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Hello I'm Claire, ask me questions about living with chronic pain

ClaireSaul
ClaireSaul Member Posts: 92 Pioneering
Hello I'm Claire - I am a mum to 3 young adults and we have hypermobile Ehlers Danlos Syndrome, a genetic condition which affects the connective tissue. My first major back surgery, aged 21, left me with permanent nerve damage and chronic pain. I was forced to stop nursing due to my health so I started writing about living with chronic pain. Blogging along with a spinal cord stimulator & meds, helps me cope and I'd like to support you too. Ask me anything related to living with chronic pain.

Claire Saul
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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Comments

  • milkmaid
    milkmaid Member Posts: 5 Listener
    I too live with chronic pain, I have rheumatoid arthritis  degenerative disc disease, crohns disease and COPD . It's a daily struggle! Oh and I have scoliosis too.
  • lindadenise
    lindadenise Member Posts: 302 Pioneering
    I have Cervical Dystonia Fibromyalgia and spinal stenosis.
  • AllyL
    AllyL Member Posts: 2 Listener
    I have Multiple Sclerosis and chronic arthritis.  The pain from the MS is horrific, like when you bang your elbow and get shooting, burning pains down your arm but I have them all the time in my arms and legs as well as the arthritis.

  • littlemole
    littlemole Member Posts: 3 Listener
    I also have CRPS, degenerative bone desease and fibromyalgia, I wouldn't call it living.  My life has changed completely and I can't deal with it so I also suffer with depression. I had to stop working and stop driving anywhere on my own because when I get to where I'm going I can't walk far so need someone to come and push my wheelchair as I can't walk far . How do you accept it because I can't. 
  • Henry
    Henry Member Posts: 66 Courageous
    Yes.  I suffer from  fibromyalgia.  Arthritis.  Anxiety. Depression .
    Acid reflux. Severe headaches. Dup contractual . Chronic pain.
    Feeling  worthless   .... 20  yrs. 
    Veteran . 
  • Benedorm_123
    Benedorm_123 Member Posts: 6 Listener
    Hello Claire my name is Brian l to suffer from pain l will be going into hospital in April for a spinal cord stimulation op does it really help I am 64 and financially I really need to get back to work if possible
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hello Claire my name is Brian l to suffer from pain l will be going into hospital in April for a spinal cord stimulation op does it really help I am 64 and financially I really need to get back to work if possible
    Hi Brian,

    Can I ask where you are having your scs and if you have attended any sort of course in preparation?
     I had mine at St Thomas' in London and part of the programme was attending a 2 week inpatient course - but I know that everywhere is different.  For me the main purpose of this course seemed to be to give us realistic expectations and to know the limitations of scs, how we would know how much benefit we would get and to learn some other strategies to cope too. 
    I am presuming that you will have a trial first - the electrode cable is placed against the spinal cord and the battery pack is outside your body - and it is during this time that you will know how much benefit you will get.  I have the type that can be felt and so I knew immediately that it was covering the path of my pain, and it has really helped me.  It doesn't get rid of the pain, and when I turn it off I do struggle....but it has made life so much better for me.  From my course of 11, there are 6 of us in touch still who all had varying degrees of success but we would all say it was worth it.  Please discuss with your consultant the type of work you do and do you need the device working to be able to drive - mine has to be turned off for driving and at night (if I was still driving I would struggle without it).  But there are also devices where the stimulation is not felt and they can be on full time .  However different devices are used for different diagnoses, and NICE licences them for different things (eg CRPS) - your team should talk you through this.
    Let me know how you get on,
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    I also have CRPS, degenerative bone desease and fibromyalgia, I wouldn't call it living.  My life has changed completely and I can't deal with it so I also suffer with depression. I had to stop working and stop driving anywhere on my own because when I get to where I'm going I can't walk far so need someone to come and push my wheelchair as I can't walk far . How do you accept it because I can't. 
    I am sorry you are having such a tough time - I think that many of us living with chronic illness also suffer with what my GP describes as "reactive depression".  Losing my career & then being told I shouldn't drive were the biggest blows to my independence. I too also have to be pushed in my wheelchair as more often than not my shoulder dislocates when self propelling.  How do I accept it you have asked?  Honestly....it varies from day to day.  I have accepted that if I want to take part with friends and family that using a chair gives me freedom that the pain from walking stops. I try now not to make too many plans and to pick my battles to fight - be it the activities I really want to do, the times that I really need medical help (I hate going to A&E).....I do have really low days when I think about the "friends" who have left me behind, the things I can't do with the kids....but I have tried hard to channel this frustration & anger into a bloody mindedness to the things I still can do, like reading (so I write book reviews, joined online book clubs), writing (starting my blog) and chatting (online - so blogging community, this online community)....Netflix and the Movie channel have become great friends.
    Please don't think that everyone else who you see talking out here are all coping all the time - we're not and you mustn't think badly of yourself for feeling you can't accept things. I think the fact you can't can be the fire in you to keep yourself going!  Please let me know how you are doing,
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Henry
    Henry Member Posts: 66 Courageous
    indeed the Fibromyalgia  is terrible it is a curse, there is no cure for it and with Anx and depression makes it worst. 
  • Barbiesnemesis
    Barbiesnemesis Member Posts: 86 Pioneering
    Hello @Claire, I too, like others here, have fibromyalgia and as Henry says it is a curse! There seems to be no real help out there except 'self management' and medications that have negative side effects and no positive benefits. Also I have severe depression and anxiety which means it is difficult, nigh on impossible, to motivate myself any more. I have fought against my depression for my entire life - I am now 54 years old. I lost my job, my friends, my financial security, and my 'raison d'etre. I can't see the point of me any more; I just exist with pain in my body and pain in my mind. 
  • BillMcKim
    BillMcKim Member Posts: 4 Connected
    Hello all.
    My Chronic pain is 6 years undiagnosed or simply tagged as chronic pain. Like most I have struggled with drugs and coping techniques etc. I have undergone 3 nerve  denovation procedures which helped for short periods of time. I attend regular physio though sometimes that Dan spark off my pain receptors. I still just about manage work though it is becoming more and more difficult.
    I hope this forum will help with guidance as you have, in most cases, been through my road.
    I currently have no PIP and Don,t yet need any financial help from the government. I still drive and get around but what I do need is physical support to keep going. 
    How do i get my GO to listen? A t min appointment with a locum? Does anyone have anything to help?
    Happy Easter all.
    Bill

