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Feel like I’m being accused of addiction

Si_Obhan Community member Posts: 34 Courageous
Hi everyone

Just looking for some advice or even just to rant a little bit.

Bit or background. I have vascular Ehlers Danlos Syndrome. It was diagnosed in my early 20s as hypermobile for which I’m a permanent wheelchair user now. I’ve had children and during pregnancy had a rupture and later hemmorages. I’ve developed a hemmoragic bladder (sorry my spelling is terrible) which is something people usually get after cancer treatment. Basically the inside of my bladder bleeds continuously like an open wound. It’s not the same as another very painful condition called interstitial cystitis, but the pain is apparently similar and interferes with my daily life quite a lot. I’ve been referred for a cystectomy (bladder removal) but due to the vascular complications they have opened for a sacral nerve implant instead. The problem is the trust will not fund it for my condition and I’ve had to apply again. Otherwise I lose my bladder.

Being hypermobile also causes problems with my costochondral joint. I do not have costochondritis per se but anyone will tell you that pain in that area of the chest is called “heart attack” pain for a reason. I was offered 4 joint injections of steroids into the cartilage but was told there isn’t much point as my pain will likely come back and they can only do so many injections. That treatment is usually for people with acute conditions. I was therefore told to avoid lifting and weights and manage my pain relief to keep the pain at bay. I have stopped wearing underwired bras and don’t lift anything heavier than a kettle which my loose wrists stop me from doing any way. When I cough or get hiccups we press a pillow over my ribs to hold them in place to prevent them from slipping. Doing this I have managed to avoid hospital admissions for pain management and pneumonia from not being able to breathe in properly for 2 years now... which is an achievement for me :)

I was prescribed zapain (high strength cocodamol) years ago to manage the pain associated with EDS. After the last hospital admission for the rib pain I was put up to the full dose of 8 per day. I was also on amitryptaline for nerve pain, smooth muscle relaxants for my bladder and some other things. I am allergic to aspirin so I can’t take non steroidal anti inflammatories which is just unlucky as they would really help me if I could take ibuprofen, naproxen for the swelling in my joints. So instead I’ve just been on opiates to manage most of my pain. I’ve got over the tiredness and constipation they cause and they work really well for me. I can tell when I haven’t had them and I’ve never overdosed or misused them.

I don’t wish to come across like I’m obsessed or consumed by my pain, I’m just trying to explain why I was put on such strong pain relief 6 years ago.

The bladder pain is still very bad despite taking this high dose and the pain team refused my referral saying that urology should be dealing with the physical cause of the pain before referring me for pain management or therapy. Urology referred me to neuro pain specialist who put me on pregablin ALONGSIDE the zapain and it says this in his letter. Taking the pregablin and zapain has changed my life. If it weren’t for the blood in my pee I could probably live with my bladder the way it is if they work forever. It’s lessened the pain a lot.

Recently my prescriptions have been getting smaller and smaller with no notice or reason. I would order my tablets and they used to last me a month. Recently I get 100 zapain which lasts 12 days. I asked at the GP surgery and they said the pharmacist who manages the prescriptions does it to force people to book in for a med review. Why not just tell me that?

I booked in and straight away without asking me about my conditions or looking at other medications he told me that I have to come off the zapain because they’re being replaced with the pregablin. They’re two different types of medication for two separate types of pain. The zapain helps with the joint and especially rib pain and the pregablin helps with the bladder and bowel pain.

He said he had been to a conference on addiction and that morphine based medication is the worst medication there is and that no patients at the surgery will be on it long term unless they’re dying.

He also kept saying that I would be walking again within a year on his new regime. I use an nhs electric wheelchair that my OT went to a panel to provide for me and they agreed unanimously that I need it as my hips and spine are loose. I was also refused repair surgery on my knees and ankles after dislocating them badly in an accident because of “the likelihood of further surgery needed during [my] lifetime” and they were “loathed” to refer me for surgery due to vascular complications. I have nothing keeping my ankles and knees in place but he said if I went out more in the sun and enjoyed life I would be walking. I admire his optimism but it really offended me like it diminished the struggle I’ve had learning to use a wheelchair and accepting my life is different. It wasn’t a choice. The muscles in my legs have now deteriorated over 6 years to the point where I don’t think I could walk much if I tried. I am happy with my life for the most part. He also thought I had fibromyalgia at first until I tried to talk about being diagnosed with EDS 10 years ago and having hip dysplasia as a baby. He cut me off and said it doesn’t matter what I was diagnosed with years ago and to focus on walking now.

