To rant and rant about doctors and Butrans patches (long)

(44 Posts)
wyldchyld Thu 06-Feb-14 22:47:45

I have something wrong with my hands. The doctors don't know what (had since mid teens) in that I have little to no grip or strength and pain. It's like a cross between having hands in freezing iced water and the worst writer's cramp ever.

Not lupus, not rheumatoid, raised inflammatory markers sometimes but not at othertimes. Doctors flummoxed, advised to lose weight (4 stone down now and still going) but basically decided to treat with pain relief and stop draining my blood continually to see if it has changed at all testing.

You name it, I've taken it. Ibuprofen, aspirin, paracetamol, co-codamol, codeine, naproxen, diclofenac, celecoxib (none of them effective even in combination), amitriptyline (worked perfectly, made me obsessed with suicide down to planning methods), gabapentin (made me cry at everything and ineffective), pregablin (made me angry at everything and ineffective) and then, finally, Butrans patches. Which were perfect with no side effects.

BUT my stupid skin now blisters and is covered in open sores where the patch was so doctor wants me to come off immediately and has referred me to the pain clinic. Waiting time for which is 5 - 6 weeks. And can't give me any other pain relief to keep me going until I go and won't let me carry on with patches (run out).

Last time I came off medication cold turkey (pregablin), I was in full drug withdrawal (sickness, cold, shivering, sleeplessness) and am worried about that. Also very worried about doing 6 weeks with no pain relief during cold winter months when hands are bad!!! At worst, I couldn't hold a make up brush, open bottles or jars, peel potatoes, carry things etc. Even with meds, can't handwrite and drop things but have an almost life...

AIBU to have a hissy fit and say that I cannot cope with NOTHING?!

SoonToBeSix Thu 06-Feb-14 22:51:42

Are there not different brands? I use fentanyl patches and am allergic to one brand but not the other two.

HadABadDay2014 Thu 06-Feb-14 22:51:58

Haven't you been referred to any one.

Have you been tested for carpel tunnel syndrome

wyldchyld Thu 06-Feb-14 22:52:56

According to the pharmacist with whom the doctor spoke, no. I was desperately hoping for that, or even to swap to a lower dose fentanyl (as it's stronger than Butrans) but the doctor has said no til the pain clinic see me

wyldchyld Thu 06-Feb-14 22:55:16

I was referred to rheumatology twice - the first time, they tested and checked and said they didn't know what it was - maybe hypermobility - and to treat with pain relief. Second time, I was told it was my own fault as overweight and to lose weight along with some exceedingly rude comments ("everyone loses weight on the starvation diet" etc when I explained I'd gained weight on some of my other tablets and had struggled to lose but was now working on it).

Carpal tunnel, they have said a few times they would test for it and never have but last GP said he didn't think I did as it didn't seem a normal case of CT

HadABadDay2014 Thu 06-Feb-14 22:55:34

Can you see another doctor in the same practice. No way can you be in pain for up to 6 weeks, get a second opinion

splasheeny Thu 06-Feb-14 23:02:01

The issue here isn't with your gp, its the waiting list.

The alternative would be to pitch up at a&e and tell them that you can't cope.

SoonToBeSix Thu 06-Feb-14 23:02:56

Butrans didn't work for me but fentanyl does,it is very addictive though.
If I was in your situation I would go to a and e you will see a specialist and they will have the authority to prescribe fentanyl. I don't think a GP would ever prescribe fentanyl without the say so of a consultant either from the pain clinic or hospital .
Do not just do nothing I understand what constant chronic pain is like.

SoonToBeSix Thu 06-Feb-14 23:03:51

Cross posts with a and e , seriously go I have done it myself on the advice of a GP so don't feel guilty.

wyldchyld Thu 06-Feb-14 23:07:45

I may keep A&E in mind once the Butrans patch comes off (tomorrow). stbDH works at A&E and I know if I was in the kind of pain as you guys have been in, he would take me, particularly if I couldn't get any help from the GPs.

I know part of it is me just worrying as the patch comes off tomorrow but it's so frustrating... I'm hoping when I get the letter, the referral is sooner as I have uni coursework and exams approaching (plus our wedding in the summer!!) so couldn't have come at a worse time!

Thank you for all the support, it helps to know I'm not alone

wyldchyld Thu 06-Feb-14 23:08:50

Does anyone have experience with withdrawal from Butrans? As I say, I came off pregablin cold turkey when I was switched to Butrans and was sick as a dog for two weeks with nothing they could do.

holidaysarenice Thu 06-Feb-14 23:11:22

It is neither an accident or an emergency.

It is painful, not an emergency. I suggest you go back to the gp and refuse to leave without a sensible pain management plan.

Also I second change the brand of patches, I'm sure there is more than one. Possibly not in that pharmacy but I'm certain that there is.

If the blistering is just at that site it could be an allergy to the material, if its elsewhere it may be a drug allergy, then do not take the drug!!

