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Any advice for chronic nerve pain?

UnicornPowerUnicornPower Posts: 20Member Connected
edited January 4 in Dealing with chronic pain
I have chronic pain due to my Neurofibromatosis and Scoliosis. I'm not on medication as gabapentin made my mental health bad. I am waiting for referrals to several clinics but I am really struggling physically and mentally. The pain is throughout my whole body and I am in severe pain at work. Hope someone can help me :) <3

Replies

  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Hi @UnicornPower, I'm so sorry to hear about your pain and how it's affecting you. At the very least, I hope you know you're among others who understand and can empathise, and you can talk to the community about anything.

    Is your GP aware of your situation at the moment?
  • UnicornPowerUnicornPower Posts: 20Member Connected
    Hello @Pippa_Scope yeah the GP and practice manager are aware of it but the referalls are taking so long. I initially asked for the referral in February 2018 but as the wait is so long and I am on no medication I am struggling in pain quite a lot. Standard paracetamol and ibuprofen don't help and I am also going to be tested for possible fibromyalgia. As well as all the problems I also have ovarian cysts and IBS which hurts my stomach a lot.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    I'm sorry to hear that @UnicornPower, it can feel so frustrating when it seems there's nothing you can do but wait.

    We have lots of other members with chronic pain here on the community who will hopefully be able to share their tips and experiences with you. You may also like to read Alice's recent post on coping with chronic pain, and I'll also tag in @ClaireSaul in case there's anything she can add!
  • Angiebabes2410Angiebabes2410 Posts: 70Member Courageous
    I'm so sorry to read about the pain you have, pain is one of the hardest things to tolerate.

    I take a lot of pain medication, it doesn't take away all the pain and the nerve pain I have in my right foot is awful, they give me pregabalin but if you can't take gabapentin it's likely that pregabalin would cause you the same issues, my physiotherapists suggested relaxation techniques and yoga when i attended the pain management programme. 

    I really hope you don't have to wait much longer for an appointment to see someone. Take care Angie xx
  • WaylayWaylay Posts: 804Member Pioneering
    I find that stretching every day (well, when I can) really helps. I also find that relaxation exercises are helpful (you have to practice for a few weeks for it to start helping), and mindfulness is proving to be very helpful. Do opioids help? I wouldn't be able to function without them, tbh (not in an addiction way; they help to control my back spasms). Have you tried CBD?
  • UnicornPowerUnicornPower Posts: 20Member Connected
    Hello @Angiebabes2410 I am sorry to hear about your foot pain as well. Nerve pain as said by NF nurse is one of the most horrific pains out their and unless someone has experienced it some may not understand like my parents don't understand and tend to have a go at me. I did try physio but didn't seem to help but I will try some relaxation and see if that works. I hope your not in too much pain and that you are okay. Nice meeting you and thank you for your message 😊 x
  • UnicornPowerUnicornPower Posts: 20Member Connected
    Hello @Waylay thank you for your message. I will have to try relaxation and mindfulness and see if it helps me or not. Not heard of opioids before and I did try CBD which helped for a week then got horrific pain the second way and been in pain since. It's crazy ☚ī¸ I hope you are well today and your feeling okay 😊 Nice meting you x
  • AnkyieSponAnkyieSpon Posts: 121Community champion Courageous
    Hi @UnicornPower I'm also a member of the pain club, the club nobody wants to be a member of. Have you tried acupuncture? It's available on the NHS might be worth trying. It is hit and miss but might be worth a try. 
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • UnicornPowerUnicornPower Posts: 20Member Connected
    Hello @AnkyieSpon I have heard of acupunture from my spinal surgeon but the thought scares me as I have tumours on all my nerves and my neck is so sensitive that even the shower causes pain in it. What is it like? Have you ever tried it yourself? It's nice to meet you too 😊 x
  • AnkyieSponAnkyieSpon Posts: 121Community champion Courageous
    @UnicornPower tumours really Omg sounds painful. I didn't feel a thing and found it very relaxing (so much so I fell asleep in the tube, I hate the tube) as I said it's hit and miss first tune I had weeks pain free in hips, other times in lower back was ok for a few days but as I said it relaxed me enough to sleep better.
    Stretches are also very important. I swim and go pilates, obviously you know your body what you can do but just incase ask a medical expert. Let us know if you try acupuncture.
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • UnicornPowerUnicornPower Posts: 20Member Connected
    They are very painful. I am glad you didn't feel any pain and it relaxed you. Are still kind of pain free now? I wish I could swim but I just drown lol. I will definitely let you know if I try acupuncture though :)

