ugh, I sent you a long response with my whole mostly untold story so you could see just what kinds of hell the body can recover from. It wouldn't post. Poop! I will have to write it up again but am taking the kid to Sylvan now for algebra help.

[QUOTE=canagirl;1138519]Hey Canagirl,
I can understand your concern about eye problems having them myself, didn't the Optician give you any idea what is causing this thinning? Glaucoma or something else?
Also, what work do you do? Are you in danger of doing more damage to yourself? How do you cope, physically, with the pain at work?
That's a fair few questions, but I don't want you to miss information or push yourself so far that you suffer more.
Your family are suffering the Classic traumas of a family trying to come to terms with a member with this level of pain. Have you shared this, or any other on-line, support groups with any of them? Carers need support too. Therapy, Counselling, Church Groups… all are available and can help everyone.

Dave.

[QUOTE=EnglishDave;1138721]I asked what a thinning optic nerve is indicative of and she said the most common cause is glaucoma but there are other things. She said this may have something to do with my neuropathy. she is an ophthalmologist and said that this is out of her expertise and that she would refer me to a specialist and send her report to my neuro.

I sit for most of the day so I'm in no danger of physically hurting myself other than crushing nerves and making myself go numb when I sit, but how do I avoid that?

How do I cope with the pain at work? My job does provide some distraction so I am not focused on it. I just try to push it away as best I can. I end up taking lots of bathroom breaks so I can cry.

I shared a letter that I found online somebody wrote about their struggles with SFN with my husband this morning. He said it helped him understand a little more. Not that he didn't understand. He's been great. I feel guilty for ruining his life and being this person that is depressed, angry, crying, etc 24/7. I feel bad for ruining his chance at fatherhood. Instead of enjoying what should be the most wonderful time of his life. he spends his time trying to console me and encourage me to keep going, while working at his stressful job, all trying to create a healthy environment for our son.

[QUOTE=EnglishDave;1138721][QUOTE=canagirl;1138519]

Hey Canagirl,
I can understand your concern about eye problems having them myself,

Englishdave, what are your eye problems? are they due to the neuropathy or unrelated? I haven't heard of anyone else on here describing eye issues that's why it scared me so much,.

thanks, I appreciate all your support.

Canagirl,

I am glad your husband is supportive. My wife (we've been s couple 21 years this June) is amazing as well. My fatigue is horrendous of late and beyond working and some family time, I have no energy left.

She does 90% of the chores at this point. I try and do laundry, the occasional load of dishes and cooking the odd meal. We make it work, rather she does. I still have a lot of hard moments. I throw an "I'm sorry", every once in awhile.

One day during an extensive apology for the state of my health she stopped me, said "in sickness and in health" and went back about her business.

She is amazing. I'm aware of my good fortune.

I have been working on breathing steady when things kick up. It isn't world beating, but I think it could end up mildly effective.

My best,

Jon

Canagirl, some thoughts in response to this post and the gabapentin one...

First - This is NOT your fault. Is there any way you could have known about the outcome of the treatments you undertook? No! You were trying to help yourself.

I have struggled with this very thing. My nightmare might have been avoided if I had chosen a different doctor first time a round or said no. I ended up with serial surgeries to fix the damage. It is very difficult to let go of the feeling that you could have, should have known. I perseverated all the time about what might have happened differently. It took counseling to get me off that unhelpful thought pattern.

Second - the body has an amazing capacity for healing. You are still in the looking for answers phase. Hopefully info will be forthcoming that will give your treatment better direciton and chance of success. Nerves can recover over time from injury. I don't have PN but I DO know nerve pain. Here is what I am healing from.

*Late 12/2012 - developed plantar fasciitis, saw podiatrist, got undiluted kenalog injection at fascial insertion at heel (didn't know that was a bad place for it or a bad steroid choice)
*01/2013 - ruptured my plantar fascia at the insertion, kenalog ate a hole in it. Went around 30+ days with rupture because no one believed a woman my size blew her fascia out. finally got MRI and there it was - big hole
03/2013 went in boot and on crutches 2 months without progress, fascia healed all around the hole, ongoing swelling caused a lot of nerve issues including fasiculations and buzzing that eventually spread to my entire left side
*04/2013 developed fibroma (benign tumor) at mid arch where my fascia went nuts over-healing in the wrong place
*06/2013 procedure to address rupture, they went in sideways via the ankle/heel area and partially tore my calcaneal branch without realizing it. Horrid pain! Stinging, shooting, burning, electric, foot made of broken glass pain. My surgeon said procedure was a "success". I whimpered on the couch for nine months.
*03/2014 - 3.5 hour nerve repair surgery by plastic surgeon (imperfect due to nature of laceration) and removal of fibroma. Much relief, little pain, no CRPS. Doing great for 4 weeks till remaining fibroma cells woke up and went aggro growing exponentially and pressing on nerves of my foot till I could feel nothing past the arch.
*06/2014 - fibroma is so aggresive it is re-removed with massive incision. Within 3 weeks I have symptoms of CRPS. So fun! Fibroma starts to re-grow Yes - again!
*09 and 11/2014 - two rounds of week long radiation treatment right over the nerves in my arch. Despite CRPs symptoms radiation oncology feels I will be crippled if we allow fibroma to keep growing.

My nerves have been through nine kinds of Hell!

April 2015 - after much gnashing of teeth, endless hours in the pool, hours of therapy all kinds, a gillion vitamins and several prescriptions oh plus feeling life wasn't worth living...I am much, much better. I would not have believed it possible two years ago or even 6 months ago but I am healing. The pain from CRPS and remaining pain from my nerve injury has greatly diminished. The fibroma is small and hopefully stays asleep. I may always have a degree of pain and deficit but it is SO, SO Much Better than it was! I take very little medication anymore. It is not perfect but with adaptations (no super long walks for me ) it is livable. The healing has taken a 2+ year journey but it is here. I walk a mile pretty much every day. Thought I would end up living on my scooter but I was wrong.

I know my situation is different from yours, but you can see where it would've seemed my nerves were shot. Ha-ha... They can improve. Don't give up on healing! Get your nerves calmed down on the gabapentin and Get in the pool if you can. Motion and muscle use that isn't painful helps strength and nerve re-organization. Go to a tertiary/academic referral center if you need. They see all the off the wall stuff and is where I ended up when no one in Austin could help me. It is worth the drive to get good care. Hang in there, you CAN do this. We are all hoping for your health and restoration. Keep up the fight!

Sending Healing Love, Littlepaw

I know what you mean about the reading. I couldn't read from Sept-January. I was dizzy, had cognitive problems, and there missing spots all over the place. That part is improving.

Wow, that's a long story of pain. I feel for u. I am so happy ur pain is improving and u r getting better. That's wonderful to hear. Yes, it's truly amazing how the body can heal. I try to keep hope but every week brings new symptoms.

I stopped reading as well. It's made me a fan of podcasts and audiobooks. I'm just too dizzy to concentrate and my eyes hurt.