  • Waylay
    Waylay Member Posts: 970 Pioneering
    Hi there @ClaireSaul , I'm looking into getting a stimulator, and I'm also hypermobile. I'm not diagnosed, as I couldn't really see the point (they can't provide you with any treatment, right?), however, I was told that hypermobile people tend to scar a lot more. My chronic pain began after a microdiscectomy to remove my L5/S1 disc, which had herniated 11mm into my spinal nerves. Subsequently I grew a large quantity of scar tissue. I had a fantastic physio who gradually broke up the scar tissue near the surface (along with a fall down the stairs which ripped a big section of it - you should have seen the fantastic bruise!), but it left me with scar tissue wrapped around my spinal nerves and both sciatic nerves (more on the left). I scarred badly when I had a knee arthroscopy many years ago, when I had my gall bladder removed, and from a cartilage piercing in my ear. As you can imagine, I'm hesitant to do any further digging around near my spine.... Can you tell me a little about your experience, and how well it works for you? Did you have problems with scarring? Did you have any muscle spasms, and did it help with those?

    Thanks!
  • Cheryle
    Cheryle Member Posts: 1 Listener
    Hi Claire,
    Alongside Fibromyalgia and it's 1001 symptoms  I have osteoarthritis of lower spine, hips,knees, and shoulder.
    I was, kind of, managing my pain until I had my most spectacular fall ever. That was 18 months ago. 
    I have since been diagnosed with chronic bilateral  sacriollitis on top of everything else.
    Every single day is a struggle.
    I've had to give up work. I was transferred from contribution based ESA to support group. I'm already on high rate DLA for both "indefinitely", currently waiting for my invitation to appy for PIP. 
    My question is what are the techniques and coping strategies that you have developed which may help myself and others? Thanks:)



