I’ve been to the Pain Clinic today and feel rather upset.
I have what I class as bad constant neuropathic pain in my feet. I currently take 100mg twice a day pregabalin, and 50mg amitryptyline.
I was told today that she didn’t want to increase the dosage as she wants to keep that in case it gets worse.
Instead she thinks I need to accept my pain as it’s not dangerous or harmful. She thinks I need to do breathing exercises twice a day where I focus on the present rather than the past or the future. Easier said then done! Apparently the extra oxygen in my body will do me good. And she’ll see me again in 6 months.
Am I being flippant, do you think breathing in deeply and exhaling slowly 10 times twice a day will do anything at all for the pain/discomfort?
Oh Sarah I suffer from nerve pain and understand your upset and disbelief. I’d ask for another consult or see the Neuro. Only a person who’s never had nerve pain would say something like that! There are definitely drugs available to keep you comfortable, my Neuro and gp took ages to get my drug regime right but I’m comfortable now and you should be too. I asked if it’d be possible to bring some of my drugs down but both doctors refused as they’ve said that quality of life is important and they don’t believe I’d cope on less.
Surely the same would be true for everyone with pain. I know that Cambridge university is currently doing research on pain in ms as until recently it wasn’t really recognised (I’m a guinea pig but my meds aren’t being messed with) so I suggest you see your Neuro and insist he treats it. You don’t need pain on top of your current problems, in fact not treating it does more harm as your body starts to become hyper sensitive and in time will perceive all sensations as painful. I know that from experience.
Please seek help, oxygen and deep breathing do help but not enough for severe neuropathic pain. Let us know how you get on please.
Hi Sarah, I do agree with Cath and Pam…you shouldn’t have to suffer in that way…there are definitely meds available. Having said that, I have recently started a mindfullness program which includes deep breathing…it’s been a great help with my attitude but honestly NO it hasn’t eased my pain. As Pam and Cath have said …go back to your GP, neuro or MS nurse and INSIST on more help. Very best wishes, Nina
Thanks for all your comments. The thing is I’ve tried a lot of things already. In addition to the combination I’m on at the moment (amitryptyline and pregabalin) I’ve tried them seperately, gabapentin, duloxetine, a TENS machine and acupuncture. I’m not sure what is left.
When I saw my neuro last year he reckoned the Pain Clinic wouldn’t be able to sort it as the meds I’d tried should have worked. I’m seeing him on Thursday for my annual appointment so I’ll chat with him then.
I feel as if she was just going down a tick list and breathing exercises were next on the list regardless of why you were there or who you were. I don’t let it stop me doing what I want to do but sometimes, especially in the evening it is exceedingly uncomfortable and I’d much rather be without it! I think my attitude towards my illness is normally very positive but she didn’t really take the time to get to know me
Cath - do your meds take it away completely or just subdue the feelings?
Have you considered an oxygen tank, or whatever it is some hospitals have that elite athletes use to speed recovery from injury? Was chatting to a bloke at the gym who was suffering severe shoulder pain, but after going in this tank for half and hour was completely cured. I’m actually considering looking into it myself.
What I often find helps is just drinking loads and loads of water/weak cordial. Funny, but every time I do so things just feel slightly better.
Sarah pain medications are prescribed on a sort of ladder. With nerve pain there’s not much point in taking anti inflammatories as there’s not usually inflammation in the nerves so they prescribe drugs like amitriptyline and Gabapentin or Pregablin at low doses which they adjust according to reaction. They often prescribe drugs like paracetamol along side these. If the pain continues they give mild opiates like codeine. If this doesn’t work they go to Tramadol, another mild opiate but as they’re derived from heroin they’re very addictive.
If like in my case this is still not effective they prescribe a strong opiate like morphine or fentanyl. These are very strong but effective and very addictive and are used as a last resort. Many people, myself included are wary of them for this reason but my gp reassured me when he prescribed them that if they were to stop them, they’d do it very slowly to prevent withdrawal symptoms.
Any drugs will make you sleepy when you start them but if you persist it eases. Although I’m on enough drugs to kill a donkey I’m alert enough that my Neuro wrote to DVLA reassuring them I’m able to drive. I am comfortable most of the time, but I’ve got the additional problem of a spinal cord injury so my whole body hurts. If I’m uncomfortable I can have quick acting dose of morphine syrup but that does make me dopey. Then I won’t drive, or after my amitriptyline which knocks me out.
I hope this helps. In answer to your question, yes, the pain is eased so at times I’m pain free but I’m a stubborn ex nurse who takes as little as possible so as my gp said, I’m my own worst enemy. But there’s no reason at all for anyone to suffer from pain. Take care.
Just seen this interesting thread. My first reaction to the pain clinic saying breathe through it & relax is, to me, a contrdiction in terms. How can we relax when we have neuropathic pain? For me, this neuro pain is like raging toothache & I don’t know where to get for comfort & relief. The ‘raging tooache’ goes from my lower back & down my right leg. Ooooh I’d be cross with that pain clinic.
Now I have 150mg pregabalin twice each day, topped up with Buprenorphine (addictive but I’ve never had to increase the dose). Plus Naproxen for lower back pain when needed, same with Volterol gel. I have a medium-high pain threshold but I can get to screaming pitch with neuro pain, thank goodness it’s under control with pregabalin.
I saw my neuro for my annual appointment and he told me to ignore the Pain Clinic. He was shocked to hear that she’d said she wanted to keep some of the dosage until it got really bad. He said to me to play around with the dosage until I found what was right for me by weighing up side effects with the amount of relief I an getting.
It is great advice Sarah, I can’t believe someone at a Pain Clinic suggested you accept neuro pain until in gets worse!! I wonder how long she puts up with toothache or a migraine!
I take pregablin and morphine based painkillers. The Pregablin doseage is being gradually increased to see how I tolerate it. Currently on 150mg twice each day and pain is virtually gone. I’m glad your Neuro is giving good advice.
At first, we all thought it was pressure pain caused in bed…yes, I spend more of my time in bed rather than up…about 15 hours a day. My suprapubic catheter is happier when I lie down!
Back to the heels…district nurses have been fab and have exhausted them selves with ideas. I`ve tried every pressure relief mattress there is, tried 3 types of heel protectors, all to no avail.
Last year I told my new (yet another…the 16th… neuro)about the heel pain. She precribed pregabalin. I got up to 225mg and nowt! it did chuff all! BUT it did help a mystery pain following my spc op, in my tum…so now I take 150mg for that.
I see this neuro next week…so we`ll see if she has any more bright ideas.