Also ring the pain clinic a cancellation at short notice would do?

sharkey1187 Thu 06-Feb-14 23:11:53

I'm not sure going to A&E will achieve anything accept for temporary pain relief. And they probably won't prescribe anything that you haven't already tried. You won't be able to see a specialist tonight, they will refer you back to your GP. If the pain is unbearable tonight, call NHS direct. Out of hours GP's can prescribe pretty strong pain relief or advise what you can do in the interim. Tomorrow you need to call your GP surgery and chase up what you can take in the mean while. If amitriptyline worked but you had side effects, there are similar medications. My mum had awful side effects but can take nortriptyline with no trouble. A trip to A&E will just mean you will be sat in a waiting room for 4 hours and you won't be any the wiser.

ImagineJL Thu 06-Feb-14 23:15:27

SoonToBeSix OP won't see a specialist at A&E. Chances are you'll see a junior doctor with far less experience than most GPs, who will probably give you some codeine, and tell you to go back to your GP to try and get your pain clinic referral speeded up.

This idea that A&E is like a walk-in immediate-access out-patient clinic is what's bringing casualty departments to their knees.

OP do you have codeine? You can buy cocodamol over the counter. Whilst it probably won't control your pain, it will at least ease your opiate withdrawal.

wyldchyld Thu 06-Feb-14 23:16:49

As I say, I'm okay tonight and tomorrow (probably til end of weekend) as pain patch change day is tomorrow. I don't want to go to A&E unless I have literally no other option, and OH would definitely be v unhappy if I was "abusing" the system!

holiday - it's just at the patch site so it's definitely just a reaction to the material but because the sores are open, doc won't let me stay on a) because of infection risk and b) because it affects the transmission of the drug. I think I have an old BNF somewhere and will double check the other patches as it should list brand names

sharkey - He was pretty insistent no meds til the pain clinic because of the amount I have tried but I will insist if needs be. Feel funny about taking other antidepressants as other than the suicidal feeling, I felt strange in myself - like wrapped up in cotton wool, everything was a bit numb and had no feelings - and I slept 20 hours a day for the first two weeks which I can't do now as at uni!

Stupid hands!!

holidaysarenice Thu 06-Feb-14 23:17:07

Also does he think you have the drug allergy?

Just asking as if not, butrans can be given under the tongue if that would be an option?

It is an opiate drug and has mild withdrawal symptoms in those dependent on it. How long have you had it?

Also I know you mentioned a few drugs but a different opiate would be tramadol? Have you tried that before?

wyldchyld Thu 06-Feb-14 23:17:37

Imagine I have some left over co-codamol which I can try if it gets bad. That's a good idea, I didn't think of it.

AnyaKnowIt Thu 06-Feb-14 23:18:33

Have you ever had a brain scan or a full mri?

holidaysarenice Thu 06-Feb-14 23:19:06

also whilst it doesn't sound like carpel tunnel, tinels and phalens tests are signs for it. Not highly sensitive tests but easily googleable to try out.

SoonToBeSix Thu 06-Feb-14 23:20:57

Imagine do you have a chronic pain condition if not then respectfully you don't understand. Withdrawal from opiates can be an emergency and chronic pain cannot be left for weeks.
Unfortunately GPs hands are tied as to what drugs they can prescribe.
Like I said I went to a and e myself on the advise of my GP and I was prescribed medication with a letter to my GP for a repeat prescription,

thenamestheyareachanging Thu 06-Feb-14 23:22:22

Can you see another GP at your practice? That's what I'd try first, see a different GP and explain your fears about withdrawal and being without pain relief. It doesn't sound acceptable.

holidaysarenice Thu 06-Feb-14 23:22:31

The bnf is online too.

If its only at the site then it sounds like the material. The patches could be moved about to ease it.

It sounds like with a decent gp this could be sorted easily.

Even give a big pharmacy a ring and ask about brands of butrans. Sometimes the sticky bit can be at fault and the skin can be protected from it.

wyldchyld Thu 06-Feb-14 23:22:34

No brain scan or MRI. No scans on hands, not even x-rays.

Doctor thinks it's just the patch - I may ask about the sublingual tabs or the other patches, although it looks as though they may be higher doses than mine. Never had tramadol

I will google the other tests! Thanks

AnyaKnowIt Thu 06-Feb-14 23:24:58

I have a friend with this and when you said writers cramp it rang a bell.

sharkey1187 Thu 06-Feb-14 23:26:36

I get nerve type pain and was prescribed amitriptyline with tramadol. I only take a very low dose of 10 me per night, and have since stopped the tramadol as I'm pregnant. One of its uses is an antidepressant, but it also widely used for neuropathic pain which is what yours sounds like. The first 3 weeks on it is the hardest, it does make you groggy. But as your body adjusts it's easier. I now get on fine, but my mum didn't so tried a slightly different version. If the GP you saw wasn't helpful, seek a second opinion. Everyone has their own opinion on pain relief and sometimes it's about finding a doctor that shares yours. I second trying tramadol, it's an opiate, but it has a slightly different action to codeine etc. Have you tried meptids? Again that is another opiate that works slightly differently. Chronic pain is such a difficult thing to "cure". The pain clinic is your best bet, but you GP has a responsibility to keep you comfortable whilst you wait.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now