If I tried to say anything he basically accused me of being addicted to pain relief. I’ve started doubting myself and whether I’m in pain at times but then I remember the days spent crying in agony at 17 when I tried to pee and I was on no pain relief then. This isn’t a trick by my body to make me take tablets.

Due to all of this I just wanted to get out of there to be honest. I agreed to reduce my medication to nothing over 3 weeks which I’ve been doing as I have no choice due to the amount prescribed. Well what can I say, I’ve been in bed for 2 days. My legs feel like they’re in a vice. My bladder is burning and the “crinkley” feeling is coming back in my ribs when I breathe. My plan was to tell my consultant in August as he knows how bad my bladder is. That feels like an age away now though, 

Ive also been told this may put my op funding in jeopardy as they could use the excuse I could manage with pain relief like they did for my last treatment. If I’m not taking it then they will say I could manage if I was, and this could delay am everything further. I called the surgery and spoke to the pharmacist about this and he said “sometimes in life you have to lie to get your own way. So for your own health purposes you are taking 4 per day now which I’ll allow until they make the decision... but if they ask you are taking 8 sometimes a toxic dose”. I don’t know what to think, this is unprofessional but he wasn’t horrible to me about it, it just seems like that’s the way he talks, a bit unorthodox kind of thing.

I guess I don’t like a pharmacist, not my GP or my consultants can have the ultimate decision about what medication I take when they don’t know a thing about why I’m taking it. I know they are very qualified and I respect their profession but is this normal? I thought that the surgery usually just does what the consultant recommends? I also feel I’m being lumped in with addicts when I have no negative effects of taking the medication but it improves my life so much. The gist of what he was saying is that I have nothing to fall back on when it’s very bad if I’m taking the full dose every day. The thing is it’s always bad until I have surgery. Am I being unreasonable? I’m scared that tomorrow the rib and bladder pain will be so bad I’ll start having horrible thoughts again... I could just take more tablets but then what do I do when they run out too fast? My prescription just says 1 to 2 tablets up to 4 times a day as needed. It’s the amount that’s the problem. When I’m in hospital they come round with x2, 4 times a day, and tell me the reason my pain is so bad is because I’m not taking the zapain regularly for it to build up in my system and help with the pain.

(also just to say I can’t change surgery as there is no other surgery where I live without getting a bus for 10 miles - small town probs). 


  • EmmaB
    EmmaB Community member Posts: 263 Pioneering
    Hi @Si_Obhan
    The short answer to your question is that long term use of opioids is not effective for most people [with non-cancer or non post op pain]. 
    Unfortunately opioids are indeed addictive.  Many people don't see this type of addiction as being the same as being addicted to something like heroin or cocaine or whatever but they are addictive nevertheless. 
    Because it has been recognised that opioids are not effective for long term use for most people there is a move to try and get people off them.  Taking opioids long term is also problematic because they can come with a range of nasty side effects and they can actually make you more sensitive to pain [hyperalgesia].
    You may find this video interesting - Louise was using a lot of opioids, she really believed she needed them and thought her consultant was mad for suggesting she should come off them but what she actually found was that when she came off them her pain was far less and she got rid of a nasty mix of side effects [which she thought were as a result of her conditions but which were actually 'just' side effects]:
    You might also find my article on pain management of interest, from page 41:!page41
    This is quite an emotive issue for a lot of people mainly especially when people have been taking them for a long time, they feel they 'need' them and from an addictive point of view they do - that's why someone in this position needs to been weaned off them - and this process is NOT easy, as you are finding out.... but hopefully once you come out the other side hopefully you will feel better.
    I hope that helps.

  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Hi Si, I was going to say similar things about opioids but Emma has already advised you about them.

    I will just add that I go to a hospice for respite and know they use opioids a lot for cancer patients. These meds, as well as being highly addictive, can cause kidney damage. Giving them to terminally ill people does make that less a concern.

    I was given oramorph for hip pain, but realised I needed more and more, so weaned myself off it.

    EDS is a little unknown condition and as to how serious it can be. I have read about it before and do realise it`s implications. I feel for you and I understand how life in a wheelchair can be very limitating, but at the same time, it does give us protection from falls and possible bone breakage.

