Hi all, Im a regular in the Peripheral Neuropathy group but am struggling with severe anxiety and overwhelming sadness over all of this so have come here to say hi and will probably depress you all even more in the process

I have full body small fibre neuropathy, so it is in every part of my body causing awful pain, changes of sensation and all the horrible horrible feelings that come with this. I am on max gabapentin for it. I also have an autoimmune arthritis, uveitus and awful tinnitus (relates to nerve damage). I have had a low level depression over this for the last 2 years but now and again it hits me really hard and I feel extreme despair. This has got so bad I sometimes struggle to function through the day. This has happened this week. Alongside the awful pain and discomfort I am really struggling with the changes to my appearance - my legs, bum and hips have lost all bulk due to muscle atrophy and the skin has changed significantly and continues to do so. I have to keep trying new clothes to disguise it and I find the continual adapting to change that I dont want to see happening exhausting and exceptionally depressing.

Do members on this group have a great deal of emotional support? Does it help to deal with the health issues and subsequent depression better? I am a lone parent to a 3 year old boy. He is my only reason for keeping on top of day to day life and I do live through him and try savour the things we do together. I have to be very strong to hide this from him and he can be a challenging child behaviourally as well. This adds to feelings of isolation.

I have spent this week thinking about people who go to Dignitas (just because of feeling so low) and I actually felt pangs of relief thinking. I won't do this as I cannot and don't want to leave my son who needs me. But, I sometimes feel like Im trapped dealing with this for years because I have to be here for my son and can't leave him.

I am 36 and wish desperately beyond words that I was in my late 60's. I dont want to die immediately but I wish so much that my son was grown and happy and I had say 5 years left. I'd feel so happy knowing that.

I would love companionship, emotional support from a caring parner who placed minimal demands on me and accepted what comes with this condition. Someone who wanted to take care of me and accept I dont have much zest to do the things others my age do. This is virtually impossible and too much to ask I know. I use every ounce I have to hide this from my son and look after him. I couldn't find the strength to put on a facade for a partner but I am feeling so so isolated and alone and afraid and just want to feel a bit safer and secure if that makes sense.

I feel extreme grief over the life I had. I felt young, I loved going out, dancing, music, great career. Hopes of a lovely family life. I feel extreme grief and it is so overwhelming that I would give anything for my past life to be erased from my memory.


I hope I havent made you all feel more depressed!

Sorry to hear you are struggling so much and so young. I hope you are taking the supplements those on the PN group talk so much about. Also Vit D, grape seed extract could help you a lot and just in general, and we're talking about iodine a lot. This is what I can offer to try to help.

Hello, you have an awful lot going on, it is no wonder you feel so low. Welcome to the group here, I believe we give each other lots of hope, support and comfort. The more you contribute the more you get back has been my experience.

You do seem to have an awful lot going on. There is a lot of support from the other members here. It can take a while for responses to come in sometimes, but the help is always very supportive.

Have you tried speaking with your neurologist or PM about a recommendation for a pain therapists of some sort? It has not helped relieve any of my pain but it has helped to have someone there to speak with that can offer their support with not just depression related to dealing with a chronic pain disorder, but many of the issues that I have had a hard time dealing with in my life.

Hi Joanna

Your despair about your condition is something many of us can relate to. This forum is one place to get caring support but I sense that you would like to have more one to one contact and support and to share your experience with someone who knows what you're going through.

I'm don't know what part of South UK you are in but here's a link to a Chronic Pain Support Group in Suffolk. (Run by patients for patients)

http://www.chronicpainsupportgroup.c...x.php/meetings

Even if they are not near you maybe you can contact them and they can tell you if there is a group (or maybe an individual member) nearer to you.

I understand your son is very important to you but in order to continue being strong for him it's essential you take some time just for yourself to recharge your own batteries. If you're able to put in place some sort of occasional care for him (family or friends maybe?) and allow yourself time to just do whatever you need to sustain your own well-being.

Take care - we're here whenever you need to vent.

Hi all, thankyou so much for your lovely replies. Just reading these has made me feel less alone

I have a fear of losing my son so end up trying to keep him close. I think this isn't good for him always as I do so much with him but I struggle to keep on top of it all. Sadly, without him, I end up feeling depressed and lonely. But, I want him to have a good life. He does see his dad often and that is great for him and gives me a whole day and sometimes 2 days a week to myself. ALthough it can be depressing, it is better that way for both of us so I will continue to make the most of that. I really do hide it and no one would ever imagine this is how I feel.

Bluesfan, there was a perfect little group near me which I found online. When I contacted the group they explained it no longer met up as there weren't enough people to keep it going. I'm now doing more thorough research and will make contact with more using the link you provided. Thankyou so much.
Yes, it is wonderful to have even on line support but I desperately want closeness with people in person in one form or another. Ideally those who can relate. An in person support group like this would be perfect. I will keep looking for something like this.

Do all of you here have partners? How has it been for you/them having the addition of illness? I ask this because the person I am now is an absolute shadow of who I was when I was healthy. I could never keep up with any element of that life now. Plus I have a little one. But, it is the health and my ability I see as the barrier more than anything. A part of me also fels like I could not cope with a partner in any sense as they would put too much on me, would not understand and would not always 'see' what is going in and therefore lose patience, understanding etc.

It is strange that you happened to ask this. Here I am, sitting on the floor taking a break from packing. My husband and I can no longer get along at all. Everything that I have tried to relieve some of the tension between us ends up making things even worse. I spent the weekend away with my parents to come home to him high and looking for an argument. I decided to change moving out from next weekend to Wednesday.

There was support for a while, but that all faded away. I am now the one who is supposed to be there to take care of both of us while dealing with CRPS, depression and some rather bad anxiety attacks.

We have been struggling with our ups and downs in our relationship for a few years now. He has been overly controlling, and abusive in a verbal and psychological way for most of our relationship. I have let it go on for too long mostly because I am very shy, soft spoken, and have some self esteem issues. I was finally just pushed too far. Our separating was bound to happen sooner or later. I just don't like the way it is happening.

Not all relationships are like this though. I know if this were to happen to either of my parents, the other would be right there for them, taking care of every need for the other. It all depends on how strong the relationship is and what type of personality both partners have.

That must be exceptionally hard to deal with. I always had this idea that one would be sick and the other partner would take care of them and lessen the emotional burden / fear. If you are dealing with that I can see how it would be easier for you in some ways to be alone. The hard thing is these awful illnesses don't just ' go away' and then we are all better again.
I have read your recent posts. It sounds so tough. Your partner has his own issues he is working through and is directing all his huet and anger at you. Which is too much when you are dealing with crps.

Alaina,

I am happy that you have found the strength to leave and get away from a situation that was clearly untenable. You are the most important person in the equation. Those we love can be very cruel when they no longer can take from us a strength that is not theirs to demand.

Alaina,

You are in my thoughts and prayers as you go through this difficult time.

peace,
zinnia