  • AnkyieSponAnkyieSpon Posts: 121Community champion Courageous
    No @UnicornPower I wish I was pain free, had a session who knows how many months ago then last appointment rescheduled till end of January. As for swimming you can always just go to pool and find a quiet corner and exercise 
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • UnicornPowerUnicornPower Posts: 20Member Connected
    Oh no that's not good 😞 I can't even swim lol 😂
  • AnkyieSponAnkyieSpon Posts: 121Community champion Courageous
    Oh no that's not good 😞 I can't even swim lol 😂
    Never to late to learn. I started improver lessons when I was diagnosed with Ankylosing Spondylitis 5 years ago now I'm in advanced, at least I know I'm doing it right 
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • UnicornPowerUnicornPower Posts: 20Member Connected
    That's good. I'm glad it is helping you. So what is ankylosing spondylitis if you don't mind me asking? 
  • AnkyieSponAnkyieSpon Posts: 121Community champion Courageous
    @UnicornPower of course I don't mind you asking, it's a type of inflamatory arthritis mainly efeecta spine hips and neck and can eventually lead to joints fusing. 
    https://nass.co.uk/about-as/what-is-as/
    Tina 
    (Ankyie Spon)
    I'm a Pain Warrior
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @AnkyieSpon aww sounds painful ☚ī¸ sorry to hear about that. Hope you are okay 
  • Angiebabes2410Angiebabes2410 Posts: 70Member Courageous
    I hope you are doing ok 
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @Angiebabes2410 hello. I am doing okay thanks but in mega pain lol. How are you feeling?
  • Angiebabes2410Angiebabes2410 Posts: 70Member Courageous
    I'm a little relieved to have finished the tribunal, and the panel of 3 had nothing to ask and only the cap lady asked 2 questions about socializing, nothing with regards to my pain or my disabilities which I found strange, they only spent 14 minutes on the phone and about 5 minutes was them introducing themselves one by one and asking if I was alone and that I was not allowed to record the hearing but they would be, I had all the paperwork on my bed around me for reference but didn't need it xx even now I can't sleep because of the pain
  • cathiecathie Posts: 143Member Courageous
    I have suffered this since 2004 injections short term  but done far more harm than good after every known tablet only thing calm s it a bit is morphine patches really helps start low dose tablets for me don't help just sharing my experience with u may not be for you . 
    Only me .. cathie..
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @Angiebabes2410 keeping my fingers crossed for you that the tribunal went well. Hope your pain eases and you get some decent rest. How are you feeling today?
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @cathie Hello Cathie. Nice to meet you. What was it you were saying you have suffered? The neurofibromatosis ?  I haven't tried morphine patches myself but I was in a morphine drip into my spine after spinal surgery. Is there anything doctors can do for you?
  • ncpsncps Posts: 28Member Connected
    Don't forget to check out my website and Facebook page. I hold Support meetings all over Northamptonshire for people affected by Chronic pain. Www.ncpsuk.com

    Lou

    Northants chronic pain support

    www.ncpsuk.com


  • Angiebabes2410Angiebabes2410 Posts: 70Member Courageous
    @Angiebabes2410 keeping my fingers crossed for you that the tribunal went well. Hope your pain eases and you get some decent rest. How are you feeling today?
    I was really nervous about the tribunal, I'd waited over a year after my f2f assessment, she said I could raise my hands above my head behind my back and stand on top toes, all of which were untrue, I was doing my best to get prepared for any amount of questions from the 3 people on the panel and the woman from dwp . She asked me about social interactions, I explained how I feel before going out and while I'm there if I actually go  rather than talk myself out of it due to getting panic attacks and worrying etc.  They took 10 minutes on the phone and they asked that 1 question and granted me the enhanced rate and are backdating it 10 months or so, I was so worried but they gave me the right decision. Hope you are doing good. Do you want my number you can text me when you are free, or look me up on Facebook Angie myatt 
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @Angiebabes2410 aww so happy you got rewarded it though and have it backdsted. I think I've found you on Facebook opso we can chat better there but text me on FB your number and we can WhatsApp :)
  • UnicornPowerUnicornPower Posts: 20Member Connected
    @ncps that's cool. I live in Warwickshire area so no where near me I don't think but I will have a look
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