    Like you, I thought GPs prescribed meds which consultants say we should be given.

    It sounds like your GP and consultant are not working together to give you the best treatment.

    Sadly, you are in a vicious circle re meds/pain/meds.

    I don't have any advice to offer...wish I did.
    Best wishes Pollsxx

  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    Thank you so much for your replies @pollyanna1052 and @EmmaB

    I am just looking through the info you gave and it’s really helpful. Sorry for my rant!

    I know that someone can be addicted to cocodamol and have thought sometimes that I might be because I feel depressed when I don’t take them. I find it hard to tell whether this is because I have missed a dose or because I’m in pain.

    My issue is that I haven’t always been on such a high dose and when I wasn’t I was in terrible pain that wasn’t being managed. Two years ago I had time off at Christmas so did an experiment in myself as I’d convinced myself the bladder pain was worse due to the cocodamol. I came off them for three weeks and just dealt with the joint pain etc. The wheelchair helps a lot as I no longer step funnily and dislocate my ankles and I don’t feel constantly in pain all over my body from moving. I actually enjoy being out in the sun for the first time in my life as I have postural hypotension as well. It has changed my life for the better.

    I thought I was doing ok off the zapain until we went away for a few days and the bladder spasm pain came back. My friend was going into cafes and filling up hot water bottles for me to use while out and about until the point where I was crying my eyes out in pain on a bus and ended up stuck in a public toilet in the Lake District with someone threatening to call an ambulance as I could only talk through gritted teeth and was sweating buckets from how bad the pain was. We ended up taping loads of tena lady together into a nappy so I could just pee myself on the train to relieve the pain of not going to the toilet. Sorry for TMI. We came home early and it ruined everyone’s time there. I can’t explain how bad the bladder pain is when it “flares up” but It’s like having cystitis x100. It will start off as spasms and then if I don’t pee immediately I get this excruciating pain that just continues in waves until I pee. I have passed out in work meetings from not being able to pee immediately and it’s so embarrassing because you can’t tell people. Sometimes I can’t sit upright because of the pressure on my bladder. We’ve tried everything and the cystectomy was meant to be the last resort a few years ago. I was told that my skin is possibly too fragile to handle the stoma bags and the surgery is risky, so to manage the pain instead. 

    I’m also having rimso installations again that I tried a couple of years ago but were too painful. My urologist now thinks that because they give me 1 to 2 days a week of relief where I can go out and not be sat by the toilet that it’s worth the pain I get while doing them. It hurts a lot for about 12 hours after having the catheter in and I was given oramorph and I still able to use an hour beforehand so the pain isn’t so bad when it’s put in (I have a really narrow urethra despite having dilation). Last time they said because of that pain I wasn’t tolerating the treatment and cancelled them. I’ve been referred again and was hoping to at least have the oramorph to help but been told that’s a no as well.

    Without some form of pain relief I just can’t have that treatment. I wouldn’t get home. I don’t drive and my hospital doesn’t have patient transport for wheelchair users as they can’t afford someone to drive the minibus and power chairs are too heavy for the ambulances (long story). I have to get three buses to hospital and it takes me over 2 hours which without access to a toilet is demeaning. I pee about 40-60 times a day presently. The urology department do all they can for me like you’re meant to get up and dressed and keep the rimso in and pee it out after as long as possible. With me they said my bladder tries to expel it straight away so they get a separate room and let me lie down for up to an hour until it becomes unbearable. I’ve managed 15 mins before the pain made me physically sick during the treatment. 

    My worry is that level of pain coming back which seems to already have started. If my bladder was gone or they block the signals to my brain like planned then I could probably manage with no cocodamol. I don’t want to be on zapain forever it’s just the timing seems really bad.

    Sorry for going on with myself, it’s just hard to convey how bad the bladder pain is. I wouldn’t wish it on my worst enemy if I had one. But it’s always been this bad since I was 17. My gran, sisters and daughters have the same issues with bladder and kidneys. It’s definitely not being caused or made worse by the medication but it has helped to relieve it so that I can function somewhat. I know this because 2 years ago I left my job as I was in the bathroom most of the day but now even though I have the overactive bladder the pain is a lot less until I do something silly like eat an orange or go over too many bumps in my chair.

