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Jujus Member Posts: 2 Listener
Hello it's Jujus back again after a while.  I'm not used to writing and finding responses as yet..technology is not my best friend but I keep trying.  Thank you to those that did welcome me here,it brought a smile and urged me to return. I've had  to cut back on the Gabapentin I was taking as it caused terrible stomach pains. It's take and have another issue or don't take and wonder how I'll be. Night times aren't much better though I take amatriptylne and promethazine to help the pain and to aid sleep. I get spasms which make my whole body jerky involuntarily which in turn wakes my husband. It's worrying for us both and I've taken to getting up and staying in another room finding things to do until I go back. It can take till 5am..I'm exhausted. I mentioned having mental ill health and those issues have gotten worse lately. I think a lot of this problem is that it can't be seen and people think it's no worse than a sprain and things will be fine soon. I get tired of sharing it and how low I feel so I've stopped and have begun self harming instead,which I had managed to stop doing for so long. Truth is I feel so lost not knowing how I'm going to get through each day how will the pain be. I tried to stay in the moment but not easy when my husband would like me around more and it feels like our closeness is suffering due to how I feel. (Some things ,feelings can't be hidden.). I'm good at being the fun smiling person and I do have a great sense of humour..especially when I laugh at myself but lately I'm despairing as I don't believe my doctor really understands PN . She was going to change me to prefab aline which I've taken a while back but became so unsteady even more so we haven't tried since.  I just wondered ,as so many of you have had to contend with this awful disease if you had any advice or insight for me. Maybe something to ask my doctor about. Also I've noticed to add to it all I'm now having problems with my bowel and bladder that she is aware of.  I'm losing me to my world and it saddens me,I have one face for the outside and feel so alone inside. I'm not even sure if my doctor agrees with her colleagues diagnosis!! I tried a CBD OIL which may have helped but not enough for me to pursue  Hard to believe i  used to dance andwhen I was able to conquer my anxiety go for walks with my husband and the dog,Max. Max is wonderful company..along with 2 cats a budgie and my chickens but with PN I am lost. I'd appreciate any feedback. I sendi healing hugs to all Thank you


  • janer1967
    janer1967 Member Posts: 15,072 Disability Gamechanger
    Hi @Jujus Welcome back Im really glad you have come back to us.

    I am concerned for your welfare after reading your post and would encourage you to seek assistance for your mental  here is the link to MIND charity Mental Health – MIND Website: https://www.mind.org.uk/ Helpline: 0300 123 3393 Email: [email protected] 

    You can also contact NHS helpline 111 and also 999

    I hope there are other members who can give you more advice and there is always the scope helpline available 

    Free disability helpline

    Open Monday to Friday 8am to 8pm. Saturday to Sunday 10am to 6pm.

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Jujus, I'm really glad you felt able to come back to the community. It sounds like things have been really tough and that it is hard to say how this feels.

    Have you spoken to your GP or mental health professional about self-harming?

    Chronic pain can be incredibly hard to live with, like you said, it's invisible. As a result it can be hard to convey what it actually feels like.

    Here are some pain resources. I appreciate that they won't completely eliminate your pain and what you feel is real. However, there is some great information about managing pain which could be helpful.
    MIND say self-harm can be "express something that is hard to put into words", and I imagine this is frustrating. They have information about how you can help yourself now with urges to self-harm, as well as long-term support for self-harming

    It's really important to reach out to those who are qualified to help you, whether this is a GP, health care professional or a crisis line like Samaritans. If you would prefer to text then SHOUT have a crisis text service.  

    I hope you have a lovely evening if you can and please stay in touch. 


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