Left high and dry

[Ilovemychildren1]

I was put on butrans patch that wasn't working so I phoned up pain clinic told them I took my self off it I have phoned everyday to my pain doctor for 3 weeks spoke to his secretary every time I have been in agony all that time with no reply any ideas

[Bananas5]

I presume it was the pain consultant who put you on the patches?

How long did you try them for? And at what strength?

Have you been to your GP and told him what has happened? He is the one who writes out the script on advice from consultant

x

[Ilovemychildren1 in reply to Bananas5]

I was on the 20 patch

[Bananas5 in reply to Ilovemychildren1]

Very low dose but you don't say what the pain was.

x

[Ilovemychildren1 in reply to Bananas5]

Spinal stenosis

[Madlegs1]

It sounds like you've taken over control of your treatment. What plan do you have now?

When you say the Butrans patch wasn't working- what exactly do you mean?

You need to discuss this with your doctor- but I can't imagine they will be greatly impressed by your unilateral action.

Good luck.

[Ilovemychildren1 in reply to Madlegs1]

I was on the butrans 20 they were not working I phoned and told them

[1881ellie]

I was put on fentanyl patch and told to stop all medication.they didn't tell me how to reduce tablets.another doctor has took me off patch as I said it didn't work.so I'm back to tablets.I don't think the pain clinic gave me enoff information how long the patch takes to really set in the body and how to come off strong medication. And I'm still in bad pain.and can't see my own doctor until next Friday. I know how you feel x

[Bananas5]

I find it quite amazing that patients get told something without ever asking any questions themselves.

How do I reduce medication? How long will it take for this medication to start working.

Taking someone with you isn''t always possible but perhaps a notebook and pencil to tale notes is a must.

GPs and especially pain consultants are extremely over loaded and can't always see you when you want them to.

x

[1881ellie in reply to Bananas5]

I was in half an hour and took my husband with me,I asked about my medication they said my doctor would tell me,iam on high doses of dhydrocodeine and oxycodene. So I know you can't just stop them,but when I say patches didn't work I knew this as the pain was no better it was worse so in the letter they sent to my doctor they said if this happened I was to go back to taking pills.pain clinic did say there is no cure for fibromyalgia but a patch would stop the need for so many pills,also when I go into to see doctors my anxiety is terrible and my mind gone blank at times.I didn't make note of what to ask as I didn't know what was going to get said.my own doctor then raised the patch to higher one and said stop the pills.I did and I had terrible 2 days of shaking and sweats so I took the patch off as I phoned the pharmacy as couldn't get doctors appointment. Ihad withdrawls from the pills I was told to stop.now I've been told you can't take the patch and your pills so how do you reduce pills to get on patch.so Friday that is the question I will ask my own doctor how was it meant to have been done.I'm back on pills,paton I never expect to see a doctor straight away I wait .my last doctor has moved away she was brilliant at explaining things.if I took note with me she go through it with me ,I know they haven't got time but if that had been elderly person they could have took patch with pills as I did thinking I could reduce pills while on patch.surely the pain consultants are the experts and yes I could have asked and I didnt so Friday my question will be how was i meant to start patch while on strong pill as I took withdrawls.when my husband picked up the patches it was pharmacy asked him have they reduced her pills before she goes on patch.so maybe iam in wrong for not asking but they could have said how to switch to patch.

[Bananas5 in reply to 1881ellie]

Not directed at you personally jst an observation over many years.

David doesn't have the capacity any more and as I can't write I have to make sure I listen well.