    This is just my thoughts ? I don’t have anyone to talk to about any of this 
  • EmmaB
    EmmaB Community member Posts: 263 Pioneering
    Hi @Si_Obhan
    I know just from when I get the occasional stabbing bladder pain it's not something I'd want to live with!
    Do they actually know why you have so much bladder pain?  It sort of sounds like they don't really know?  Therefore it's quite difficult to treat something if you don't know what it is...
    Also have they suggested any other pain management strategies - for example movement/exercise, mindfulness, relaxation, pelvic floor exercises, massage etc
    I hope you can find some alternative ways to manage the pain as there are non drug routes even if you only use them to compliment any taken.
    All the best.

  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    @EmmaB I’ve seen 5 consultant urologists in the last 15 years and at first I was diagnosed with recurrent infections and kidney infections as there was bacteria present. Something in my genes means I’m susceptible to infections as my ureters lets urine back up to the kidneys. Two of my close family members had surgery to correct this but I’m the oldest and it was missed before it got “chronic”. Despite all the infections as a child my kidneys function well, but I have a lot of scar tissue and ulceration in my bladder. The urologist who has been helping me for 4 years and did my dilation under anaesthetic said my bladder stretched about 3 times more than she thought it would and they stopped the hydrodistension as it didn’t stop stretching and just tore and bled. She’s 99% sure this is a symtom of EDS. It’s like my bladders I’m a vicious cycle of stretching and tearing because the scar tissue isn’t stretchy. So I have moderate to severe bleeding. My bladder capacity should be high but I can only have about 15-30mls in before it causes pain like I’m bursting, which isn’t a lot at all. That doesn’t worry me any more as I know what it is and what my pee looks like, how often I have to “go”. It’s just the pain that wears me down.

    I’ve tried allsorts over the years, bladder friendly diet, no caffeine alcohol or smoking, yoga, Pilates, therapy, Botox, instillations, tens machines, hydrodistension, natural yoghurt, long term antibiotics, acupuncture... the only thing that’s helped slightly is pain relief (admittedly it doesn’t fully work), heat, lying down to take pressure off mI bladder, the strict diet, drinking 2l of clear fluids a day, and the rimso instillations which by some kind of magic considering how horrible they are to administer do give me 2 amazing pain free days each time. They should last between 2 and 4 weeks though and as I couldn’t tolerate the full dose/length of treatment the hospital trust didn’t want to pay when they went from £112 to £750 a dose - my doctors were quite honest about this which I’m grateful for. Thankfully they are amazing and aren’t giving up on me :) my last urologist said he didn’t know what to do and discharged me 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    Hi I've had similar from my doctor regarding pain killers ect. It ws the consultant at the hospital that put me on most of my medication so I told him I am not changing them as finally they are working a bit send me back to pain management and if they say change any then so be it. 
    All that kind of medication needs to be reduced gradually as would be a shock to your system going from a high dose to none. 

  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    edited February 2020
    @Firefly123 did they allow you stay on the doses you were on?

    I’ve got the pharmacist to agree to prescribing me half the dose I’ve been on for 2 years... until they make the decision re my funding for the op. Well officially the dose hasn’t changed as it says “up to” 8 per day... but he has only given me enough to last a few days if I took 8 of them so I have to make what I get last a week. 

    He said that way I could say I’m taking the max dose when they’re making the decision.

    After that I have to come off them. I doubt immediately after the surgery that will be a good idea but I do want to stop taking them when they cure the bladder pain. I’m still waiting for them to do that as per my very long whinge above.

    The last few days have been awful. My children are off school with a bug and I’ve been in bed the whole time. I don’t fully know yet whether the pain I’ve got in my limbs and joints is arthritis or withdrawal. It’s like being run over/flu kind of pain. The headache is not so bad. I had worse giving up caffeine years ago. I have prorpanolol for migraines so that could be helping keep the headache away. It’s there but hasn’t got any worse for days. Other than that I just feel a bit down. When I take the zapain I get this warm fuzzy feeling that isn’t there any more. When I am taking the 4 I’m allowed they’re making me feel sick which has never happened in the past.

    I feel a bit better writing this down as don’t want to burden my family with ins and outs. 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    I'm on the maximum dose of pain killers so yes have kept me at the same does until I get a medication review from the pain management clinic. I'm on so many meds for all different health problems so got to be careful adding or taking away any.
    If pain management says I should change to a different pain killer then they would reduce my dose gradually and introduce the new one. 
    So it's not a shock to my system. 
  • woodbine
    woodbine Community member Posts: 12,112 Disability Gamechanger
    OP does your local hospital have a pain clinic? (most do now) if so ask your GP to refer you.  I had my meds reviewed by the surgery pharm. last week I take 19 different meds and made it clear (nicely) that I wasn't coming off any of them.!

