeling that way at your age, nor that way at mine for that matter.

I pray that you will find the answers and get the help that you need. Do not let the depression eat you alive and do not take no for an answer. Seek doctors that will listen to you and work with you. No one knows your own body like you do. I had to see several doctors over several years to get the tests I needed as I do not present normally. I also do not react normally to many medications. I just found this board and I hope to find some answers here. But, please do not give up. God has a purpose for all of us and you can get well. It just may take a lot of work and a lot of prayer and a lot of persistence and good doctoring.

Sorry about your condition. I have two friends who are over 50 that are on disability. They both have severe pain issues, however. Both their doctors could only get them approved by promoting mental health issues. One with extreme anxiety and paranoia, the other with a learning disability and poor socialization skills. The second told me the other day that though he has severe back injuries from doing heavy labor. His doctor said that wasn't going to get him anywhere without the other. Sad to say but if you have to pull the crazy card, we won't judge you here.

Paula J-what a heart wrenching story. I'm so sorry. I am, however happy that you gave faith to hold onto and which led you to discover what ails you.
It is such a struggle to find answers. A LOT of trial and error. 2.5 years and counting for me.
Thanks for the encouragement.
I am sitting down with a pastor tomorrow who may help clarify my questions on God.
I lost all faith a long time ago. Praying never helped in any way.
I have 2 close friends in my life who want me to try to find God and have a relationship with him. We will see. I am skeptical.

Still fighting: I have to now wait at least 6 months for a court date to plead my case to the social benefits tribunal. Its infuriating that during this horrifying time, I have zero financial assistance. It is increasingly difficult in Ontario to obtain disability. Even with a hand written letter from my pain doctor, commenting on the neuropathy, cael tunnel, and psychiatric illnesses, they still refused me.
I have considered a psychiatric hospital countless times, but am afraid of many aspects.
I am tied into a lease at my apartment, for one. I truly am stuck.

The fentanyl has stolen my energy completely. I have hot flashes all day, as well as headaches. On top of residual pain and of course depression, anxiety, OCD, bpd..etc. its unbelievably difficult. Every minute of the day.

Thanks for reading...

I hear you. I get it. You aren't alone. I quit smoking and hit my weight loss goal of 40 pounds last August and then developed SFPN in September. I felt robbed and cheated. Why did I do all this good stuff for myself to have this happen? You are not alone!!

My depression truly knocked me on my butt when I went off the Neurontin. I scared the heck out of my MD. I went on Cymbalta. It took about 2 weeks, but I am better. I have hope. Re: the ice packs. Do you have access to a swimming pool? I get total relief in the water and positive exercise too. I forget my illness when swimming. Maybe this can help you too. Also, yes, its pricey, but I use a cooling pad to sleep from a company called chili technology. Bless whomever invented this. It helps with my back burning.

Love yourself. Respect yourself. Be kind to yourself.

Hi Suzie (my moms name ) :-)
I have ocd as well, so I can't use public pools because I find them akin to large toilets or bathtubs. :/

I'm sorry that you had the misfortune of becoming ill after taking strides towards a healthier lifestyle. Life can be unfair and bad things happen to good people

I've tried over 10 anti depressants since my teens and none have worked well enough for me to continue.
Things are harder when you are predisposed or develop depression with the neuropathy. Its an uphill battle it seems.
I'm grateful for this support forum. Its a gift.
Thanks for your comment and support.