Be interested what your GP says as we had the same. Came of Fentanyl after 12 years and on to the Oxys. We were told stop oatch, wait a few weeks then on the Oxys. No way was I going to ket him go through that

x

[1881ellie in reply to Bananas5]

Did your husband get withdrawls to fentanyl. I've got so much else wrong with me it's hard to know if I had withdrawls or its other illnesses. It's the high dose of dihydrocodeine I have problem getting off.I tried to tell doctor I saw last week I didn't say fentanyl wasn't working it's the switching over.he said you can't take both go back to pills,as that's what pain clinic have written.when I was at pain doctor I was scared to switch so I said if I can't do it or it doesn't work can i just take my pills and come back he said yes,so Friday I see my own doctor and I will tell him pain clinic didn't tell me how to switch and other doctor took me off patch after you increased it to 50.I'd rather take patch and ask him how to switch .I will write it down.I have an ileostomy and alot of my tablets are passing through to quickly and I find them when I empty my bag so that's why they thought pain patch.I do want to but need help to get on it.do I or will I ask for breakthrough tablet.thank you for taking time to read and getting back to me,ill let you know Friday. X

[Bananas5 in reply to 1881ellie]

I am trying to remember way back when David was on pills. I think he had Oramorph for brak through and GP upped it while decreasing them. It was only when he started self medicating that GP and me said no more and he was presribed Fentanyl.

Do you want to message me and we can talk further?

x

[stokebones in reply to 1881ellie]

Usually you can just work out the morphine equivalent dose of oxycodone and dihydrocodeine you were taking and convert to a patch will short acting oxycodone for breakthrough. Can use morphine etc instead.

Fentanyl takes time to reach a steady state - I wouldn't judge till you've used 3-4 patches.

[SassyZee in reply to 1881ellie]

When they told you to stop the pill they sent you into withdraw big time it started roughly 12 hrs after your last dose. The patch takes 3 days to get into your system so you should of stayed on your medication till the patch got into your system, then gradually come off them .

I know this first hand cause it happen to me the first of this year, I almost had a stroke because my Dr. took me off all my pills I was on 200mg worth of pain medication daily. she put me on 50mg Fentanyl patch, which didn't stay on over 36 hrs an i tried tapping it back on but that wouldn't work. My skin doesn't like anykind of tape of sticky substance on my skin i usually break out.

I took myself off the patch after the 2nd one an I didn't have any withdraw affects from it.

The Dr. should of explained all this to you prior to you leaving the office, if he failed to do so he failed to do his job correctly.

I live in the USA an right now I'm on low dose pain meds all cause of that screw up. My pain Dr screwed me up last month while doing a spinal epidural shot, He hit a nerve damaging it permantly so now i have chronic pain shooting down my right leg 24/7. My Orhtopedist/Neuro surgeon that did a new Mylogram on my whole spine last week, told me to tell the Pain dr. due to his screw up he needs to up my pain meds mg so I can tolerate the pain an little better.

I think he will when he reads the report i have ruptured disc from T11-L5, 2 fractures in my spine, spinal fluid in my spinal cord oh yea Scoliosis of my thoracic area, c2-c7 is fused but re-ruptured. all the other injuries is from a car accident i was in not my fault an the other from my severe osteoporosis.

I just want to be back on my old meds that controlled my pain to the point i could take a walk in the park once a day i could stand up to cook an to take my shower but now i barely can walk in my apt from the bed to the bathroom n cooking i have to sit down now an no more walking in the park.

[deejames]

I think it might have been better to consult with your own GP before just taking yourself off the patches with nothing to replace them. That's what I would do now.

I don't know about where you live but in my health board area the pain clinic is totally overwhelmed and can't respond to every phone call as their time is taken up just getting through their own appointments.

Sometimes it takes a while for your body to adjust to a new medication.

Do make an appointment with your GP to discuss what you do now

Dee

[Ilovemychildren1 in reply to deejames]

I was on them for months

[Bananas5 in reply to Ilovemychildren1]

So you were on them for months at 20 and they didn't work. You must go back to your GP who will help. Never just stop any meds.

It is possible to increase the dose higher. Add in another drug or change to something more suitable.

Don't ask for helpp then ignore when things don't work the way you want.