    2024 Election won

  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    Unfortunately the pain clinic have refused my referral until the bladder problem is fixed because that’s causing most of my pain. I was under them and they put me on the tablets the GP’s pharmacist is trying to take me off. I saw a different pain clinic at another hospital as a “favour” to my surgeon and they put me on pregablin alongside the zapain. I think the pharmacist thinks that I’m supposed to come off the existing ones because I’m trying something new but as far as I’m aware that was never the intention. My next appointment with the consultant surgeon is in August (put back, should have been last week but no decision on op funding yet). I was hoping they would write to my GP surgery saying not to mess about with my medication but obviously that’s going to have to wait now. Waiting list to see the surgeon is about 2 years, I’m lucky with the frequency I see them now.

    I get passed from pillar to post a lot with EDS, as there isn’t really a specialist I can see. I still have the letter on my phone because someone in my bladder support group accused me of exaggerating (I wish I was) and said that referrals cant be refused... but yeah they won’t see me until the physical problem with my bladder is fixed. 

    At the moment I’m at the mercy of the GP surgery until I can see the specialist again.
  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    Thank you so much for the suggestions though, it’s really made me have a think about what I’ve been through with all of this and that I can’t give up fighting to get it sorted. In the past I’ve been told nothing can be done and just tried to accept that until it got worse. I’m not going back to work and having this ruin my career, education or even another holiday again. Part of me thinks just take the tablets as I’ve been taking them and make a Gp appointment when they run out? Just to make it clear I accept that my body may be addicted to them but I feel this is the worst time to come off them. Is that something an addict would say? ? 
  • Firefly123
    Firefly123 Community member Posts: 530 Pioneering
    I'm sure we probably are addicted after a period of time why we need higher doeses to ease the pain. I would definitely not accept my pharmacist try to change any of my medication without a consultant seeing me and coming up with a plan of action. 

    We would all like to not need any medication and to be healthy but we have to deal with the hand we are dealt in life. And make it as pain free as possible and keep some normality when we can. 
    We are worriors ☺ x
  • chiarieds
    chiarieds Community member Posts: 16,162 Disability Gamechanger
    Hi @Si_Obhan - I'd just like to say I have a little understanding, as I have the hypermobile type of Ehlers-Danlos Syndrome (hEDS), whilst appreciating that the vascular type is way more problematic.
    Not to minimise your problems, but there can sometimes be an overlap between the different types of EDS, & I had a post-partum haemorrhage that lasted 13 days with my first child, & 2 of my children also had features of the vascular type of EDS.
    EDS is a difficult thing to treat, as non-steroidal anti-inflammatory drugs (NSAIDs) just don't work as I found out after my diagnosis. It's often found that we have common allergies & unusual sensitivities. The latter means that some meds just don't work, or you need more of a med to get it to work compared to someone who doesn't have EDS. Local anaesthesia is also problematic.
    I also have Chiari 1 Malformation associated with my hEDS. The neurological pain from this is even worse than my joint pain. Like yourself I tried different things other than meds, but ended up on Fentanyl patches. One was supposed to last 3 days, but I was back in a world of pain 24 hours later. So my last GP had me with a patch on each arm, changing one daily. I hate to think what level of opiates I was on for about 7 years! I decided to very slowly wean myself off them over 4 years ago.
    My current GP agreed I'd done the right thing. He had had a patient with the classical type of EDS (the founder of our EDS support group), & he said that the pain of EDS is recalcitrant to treatment. He also thought that long-term use of opiates in anyone just doesn't work.
    With EDS we have faulty collagen, which is in every part of your body; I'm dreadfully sorry to read how much this has affected your bladder. Of course, I've no idea of the pain this causes, any more than you might try to understand my neurological pain.
    I can honestly say I have to manage my pain daily, but my pain has not been worse since coming off opiates.
    Please do look through the info @EmmaB has given, as she has a great understanding about opiates, & alternative ways of coping with pain.
    If you haven't done so, you might also consider joining our EDS support group, which also has a section on managing pain. See:
    Anyway, just wanted & hoped to reach out to you as someone else with EDS, & thank you too for reaching out to this very supportive community. I hope you know you can talk here any time. My best wishes.

