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

ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
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

Replies

  • milkmaidmilkmaid Posts: 5Member 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.
  • lindadeniselindadenise Posts: 274Member Chatterbox
    I have Cervical Dystonia Fibromyalgia and spinal stenosis.
  • AllyLAllyL Posts: 2Member 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.

  • littlemolelittlemole Posts: 3Member 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. 
  • htlcyhtlcy Posts: 131Member Chatterbox
    Hi Claire, thanks for introducing yourself: it's so useful! I too have chronic pain (a severe spinal curvature called scheuermanns kyphosis and a form of cerebral palsy). I think it's so important to talk about chronic pain because it affects so many people. Thanks for offering your help and advice, I'm sure we'll all have lots to ask x
  • HenryHenry Posts: 66Member Talkative
    Yes.  I suffer from  fibromyalgia.  Arthritis.  Anxiety. Depression .
    Acid reflux. Severe headaches. Dup contractual . Chronic pain.
    Feeling  worthless   .... 20  yrs. 
    Veteran . 
  • Benedorm_123Benedorm_123 Posts: 6Member 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
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    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
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    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
  • HenryHenry Posts: 66Member Talkative
    indeed the Fibromyalgia  is terrible it is a curse, there is no cure for it and with Anx and depression makes it worst. 
  • BarbiesnemesisBarbiesnemesis Posts: 86Member Chatterbox
    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. 
  • BillMcKimBillMcKim Posts: 2Member Listener
    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

  • WaylayWaylay Posts: 681Member Chatterbox
    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!
  • CheryleCheryle Posts: 1Member 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:)



  • janejrjanejr Posts: 104Member Chatterbox
    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
  • littlemolelittlemole Posts: 3Member 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 . 
  • Apri54Apri54 Posts: 8Member 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.
  • justJohnjustJohn Posts: 17Member Whisperer
    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 
  • TopkittenTopkitten Posts: 894Member Chatterbox
    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 am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • justJohnjustJohn Posts: 17Member Whisperer
    Aw Topkitten I wish I could come round give you a hand . Thing is I am unable to stand I would love a cup of tea but it's not going to happen . Wow just had a read of your condition and 13 years like it am not surprised you are suisidal , I was after six months , thing is I do not believe in taking own life , and that is hard to say I have prayed not to wake up . I am not into god as such I more lean to reincarnation not big but enough to not want my spirit stuck in this bedroom . Also the thought of my kids at side of grave full of sadness and questions , no can not put my mum dad friends through it . I got that sciatic nerve damage bad pain that . Got t go for MRI scan of spine , got sclerosis only slight just read letter yesterday it two week not sure what sclerosis around right sacroiliac joint with widening maybe they will say if I got 1/2 dose feel like a bundle nerves trapped . That should be great moving get wheel chair access bet that is masive help . Paranoia wow bet that is hard to live with . I worked at treatment assessment Center in mental health ,was a job I loved , I was a member of staff who loved going out with the lads at unit I had five Christmas dinners one year apart from one with family amyway now I am rambling .o yer doctors they believe you just do not show it good . He gets five min per patient he or she five min to to tell me with most quite new problems l take a list but am looking at list when he talking so miss most of what he said . I kinda go in catch up mode am thinking what he just said miss rest when he says what u think I got blank face can not even remember what he said . Anyway thanks for taking time to chat an good luck with wheel chair access house is it or room  take care John 
  • TopkittenTopkitten Posts: 894Member Chatterbox
    Ty for replying @justJohn .

    I just about managed to avoid trying last night. I called 111 just to make sure I hadn't misunderstood about the medication but it's correct, I am on the maximum amount prescribed to people for regular use, so it won't be increased. However, they insisted on sending an ambulance even though I said it would be a waste of time. I suppose it wasn't completely wasted as it kept me from taking steps. I didn't go to A&E though because, being weekend, the only possible help (Pain Management Team) are not working. If I can get the pain to subside then maybe I can sleep and put it off for longer but I still don't feel I have much to hang on for.

