Hi all,

I spent initial months with developing SFN and general illness due to autoimmunity living in hope this could be cured and I'd figure out how to stop it; that gave me great motivation. The SFN has continued to progress at a rapid rate to full body and I now realise I cant stop it and will be living with
this. As a result of this, along with a secondary autoimmune disease and the toll on my body physically over the last year or so, a pretty deep depression has set in. I'm 35 and feel afraid thinking about the fact I potentially have 40 more years or so of life. Id rather not feel this way and want to adapt to my new life.

As well as the continual pain problems I have lost significant confidence in my appearance as my leg and feet skin in particular (where SFN is worst) has become very thin, wrinkly, pale, blotchy and significantly aged overnight.
I shaved my legs last night and sliced through my ankle skin like butter. I have quite a big wound for a shaving cut and know its another one that will heal poorly due to the paper thin skin changes over the last year. I know this is going to get worse as well as pain problems and just cant bear to think about it.

About 18 months to 2 years ago I was young, felt good, attractive and wore nice clothes that I wanted to wear. I was outgoing, loved music and dressing nice etc and of course....had no pain. Now I look very fuddy duddy, my body has changed for the worse in appearance with weight loss, atrophy in my legs and SFN skin changes, I live in awful clothes, I wont go out much apart from play groups for my son and feel pretty isolated all round.

I know people can and do suffer worse and I spend most days reminding myself I could have no use of my body at all as some people do in life. Despite this, the shock and realisation of all the 'losses' have hit me very hard this past few weeks and Im struggling a great deal trying to cope with it. I just want to sleep or watch films all day. (I dont for my sons sake).

Have any of you been here and adapted through depression to find acceptance despite the losses and changes to your life?

Just as it took time to hit, for me it's taken a toll on the healing....I just try and like the new me...just a different, look so to speak...with my chronic pain I have some ugly scars...and I don't care so much about how it makes me look but how my 'friends' look at me...had one who asked me to wear long pants cuz she couldn't bare to look at my scar...; you are still you, just more, well special....winks..and on the days you really need to just relax you shouldn't feel guilty....keep up the fight

Hi Enna, you are always kind enough to reply, thank you :-). I am pretty shocked by what you told me about your 'friend'. I dont think I could remain friends with that person after that. That must have been really hurtful.

I cant relate to people anymore, unless they are affected by something like this so my friendships have changed. I really feel that people have distanced themselves from me lately as well. I never go out anymore so that doesnt help I hope I will start to like the person I am eventually again.

You should realize that this is a manageable condition and many people live pretty normal lives. Some improve significantly or even go into remission. I remind myself that there are tons of worse diseases out there, and that lots of people have some sort of health condition but still live happy lives. Just surround yourself with positivity and look for the good things in life. I know it's easier said than done. Hang in there

Hi Joanna,
I was 28 when I crushed the vertebrae in my neck and my rapid spiral downhill started, although I had Anxiety, Depression and other spinal issues before that. It is not fair when you feel that you have been made old before your time.

Chronic pain does change you, and it does change those around you - few sufferers retain all their friends I'm afraid.

But you do learn to 'Cope'. You are still getting out to your son's playgroup, so make yourself feel good and make a real effort to look nice when you go. Avoid razors, try other hair removal systems - carefully to start with. Little things will make a big difference.

If Depression takes hold it rarely goes away on it's own. A few Therapy sessions, maybe something more medically will be needed. There are techniques to strengthen the mind and help deal with the daily drudge.

Wishing you reduced pain.

Dave.

The roller coaster is real for me too, Joanna. Most recently it hit me hard when regular ole diabetic neuropathy was the pilliw I landed back in from shingles pain, but I was a hair away from sounding like a panicked C-3P0 for almost two months after.

I truly hope you find some balance. I am trying to keep a positive frame of mind, though sleep deprived, stiff, sore, and so on.

I get the impression you dealt with your friend much more graciously than I may have. My silver tongue. Hold onto that grace, I'm trying to work in that direction.

