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Hello I'm Claire, ask me questions about living with chronic pain
ClaireSaul
Volunteer community adviser Posts: 92 Pioneering
Hello I'm Claire - I am a mum to 3 young adults and we have hypermobile Ehlers Danlos Syndrome, a genetic condition which affects the connective tissue. My first major back surgery, aged 21, left me with permanent nerve damage and chronic pain. I was forced to stop nursing due to my health so I started writing about living with chronic pain. Blogging along with a spinal cord stimulator & meds, helps me cope and I'd like to support you too. Ask me anything related to living with chronic pain.
Replies
Acid reflux. Severe headaches. Dup contractual . Chronic pain.
Feeling worthless .... 20 yrs.
Veteran .
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Thanks!
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:)
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 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
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Hopefully the pain clinic will be able to help you and give you some coping mechanisms.
Nice to "meet" you,
Claire x
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
How are you doing now? Is this heat affecting you?
Claire x
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Senior online community officer
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.?
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!
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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.
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Still waiting for a 'caring' consultant to get back to our GP - she was telephoned last Thursday.......
All we can do is wait. I am husband first, PA second and Carer last. Following the best course of action as a PA (and Welsh husband) my wife is the guiding mind and I follow instructions...... don't all husbands anyway? I can only ethically act against her wishes as a Carer IF I conclude that her judgement is impaired and she is in danger of harm. Many times over the past week I would have called an ambulance IF I had been allowed to.
The obvious answer is to increase her doses of Gabapentin and/or Baclophen to reduce the spasticity. But what would I know, I'm just the Carer?
There are now secondary problems the most concerning is oedema. In the past her skin has actually split when it gets very bad and this also seems to trigger spasticity in her legs.
One of the problems is a single research paper in Canada which links Gabapentin and opiates with deaths. Having read the paper I find it statistically questionable, with a low sample number and a 49% increase in risk on a fraction of 1% rate - surely within statistical error with a sample of only 1200? (figures from memory).
The other problem is me. I actually scored higher points on PIP than my wife BUT as she is bed-bound and I am semi-ambulant I and the effects on me are totally ignored.
Sorry to be so ratty but I am suffering from lack of sleep and pain - there's no way they will increase my pain relief, no point in asking..........
Nothing we can do except wait.
I have a couple of questions Clare
Could the fracture in my spine have been caused by the insertion of the rods with the spinal implant (which I also had inserted at St Thomas')?
I have recently begun to sweat excessively, feel nauseous and have many headaches (which didn't happen previously). Could this be related to medication and if so which do you recommend I change?
I have been taking pregabelin, Toviaz, ranitidine, lansoprazole, dihydrocodeine, tramadol, paracetamol, clopidogrel, atorvastatin,
I hope this week has been kinder to you and that you have been able to get some sleep. We're always here if you need to talk.
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I hope you are having a good day.
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I have applied for carer's assessments twice before. In the first instance one was not even attempted and the SS advised that my wife and I give up caring for my parents and move out. This was the only solution they would discuss. The second time was after my mother had died and I had suffered a full dislocation of one of my knees. To cut a long story short the SS were attempting to get control of what they incorrectly thought was my father's house to fund his care and my wife and self were again to be left to care for ourselves. As soon as they realised that the property was jointly owned by my father and self they lost interest. These situations were given much publicity a few years ago. We receive nothing from the SS except a phone call every couple of years trying to SELL me their extortionately priced (they admit cost but will not quantify) shopping service - they seem not to have realised home delivery and internet ordering fill their function for FREE!
My wife has deteriorated and the oedema has caused cellulitis, we have had home visits form our GP and a neurological specialist. BUT they are both on holiday this week so it's Monday before I can try to force any progression. The GP has authorised an increase in morphine and the specialist has increased her Gabapentin pending a change to pregabalin. The prescription for pregabalin was faxed to the chemist last Friday BUT as a controlled drug the chemist could not accept a fax. Then there was a bank holiday and then a 'mix up' with the paper prescription. The pregabalin arrived today a full week after an emergency fax request.
I am ignored in the main. I predicted the cellulitis two weeks ago. If the back pain had been treated it would not have triggered the downturn in spasticity. The oedema triggers spasticity which prevents moving from chair to bed where legs can be elevated which increases oedema. This is a downward spiral that could have been prevented if any of the medical profession had actually listened to my wife or me as her 24/7/365 Carer. Why don't doctors listen anymore?
Our regular GP is good but part time, which causes problems. The consultant explained very diplomatically that a GP surgery may have one patient with Transverse Myelitis every couple of decades and it is a very rare condition. Why the hell can't the majority of doctors admit when they don't know? Our regular GP admitted this openly, but the others we have dealt with have just assumed things and were not prepared to listen when obviously wrong.
Hi @Rifi7, sorry to hear this! I have cerebral palsy and my pain is always worst during this time of year! The cold weather always knocks me. I hope you are keeping warm!
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Do you find your mobility is more restricted? Yes I’m trying to keep warm. I brought myself a wireless heated back belt. Keeps my back warm but now my knees and ankles are swelling and causing my leg to be more numb. I have spina bifita and I’m hoping the cold is causing my leg to go numb and not that my condition is getting worse. Chloe how does your condition affect you?
Let me know how you are getting on!
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Hope you are keeping ok during this latest cold spell!
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Hi Claire, thanks for your message. My GP advised me to drop the ranitidine and the Naproxen which has helped with the sweating and nausea. However dropping the Naproxen has obviously resulted in more pain in my joints. I am woken up every night crying with pain. I don't know what to do and with all the pain I have I can't get comfortable. The only position I can tolerate is lying down on my side. Not much help for carrying out normal daily activities! My mam bought me some sticky heater pads to put on my knees which help a bit too take the edge off.
Thanks again
Nice to meet you. I also have nerve damage in spine. The heated belt I wear is the
Beurer Mobile Heat Pad HK72. It’s wireless so you just need to charge the battery and put it inside the belt. It really does do the job.
A question on a type of pain, in 2012 I went around a corner on my motorbike coming the other way, on my side of the road was a lorry, I tried to push it out of the way and ended up in hospital with my forearm bones protruding through my elbow by a couple of inches. After an initial operation the doctor told me that they genuinely didn't know what to do and to prepare for, et the worst losing my arm, another doctor came in the following day and said he was an upper limb specialist and he would have a go at a fix. His aim was to make it stiff and pain free. It actually went the other way. Despite his best efforts, and he was brilliant, it came down to a choice having a false elbow, which he didn't recommend or a fuse, which I opted for. After a series of operations culminating in the fuse, I have been left in severe, constant and annoying pain. At my last appointment in 2016 his diagnosis was of neurogenic pain. I was told that I was to see my GP for pain relief etc. Well, I've finally got here, 1 can you possibly define "neurogenic pain" and 2 am I stuck with it or will it disappear in the future.? I take zomorph 12 hourly and gabapentin 3 times a day.
Any thoughts, information and advice would be greatly appreciated.
Thank you for this thread, it may prove very helpful moving forward.
Best wishes
Gary
It usually happens when I'm in bed and gets worse when I stand up. I'm scared to go to sleep in case it happens.
I was just wondering if these kind of pains sound familiar to anyone and what I can do to ease an 'attack'.
Many thanks.
Just wanted to check in to see how you are getting along as there wasn't a reply here.
I'm sorry to hear about the really bad pains you have been having, have you been able to get some help to manage them?
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Pain levels are varied but currently trying some different pain relief which are working but too much on too of my existing drugs so just trying to balance things out.
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