    It's been a bad week and something has gone wrong every day of it and it is hard to keep going with so much going wrong. I really do find though that it is completely stupid that I, with a bad memory, can keep better track of my medication than a pharmacist.

    Yes, Sciatica is bad but with all the meds I take it isn't so bad normally. Trapping a single nerve like most people do is very similar to the neural pain I get 24/7 so it's possible for me to walk it off. This latest episode though is much more than a nerve it must be a nerve bundle, considering the size of the swelling I had and that was way worse. Every time I start to twist I feel it begin and have to freeze my movement and gently move back to release it before I trap it.

    Where I go from this point though I don't know as nothing has changed really and waiting for a letter about my PIP claim is just pressuring me further because so many people have had problems with known issues. I cannot see them accepting an unknown condition without trying to cause problems for me.

    Life stinks!

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • justJohnjustJohn Posts: 17Member Whisperer
    Not sure why nut keep having problem sign in on scope . Sorry to hear u had get ambulance I know not by choice but not good .  This heat dose not help I found sat in shade with feet on water is best way cool down . It's so bad way pip is failing people who need it . Just have to keep going to end reconsideration ect . The pain , doctors never give enough pain killers think r they worried about us over does an they get blame . I want to try some pot someone on here was saying it works but expensive just not got a clue where get it . Holding my phone is so hard like blood drains from my hand get pins needles nerve starts playing up in arm . just can not hold phone now and not see it on side . Talk again take care 
  • blacklupiefroblacklupiefro Posts: 3Member Listener
    Hi Claire Since the age of 4 I have always lived with pain swollen sore fingers and toes. Most of the time my dad bless him and my Uncle who recently died would massage me hands and feet because I would cry and get very upset. I am sad now because they both are died and cannot massage my pain anymore and know matter how much I rub Deep Relief Gel tea tree vicks Epsom salt and Listern mouth wash which is apparently good for joint pain it still hurts like now as I am explaining to you and I think life as not been fair to me because all I ever do is help and support people and I cannot even get help for myself.😣
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    Hi @Topkitten

    So sorry you are having such a bad time - and apologies for not having been here (had a few weeks of pain flare myself which limits my ability to chat without brainfog!).  
    I really don't think that unless someone has been in this situation - chronic pain with no definitive diagnosis - they can even begin to understand.  Pain is tiring, physically and mentally, and it wears you down....much as you are describing.  Depression and low mood is very common - you are not alone, and I think that many of us in this community take antidepressants.  Sometimes it just all gets too much and it is impossible to imagine carrying on like this.  How do you feel this week?  
    Are you under a Pain Management team? I know that you can't get all the answers here, but they might be able to offer some psychological help - but from your first comment it is the physical problems that are impacting on you most. Do the doctors review your pain meds regularly?  Do you have something prescribed to take as a breakthrough alongside your fentanyl patches?  You are quite right that everyone reacts differently to the various opiates - I never had any hallucinations on high doses of oxycodone - and we probably all build up a tolerance.
    Has your GP tried to get you any assistance/care at home?  I have recently been through a review of my PIP so understand how much extra stress it puts you under - from what you say it is personal independence that you really struggle with.  I am more than happy to chat about this with you if it will help.
    I don't want to ramble for too long - but please know that there are people out here to give you support.... @justJohn has given you some really supportive words.

    Keep chatting!
    Best wishes, Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    Hi Claire Since the age of 4 I have always lived with pain swollen sore fingers and toes. Most of the time my dad bless him and my Uncle who recently died would massage me hands and feet because I would cry and get very upset. I am sad now because they both are died and cannot massage my pain anymore and know matter how much I rub Deep Relief Gel tea tree vicks Epsom salt and Listern mouth wash which is apparently good for joint pain it still hurts like now as I am explaining to you and I think life as not been fair to me because all I ever do is help and support people and I cannot even get help for myself.😣
    Hi @blacklupiefro

    Have you had any other help & support since your Dad & Uncle died?  I am so sorry that you lost your uncle so recently - I am sure that your grief must be adding to your stress and pain.