Managing pain is just that - managing

x

[johnsmith]

Unfortunately, you did the very thing that guaranteed that they would not reply to you. They gave you a treatment and you told them that you did not follow through. Think of the people politics here.

You have survived the pain for a time so you have mental resilience. Google: "erythromycin anti inflammatory". Speak to your doctor about what you found and see if you can do a one week course to see if it helps your condition.

You are going to have to do work to help yourself and report back to the doctor. McTimony chiropractic can help with micro cramps and investigate what micro cramps you have which contribute to your pain and discomfort.

An Alexander Teacher can help you investigate how posture and muscle control is contributing to your pain and discomfort and hopefully give you the tools to reduce the problem. A yoga teacher can help you investigate how your muscles work and help you give better control on your muscles though the practice of using them.

Google "muscle trains" and investigate how this contributes to your condition.

Another tool to use is meditation and mindfulness. Meditation – A Way of Awakening. by Ajahn Sucitto is a free download. One of the best books on meditation and mindfulness that I know.

amaravati.org/dhamma-books/...

I hope that I have been able to be useful.

[Coastwalker]

I see in a previous post you have spinal stenosis, have you had your vitamin B12 blood checked ?

Here is one website explaining that often vitamin B12 is overlooked, there are other similar websites.

spinalstenosis.org/blog/spinal-stenosis-mask-vitamin-b12-deficiency

Idea only - ask for your vitamin B12 bloods to be done and also your vitamin D bloods too.

Ask for a printout of the bloods done and their ranges and pop them up on the PAS (Pernicious Anemias Society,) forum (which is also for B12 deficiency too.)

It is well known that B12 Deficicency bloods get over looked and some spinal problems can be down to vitamin B12 Deficiency.

[Brumchick]

I too had no effect from butrans..i too got the dead end theres nothing else we can give you.i was in agony for years.2 years ago i was hospitalised 2 times via a&e for pain control only.Each time a doc not a pain specialist would muck up my pain relief.One took me off my meds for 4 days then tried giving me codeine and paracetamol seperate .result was i was discharged a week later on exactly regimen that was leading to so many crisis pain admittions.Doctors who are not anaesthetist seem afraid to go up the pain ladder for pts with chronic pain.Life is pure hell when you writhe in painevery moment month after month after year!! eventually i said fuck this literally i had been mucked about for 15 yrs by this time,aalways on the same regimen that did not control my pain.I researched how much to see a pain specialist ( anaesthetist consultant for a one off consultation.It cost me 150.00 pounds and it was the bedt money i have ever spent my whole life.I explained my situation.,he could see i was in agonymy bp and pulse confirmed distress.He wrote out a script for the fentanyl pain patch and gave me a letter to give to my g. P. To ask them to continue precription for patch on nhs and for my doc to refer me to his pain clinic to be his painclinic pt. I know this was drasticbut it was a different attitude completley being seen private.I phoned on the monday and saw him that thursday.As he was assessing me he said understand that this patch is 100 times stronger than heroin and that if i agreed to the treatment i would need the patch for life.i have very severe M.E. Pelvic symphisis disfunction and sciatica and profound fibromyalgia.I agreed on the spot.Within 6 )hours of my first patch. With my usual meds kept for brakthrough pain,i had my first day in 15 years where i wasnt crying and grunting with the pain.I was suicidal at times abd told him so i was totally honest no addictions etc but high addictive problems in 2 family members( alcohol and pills) . Thankfully my no alcohol or smoking life long was enough to convince him to let me try the patch.Please dont suffer as i did.I wish i had done it much sooner.If you cannot get the treatment you need you must keep fighting to get it.Its your life that is being destroyed by pain.and the thought of another 15 years like my previous fifteen was the spur that made me become more assertive and find another way.I hope you find ease soon .Goodluck.

[luckyjim in reply to Brumchick]

Brumchick

Couldn't have put it better myself, well done.

