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

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Comments

  • justJohn
    justJohn Community member Posts: 17 Connected
    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 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • justJohn
    justJohn Community member Posts: 17 Connected
    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 
  • blacklupiefro
    blacklupiefro Community member Posts: 3 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.?
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    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
    helpline@scope.org.uk
    scope.org.uk
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    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
    helpline@scope.org.uk
    scope.org.uk
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    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
    helpline@scope.org.uk
    scope.org.uk
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    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
    helpline@scope.org.uk
    scope.org.uk
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • justJohn
    justJohn Community member Posts: 17 Connected
    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 
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @wanderinggal do you take capsules or use the turmeric in food? 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @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.
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @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
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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 
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    What’s oats straw please? Thanks for the advice @wanderinggal
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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 
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    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
    helpline@scope.org.uk
    scope.org.uk

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