    As you have had pain for so many years, I am hoping that you have been under specialist pain teams?!  Have you seen them recently and do they have OT or specialist nurse/psychologists on the team?  It really can help to talk to someone like this - or your GP it he/she is supportive?

    Have you tried any supplements for your pain?  I recently heard in a support group that magnesium can help with joint pain - a young lady was using a spray & another took oral supplements.  This might be worth exploring with your GP - there are many different types on the market so please don't take without medical advice.

    I do understand that this pain feels so unfair - no one should have to live with constant pain and whilst we can't take it away, there is a great community on here and on other social media to support you.

    Keep chatting....
    Best wishes,

    Claire x
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    Apri54 said:
    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.
    I agree @Apri54!  It does help to know that there are others out there who understand.  I wrote a blog post over the weekend about the recent nerve pain flare that I have experienced - made a lot worse in this heat - and I know I'm not the only one.  I also jerk and shake, and have muscle spasms.  
    Hopefully the pain clinic will be able to help you and give you some coping mechanisms.
    Nice to "meet" you,

    Claire x
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    janejr said:
    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
    @janejr - I feel awful that I missed your comment!  I have not been at my best with chatting on Scope recently due to a flare in symptoms - so I do understand.

    How are you doing now?  Is this heat affecting you?

    Claire x

    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • TopkittenTopkitten Posts: 894Member Chatterbox
    Ty for replying @ClaireSaul.

    I have been under the Pain Clinic in the past. Recently my GP refused to increase my medication further unless someone else made the decision. He wanted to refer me to the Pain Clinic again. I told him it would be pointless but he did so anyway.

    I received a letter from them about attending a Seminar. I rang them and told them I couldn't attend as I am housebound. They immediately discharged me as I would have to attend the Seminar to get treatment and any treatment would mean attending an appointment.

    Last night I allowed an ambulance crew talk me into going to A&E in the hope of seeing the Pain Team. The A&E doctors decided it was a neural problem I went there for without doing any actual investigation. I was asked if I wanted to see the MH team, the ability assessment team and another team but NOT the Pain Team. I did tell them I wanted to see the Pain Team but was ignored. I came home having received no help.

    Unfortunately things are not getting better.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • justJohnjustJohn Posts: 17Member Whisperer
    Hi Claire , I have read some of the things you wrote , you are a strong person . I got nerve pain , I holding my phone but not for long as my hand is raised it's not long till my fingers start to tingle then small and next two fingers go numb and my left arm gets pain from shoulder to elbow , elbow to fingers gets so badbottom of arm . Sometimes it's so bad . I had a full hip op last August , opting for an epidural . As the anesthetiser was putting needle in my spine he said that was the hardest I ever done pushing needle in what is your job , builder most my life but worked in mental health treatment assessment proud of the second job . After half hour he put the cold liquid on my legs said can u feel that , yer I saiid moving my legs feet toes. Think I must knock you out as epidural is not going to work . I was ok so when I woke I was in severe pain in my shoulder just had full hip op all I can feel is shoulder pain bad pain . This was seven pm was given load painkillers woke at six am got up walking around ward so told ok can go home . Over next few weeks my left leg started  numb with stabbing and the rest pin needles burning even base of both my feet are severe is from my but to knee on back of leg all from knee to foot . It so gets me down I was the bloke love to go out meet new people was never in just loved going out I could think holiday go Cyprus four weeks , now x3 300 ml tablets three times a day plus rest . I just would not go out now only hospital . I was the bloke at work who would take six difarant people out have six Christmas meals when working in ld mental health as I liked it . Now I am in pain I am sorry I read about people who been like this and worst for 13 years longer since aged 4 . I just do not know what is my future , can it be fixed , am just not as strong as I thought I just think it's been hell ayear next month my left side it's only trapped nerves can they fix it . I now very worried about my right hip and just can not think about it being done . So Claire think I am asking can it be fixed nerve damage dose it ever just get better on own . Thanks Claire , John 
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    I am a person with fibromyalgia and suspected arthritis . I havehhad back problems since accidents at school at 15 I  am also a lay herbalist . When my pain gets too bad , as I have had many accidents  (not my fault ) been in trampoline , diving , 2 car accidents and a broken back I've not used personally much long term medication as this makes it worse , become immune to it  etc . Maybe it's just me I do without as I don't personally want to become a walking pharmacy and a lot of stuff doesn't work for me . I use turmeric this is extremely good for inflammatory conditions so then the inflamed joints are able to function better warning though do NOT take if you are on warfarin or any other blood thinner hope you all will try 
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @wanderinggal do you take capsules or use the turmeric in food? 


