I cannot – seriously – continue to live like this…

After years – decades – of begging for effective analgesia, I got Tramadol, prescribed by APH and continued once I was out. This took care of what I think of as my “old pain” – the pain that goes back to the lightning strike in 1983 which damaged almost all of my joints – but did nothing for the increasingly agonising pain of my lymphoedema.

Twice last night I woke up screaming – god knows what the neighbours must think but, sorry guys, this hits while I’m asleep and I have no control over it. Though, frankly, I’d have bugger all control were I awake – when pain reaches that level the response to it is very hard to contain (and before anyone lays any stiff upper lip, bite the bullet, bullshit on me, if you think that way you really haven’t suffered enough to have a perspective or an opinion).

Yesterday – pushed almost to the point of suicide** – between getting up at 07.30, and midday, I took 200mg Tramadol, 2000mg Paracetamol, 60mg DHC and 400mg Naproxen, and it barely put a dent in the pain.

**Not being melodramatic – this pain has long since passed the point at which it’s tolerable.

I was obviously in such dire straits that the district nurse, on leaving here, went straight round to the medical centre to lobby for morphine for me.

By evening I had morphine, in the form of Zomorph. Predictably, I also had the lowest goddamned dose possible, 10mg, with the advice that I could go to the dizzy heights of 20mg if I had to.

10mg killed off the headache that’s plagued me for over a week but didn’t do much else and, by the time I got it the pain had abated naturally (it’s worst from the early hours through to mid afternoon).

This morning, I took 20mg. Absolutely no effect at all – even the headache started to creep back! So I’ve taken another 10mg which I’m hoping will kick in soon (Zomorph is good for 12 hours, allegedly, but for me it takes 4 hours to have any effect at all). Even 30mg is a pathetically low dose for a drug that goes from 10mg capsules up to 200mg.

NB: I must find out, given the low dose, if he expects me to continue with Tramadol as well.

When the GP arrived yesterday to talk about this, I resisted the temptation to tell him I felt suicidal, lest it seem like blackmail (not to mention the risk of being sectioned). I think I have to tell him, though, as unless I get something better – or at least a much higher dose of Zomorph – the temptation to end it will become irresistible.

I asked for a referral to the lymphoedema clinic, only to be told I don’t have it, just plain vanilla oedema. Not that he’s even seen my legs, you understand, none of them have, and one flatly refused to look because “It’s horrible!”. Yet I’m refused access to effective treatment for a condition everyone else knows I have, and anyone who cares to choke back their breakfast, brave the stink (hey, I have to, you gutless bastards, and so do the nurses), can see for themselves.

That I do have lymphoedema is not in doubt, it’s text-book, and matches the description and photos on the Lymphoedema Network’s website – I’m between Pic 3 and Pic 4.

Oh, and the additional 10mg of Zomorph? Bugger all use. I reckon I need to get up to 60 or 100mg. Failing that there is no point in continuing with it. Not worth putting up with the side-effects which worsen almost everything that’s wrong with me

What I really need is something like Oramorph, that kicks in quickly, not a low dose of something that takes hours to filter its half-arsed, sustained-release, way into my system. Fuck that.

I cannot – I will not – live a life so dominated by unremitting agony that I can barely function, and it’s positively obscene to expect me to do so.

21 thoughts on “I cannot – seriously – continue to live like this…

  1. Oh Ron, I Empathise entirely; until I had the good fortune to be placed on the books of my current GP, this was exactly how I felt. Pls tell the district nurse how you feel – you don’t need sectioning merely efficient pain relief xxx

    • Everybody who matters is getting a copy of the blog post to go in my file, so if the worst does happen the reason why is a matter of record. Also the reason for the post itself.

      And a thought has just struck me – my meds are increasingly being supplied in 2-week quantities for no apparent reason – except maybe it’s to reduce the risk of suicide. Bit bloody cynical if true, since the GPs are the cause of the problem.

      • I fully comprehend what you’re saying & hope your current situation is rectified urgently.

        Whatever happens I promise to make sure your story is told and shared as widely as possible.

        Remember you are NOT alone Ron xxx

        • That’s the main reason I’ve been writing so much about myself. If I die, from whatever cause, at least the tale of medical incompetence is in the public domain. Christ, I’m in the middle of it and even I don’t believe it sometimes, so god knows what strangers make of it! For those looking at this saga dubiously, be assured, every word is true.

