Hello I'm Claire, ask me questions about living with chronic pain - Page 4 — Scope | Disability forum
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Hello I'm Claire, ask me questions about living with chronic pain

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @foxuk and thank you for taking the time to share this with us. I'm sorry your aunt and wife have struggled so much with pain. How is your wife doing at the moment?
    Scope

  • foxuk
    foxuk Community member Posts: 103 Pioneering
    Sixth week without proper sleep. Intense pain caused by her spastic muscle contractions. The morphine takes the top edge off and that's all we can expect......

    Still waiting for a 'caring' consultant to get back to our GP - she was telephoned last Thursday.......

    All we can do is wait. I am husband first, PA second and Carer last. Following the best course of action as a PA (and Welsh husband) my wife is the guiding mind and I follow instructions...... don't all husbands anyway? I can only ethically act against her wishes as a Carer IF I conclude that her judgement is impaired and she is in danger of harm. Many times over the past week I would have called an ambulance IF I had been allowed to.

    The obvious answer is to increase her doses of Gabapentin and/or Baclophen to reduce the spasticity. But what would I know, I'm just the Carer?

    There are now secondary problems the most concerning is oedema. In the past her skin has actually split when it gets very bad and this also seems to trigger spasticity in her legs.

    One of the problems is a single research paper in Canada which links Gabapentin and opiates with deaths. Having read the paper I find it statistically questionable, with a low sample number and a 49% increase in risk on a fraction of 1% rate - surely within statistical error with a sample of  only 1200? (figures from memory).

    The other problem is me. I actually scored higher points on PIP than my wife BUT as she is bed-bound and I am semi-ambulant I and the effects on me are totally ignored.

    Sorry to be so ratty but I am suffering from lack of sleep and pain - there's no way they will increase my pain relief, no point in asking..........

    Nothing we can do except wait.  
  • bonnielassie
    bonnielassie Community member Posts: 26 Courageous
    Hi @ClareSaul Thanks for sharing your story and allowing us to ask you questions. I have had a degenerative spine disease since at least 2009 but probably a lot longer. I've had both my hips replaced due to arthritis, and I am woken up every night with pain in my knees and lower spine.. I also have scoliosis. I have a lot of other pain which is being put down to arthritis. I have a spinal simulator which helps a bit but not completely. I had a spinal decompression to relieve impending cauda equina then a fusion. I've been left with chronic pain in spine, pins and needles in saddle area, and incontinence. Then in 2014 I had a stroke, which I was convinced was related to morphine. This has left me with poor balance, a severely reduced memory, no concentration and loads of other stuff. I also have a chronic idiopathic cough - when I went for CT scan a fracture was found in my spine. That's it in a nutshell! And all that is without mentioning my chronic pancreatitis!! At the moment I have such a lot of problems relating to others, especially my immediate family. I feel guilty that not only has my life changed but theirs too, in so many ways.
    I have a couple of questions Clare
    Could the fracture in my spine have been caused by the insertion of the rods with the spinal implant (which I also had inserted at St Thomas')?
    I have recently begun to sweat excessively, feel nauseous and have many headaches (which didn't happen previously). Could this be related to medication and if so which do you recommend I change? 
    I have been taking pregabelin, Toviaz, ranitidine, lansoprazole, dihydrocodeine, tramadol, paracetamol, clopidogrel, atorvastatin, 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @foxuk, I'm sorry to hear you are struggling yourself, it cannot be easy. Have you had a carers assessment yourself?

    I hope this week has been kinder to you and that you have been able to get some sleep. We're always here if you need to talk.
    Scope

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @bonnielassie, thank you for taking the time to share this with us all and I'm sorry to hear you are in so much pain. Unfortunately we are not trained medical professionals so it is hard to know the answers to your questions. Are these things you have been able to discuss with a doctor or GP?

    I hope you are having a good day. :)
    Scope

  • foxuk
    foxuk Community member Posts: 103 Pioneering
    Hi Chloe_Scope,
    I have applied for carer's assessments twice before. In the first instance one was not even attempted and the SS advised that my wife and I give up caring for my parents and move out. This was the only solution they would discuss. The second time was after my mother had died and I had suffered a full dislocation of one of my knees. To cut a long story short the SS were attempting to get control of what they incorrectly thought was my father's house to fund his care and my wife and self were again to be left to care for ourselves. As soon as they realised that the property was jointly owned by my father and self they lost interest. These situations were given much publicity a few years ago. We receive nothing from the SS except a phone call every couple of years trying to SELL me their extortionately priced (they admit cost but will not quantify) shopping service - they seem not to have realised home delivery and internet ordering fill their function for FREE!
    My wife has deteriorated and the oedema has caused cellulitis, we have had home visits form our GP and a neurological specialist. BUT they are both on holiday this week  so it's Monday before I can try to force any progression.  The GP has authorised an increase in morphine and the specialist has increased her Gabapentin pending a change to pregabalin. The prescription for pregabalin was faxed to the chemist last Friday BUT as a controlled drug the chemist could not accept a fax. Then there was a bank holiday and then a 'mix up' with the paper prescription. The pregabalin arrived today a full week after an emergency fax request. 
    I am ignored in the main. I predicted the cellulitis two weeks ago. If the back pain had been treated it would not have triggered the downturn in spasticity. The oedema triggers spasticity which prevents moving from chair to bed where legs can be elevated which increases oedema. This is a downward spiral that could have been prevented if any of the medical profession had actually listened to my wife or me as her 24/7/365 Carer. Why don't doctors listen anymore? 
    Our regular GP is good but part time, which causes problems. The consultant explained very diplomatically that a GP surgery may have one patient with Transverse Myelitis every couple of decades and it is a very rare condition. Why the hell can't the majority of doctors admit when they don't know?  Our regular GP admitted this openly, but the others we have dealt with have just assumed things and were not prepared to listen when obviously wrong.