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @Shreddie I have fibro and chronic pain and issues with my hands where they jerk . I think I may have arthritis in them as well. I don’t know what causes this I thought it was the fibro or the meds? It’s so embarrassing when I’m outside say shopping and the item flies out of my hands. It’s interesting to see the similar crossovers in additional conditions with fibro. My g p just increased my meds Gabapentin when my symptoms got worse and it seems to be trial and error. I’ve nevef been to a consultant or pain clinic as my g p says they are allowed to diagnose now. But I think they are out of their depth.


    I am a fibrowarrior!
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    I take capsules which I make myself they take a little of pain away but they  mostly for inflammation and this in turn can help a little with the stiffness as it's all over . My fault though I should be going swimming and do stretches but dont always have time or feel tired and depressed like most on here . I found the best thing was when I was at back clinic refered by Dr and was to do 1 hour of different stretches the hospital gave me once a week  ( you sup posed to do everyday) . A lot of stuff is helping yourself better but when you are a carer as well as really ill yourself you get rinsed out a lot . Back exercise classes are a lot in demand and you don't get a lot of weeks used to be 10 weeks I think years back but only 6 now at St Thomas . You do stuff like exercise bike ,  stretching on floor , step ups , sitting up and down properly , balancing ,  working on a large ball etc it's about getting your range of movements and getting energy up getting tendons muscles and your body to do what you want it to not listening to your broken imprisoned body self  . Turmeric can help but isnt the only thing . I don't take pain killers as I just deal with the pain after 30 years . I do when it's unbearable not sure if it's about trying to ignore the **** and having to get on being a carer it has worn me down no doubt . I am tired of it in an angry and fed up sort of way . Find myself reminiscing days when I could tie shoes without grunting and swearing . And yoga was a breeze walking up and down stairs was just so easy . Losing weight has helped a bit . I  put on a lot being depressed but found it had to change my attitude to eat and not eat my feelings.  Cut down size portions take out tomatoes 😣 cut down dairy and found I'm quite vegetarian really looking at diet more easier without stressing . It's helped a little but I'm still overweight but I'm still eating healthier losinget weight gradually
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @wanderinggal yeah I understand that. I try to put turmeric in food as much as possible and I saw online recipe for a turmeric drink but have never tried it. I feel as though my body is in stretched as I clench to manage the pain and sensations all the time. I also get restless legs. Half the time I don’t know if it’s the meds. Put on lots of weight through meds, depression and lack of exercise as I was like a zombie for 2 years and barely got out of bed. Would be good if there were stretch classes for folks with stuff like fibro as I’m terrified to even try any regular classes. I would try yoga if I knew the teacher was aware of fibro. I have a big exercise ball but don’t know how to use it lol. I get palpitations and shakes when I try to do physical stuff over 15 minutes then I need to sit down. I know where all the benches are where I live lol


