Hi, my name is Jujus! — Scope | Disability forum

Hi, my name is Jujus!

Jujus Member Posts: 2 Listener
Hello I'm a little shy to join the community but seeing as I suffer with mental illness health issues aswell, I decided today I needed people to talk to as I'm now having to cope with the pain of Periferal Neuropathy. 
I've been in pain since late last year,bit only was diagnosed near the end of March. 
It doesnt help that at my surgery,it wasn't my usual Doctor that put a name to the condition. I'm not sure if either really no another about the condition.
I'm currently taking Gabapentin 300mg 2x per day and 600mg at night
Duloxetine 60mg at night...for pain and also as an antidepressant. 
Recently my GP has prescribed Paracetamol 4x daily

It's hard not having people that understand and  feeling not so alone with it I think would help.
I feel my relationship with my husband, is struggling as we both try to handle the impact this illness is having on both our lives.
It's so nice to find a forum of others, though I wish no one  had to endure this condition.

Thanks for reading


  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @Jujus and welcome to the Community.  It's nice to meet you and have you on board!  So glad to hear you took that brave step and joined us as I realise when you are shy it isn't easy joining something like a forum.  However, you will find that we are a friendly bunch of people on here and everyone is so supportive of each other.  It is a great place to make new friends too and I have met a lot of lovely people here since joining nearly 2 years ago.

    I'm sorry to hear you are struggling with your health issues as that can't be easy on you or your husband.  Pain is a terrible thing and a lot of us on here suffer from this, but it can be so debilitating at times, but we all understand on here about it and it is a great place to share as we all care and look out for one another so please feel free to chat to us anytime as there will always be someone on here to listen.  

    I have Spina Bifida and my health has got worse since having a hip replacement in 2015 and that put a big strain on my marriage for a bit as my husband had to care for me more and gave up work, etc, and I found it hard to cope at first too with him caring for me as I used to be so independent before my surgery.  However, with talking and realising that things were going to be different from now on, we did get through it in the end.  I think when someone has a disability or a health issue and it gets worse, it is important to realise that both people in the relationship can be affected by this, but you will both get through it, I'm sure, and be able to come to some kind of new way of managing things.  I wish you both well anyway.

    We have a virtual Coffee Lounge on here where we discuss different subjects such as pets, hobbies, movies, books, etc, so you may find that a good place to start chatting to people, but just whenever you feel ready.  I look forward to seeing you on here and hope you enjoy your time with us on the forum.  If we can be of any help or support at all to you then you only just have to ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,461 Disability Gamechanger
    edited May 2020
    Hi @Jujus - Welcome to this friendly & supportive community from me too. I'm pleased you decided to join us all as there are some really nice people here. I found it daunting when I joined 9 months ago, as I'd never been on a forum before. People were so kind & helpful that I stayed, like Ails.
    I find that altho we all have many & varying disorders (or have a relative with problems), that we have so much in common, which gives us some understanding.
    Like Ails, I have had my disorder all my life (Ehlers-Danlos Syndrome, which affects my joints), so sort of grew up with it. Then my problems worsened too, which was hard to deal with, especially coping with increasing pain. I also have neurological problems & take Gabapentin. I find it 'dampens' things down a bit, but I had to learn to pace myself, & find other coping mechanisms. I use gentle exercise, a relaxation exercise that helps with stress & can reduce pain, & distraction (for me it's reading, watching films, pottering in the garden, or chatting here). As everyone is different it's finding what works best for you, & often it's a combination of things. I'll add some links to the relaxation exercise, & ideas to help with pain, & also Scope has put together some things to help us all with our mental health just now which may be helpful. Please see:
    I'm sure the insight Ails has shared will be most helpful, & remember to chat here any time too. :)

  • Adrian_Scope
    Adrian_Scope Posts: 8,595 Scope online community team
    Hi @Jujus. I'm glad you took the plunge and joined us.
    Hopefully some of what @Ails and @chiarieds have mentioned above will be of use. In the meantime, I just wanted to welcome you. Please don't hesitate to let us know if there's anything we can do. :smile:
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  • janer1967
    janer1967 Member Posts: 15,941 Disability Gamechanger
    hi @Jujus Welcome to the community and the brave step you have taken in joining us, we are a really helpful and friendly group.

    I suffer with peripheral neuropathy a side effect of having diabetes and also as an amputee get nerve pain even where I have lost my limb. I take pregabalin and this does control the pain, and the numbness but doesn't control the nerve pain in my amputated leg, luckily for me tho it is very sparodic and soon goes away.

    Have a good look around the site and Im sure others will be familiar with the condition