PIP/Trigeminal Neuralgia and Chronic Fatigue

Palmtree125
Palmtree125 Community member Posts: 51 Connected
HI I suffer with TN and Chronic Fatigue along with Anxiety and Depression, I have a telephone assessment coming up soon just wondering how likely it will be to be awarded PIP.

I'm not coping well with these illness and terrified about assessment because i'm not good at expressing myself plus my anxiety makes it worse.     
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Comments

  • poppy123456
    poppy123456 Community member Posts: 61,712 Championing
    PIP isn't awarded based on any diagnosis. As no one here knows exactly how your conditions affect you then it's impossible to answer that question.
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    ok yes that is true. Thank you
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Do you have someone who can sit with you for support during the call @Palmtree125, do you think that would help lessen your anxiety?
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    Hi @Alex_Scope no I haven't got anyone my daughter not very well at the moment so don't think she can help. I'm feeling so tired with the Fatigue and in constant pain all the time.
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    I'm sorry to hear that @Palmtree125, sometimes taking notes or writing down everything you want to say beforehand and having it with you can help during the call.

    Have you been able to speak to your GP or another specialist about pain management? I know it's very difficult to get in touch lately, but it's well worth doing if you're struggling with pain levels.

    Remember to be kind to yourself, this can be a stressful process, and you're doing all the right things. I hope your daughter feels better soon too!
  • LuluLoopy21
    LuluLoopy21 Community member Posts: 20 Connected
    Just have to be honest and explain the pain how it effects ur day to day actives on what u struggle with n needing help from ur family friend or carer n how often where daily weekly.
    (My mental health is hour by hour i change i can be a slug then spring to a dolpin n av 2 have an responsible adult with me as i flip out moody to hyper to shut away to in ur face) just dont give yes no answers explain ur bad points to than 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,924 Championing
    Thanks for sharing your advice @LuluLoopy21. I am sure it will be invaluable  :)
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,924 Championing
    edited January 2023
    How are you feeling about everything at the moment @Palmtree125? I hope you are managing ok.

    Please don't hesitate to let us know if there's anything else we can do to support you. We are all here for you and listening to you.

    Take care for now and we will look forward to, hopefully, hearing from you again soon :)
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @Lululoopy21 Hi sorry I haven't responded quicker, just struggling with everything my telephone assessment is next week and feeling so anxious but I will try to do all those things you have said.

    Thank you very much  
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @Alex_Scope Thanks for your reply, I will try to do those thing's you have said.

    Thank yoi
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @L_Volunteer Hi thanks for your reply, at the moment my anxiety is like 100, my PIP assessment is next week and feel like I will freeze up and  not pit myself across properly in explaining how my health problem affect me. I have lost so much weight over the last 7 months and am not coping well, plus having struggle in to my job which is one or two days a week in crippling with all the pain I'm in.   
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    I'm so sorry you are going through all that @Palmtree125.

    Do you know whether your job could make any reasonable adjustments to help with the pain? Did you manage to speak to your GP or specialist since Alex suggested?  I know it is hard to get an appointment at the moment. 
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @Hannah_Scope Hi thanks answering my post, I'm not sure if I replied back to you or not because I am not good using computers, my body  tends to react to a lot of mediation so haven't really got anything that helps the the pain at the moment, as for work I was doing two days a week but now its reduce to one a week for a few hours like 5.5 hours or 4.5 per shift. I am now worrying about my PIP assessment I had this week the person didn't seem very nice or caring at all. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,924 Championing
    It sounds really difficult that the PIP assessment person didn't seem very nice or caring at all @Palmtree125. I hope your PIP assessment went better than it appeared.

    How are you feeling about reduced working hours? It sounds like a positive, especially with all the pain you experience and not really having anything that helps the pain at the moment.

    Please don't hesitate to let us know if there's anything we can do to support you though, it sounds like you are going through a lot at the moment  <3
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @L_Volunteer Thanks for your reply, I'm not feeling at my best with everything happening all at once, I'm not feeling hopeful about PIP assessment at all just can't believe he was so uncaring. I'm not sure what I'm going do it I don't get it. The reduce hours help because I'm in a lot pain and the constant headaches and fatigue, I usually stay in bed all day.    
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,924 Championing
    It sounds really difficult that you are not feeling at your best @Palmtree125. However, this is understandable with everything you have happening all at once. 

    I hear you about him seeming uncaring contributing to your lack of hopefulness. Is there anything else about the PIP assessment that means you are currently not feeling hopeful? 

    I hope it goes better than you currently anticipate. We'll be here to support you if you don't get it but I hear your concerns, especially as you are also feeling unwell  :(
  • dieselsmum
    dieselsmum Community member Posts: 7 Listener
    i also have tn and fibro its horrible my dad also suffers the same but neither of us are the sames im in a 4 week flaire up and in chronic pain had to go to morphine which i hate but the pains so bad i cant take it, fillinf the pip forms in can be so horrible i hate doing them dread the time when its time for when they come round now doing my sons appeal for them and also my other sons dla at the same time both on the autistic spectuim and its hard remebering which does what 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,924 Championing
    edited January 2023
    Thanks for sharing your experience with us too @dieselsmum. Sorry to hear you and your dad both suffer from it too though.

    I can hear how the PIP forms are probably the last thing you want to be doing when in this much pain. In terms of memory, do you have somewhere you can make a note you can refer to?

    I find notes really useful and have lots of Post-It notes around the house for this reason!  :p
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @Palmtree125

    Hopefully something comes through to help reduce that pain! Please try not to worry about your PIP assessment, I know, easier said than done right? but we are here :) 
  • Palmtree125
    Palmtree125 Community member Posts: 51 Connected
    @Hannah_Scope Thank for your reply, I received my PIP result this morning they basically gave me zero on almost everything, and put a lot things in the report that I  did not say. i am feeling so depressed with life, I I am suffering with so much pain every day, I don't know what am going to do.