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

www.nhs.uk/conditions/Dystonia/Pages/Introduction.aspx

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.

wyldchyld Thu 06-Feb-14 23:26:50

holidays we move the patch every time it is applied so it is in different locations (upper arms, shoulders, upper back, ridge of shoulders etc) and every location at the end of the week has the same redness and sores. It also itches like crazy during the week!

thenames, I think this will probably happen! I can't see them tomorrow as v. full day at uni which will give me a weekend to see how it goes. Then, Monday / Tuesday / Wednesday (quiet days), I can go and have a chat.

ImagineJL Thu 06-Feb-14 23:32:40

SoonToBeSix I don't suffer with chronic pain, but lack of personal experience of symptoms doesn't negate my knowledge of the system and what is available. I have been a doctor for 22 years, have worked in A&E, and have been a GP for many years.

I truly sympathise OP, and I would advise you to try and speak to your GP tomorrow. It is unreasonable to expect you to go several weeks without sufficient pain relief.

IAmNotAPrincessIAmAKahleesi Thu 06-Feb-14 23:37:52

Sounds like a nightmare op, I agree that you must insist to be seen, you cannot possibly go that long with no pain relief

I use butrans patches and I've come off them twice cold turkey with no side effects, so fingers crossed it doesn't affect you too badly

Have you tried oramorph? I use it as well as my butrans patches and tramadol and it does take the edge off

holidaysarenice Thu 06-Feb-14 23:53:09

Sounds like the undertongue wud be good then if the dosage can be sorted.

Aside from this, I would be pushing to see why this is occuring. A nerve conduction test, referral to neuro if appropriate etc could all be ideas.

Those are industrial strength meds u are on, without much in the line of investigations.

Tulip26 Fri 07-Feb-14 00:03:31

Please, please keep going back to your surgery. See a different GP, get a referral for x-rays and an MRI. Get something short term for six weeks. You cannot continue to suffer. I have chronic pain and it's taken me six months of being fobbed off with painkillers to finally get a referra as of this morning.

Tulip26 Fri 07-Feb-14 00:03:55

Referral* sorry

I don't normally post in AIBU but have you tried asking for oxycodone slow release tablets in combination with oxycodone liquid for breakthrough pain? I don't have your exact same symptoms but I suffer with an uncommon nerve disease called CRPS (complex regional pain syndrome) which affects my nerves, muscles and bones and I am prescribed the oxycodone tablet/liquid combination along with the highest dose of pregabalin available for prescription. Please push to be seen by a specialist at a pain management clinic asap, as there are a lot of tests and services they can offer you, to try and not only find out what's wrong but also how to manage it so that you have the best quality of life possible. They have a great deal of experience, even with as yet diagnosed conditions and those, like mine, which are uncommon/rare. If you want to ask anything about what to expect from a pain clinic, please feel free to PM me and I will try to answer any questions you have. I hope you aren't waiting too long and can find some relief in the mean time

FabULouse Fri 07-Feb-14 01:00:57

Need scanning to check nerve roots emerging from cervical spine, sounds like anatomical compression

innisglas Fri 07-Feb-14 01:12:54

I would try some alternative therapy, acupuncture comes to mind or naturopathy. My daughter has been cured by acupuncture for a condition that allopathic medicine has no cure for and I have one friend who was cured of lupus and another was cured of arthritis by naturopathy.

ChronicChronicles Fri 07-Feb-14 04:10:24

You are so not being unreasonable. The doctor is being cruel - to take someone off a strong painkiller like that and give no replacements at all. Is it possible to see another doctor to ask for something else?

I see you mention codeine - you can get co-dydramol over the counter and is stronger than codeine alone. I also found it didn't cause so many stomach issues.

In terms of coming off the patches cold turkey (which I've done a couple of times by forgetting the change the patch for sometime due to memory issues) I found a marked increase in pain - which obviously makes sense. I found myself quite emotionally unsteady and tearful. Everyone is different though. I've stopped many strong medications cold turkey without an issue.

Please don't let your doctor shrug their shoulders and say you have to cope with the pain for some weeks. You wouldn't be on Butrans in the first place if your pain was minor.

