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

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  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    Oh dear poor Claire hope you feel better soon ☺
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • justJohn
    justJohn Community member Posts: 17 Connected
    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 
  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    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

  • justJohn
    justJohn Community member Posts: 17 Connected
    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 
  • Gordonmrln
    Gordonmrln Community member Posts: 35 Courageous
    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.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    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. 
  • sc8tt
    sc8tt Community member Posts: 2 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.
  • fenfisher
    fenfisher Community member Posts: 18 Connected
    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
  • justJohn
    justJohn Community member Posts: 17 Connected
    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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    @ClaireSaul can you help?
    Scope
    Senior online community officer
  • MikeyQuake45
    MikeyQuake45 Community member Posts: 1 Connected
    I have hypermobility, Fibromyalgia and autism. Would wearing wrist supports me beneficial or would it make things weaker and worse.
  • klaire
    klaire Community member Posts: 5 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.?
  • Kirky
    Kirky Community member Posts: 1 Listener
    Hi Claire. I too have Ehlers Danlos type 3 and I don't need to tell you it sucks. I had my first spinal surgery at 11 to correct my scoliosis, the results of which have left me with a huge kyphosis because of the degree the curve had reached. They had to go back in when I was 19 to chop one of the rods down as it had come loosr and pushed through the muscle and was touching the skin. I had my last spinal surgery in 2014 for a slipped vertebra (L5-S1) which I had done when I was 19. This surgery did not have the outcome I was hoping for and had left me with serious chronic lower back pain. I also have many gastric issues which I have suffered with all my life. In 2011 I was diagnosed with over 50 ulcers in my stomach and things have pretty much gone down hill since I hit 30. I am currently struggling with feeling like I have got something stuck in my throat constantly and this seem to be down to some dysmotility in the muscles in my throat but I suspect it could also be Mast Cell related. I also suffer with Fibromyalgia and Osteoarthritis and I Don think there's a part of me that doesn't hurt. Like u I have also had to give up work. But I took this opportunity to do a degree part time through the OU. Other than dihydrocodiene and diazepam I don't take any other form of pain relief as I am not allowed anti-inflammatories due to the ulcers. I have been debating whether or not to try marajuan? I have tried the cbd drops but they just don't seem to have an effect. Any thoughts and incites would be welcome 
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    Kirky said:
    Hi Claire. I too have Ehlers Danlos type 3 and I don't need to tell you it sucks. I had my first spinal surgery at 11 to correct my scoliosis, the results of which have left me with a huge kyphosis because of the degree the curve had reached. They had to go back in when I was 19 to chop one of the rods down as it had come loosr and pushed through the muscle and was touching the skin. I had my last spinal surgery in 2014 for a slipped vertebra (L5-S1) which I had done when I was 19. This surgery did not have the outcome I was hoping for and had left me with serious chronic lower back pain. I also have many gastric issues which I have suffered with all my life. In 2011 I was diagnosed with over 50 ulcers in my stomach and things have pretty much gone down hill since I hit 30. I am currently struggling with feeling like I have got something stuck in my throat constantly and this seem to be down to some dysmotility in the muscles in my throat but I suspect it could also be Mast Cell related. I also suffer with Fibromyalgia and Osteoarthritis and I Don think there's a part of me that doesn't hurt. Like u I have also had to give up work. But I took this opportunity to do a degree part time through the OU. Other than dihydrocodiene and diazepam I don't take any other form of pain relief as I am not allowed anti-inflammatories due to the ulcers. I have been debating whether or not to try marajuan? I have tried the cbd drops but they just don't seem to have an effect. Any thoughts and incites would be welcome 
    Hi @Kirky,
    Oh....we sound so similar.  It is so hard that EDS affects so many parts of the body and so many of us seem to have other diagnoses too.  Have you had a recent endoscopy for the throat feelings?  I also get the same, but nothing showed up on scope so I now use metoclopramide which has helped with some of the nausea and improved gastric motility a little. 
    With regards to pain killers you are in a really tricky situation with the ulcers and further irritation.  I have used CBD drops (on trial from USA) which I think helped me at night, but the problem is that all the different brands have different strengths but never seem comparable to me! I do use a CBD vape - as a non smoker it has taken some getting used to, but for bad dislocations (my right shoulder is a huge problem and really laying me low recently) and the muscle spasm pain it does help.  The only problem is the spasm reduces and then the shoulder drops further!!  Sure you can understand this!
    I haven't tried marijuana (yet!) but I do know that many people across our chronic illness networks have used it and find it helpful - I guess that in my Scope capacity I must add that you should look into the legal aspects and whether you would be eligible for medical marijuana.  Please let me know how you get on (if you try it, what your GP says etc).
    Good to meet a fellow zebra!
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    I have hypermobility, Fibromyalgia and autism. Would wearing wrist supports me beneficial or would it make things weaker and worse.
    @MikeyQuake45 - I am probably far too late in replying to you but....i personally do use supports/braces, particularly on my fingers and thumbs/wrists and my ankles.  I think that you will find many people with hypermobility do use supports or taping, and would probably advise to use alongside exercises and to not wear all the time.  I hope this helps
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • vonnie88
    vonnie88 Community member Posts: 1 Listener
    Hello claire, my husband is living with chronic pain all over his body and neck and head, he says he is racked with pain, he has had lots of different tests MRI's, doppler, Ms and they all keep saying nothing. He has got a blocked artery in his neck & head that gives him chronic headaches, the consultants words were they can't do anything on it because it's too near the brain, so when you have a stroke,,,,, yes, not if but when then they will go in and do something,  so the consultant said let's hope you have a mini stroke and not a big one, he can't sleep because of pain and is desperately depressed, the dr gave him oramorphe capsules but they are hardly touch him .yvonne
  • benjamintolmer
    benjamintolmer Community member Posts: 28 Connected
    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.

