Posted , 7 users are following.
I have recently diagnosed with neuropathy, still trying to get
the medication right, but I am struggling to accept the loss of
my lovely active life. How have others come to terms with their
loss? I feel so desperately unhappy. Please help me.
2 likes, 14 replies
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christine_CRPS rebecca25796
Posted
Hi Rebecca
What u just wrote is actually what I would have wrote
I had a work accident 6 years ago involving my hand in drill got complex regional pain from a damaged nerve in left arm ,had little finger amputated but the burning pain has got worse !!!
I am seeing a new psychologist (5th one)
But nothing what we talking about sink in my head !! Can't remember what we talked about ???
Struggling to even to take the dog for a walk 😞
I am struggling with extreme fatigue !!!!
Depression anxiety etc
Like u where have our life gone ??
My hubby has been fanstatic but I feel such a let down to my family 😞
R u seeing a psychologist ?
What caused your neuropathy pain?
I am from the West Midlands
Take care
Gentle hugs
Christine CRPS uk
rebecca25796 christine_CRPS
Posted
Dear Christine,
Thank you for taking the time to reply to me.
My problem is my left ankle and lower leg.
Like you I have a lovely and supportive husband. I am grateful
for that. But I feel I can't tell him how sad I am and how hard this
is because he is doing his best.
I hope fellow sufferers will understand, and that their stories will
help me to accept the challenges that are ahead of me.
Thank you again,
Rebecca
elizabeth20203 rebecca25796
Posted
Hi Rebecca, Neuropathic pain is debilitating and nobody else can see or feel the pain your suffering, and unless someone else is suffering it's very difficullt for others to understand. Neuropathic pain is different for each sufferer and can affect different parts of the body. I myself suffer with my left knee, due to damaged nerves from lots of operations. My medication as kept it under control to a degree and i try not to let it get me down thou at times it's difficult.
Can i ask what part of your body is affected and what medication have you being prescribed. You seem quite young too. Have you got support from your family. My family don't understand what it is like for me and i have mobility problems too. I hope you can find some support on the forums.
Elizabeth.
rebecca25796 elizabeth20203
Posted
Hi Elizabeth,
Thank you for taking the time to reply to me. I have pain in my
left ankle and lower leg, which seems to have originated with a s
sprained ankle. I also have sciatica.
My husband is being very supportive, I am spending a lot of
time in bed right now and he has taken over running the house
and looking after our son. Our daughter is at university.
I am 51, and just can't believe I will never be strong and pain free
again. I know I should be grateful for my husband's support, and
that the doctors are doing their best to get my medication
to the right level. But I just feel loss and sadness.
I am trying not to let my husband know how hard this is.
He is doing his best to help me.
I hope that fellow sufferers will understand how hard this is and
maybe their stories of coping will help me to reconcile myself
to the challenges I have to face.
Thank you again,
Rebecca
elizabeth20203 rebecca25796
Posted
Hi Rebecca, You won't always feel like this, you will again feel able to cope. If you get the right medication to help ease the pain. It is important to do gentle exercises and keep as mobile as much as possible. Sciatica is also debilitating i know. I am glad you have a supportive husband and that must mean a lot to you. I live alone so i have to carry on ith my life as best i can and i have arthritis also. My left knee as been replaced twice aged 39 and 52, i have had arthritis sine aged 11 and i am now 60. I am also due to have my right knee replaced soon. The only help i get is a friend takes me shopping as i don't drive. It's hard not to feel sad and depressed. I try to keep busy by doing online free courses. Adult colouring books are relaxing. Read, do crosswords anything to help you relax. Distraction is a good way to help deal with pain. I hope you will feel able to cope in time.
Elizabeth.
frank92854 rebecca25796
Posted
Rebecca I'm so sorry that you are struggling with Peripheral Neurapathy. I was diagnosed with PN about 15 years ago.
At first it was only pain and numbness in my lower legs, feet and toes. At that time a prescription of cymbals was enough to calm my nerves.
In my case PN has spread to my arms and fingers.
Recently my neurologist told me the I had the worse case he had ever seen. That leads me to hope that other sufferers have much more hope than I for less pain.
I won't go into my symptoms because I hope that you will find healing and relief from your pain. You ask what to do about the losing the ability to have an active life and that you are unhappy. I can honestly say that my faith in God and my relationship with Jesus Christ has helped me to keep a positive outlook on life.
I'd like to be able to say that God has healed me of PN but I can't. What I can say is before I trusted Jesus for my life my attitude and outlook was horrible. I went through a terrible divorce and the loss of a job I had been at for over 25 years.
If I had the choice of having my old life without Christ I would turn it down in a second. I pray that you will find the answers you are looking for but I also pray that you will trust Jesus for your life going forward.
God bless you and keep you.
tricia75754 rebecca25796
Posted
Hi Rebecca, I understand and sympathize your story. I had a hard time adjusting to it also. I know my friends sympathize with me and will do limited activities with me, I just have to let them know when I'm done. also my husband is sympathetic to me, but a lot of times I just think that he's bored with me. He doesn't say that but I do, so just keep trying and going. and along this road you will discover that you'll have a new friends who sympathize with you and you will have deeper connections with people who really care. that's what I found out. good luck bye
rebecca25796 tricia75754
Posted
Good luck to you too.
Rebecca
vmocha04 rebecca25796
Posted
I have had diabetic neuropathy for a while now. I also suffer from anxiety and depression. My neuropathy is now at a point that I can't get pain relief. I have to depend on others alot more. I wish for the time when I could come and go when I wanted. I am happy to,be alive.
I will pray you feel better.
tricia75754 vmocha04
Posted
Hi there, I have anxiety and depression now too. I think it is physiological rather than psychological. Because once I started on correct meds, bam, it was gone. It took a good 4-5'months though going round with psychologists and neurologist.
I've developed new friendships with people. Some know my condition and some don't. For obvious reasons, some just don't understand. I'm finding, to limit myself and don't over do it works for me. Which is difficult, because when I feel good I want to do a million things. I don't feel that way all the time though. But I still make myself and get up and go and do something everyday. the struggle is real. Take care
MarieAzzi84 tricia75754
Posted
hi there I feel the same people always wandering what's next am I gonna cope when I'm older and still after 16 years I'm still in agonising pain but I try to carry on because I have to to xx
vmocha04 tricia75754
Posted
Thank you. I have another issue. I am in a wheelchair. The friends I used to have do not come by at all. My 21& 24 year old children are my friends and caretakers. I feel I am a burden to them.
I am verry happy I have a good relationship with GOD.
tricia75754 vmocha04
Posted
Sorry to hear about wheel chair. I know that's always an option that is presented. But two things, it's important to get exercise in, to keep nerve endings from damaging more. And it is supposed to boost endorphins. GOD knows I need this.
It's great you have your kids to help. Here in California, people can get a nurse to help them around house. Maybe that can give kids a break. I always FORCE myself to do something fun once a week. Bored people are boring. That's what I keep in mind. My husband helps tremendously and is sympathetic, but I don't want that, you know?
So every other Monday he takes off work and we do something fun.
Take care, don't give up, there is hope
vmocha04 tricia75754
Posted