  • janejr
    janejr Member Posts: 142 Pioneering
    Hi @ClaireSaul I haven't been on scope for a while I had a few personal problems to sort out but now in a lot of pain. Went to doctors because my arthritis is getting worse. My hand wrists elbows feet ankles and heel were all playing up the pain and swelling more than my norm. Last night was dreadful I haven't been to sleep even my hip and backs of my knees were in agony. Iteffects me mentally and makes me afraid of my future. The doctor didn't examine me she said if I said I had arthritis in all my joints that was good enough for her without x-rays. She has arranged blood tests for a full mot and gave me some gel to rub in to my joints. They only work briefly and didn't help at all last night. Claire should I rest of excersice when I'm having a flaire up. What would help . I'm on the usual meds. Naproxen gabapentin morphine paracetamol. Morphine is just a low dose as don't want to be zoned out and want to continue to drive. Any advice please Claire, I'm feeling a little fragile after last night. Pain exhausts you
  • littlemole
    littlemole Member Posts: 3 Listener
    I also have CRPS, degenerative bone desease and fibromyalgia, I wouldn't call it living.  My life has changed completely and I can't deal with it so I also suffer with depression. I had to stop working and stop driving anywhere on my own because when I get to where I'm going I can't walk far so need someone to come and push my wheelchair as I can't walk far . How do you accept it because I can't. 
    I am sorry you are having such a tough time - I think that many of us living with chronic illness also suffer with what my GP describes as "reactive depression".  Losing my career & then being told I shouldn't drive were the biggest blows to my independence. I too also have to be pushed in my wheelchair as more often than not my shoulder dislocates when self propelling.  How do I accept it you have asked?  Honestly....it varies from day to day.  I have accepted that if I want to take part with friends and family that using a chair gives me freedom that the pain from walking stops. I try now not to make too many plans and to pick my battles to fight - be it the activities I really want to do, the times that I really need medical help (I hate going to A&E).....I do have really low days when I think about the "friends" who have left me behind, the things I can't do with the kids....but I have tried hard to channel this frustration & anger into a bloody mindedness to the things I still can do, like reading (so I write book reviews, joined online book clubs), writing (starting my blog) and chatting (online - so blogging community, this online community)....Netflix and the Movie channel have become great friends.
    Please don't think that everyone else who you see talking out here are all coping all the time - we're not and you mustn't think badly of yourself for feeling you can't accept things. I think the fact you can't can be the fire in you to keep yourself going!  Please let me know how you are doing,
    Claire
    Hi Claire thank you for your reply I have started to reduce my morphine dosage as it was 3 times over the daily allowance. I was on 100mg patches of zentinel which works out to 360mg of morphine, I am on 75mg now and due to drop to 62mg tomorrow  my pain is even worse so I'm not looking forward to the next drop . I also now have been diagnosed with cirvica dystonia and will be having injections in my neck to help this . 
  • Apri54
    Apri54 Member Posts: 8 Listener
    Hi All and Claire it is odd that knowing its not just me helps. I have had another flare up today I had spine surgery in December and have mobility issues which are better than pre opp but still stop me in my tracks. I have nerve damage which is what has floored me today so I have been helped by two lovely ladies back to my car and managed to get home. It was bad yesterday but I took prescription meds and rested but today is worse so more meds and complete rest. I took jerk and shake on bad days. My phyio recommended I go back to the GP but I start pain clinic in August.
  • justJohn
    justJohn Member Posts: 17 Connected
    Hi Clair happy to talk to you . Like lots no scope I have such chronic pain . Every joint is painful my neck sounds like a rachit off a socket set click yer it hurts as do all , but severe pain in left arm  elbow to finger tips small ring big fingers , I at times get sharp pain in end of finger joint like I hit it with a hammer or trapped in door quite painful why . I got nerve damage in left hip had hip replaced. From but to knee then real pain knee to foot . Past month or so I wake for loo can not stand the pain in my feet souls both like I held a electric drill to long but my feet and so bad this pain two week back I was vomiting black at four am lots of.it recked my bed an carpit lots more was in mess unable to stand I was so worried . But my feet pain one more big thing why my feet what can the feet pain be I just about had it things are not going get better . I ain't at point of end it all bin there got the antidepressants . But I never thought I would end up a burden no I no I got this and reason to go on but it dose get me down just like to go sleep not wake but natural . It's just this pain I woke with in nt was bad when woke unable to walk even put feet on floor not able all time now self hypnosis did work not now have you please a idea what wrong with feet why such pain they get numb stabbing tingles burn I so sorry to complain so much can u give advice on what is wrong and how to ease pain please thank you 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I have noted elsewhere the relative strengths of well known pain killers and I think one or two of the estimates given here are inaccurate. Morphine is used in many forms as, beyond a certain point, it is the only functional high-level pain killer.

    For myself I suffer chronic pain caused by 8 or 9 discs in trouble (1 rupture and 7 or 8 being crushed and dieing). The rupture is cervical and causes pain and problems in neck, shoulders, arms and hands and the remainder are lumbar and thoracic and cause hip, leg, knee, ankle and foot problems. Even on 125 microgramme per hour patches of Fentanyl I cannot walk more than a single step without suffering though oddly affects driving very little. Of course life isn't that simple and I suffer regular bouts of massive sciatica from trapping nerve bundles rather than single nerves and also have circulation issues in the lower legs. Then there are the MH issues that go along with 13 or more years of suffering without appropriate support Severe Depression, Agoraphobia, Anxiety, Panic Attacks Paranoia and suicidal tendencies in addition to the OCD I have always had.

    I am given no help at home. Moving me to a home so I can use a wheelchair indoors is being resisted. Doctors never understand because what I have has no name, no treatment and doesn't really exist (except I have it ofc). Consequently support is sporadic and unhelpful. My children are all grown up but stay away from me because they do not understand why their dad is in such a bad way when he looks fine. I am 61 but look only 50 and, so I'm told, still look attractive. This though just makes it harder to prove to others I am very very ill.

    I have tried therapy but the MH issues stem from a lack of physical support and hence, talking about it, just makes me even more depressed. I have been suicidal for 5 years and have struggled with it every day, losing often but still around for some strange reason. I may now though have come to the end. I simply no longer have reason enough to fight the stupidity I face daily.

    My patches equate to a daily intake of 3 grammes of Fentanyl daily which equates to 150 grammes of morphine and 1.5 Kg of Tramadol. These are minimums as Fentanyl is used in different strengths and is anywhere between 50 and 100 times as strong as Oral Morphine. This sort of intake should have horrible side effects but, due to my bodies strange tolerances, have little or no effect. I cannot even get high on Morphine in the way many do and have never suffered hallucinations such as some report. Nor has such an extended usage done any internal damage. All blood test show my internal functions working as well as ever, better in some cases.

    Anyway, I am rambling, so please do continue to support each other and give advice. Even poor advice is welcome when you are cut off from the rest of the world because it shows that people mean well even if they really can't help much and often, knowing that others care enough to try can be very beneficial.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

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