    I am a fibrowarrior!
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    No sure if it would help try 10 minutes at what you can indoors vary the exercise . Go to Dr about restless legs as I'm not sure about that they said on a program about it hot and cold baths ventlasting the room so it's quite cool not unbearable cold but I don't know maybe try chamomile tea before bed ? Calms the nerves as does oats straw 
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    Also try capsules as it doesn't then get cooked I personally have 2 or 3 capsules  but not everyday just when it's unbearable ache pain and dragging sensation 
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    What’s oats straw please? Thanks for the advice @wanderinggal


    I am a fibrowarrior!
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    It's exactly what it says on the tin . It's a dried oatstraw you can add it to hot water have ito like a tea I usually give it to my daughter alongside other herbs adding it to a sleep tea . You could always try a muslin bag and run it under a running bath with the porridge oats  this helps skin for eczema but you can also drink it ( not the bath water lol ) the oat straw it's a nervine so it calms the nerves like chamomile tea would these can be all used  in a bath it can soften the skin and calms nerves also these can be brewed up like tea you could try all or singularly or try mix or 2 in a tea pot with a strainer to keep bits out your cup brew with boiled water but not boiling hot so leave the kettle to cool a little 5 minutes or so put a teaspoon of 1 or mix of 2 chamomile and oatstraw before bed . It's not too bad tasting a little like flowery grass it will hopefully help . You can get from a wholefoods . Not Holland and expensive Barrett there's a place in Brixton London not sure if you can ask them to deliver might need to get it in pound weight and maybe just try chamomile for now it's easier to obtain ☺ that's the only way I know is dry purchase 
  • ClaireSaulClaireSaul Posts: 70Member, Community advisor Chatterbox
    Just catching up with you all! Dislocated my shoulder again, so pain a bit of a problem - great timing!  
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    Oh dear poor Claire hope you feel better soon ☺
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    @ClaireSaul hope u r ok


    I am a fibrowarrior!
  • justJohnjustJohn Posts: 17Member Whisperer
    Yes I also have fibromyalgia with feel not going in shoes some mornings as legs feet swollen . I never really thought much about medication not taking it gabapentlin not doing much and 3x 300 is nine a day, I just told my doctor they are not helping he swapped them to pregabalin so only on 150 x 2 per day they not do much yet . Yer all this sh t it has real got me down had to go on antidepressants no way do I think I could stop . I done some Yoga on utube some good stuff but to much exercise , I have woke with my arm and hand stiff could not bend it at all this only happened one time what's that , yer I get all the stabbing in base of feet and hand and rest goes wit sciatic pain . I worry about why did my good arm go stiff , or the day I could not get down one step had to keep legs feet togeather put arm round a friend and slid off step had to fall off it my friend catch me . Then when typing my finger keeps like twitching just shoot out hit a letter or delete button .no I not been like this for years like a lot on scope , and it's gave me a lot of respect for all you that suffered like this long and short term . I never realised what sever pain was. Can any one tell me what the bottom of feet pain is . When pain is so bad unable to stand up few weeks back I had not ate or drank anyhing woke about 3 am being very sick Black vomit I was covered as were sheets carpit could not move I had to bin a lot of stuff . Then the tinnitus in ears like pressure in my head like air escaping from my ears . I was ok two years back . I just had pain in hips left was bad I limped all day at work I would get in my car drive home then could not get out of car f maybe a hour get in house would crawl up stairs get on bed till morning do same then one day went work could not walk had sever artharitus in left hip . The start had hip op thanks for reading John 
  • wanderinggalwanderinggal Posts: 18Member Whisperer
    Hi justjohn sounds like a lot like me same things . The feet iso called plantar fascitis it's a pain when you either stand too much on your feet or maybe eat too much rich food a little like gout it's extremely painful like you are walking on glass or gravel under your skin the only thing I could recommend is lots of turmeric . Try changing footwear , putting insoles or rubber heel things in try to alleviate feet above when sit ting at home maybe try cool foot baths to take the pain and swelling down I'm not sure what starts it for others but mine was when I moved and had bruises on the bottom of my feet from moving stuff up and down stairs it comes and goes but had it continously for about 2 years had to use walking stick but stopped as it was putting my back out they gave me a painkiller and pregablin too but never started them . Why should I go on painkillers ? Stupid woman I hear you say but why should I when I could get other help which sad to say I didn't. I'm not anti Dr but why should I just take these things they just throw at me . I got new walking boots insoles and just had to get on as I'm a carer . It's what I did I'm not waving any fingers at you . As for the fibromyalgia it's hard to treat but it stems from stress . Sounds silly but try to find something you used to love whether be writing or drawing painting something maybe try take up swimming  I don't know I do remember it being crippling and walking down road on a few times and crying in pain hardly able to get home try taking out things in diet like tomatoes look up Google for arthritis diet not saying go drastic but cut down . There's a lot of things in food you wouldn't even think of . Mine is dairy but can't stop the cheese I limit it but for me it sits in my joints . Was on a dairy free diet for about 6 years never felt better then . But dreaded wensleydale is my foe and boursin but I hope you can try this if not I won't be offended of course tinnitus I've had for about 30 years don't know how to remedy that highly annoying when you want to hear the birds and quiet when away every 5 years on holiday . Stress tea coffee chocolate smoking not drinking enough water is usual culprits they say . I also have added bonus of menieres disease where you get added vertigo and balance goes one sided 😕 
     Well hope you find any advice good turmeric is my new wonder I was always saying to others but I have it and it helps swelling and inflammation good luck