  • Si_Obhan
    Si_Obhan Community member Posts: 34 Courageous
    Thank you for your reply @chiarieds, as you can probably relate to there are so many things I haven’t mentioned here like my swallowing problems and tmd. I got so overwhelmed at one point I decided to deal with the worst thing first and go from there. In my head this was bladder, ribs, fingers dislocating... but now my esophagal dysmotility is slowly overtaking the rib problem in terms of urgency because the constant coughing and choking is making the ribs and bladder worse.

    I’m sorry to hear you have chiari, I’m a member of EDS UK so I do know a bit about it. Please can I ask was it easy to get a diagnosis?

    Re the vascular side of things. Kind of a long story but I had a cerebrospinal fluid leak which still causes me postural headaches, from a lumbar puncture when I was 17. My doctor doesn’t know who to refer me to. What happened at the time is I had a cold/flu illness which caused horrid sinus pain. Work were on my case so I went to the walk in centre to see about some kind of pain relief as it hurt to move my head and the nurse noticed a petechial rash all over me. She gave me a shot of penicillin and called an ambulance. It turns out I didn’t have meningitis and they didn’t know what had caused the rash. Of course now we know it was the sneezing which had broken all of my blood vessels on my face and chest because it happens every time I so much as look at my skin as I get older. It happened again when I had another bad cough a couple of years ago. My eyeballs turned purple and I had these massive purple blotches all over me. I was being told if I have a non blanching rash go to a&e etc and I mentioned I think it’s happened from coughing. I was sent to rheumatology again who said they couldn’t help with that kind of diagnosis and I got lost in the system a bit. 

    My mum was accused of hurting me as a child because I had bruises all over me and my shoes made my nails come off. My hair used to fall out in tufts so obviously to my school seeing a child covered in bruises and missing patches of hair and nails was concerning. I grew up with my dad who says I had hip dysplasia but nobody took me to a doctor ? we just don’t do that in our family, if you die you die.

    As I got older I started to faint during PE or on fairground rides and I’d be told I wasn’t eating enough. Then during pregnancy I had SPD so bad I couldn’t walk.

    I feel like I actually have more symptoms of hypermobile or type 3 that I was diagnosed with originally but they did note the vascular complications and what with my bladder other bleeding problems like constant nosebleeds I was eventually sent back to genetic testing to find out in case it would affect the ileostomy. I don’t feel any different and still adamant I have some kind of crossover type.

    I’m aware of anaesthetic resistance as without going into gruesome detail my epidural wore off mid c section which was an experience, but I didn’t know about the medication side of things.

    I’m really tired so I haven’t replied to everything and not even sure I’ve even written my own sentences in order but hopefully it’s legible. Can’t sleep because of this bladder now. I haven’t had pain this bad for weeks. Could be worrying is making it worse X

  • thespiceman
    thespiceman Community member Posts: 6,379 Disability Gamechanger
    edited February 2020
    Hello @Si_Obhan   Pleased to meet you .

    Sorry to hear what you are going through.

    I am one of the Team of Community Champions on the forum, I have been reading your post.

    Please if I can suggest a number of links to organisations, additional guidance and advice.

    You mentioned bladder support group got these ones if they help further.

    Bladder and Bowel

    Telephone 01926 357220

    Helpline 0121 7020820

    Also have For Pain this one deals with Chronic Pain how to deal and cope any problems.

    You briefly mentioned depression and problems with the medication being addictive to this. I do understand this .

    I have mental health and addiction history do advise the community as in my role of Community Champion.

    Alcoholism and drugs although this does also gives me a lot of insights to those with medication problems finding them addictive.

    I had this myself with certain medications.

    With my knowledge is a concern.

    This organisation offers a lot of support those addictive if they need help and advice some support with medications.

    I would look at this one.  You can talk to an advisor.

    Helpline 0300 123 6600

    I used these before as had serious problems with pain killers over the counter ones.  With my coming off alcohol.

    Also spoke to them regarding my other problems my alcoholism but do have a lot on the website on opiates, painkillers and other medications.

    If you are concerned your becoming addictive to the medications you are taking please speak to them, great support.

    Not only the concern with medications we all take the organisation has a lot of support groups and relevant information.