    I like your courage, it really needs a lot when you are suffering from your bad time. I too had chronic pain syndrome but it is better now. Hope you get well soon. Better luck :/
  • LynneR
    LynneR Community member Posts: 17 Courageous
    Hello Claire I've had chronic pain since I was diagnosed with Lupus in my early 20s. I'm 65 now and osteoarthritis has caused problems over the last 10 years, along with discs causing severe back pain, leading to disc removal. I've coped with all of this, I have three grown up children and worked all my adult life. However arthritis led to me having a triple ankle fusion in 2016. This left me with Chronic Regional Pain Syndrome and I'm not managing this very well. I've been waiting for several months for a place on a pain management programme. It's a lonely disease I don't know anyone who has it that I could talk to face to face and I don't know how to explain it to people who ask me what's wrong. I get very little sleep as the pain is so bad and although I try very hard to be positive CRPS is dragging me down. Apologies for rambling on. 
  • foxuk
    foxuk Community member Posts: 103 Pioneering
    Hi,

    I am sure that Scope is aware of the pressure being put on GPs to reduce opiate pain relief prescriptions. This being the reaction to problems in the USA by HMG.

    My wife is Californian and we have a large family there. There have been two relations who have suffered under the American hysterical reaction to illegal opiate use. 

    Aunt Patty in her 90s was refused an increase in pain relief as the doctor was worried about her becoming addicted. Every night she was crying in her sleep until she went into a care home where the levels of opiates acted as a chemical cosh. She died shortly after going in to care.

    Aunt Denise, who was in her youth a world champion professional archer, had her opiate pain relief reduced by 25% and due to her consequent immobility this exacerbated other conditions and she died within 9 months.

    My wife is also severely disabled with transverse myelitis (a spastic condition). She injured her back which brought on a downturn in her spasticity.  The fact that she was in extreme pain, and had only 'napped' for weeks meant nothing to a GP who did not know her history and had not read her notes, when we asked for an extra supply of oramorph to help with her breakthrough pain as we had been told to many times in the previous few years. Her reaction was to quote another doctor who had stated that 'Sleep is a luxury, rest is not'.

    When we were eventually able to get a telephone appointment with our regular GP extra oramorph was prescribed, and a neurologist was being contacted as a matter of urgency. She was the one who told us of the pressure on doctors relating to opiates.

    Our aunt Denise was a highly intelligent and 'connected' person. She researched the 'prescription drug problem' in the USA. The problem is almost totally concerned with the ILLEGAL use of prescription drugs and not connected with LEGALLY prescribed opiate pain relief.

Brightness

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