  • justJohnjustJohn Posts: 17Member Whisperer
    Hi Wanderinggal , that's so cool the information , advice you have given . Plantar fasciitis , am going to google next. I know you gave me great information and dose make sense , Yes I will take on board the advice well try the food dose make sense , I should keep a record of food I eat but I prob won't but will keep away from dairy no way no dairy , tomatoes no prob yesterday last time , rich food ok also makes sense am thinking I don't eat rich food but yer I do and more than I should yer gone . I got insteps got lots of shoes but only use one pair . Will do that with shoes k. I thank you for the advice I will have another read take notes in a min . I would do a lot of reading and should I do enjoy a good book bit of Dan Browm , or Ann Rice , or maybe science fantasy .i do miss my books . Thanks for all the advice I know I mentioned you by name Wanderinggal , but I have taken other advice on also and well I have every intention of a reply but do not , I know I should . Someone was talking about mindfulness and it was really nice to be reminded about taking a real look around , and just putting right kinda seed out to get a family of gold finches in the garden or seeing a pair of rainbows one on top of other . The best day of my life was seeing my daughter born . Mindfulness is great like putting on bit of floyed wish you were here LP I just not played it for ages or gone a concert . Well apart from simply red two year back . I am twisted up about why I am like this and why uc stopped my money as this area gone live is not rite it sure makes it hard to think about rainbows 
  • GordonmrlnGordonmrln Posts: 34Member Talkative
    Dear Clare, I too like many others here suffer with chronic pain, which I have had now for a number of years, apart from my osteoarthritis which I have in all my major joints, I also have Spondylolysis  in my neck, and I suffer with Neuropathic pain Syndrome in my left knee. This pain is the worst as the nerve damage is sending constant pain signals to the brain. And the only advice I've been given medically to ease the pain would be nerve blockers, but then the whole leg just goes completely numb as if it's not there. I don't think I would like to live with that prospect, so I will continue with the pain. But my question relates to medication, I and like most here are on a boat load of pain relief, which for me does not stop the pain but takes the edge of. I can still feel the pain but its not anywhere near as bad as it would be without the pain relief. one of my medications is Morphine patches that I change every 72 hours, but I want to know your thoughts on the news and the breakthrough that is been made with the use of Cannabis, it has been known for sometime now that Cannabis can be very beneficial to those with chronic pain, and now as the Government has just released news that it can now be given by your GP for those with Chronic pain. I wanted to know what your thoughts are on this subject, my only concern is that I would be changing one dependant drug for another, and because I'm on morphine, any changes to my medication means I have to be hospitalised because of the dependency of the morphine and its side effects. But I would like to know more about how the Cannabis works and if it has a similar dependency nature. And would it have a better pain relief than my current pain medication. If you could give me your thoughts and views on this very much talked about topic. and with the latest news from the Government, I would like to know what you think please. Thank You for your help and Advice.
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Fyi with fibro you can get pains in your feet as well. I have plantar fasciitis I think according to my g p I’ve had it before pre fibro. I walk very heavy on the back of my foot and now I find wearing supportive trainers especially ones that go higher up my ankle help with arch supports or gel inserts under my heel. I find using a microwave neck warmer heat pack under my foot with my foot elevated on a stool or the bed is really good for helping the pain. I’m waiting on physio for this. If it’s same thing they used a hand held machine with sonic waves over the area and it dispersed the spur or whatever it was. I hope it’s same this time. 