    My friend @EmmaB and my friend @chiarieds given you excellent advice on any problems with this.

    Mention problems with GP  and medical professionals .

    Might be worth looking at Mental Health charities for two reasons.

    Help with your mental health look at your pain and anything thing can advise on.

    The other one is to be speaking on behalf for you, in the Doctors or any medical professional.

    Being supportive and having some one to be compassionate, understanding can be useful.

    All charities take clientele with disabilities as well mental health problems.

    Just might be another source of support to advise you on various issues your having.

    Well as dealing the symptoms of depression, many staff aware of many aspects of health.

    Please consider looking. You can self refer or speak to your GP.

    Might not be in all areas.

    Last charity is an advocate mental health one, speaks for you concerning.

    Any issues with Doctors and those medical professionals.

    Please if I can help further or need to ask any thing, please get in touch.

    Your a valued member of our community.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • RishiBell
    RishiBell Community member Posts: 2 Listener
    I'm sorry to hear about your pain management problems. Communicating with your counselors and advocating for medications that improve your quality of life is essential. I can imagine how hard it is for you but don't give up hope. Continue to insist on the treatment options that will work best for you. If necessary, get a second opinion from another medical professional specializing in your condition. You deserve a comprehensive approach to treatment that considers all aspects of your situation.

  • juliie
    juliie Community member Posts: 2 Listener
    Hi, I've only just found these posts and my heart bleeds for you and I have to say I know the doctors are fantastic etc but especially your GP I feel should have more compassion, does he know how it feels to be in chronic pain 24/7  I doubt it and addiction or not they " the doctors are the ones who gave you those pills in the first place. I know that the info on opiates has changed over recent years.
     I'm just going to change track for a second to give you a bit of my history. My name is Julie I'm a wheelchair user who has chronic complex pain syndrome . 31 years ago age 32 I missed a step and broke my ankle, put in cast 6wks later off it came and I've never seen anything like it,  it was blue black red still very swollen and the pain was like it had just happened, from there it was a year of Monday to Friday physio followed by hydro and the pain got worse day by day then the next 2 years were spent in and out of hospitals 3 chemical sympathetic nerve blocks ouch! Then a surgical sympathectomy, 2 discs removed and i was the second person to have a spinal cord stimulator when they turned it on for the first time wow! it really masked the pain. 3 days later it was back we'll try again they said 18 spinal ops and an abscess on the spinal cord. They sent to the royal London to see top neurosurgeon in the country "oh I can fix that he said" 3 more ops when I threw a dicky fit and said enough get it all out of me just give me the meds. So since that day I've been having spectacular amounts of everything and especially opiates.  MST first 860mg per day then about 10 yrs ago pain clinic put me on a matched dose of oxycodone, tegrotol, amatriptline, gabapentin, amitriptyline, paracetamol  and lots of others side effects weren't good but oh the  pain relief was great and as the days turned into weeks so those pain scores dropped  not to long after this I asked my pain consultant I must surely be addicted  to all this , he laughed and preceeded to tell me that my body was using those drugs in a different way I couldn't  see it myself but he was the consultant. So over the years the dose has gone up some things added some stopped like the amatriptline I felt clearer when that went. Just before covid he suggested I try to reduce the oxy, but for me the oxy goes down and the pain goes up, I've tried several times lasted for 8wks but to much pain I can't function so he put it back told me to try not to take to many extras and gave me some nafopram for those really bad days.
    The point of me telling you all this is to say you are an individual and if it enables you to get off the bed in the morning and to live your life semi-pain free then stop worrying about being called an addict, talk to a different GP, write it all down so you can give your reasons and take support with you.  If it were me I would also give your consultant's secretary a call and explain what's happening I've always found them to be a great help.
    On management of pain to keep the drugs down I imagine my pain as a piece of paper inside my skull and I scrunch it into a tight ball stamp on it and kick it into the back corner of my head ( who knew heads had corners)  i never let that paper flatten out this is war, it takes lots and lots of practice 30+ yrs, nights are the worst he's fast asleep snoring and my pain is knocking on a 10 so after the paper I do 2 things play some random stupid game on my tablet and I listen to an audio book with headphones in but volume up something for the hands and the brain, distraction distraction, stops you wanting to cry and scream.
    I hope that all this rambling offers you something, but you've got this you are a superstar so take what you have to and put that pain in a corner.  Julie x
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