Chronic disease and depression
 

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 :grouphug:

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. :D

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

Hey Joanna :) (very pretty name)
 

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...

Hi Joanna,

I'm sure we can all relate to your feelings of despair on some level, as can everyone else with a chronic condition.

The one thing I try to keep in mind is that at any point in time, there could be a medical breakthrough that will help. Maybe one of these sodium channel drugs in the pipeline will bring us the relief we need. Maybe some major discovery will be made that will identify the root cause of SFN in a good hunk of idiopathic people. Maybe some extremely helpful supplement will be discovered like the one I heard about yesterday for skin cancer. (B3)

One thing is for sure...stay active on these boards so you have all these ears and eyes watching for the latest. I wouldn't trust doctors to be proactive.

Thanks to everyone who replied to my message, it was a nice comfort to read all of your responses. :-)

Hi Joanna,

I can, as well as many on here, relate to your depression very much so.

Actually, you are one of the first people on here to mention skin changes. I have those in spades. It happened right at the same time as the neuropathy started (only small fiber for me thus far)...and yes, seemingly overnight. I'm fair skinned anyway, but now my skin is starting to look like a road map from all the veins showing through!

It is also very thin. I fear how bad this aspect will get. It looks like I have almost no skin around my ankles-creepy. I feel if I cut myself, it would go right to the bone.

One thing I do that helps is lotioning. I know its hard, because me personally, I'd rather hide myself under tons of clothes and ignore what's happening-but that does nothing but hurt me in the end. So instead, I started making my own lotions and body butters, and became hell bent on caring for my "new" skin. Beauty comes in all different packages, and I try to remember that, while I grieve for how I used to be used to look.

I find it best to not dwell on the past or think too much of the future (unless I am indulging in some full-on wallowing complete with tears, bad movies, blankets, etc), because it only stirs up depression for the past, and anxiety for the future.

Happiness can still be found, but you're still adjusting. Try to take each day as it comes. Acceptance isn't easy, and your suffering is real, but a good life is still possible.

Your description of a road map fits my legs perfectly. I've always seen some veins and even had a vericose vein on bother legs but I can see blue "roads" All over my legs. This was not the case before. I didn't realize it might have something to do with neuropathy. Is this common? Just wondering if my previous vein problems are naturally getting worse or if this is par for the course with neuropathy? Does it indicate anything harmful? Can anyone upload pics ? I am horrible with technology and couldn't figure how to upload pics despite trying to follow the directions.

Thankyou :-). Your situation seems similar to mine. Thin skin with veins showing through everywhere has become quite the norm now and was actually one of the first things I noticed before the pain started.
I think you are right about trying to take care of it, I now use e45 cream and do light leg massage with it. I did spend time under clothes not looking but now have accepted that those changes are real. It hit home how much when I wounded my ankle so badly with a razor cut.
The changes in my physical appearance have hit me as hard as the pain and worry issues regarding mobility, employability etc. I know that might seem shallow but I was happy with getting older and ageing, not having it accelerated overnight so dramatically at 35. I am starting to place more emphasis on everything other than appearance and trying to find a way of letting that all go. I think the pain and health issues make me feel really old themselves even if hadn't impacted appearance. I feel hopeful that I will adjust as time goes on :-)
Thanks again all for replies

Oh yes, the skin changes are terrible. Skin is thin and sometimes red. I get a rash on the both sides of my face that travels around given the day. I don't have to shave me legs much anymore - maybe once per week. This disease is the worst...

I am a little late jumping in here but will second many of the fine sentiments herein. It is important to honor your loss. We cannot sweep away what has happened to us and the adjustment will take time and tenacity. It is okay to feel sad, to gnash your teeth and cry and rage. But you will move forward and the sadness will lessen, even though it may hit you again sometimes out of the blue. It DOES lessen. Feel what you need to in order to honor your own process. No one can tell you how best to do this. But I will say to maintain your resolution to move forward no matter dark the times. Do not let this beat you or bog you down. You are a Mom and we all know Moms can do anything.

By all means, if your sadness becomes too heavy, ask for help with it. When we are over burdened it is difficult to see the way out and to see where we are making things harder on ourselves. There are therapists out there who specialize in chronic illness and pain.

I say to hell with people who don't like scars. I am proud of mine. It is hideous and a badge of courage. It is a reminder every day that I am stronger than I look and have reserves fitting a warrior. That said in circumstances where I wish to camouflage it and the skin changes from CRPS, I feel most fabulous and artistic in a long knit skirt with a colorful pattern. I was the queen of the cute skirt before my surgeries and still am. Just a little longer sometimes. I found getting back more to my old mode of dress just makes me feel more me. It is worth the effort to re-invent yourself a little with accommodations for the new you.

Never give up on the potential for healing and never give up taking care of yourself. As Enna says, keep up the fight!

Sending Healing Love, Littlepaw :hug:

There is nothing shallow about it :) you're allowed to grieve for the way you used to look. I have been doing the same, but I have also been trying to slowwwlllly embrace the new me. My husband helps, by telling me how soft my skin is haha and that he loves pale women and thinks the veins are cool looking :) you have to be able to grieve and follow that up with acceptance and eventually love for the new you...but it sounds like you have the right idea, and you'll get there :)