Kundry Fri 07-Feb-14 07:53:20

Hi, this is a common reaction to the Butrans patches. It's a reaction to the drug, rather than the patch or adhesive unfortunately. It should clear up with some hydrocortisone cream.

If you can put up with it, it's OK to continue the patches - some people find that putting some hydrocortisone on the area first prevents the reaction being quite so bad but some people just can't manage them at all.

I'd suggest co-codamol regularly would be a good stop gap until you get to pain clinic as you clearly need specialist advice.

I am a doctor and happy to confirm my GMC number in a private message if you want.

CMOTDibbler Fri 07-Feb-14 07:57:57

I'd ask them to assess you for Thoracic Outlet Syndrome - its where the nerve and blood vessels going into the arms are compressed by the first rib. Causes pain, weakness, blood flow issues

wyldchyld Fri 07-Feb-14 09:10:49

Thanks everyone, particularly Kundry! I did say to the GP I'd rather continue with the patches and just put up with the side effects but I got told no way =(.

It's really helpful to have some ideas of things to suggest to the doctor next time - tonight is patch removal time so we shall see! If I have a bad weekend, I'll be at the doctors Monday morning (can't get there today but hey ho)

I might even print off some of the messages so I can ask about some of the medications / causes etc.

It's good to not feel alone - I've even started doing that whole "maybe my pain is really minor and I'm just over thinking this and that's why they won't give me anything", which isn't true. One of the rheumatologists I saw actually said that it was "my fault" and that I had caused this by being overweight. I'm a student lawyer and he told me that "nobody wants a fat lawyer" and that if my hands still hurt when I'd lost weight, he'd eat his hat as it was totally self inflicted. Oh, and to "let the thin girl out, the fat girl has had far too much time being in charge" and that I needed to buy orlistat "because then I could but myself some motivation". Four stone down, they still bother me so I've said I'm not prepared to see him again (he made me cry for an hour following my consultation). Hopefully the pain clinic will be more helpful!

frumpet Fri 07-Feb-14 10:55:50

Wow what a terribly unkind thing to say to someone , that rheumatologists needs redo his bed side manner course . Given that you havent been given a diagnosis , how can he be so sure your weight is the cause ? Muppet !

hiddenhome Fri 07-Feb-14 11:51:20

How the heck can being overweight cause pain in the hands?

wyldchyld Fri 07-Feb-14 13:16:21

That was my argument - I have no issues with hips / knees / ankles etc and it's just my hands / wrists / elbows (although we think that may be due to overcompensating).

FruitbatAuntie Fri 07-Feb-14 14:13:12

The active ingredient in Butrans - buprenorphine - is available in sublingual tablet form too. I think (but am not certain) that it is usually only used for opiate addiction treatment in the tablet form. No idea whether it could be prescribed for you if the substance works fine but the administration method (patches) doesn't? May be worth asking your GP or the pain clinic about.

I imagine if you have been on the patches for a while, you will go into withdrawal after a few days. I think that's really shitty just leaving you to deal with that for six weeks, without the added pain that you will be suffering due to your condition. I would complain very loudly.

Woodhead Fri 07-Feb-14 14:38:32

Just to say do ask for fentanyl instead. I also had skin irritation with butrans (and likewise had been through all the meds on your list with similar symptoms!).

Fentanyl is much better I find (although one of the brands gave increased irritation, so the pharmacist now has a specific brand noted for me). The patches I use are changed every three days, so much more scope for varying the bit of skin to use!

Try to contact the pain clinic directly and ask for an urgent appointment there. See if you can get a call back from your consultant, they might do a prescription for fentanyl with a phone consultation if they know you.

I came off butrans cold turkey, and it wasn't too bad, but I always have top-up codeine, and dihydracodeine around. Hope you get seen soon, but get on the phone to the pain clinic appointments secretary this afternoon.

wyldchyld Sat 08-Feb-14 11:47:24

24 hrs off patch and joy of joys, withdrawal signs...

Started last night, restless and twitchy, fidgeting, can't get comfy or concentrate (I always have a book in one hand so this is not like me at all), hot and cold, can't sleep - think I got 3 hours in total, and, joy of joys, ridiculously emotional (1 hour crying jag over a pair of Father of the Bride cufflinks).

Luckily, OH is now home and looking after me. First thing Monday at doctors if this doesn't calm down, methinks!!

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