          I wish that were not the case . . .

          • I agree with Jayne and I can understand the reasons you are putting everything into your blog as it HAS been the fault of medical incompetence. I hope that you don’t go for years and years yet Ron, but whichever, your story should be told, your facts, your feelings and your truth!

  2. Ron, I feel for you, I truly do 😦 I have lived with pain for so long that I have become used to certain parts of it. When I had the ankle fusion that went wrong and left me with a dead foot for two days, I was suicidal, it was so bad that I actually asked the nurses to keep the cupboard in my room that contained my drugs, and I would have taken them all, I promise you. I even tried to get out of the bed so that I could crawl to the motorway (right by the ward I was in), so that I could get hit by a car or something 😦 It was the worst pain I had ever experienced and I have a high pain threshold!
    When I got transferred to the other hospital the first thing that happened was the pain team came up to see me – they immediately injected me with morphine which lasted for 5 mins! Eventually I was put on a morphine drip with various medications including Gabapentin 300mg three times daily. The mixture of drugs didn’t take the pain away but they did dull it somewhat. However, when I was discharged they didn’t give me any pain medications to take home which resulted in a night of agony again that I wanted to die, hubby was besides himself, the poor man. The doctor visited me the next morning and was horrified that the hospital had done that to me. He immediately put me on Oramorph and I could take 5ml every hour (which I’ve now cut down to when I need it). He also gave me MST Continus – 60mg twice a day, which ended up with it being increased to 100mg, which is a hell of a high dose. I have slowly, over the past 13 months come down to 30mg and can increase by 10mg if needed.
    I will need the combination of drugs for a good few years as I need various operations and joint replacements.
    I take, Gabapentin 900mg three times a day (it got increased by the pain team), MST Continus 30mg twice a day, Morphine Sulphate 10mg/5ml to take whenever needed. Paracetamol 1000 four times a day. Paroxatine 30mg in the morning to help the pain and the depression 😦 Then of an evening I take Lamotrigine 100mg, Trazadone 300mg and a 5mg Diazapam as well as Temazapam 10mg. These are besides all the other medicines that I take for various other things! The Lamotrigine, Trazadone and Diazapam are to help me sleep, help the other pain meds through the combination and help my depression. I take 2mg of Diazapam three times a day too.
    Of course, with all these pain meds I also have to take stomach meds, Lansoprasole 30mg and Buscopan 20mg four times a day.
    There are times when the pain is unbearable and I wake screaming to, or in the daytime when I go to stand up – agony 😦
    So Ron, I feel your pain, I truly do – it drags you down so badly and it does make you want to end things so that you don’t have to feel like this on a daily basis. All I can say is you so need your pain meds increased (‘specially the morphine), and you need Gabapentin as it’s not just an anti-convulsant, it is so good for nerve pain which you must have. Are you on any anti-depressants to help your depression and to help the pain meds?
    All I can do is send you healing vibes and hope that your doctor can tweak the pain meds and try other combinations. I’m so sorry that I can’t do more 😦
    Jay xxx

  3. I agree with jayne – tell your nurse or your doctor about how you feel, they will see this as needing help with your pain and depression. Ask for a psychiatrist to see you or ask to be referred to your mental health team. Believe me Ron, they were my lifeline and I have a CPN who I see once a week who visits me at home. Please Ron…

    • The manager here (sheltered flat), is giving my GPs what for as I write. She’s seen me improve after APH, and now she’s seeing me crash again, and she’s not happy with the lack of treatment.

      See also my reply to Jayne.

  4. Never let anyone tell you Lymphoedema is ‘painless’! I saw the photo of your feet & dressings the other day &, as far as I’m concerned, you definitely have Stemmer’s Sign which is highly indicative of Lymphoedema. If your doc is SO convinced you don’t have it, he wont mind sending you for a special scan to prove himself right will he?! Incidentally, I’d make damn sure my GP saw my legs by being dressing-less & short-wearing when he came. Take lots of photos too & give him them. The nurses at the Lymphoedema Clinic will have a much better idea of what your swelling is or isn’t. Is there another way for a referral? Can the Nurse get you one? Have you contacted them directly? Is there a private therapist who would be willing to offer their opinion pro bono nearby?
    I found Amytriptyline the dog’s whotsits for my nighttime pain. I was never sure if it was Lymphoedema pain or my MS but, no matter, it does the trick.