Lj

[Ilovemychildren1 in reply to Brumchick]

Thanks for reply your story is just like mine you cheered me up you understand what I'm going through

[1881ellie in reply to Brumchick]

I to got put on fentanyl 37 but I was to stop my strong pills and they didn't give me breakthrough medication.this was pain clinic.I used full box changed it every 72hours and they're was no change in pain.my own doctor raised patch to 50 fentanyl and it helped.but forgot to ask about reducing pills.so another doctor he said the deal was 37 fentanyl and no pills.your not having a 50 fentanyl. He said letter from pain clinic said 37 fentanyl and no pills if it doesn't work back to pills,so I see my own doctor Friday he wanted to give me breakthrough. The 50 fentanyl was brilliant it helped the pain.I was only on it 3 days and had stopped most of my pills,the doctor that stopped patch isn't my usual doctor he didn't realise that at pain clinic I was scared of changing to patch incase it didn't work..so they said go back to pills if it doesn't work.

[Brumchick in reply to 1881ellie]

Im sorry that you were not given pills for breakthrough.I started on 12 mcg every 72 hours and worked my way up to 50 over 2 years.Ive remained at 50 dose for a year now.Its not perfect as i get withdrawal sensations late on in the afternoon the day before i change the patch.However i am allowed ,100 mg of tramadol four times a day on top of the patch.I also take lyrica ( and tegretol for tri geminal neuralgia.I think the tegretol helps to keep the unpleasant skin crawling sensations down.I get the anxiety too but its mostly the urge to strtch my arms to the extreme to ease the fomication jitters that is hardest for me to cope with.I hope you find the right combibation sooni think pain is such an awful thing i wouldnt wish it on the devil.Best of luck

[deejames]

I can't understand why someone would say that if you started Fentanyl then you would be on the patches for life. Did he give you the reason for that ? Loads of people,e will tell you about switching round with Fentanyl and other drug regimes and not taking g Fentanyl ever again.

What works for one doesn't for another.

Dee

[Brumchick in reply to deejames]

i think what he meant was because i had profound fibromyalgia and severe M.E. That My pain wasn't ever going to go away.I would always require high doses of opiates and when i asked " what if they cure fibro .m.e, how will i get off it, & asked all the usual questions one should ask before accepting a treatment. he said that my pain was what he would call very extreme and protracted ,he was quite frankly amazed that i had tolerated it for so long( no other choice) He rolled his eyes and shook his head sadly when he heard how long i had been in extremis literally and almost instantly summed up the situation,and stepped up to help me. MY fibro had me in a wheelchairneeding to be catheterised intermittently and bedbound with stairlift etc fitted in less than 2 years.I was 35 years old.And had been an athlete all my life.I never have remissions and i have pain every moment that im conscious. IF not Fentanyl. There would be in his opinion , life long need for top of the pain ladder pain medication.Im just so greatful to the man .He is a top consultant anaesthetist very respected ,whip sharp ,and brusque but compassionate .Hope that explains what im trying to get over.I had a bleed on my brain in January and i struggle with language as a consequence.Please forgive any grammatical errors.Good luck everyone.

[deejames in reply to Brumchick]

Oh I see now. He meant that you would be on opiate type medicine for life. It's hard to hear that kind of thing especially knowing that there is no such thing as pain free only less pain.

I am glad Fentanyl works for you. It worked very well for me but after a few weeks I started to withdraw after first 2 days then only 1, with horrible anxiety and nervous symptoms. Yet some people find it very good for years. I would never touch the stuff again . I have a particular face cream that I used during my fentanyl ' madness'. I tried to use it again the other day but the smell too me back and I just can't go near it.

Best of luck with everything

Dee

[Brumchick]

I too have withdrawal sensations on end of day 2 but even those unpleasant sensations are better than the pain i once felt.I usually just grit my teeth and hope that the morning comes quick.Its not perfect ,but i work with it anyway.All the best