  • Rifi7
    Rifi7 Community member Posts: 198 Pioneering
    Is anyone’s pain intensified in the winter. I have spina bifita and notice my pain levels are worse in the winter? I have also noticed that this year my leg is more numb than it was last year and I’m struggling to stand long enough to even butter bread. I have nerve damage in spine and not sure if the nerve damage is causing this pain and numbness or if it’s the weather?
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @foxuk, how are you doing at the moment?

    Hi @Rifi7, sorry to hear this! I have cerebral palsy and my pain is always worst during this time of year! The cold weather always knocks me. I hope you are keeping warm! :)
    Scope

  • Rifi7
    Rifi7 Community member Posts: 198 Pioneering
    Hi Chloe_Scope,
    Do you find your mobility is more restricted? Yes I’m trying to keep warm. I brought myself a wireless heated back belt. Keeps my back warm but now my knees and ankles are swelling and causing my leg to be more numb. I have spina bifita and I’m hoping the cold is causing my leg to go numb and not that my condition is getting worse. Chloe how does your condition affect you?
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    Hi @bonnielassie, Many apologies for not picking up your message - I have had many medical problems myself over the last 12 months!  I'm wondering how you are getting on and if you have any more relief from your scs?  How is the sweating and nausea now?  With regards to the spinal fracture I think you need to speak to the team who performed the spinal fusion (presumably the rods your mention) and possibly the team/anaesthetist who inserted your electrodes for the stim.
    Let me know how you are getting on!
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    Hello @Rifi7, Like @Chloe_Scope, my pain is also always worse at this time of the year and I like the sound of your wireless heated belt for using when out in the wheelchair.  Would you be able to share where you bought it?  I don't have spina bifida so can't compare with you, but my mobility is worse during the cold weather - I have Ehlers Danlos syndrome and chronic nerve damage.
    Hope you are keeping ok during this latest cold spell!
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • bonnielassie
    bonnielassie Community member Posts: 26 Courageous
    @ClaireSaul
    Hi Claire, thanks for your message. My GP advised me to drop the ranitidine and the Naproxen which has helped with the sweating and nausea. However dropping the Naproxen has obviously resulted in more pain in my joints. I am woken up every night crying with pain. I don't know what to do and with all the pain I have I can't get comfortable. The only position I can tolerate is lying down on my side. Not much help for carrying out normal daily activities! My mam bought me some sticky heater pads to put on my knees which help a bit too take the edge off.
    Thanks again


  • Rifi7
    Rifi7 Community member Posts: 198 Pioneering
    Hi Claire,
    Nice to meet you. I also have nerve damage in spine. The heated belt I wear is the 
    Beurer Mobile Heat Pad HK72. It’s wireless so you just need to charge the battery and put it inside the belt. It really does do the job.
  • Gary1812
    Gary1812 Community member Posts: 3 Listener
    Hi Claire 
    A question on a type of pain, in 2012 I went around a corner on my motorbike coming the other way,  on my side of the road was a lorry, I tried to push it out of the way and ended up in hospital with my forearm bones protruding through my elbow by a couple of inches. After an initial operation the doctor told me that they genuinely didn't know what to do and to prepare for,  et the worst losing my arm, another doctor came in the following day and said he was an upper limb specialist and he would have a go at a fix. His aim was to make it stiff and pain free.  It actually went the other way. Despite his best efforts, and he was brilliant, it came down to a choice having a false elbow,  which he didn't recommend or a fuse, which I opted for. After a series of operations culminating in the fuse, I have been left in severe, constant and annoying pain. At my last appointment in 2016 his diagnosis was of neurogenic pain. I was told that I was to see my GP for pain relief etc. Well, I've finally got here,  1 can you possibly define "neurogenic pain" and 2 am I stuck with it or will it disappear in the future.? I take zomorph 12 hourly and gabapentin 3 times a day.
    Any thoughts, information and advice would be greatly appreciated. 
    Thank you for this thread,  it may prove very helpful moving forward. 
    Best wishes 
    Gary
  • Saffy
    Saffy Community member Posts: 88 Courageous
    Hi Claire, I've had fibro for many years and am used to most of the pains it throws at me, but for a while now I've been having the most excruciating burning pains in my thighs. It feels like my skin is being ripped off.
    It usually happens when I'm in bed and gets worse when I stand up. I'm scared to go to sleep in case it happens.
    I was just wondering if these kind of pains sound familiar to anyone and what I can do to ease an 'attack'.
    Many thanks.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hi @Saffy

    Just wanted to check in to see how you are getting along as there wasn't a reply here.

    I'm sorry to hear about the really bad pains you have been having, have you been able to get some help to manage them?
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  • BillMcKim
    BillMcKim Community member Posts: 4 Connected
    Hello,
    Pain levels are varied but currently trying some different pain relief which are working but too much on too of my existing drugs so just trying to balance things out.
  • BillMcKim
    BillMcKim Community member Posts: 4 Connected
    Thanks for asking 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Glad the new pain relief is working and hopefully you find the right balance soon @BillMcKim :) 
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  • Miss406
    Miss406 Community member Posts: 11 Listener
    Is Claire still here to ask questions? I notice this post has not had any replies since October 2020. 
    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 

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