    • Thanks for the Stemmer’s tip, Tru. I’d already tried it myself but didn’t know what the test was called. It does seem susceptible to false negatives, though, if excessive force is used by someone unfamiliar with it, like a GP (or one, like mine, who is out to prove a point!).

  5. Forgot to mention that Gabapentin has got me through Lymphoedema pain (for sure) as well as MS as it encroached! I take 800mg 3x daily but I have built up to that level over a number of years. I still need the Amitriptyline though.

  6. Last month when I had to call out the Paramedics for chest pain, I was given 10mg of Oramorph (he couldn’t find a vein to inject) and it didn’t do anything. Half an hour later, in the ambulance, I was given gas & air which helped a bit, but not completely. I was eventually given 50mg Morphine in A&E which helped, but I still felt a tiny bit of pain. This was on top of my normal painkillers. When I told my GP about the 50mg of Morphine, he was very surprised at the high dose.

    A couple of weeks ago I bought a BrodPod bracelet to help with my every day pain, and I find that it helps me considerably. I wear it every night and now don’t waken up with pain. It’s not cheap, but with this link you can get 5% off the price

    Please keep telling the nurses how bad you’re feeling Ron.

  7. *Squishes* Ron. I know suicidal pain levels and I really wish you (or anyone) didn’t have to experience them.

    I am confuzzled though- Zoloft is normally sertraline (an antidepressant) and that’s all that comes up on Google. Either you’ve typoed (understandable) or you’ve been prescribed something that definitely isn’t morphine.

  8. I can only repeat what others have said Ron, let them know you’re feeling suicidal. I don’t think you would be sectioned – that would require the opinion of a shrink, who would see quickly that it’s poor pain management that makes you feel like that. Crossing my fingers for you that someone, somewhere pulls their finger out.

  9. I have fibromyalgia and osteoarthritis. I am in pain 24/7 and although I dont know anything about your condition, I can sympathise with you. I am taking 40mg am and 50mg pm of zomorph as well as 150mg 2 x day of pregabalin, I am still in a lot of pain. I rarely have any side affects apart from constipation. I often feel that I cant go on like this but there are worse things in life. Thats what I tell myself. Go back to GP and pester. No one should be in so much pain and lets face it we know our own bodys. Thinking of you x

    • Since I wrote that I’ve been pushed to the brink of suicide, which scared the hell out of my GP – didn’t do much for me either, frankly. The end result, my GP having been comprehensively snarled at by my nurses and the scheme manager who talked me back from the brink – I’m in a sheltered flat – is that I now have 600mg Gabapentin every 8 hours, 30mg Zomorph every 6 hours and a shot of Oramorph to start the day, without which I daren’t get out of bed (the fluid that drains out of my legs in the night rushes back as soon as I stand up, the result is agony).

      On top of that I have the Tramadol (100mg every 6 hours plus 2 Paracetamol), that I was taking previously.

      Even with all that I’m getting quite a bit of breakthrough pain, but, for now at least, it’s tolerable most days (not so much today – it’s been pretty crappy).

      As you say, constipation is a problem, and with all the morphine and Gaba, my bowels seem to have quit on me. Today, then, has been liquid day, with plenty of Senokot, plus sugar to draw water into my bowels. which seems to be working slowly.

      And by the way, it matters not one iota that there might be people worse off than we are – it doesn’t make us fee any better does it, and there’s little or nothing we can do about it – I know that after several years of dispensing disability benefits and COPD advice.

      What made me quit, aside from the fact it had become a full-time job and I couldn’t deal with it, was a guy who came to me desperate for help. His wife had COPD, but wouldn’t take her meds, continued to smoke, was profoundly depressed and fading fast. I said it sounded like suicide by neglect, and he needed to intervene. About a month later he was back to say I’d been right, but he’d been too late coming to me – she’d died before he could do anything.

      At that point I decided that was something I didn’t want to do – and increasingly couldn’t deal with other people’s problems while mine where getting worse – and quit.

      Oh, and getting back to what we were talking about, my GP has just increased my Zomorph dose by 50%, completely unasked Mystifying, but very welcome. It sound like you could do with nagging your GO too.

      Aplologies, by the way, for any typos I’ve missed – I’m almost blind at this time of night – one of the joys of ME!

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