1. < Neuropathy

Seeking support, new to this nightmare

Posted by ehope @ehope, Feb 22 7:50am

Hi All,
Healthy active and 65. I walk (ed) 5 miles a day, eat well, blah blah blah! Woke up in the middle of the night mid December and have had 24/7 pain, redness, burning, numbness ever since.
The podiatrist said stress fractures so I am in a boot, however, it has not changed a thing and lack of sleep is getting to me. I am an upbeat optimistic human, however, WHAT IS HAPPENING!!! I am scheduled for blood work early next week. Seeking support as I have no diagnosis and am staying in the mindset with LOTS of prayer and meditation that this will resolve. My best to all of you. Thank you for listening to me rant! Hope

Interested in more discussions like this? Go to the Neuropathy Support Group.

dbchip | @dbchip | Mar 3 7:51am
In reply to @suzirtist "I swear, I have lost faith in anyone called a "specialist"!! I have spent so much..." + (show)
@suzirtist

I swear, I have lost faith in anyone called a "specialist"!!
I have spent so much money to hear "No one knows what causes Neuropathy, and no one can cure it"

Jump to this post

I have idiopathic PN in my feet. Was diagnosed two years ago. I spent a lot of time and money trying to find out what was causing it. Finally I accepted I had it and grew to understand that finding a cause won’t change or cure my Neuropathy. Now I am working on a plan to reduce my level of foot pain so I can have a decent quality of life. I am in a great support group at Western Neuropathy Association and trying to be patient on finding what works best for me. Hope you feel well soon.

REPLY
martame | @martame | Mar 3 8:37am
In reply to @caban "I have an unusual diagnosed cause .. a foot operation which activated my high immune system..." + (show)
@caban

I have an unusual diagnosed cause .. a foot operation which activated my high immune system and I am … hopefully recovering slowly. My immune system went in to protect my feet but instead starting killing the nerves in my feet. So possibly the trauma of your foot damage caused the same issue as me as trauma of an op can do this. Just a thought worth investigating. Thinking of you. Xxx

Jump to this post

Hello
I had the exact same experience! Had foot surgery and that started my nightmare of neuropathy. Before that i had very mild symptoms and did not even know I had neuropathy or even what it was.
Since my surgery a year and a half ago I have improved slightly and the
amitriptyline has helped.

REPLY
1 reply
caban | @caban | Mar 3 1:58pm
In reply to @martame "Hello I had the exact same experience! Had foot surgery and that started my nightmare of..." + (show)
@martame

Hello
I had the exact same experience! Had foot surgery and that started my nightmare of neuropathy. Before that i had very mild symptoms and did not even know I had neuropathy or even what it was.
Since my surgery a year and a half ago I have improved slightly and the
amitriptyline has helped.

Jump to this post

My sensory neuropathy was caused by my strong immune system going to my feet to protect them after the trauma of the foot op. However instead it started attacking my nerves and that’s why I have the damaged feet. It’s rare and unlucky. Maybe the same with you. Suggest this to your doctor. A blood analysis test may prove this.

REPLY
celia16 | @celia16 | Mar 3 5:01pm

What kind of foot surgeries did you have?

REPLY
brotherchuckles80 | @brotherchuckles80 | Mar 3 6:05pm
In reply to @heisenberg34 "How well I remember 8 years ago when, after a ski fall, a cascade of pain..." + (show)
@heisenberg34

How well I remember 8 years ago when, after a ski fall, a cascade of pain gushed into my lower body. This was six months after the fall, and I thought I had pretty well healed up. I was out weed-wacking, then, after I came back inside is when all the pain erupted. It was like nothing I had ever experienced. I tried to get an immediate appointment with my PCP. Of course, we all know how that usually goes. The point is, It has been 8 years, and I have been throught so many procedures, seen more docs than I can hardly remember. Believe it or not, I have actually come to live with and accept this pain. Not that I am happy about it, but I am at the mercy of pain specialists who give me ten or fifteen minutes and then tell me to make another appointment in six to eight weeks. I have come an understanding and partial acceptance of this pain (at age 76). I will keep searching for somone who can correctly diagnose my pain and prescribe the correct treatment. Unless the Lord calls me home first. Wish you well on your own pain journey.

Jump to this post

May I suggest three ideas:
First, have an MRI done, if you have not had one.
Second, go to a Neurologisti if you have not, and have an EMG done
Third, with both records in hand, find a Pain Management Doctor.
I have had a SCS in my Lumbar for approximately two years and I m 100% pain free in that area. From time to time, I receive injections and ablations in my Thorax and Cervix. Typically, they free me from pain in those areas from 6-8 months.
I hope this will help you. BTW, I am 80, so I had my SCS implant when I wa 70.

REPLY
1 reply
brotherchuckles80 | @brotherchuckles80 | Mar 3 6:09pm
In reply to @suzirtist "I swear, I have lost faith in anyone called a "specialist"!! I have spent so much..." + (show)
@suzirtist

I swear, I have lost faith in anyone called a "specialist"!!
I have spent so much money to hear "No one knows what causes Neuropathy, and no one can cure it"

Jump to this post

Sorry to say, there is no cure for it. There are several reasons for the cause of it. Google the word and you will discover that. Lastly, I would look for a Pain Management Group. Perhaps the Peripheral Neuropathy Organization can refer you to one in your area. Or again Google the search, which is where I found mine. I hope that I have encouraged you. God bless you

REPLY
ehope | @ehope | Mar 3 6:44pm

Thanks everyone, I am in the research phase with testing and riling things out. I do not have a concrete diagnosis, therefore I am not at the point of accepting this as the new normal. Today it is this, I do t know what tomorrow will bring! Optimistic: ) while in incredible pain!

REPLY
heisenberg34 | @heisenberg34 | Mar 4 8:14am

If any of us going through the kinds of pain and suffering that I have observed here on this blog, and were professional football players, say Tom Brady (I know, he's retired now), there would be teams of specialists working round the clock to get to the heart of the issue and make sure that it was corrected ASAP. Well. we're not pro football players and don't have that luxury. We have to take the hand that's been given us and pray the God is in control.

REPLY
heisenberg34 | @heisenberg34 | Mar 4 8:57am
In reply to @brotherchuckles80 "May I suggest three ideas: First, have an MRI done, if you have not had one...." + (show)
@brotherchuckles80

May I suggest three ideas:
First, have an MRI done, if you have not had one.
Second, go to a Neurologisti if you have not, and have an EMG done
Third, with both records in hand, find a Pain Management Doctor.
I have had a SCS in my Lumbar for approximately two years and I m 100% pain free in that area. From time to time, I receive injections and ablations in my Thorax and Cervix. Typically, they free me from pain in those areas from 6-8 months.
I hope this will help you. BTW, I am 80, so I had my SCS implant when I wa 70.

Jump to this post

Thanks. Have had all the above done and then some. It's a mystery that has baffled pain specialists (7 or 8) neurologist, Orthopedic surgeons (4 or 5), neurosurgeons ((2(). No MRI can be taken as of today due to a new SCS being implanted two years ago that has an adapter which made it MRI non-friendly. Going to a neurosurgeon on Wednesday to see about getting this current SCS with leads and paddle removed. Then I can finally have an MRI to help reveal what's going on with my back. Appreciate your response.

REPLY
View MoreView Less
Please sign in or register to post a reply.