My best,

Jon

About 2 1/2 years ago I too was supermom, supergrammy and supermanager. Was laid off after 26 years at the same company, hysterectomy a month later, 3 weeks after that pathology report came back as rare uterine cancer and the chemo started in Dec 2012..........chemo ended March 2013 and by the first week of May I could not walk.....that's how my SFN started. Fast forward to now and I'm in pain mgmt., on BuTrans Patch 20 mcg/hr and Percocet 10-325 for the pain.

I did ok with depression during the chemo but as soon as the SFN started I lost it. I am now on Paxil 40 mg a day and it does help most of the time. The depression is worse on my bad days which is probably normal. During the decent times I have waves of sorrow wash over me......very hard to explain but it just physically 'hits' me and I just have to wait for it to stop.

I too had the frumpy feeling and at 52 still feel young at heart. The body is a different story. Prior to chemo I kept my hair hi-lighted but after I lost all my hair I just decided to let it go gray....but it didn't...it went salt & pepper....more pepper than salt and it wasn't very pretty. After a year I finally talked myself into getting my hair hi-lighted again and it was the BEST one thing I had done for myself. I've kept it up since then and feel a lot more confident when I look in the mirror every morning

Children are such a joy and I know you get much happiness from your son....hold that close to your heart and never let go.

My feet and legs are not in the shape yours are. I have very shiny skin on my feet. I'm sorry you are having to deal with that. I do wear what I want now. At one time I would never have worn shorts in public....now i don't care.....if they don't like it they sure don't have to look at me....lol......I once was the type of person that would never leave the house without my hair washed, dryed and my makeup on.......I very rarely wear makeup now. Chemo gave me that freedom and I like it.

Yes I believe all of us have gone through different levels of depression and still deal with it.

Please do whatever it takes, meditation, medicine, therapy, to get to a happier place where you can deal with this better and be in a good mental place.

I've been wanting to go see a therapist for over a year now but I don't drive unless I have to so it's just another place I would have to go where family would have to get off and take me. Maybe one day my feet will get to the point that the vibration of the car doesn't 'set' them off.

Hope some of this helps you....please keep us posted....we care about you !

Debi from Georgia

Hi JoannaP79,

Yes, many of us can relate to your feelings. Depression can be a side-effect of chronic pain for many of us.

There will always be people that are "better off" and "worse off" than each of us but that does not make YOUR situation any less important. A friend of mine could express what I would like to say to you much better than I can but I will give it a stab. No matter what others may experience that you perceive to be "worse off" does not negate nor lessen your pain and suffering.

Losing the abilities you had is a difficult adjustment, hard to deal with, and will cause depression. I think younger ages makes it that much harder.

Personally, I throw myself a little "pity party" every now and then and get that depression out of my system until the next time it creeps back into my life.

Being a "senior citizen", I did not have as big of an adjustment as someone young. I am not sure how much of my limitations are medical versus aging as they are now intertwined.

Been there, done that. My skin seemed to have turned very old almost overnight. Yep, I do have aged skin but it took a nose-dive. It was like it aged 20 years in just a few weeks time. The chunk I sliced out near my ankle took forever to heal.

We are here for you. NT helped me so much. I hope we can do the same for you.

Wishing you better days.

Hi Joanna,

It is very difficult for people to realize how you are feeling and how your condition affects you when they have not experienced it. This does make some former relationships difficult as there is a lack of understanding. Some people finally come around and understand your limitations, some won't. Even when you are unable to join in activities with friends, maybe they can adapt to your needs. If they desert you, they were just acquaintances, not true friends. You may find that family will resist the changes your life has taken also but it may just take some time for them to see the facts.

The changes in YOUR life are also changes your friends and family need to adjust to, also. Give them some time to adjust to the revised you. It took some time for my family to adjust to my revised life but once they did, they have been fully accepting of it.

Be patient with your friends and family as it is an adjustment for them as well as you.

Joanne I feel exactly word for word like u do. If it weren't for my 26 minth old son I don't know what I would be doing right now. I too wonder how I'm going to get through 40-60 years if this...