    I am a fibrowarrior!
  • sc8ttsc8tt Posts: 2Member Listener
    Hi Claire, my name is Scott I’m 36 and a veteran I’ve suffered with chronic pain for over 10 years now. I injured my knee during service I have had multiple surgeries I now have nerve pain tendon and ligament damage, Arthritis, since this I’ve developed plantar fasciitis, sciatica IBS and gastritis caused by opioids. I also have spondylitis. I hate putting that all down as I dont want to look like I want sympathy!. I’ve been down all avenues now told nothing can be done but pain meds. Some days I find it hard to keep going I have a family that need me but it’s hard sometimes and I’ve become depressed. I’m looking for any advice on picking yourself up on th hard days. Many thanks in advance for any response I receive.
  • fenfisherfenfisher Posts: 10Member Whisperer
    Hi Clair I am 65 I suffer chronic pain in my lower spine  s the result of three road accidents I have had surgery to remove damaged discs . I also have a problem with both feet metatarcels  I have been on strong painkillers for sometime now I am also asthmatic and recently had a op for throat cancer  .i have been having cortisone injections in lumber and sacriliac joints in hospital critical pain unit  I am about to start a new drug gabapentin any idea if this drug is better than tramadol
  • justJohnjustJohn Posts: 17Member Whisperer
    Hi Fenfisher , I would like to wish you well with the resent throat cancer operation , as with all you are going through. Am not quite sure if you will get this but I hope so . Gabapentlin you ask about everyone reacts in a diferant way with them . I found well I was on 900 ml three times a day , for me my nerve damage it had little effect but my dad finds them ok . To compact with transform is night n day. Tramsdol is more of a knock you out drug I sleep a lot on em not a bad thing with much pain . I went on Pergabalin I find them better . I got sever pain and worry about what will happen in few years I just had MRI scan got things going on with d 11 , d6 spine . I tthen got  acute on chronic sacroiliit the nerve stuff so tramsdol it works more on the head and takes a way some awake time from me  gabapentlin dose not  . Am sorry but that is best advice I can give . But I can wish you well and real hope things start going good for you . From John 
  • Sam_ScopeSam_Scope Posts: 6,913Administrator Scope community team
    @ClaireSaul can you help?
    Scope
    Senior online community officer
  • MikeyQuake45MikeyQuake45 Posts: 1Member Listener
    I have hypermobility, Fibromyalgia and autism. Would wearing wrist supports me beneficial or would it make things weaker and worse.
  • klaireklaire Posts: 5Member Listener
    Hello Claire,
    my name is also Claire. I have bad MUSCULAR DYSTROPHY IN 3 places. I have other medical problems too. I don’t know what to do with my problems with the pip decision makers time & the way I’ve been treated.?
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