Weaning off morphine, gabapentin and amitriptyline to try for baby, in A LOT of pain, don't think I can do this.

[kirstyboo79]

Hi guys

My name's Kirsty, I'm 37, and I've suffered with chronic pain for the past 8yrs due to an annular tear in my spinal disc (L4/L5) and some facet joint damage.

I jumped through hoops for years, having MRIs, trying different meds, physio, hydrotherapy, acupuncture, TENS, mindfulness meditation, and body scanning.

What has worked for the past 4.5yrs or so is 75mg amitriptyline, 3600mg gabapentin, 60mg morphine sulphate SR, and 20-60ml 10mg/5ml oral morphine solution prn. I've still been in pain, sometimes lots, but it's been bearable.

I also have polycystic ovary syndrome, diabetes type 2, and am fat. It's likely to be difficult for me to get pregnant, I have to have my hormones tested to see what treatment I'll need to get there, if needed.

Because I want to start a family with my partner, I asked to be referred to the local hospital's pain clinic to work out what I can safely be on and how to come off what isn't safe for a baby.

Their only input or focus so far has been to say that they think I'm hyperalgesic (based on me saying I get itchy and struggle to sleep if I take more than 40mls Oratorio in a day - which I don't think is uncommon and doesn't equal hyperalgesia) and to say I need to come off all the morphine, adding that it is messing with my hormones and will make it harder to conceive. My limited research shows that women on morphine can get pregnant safely but that the baby will be born with withdrawal symptoms; while gabapentin is actually dangerous to their development. I've arranged a consultation again in one month to address this.

In the meantime..

Since November, I've come down from 30mg MST bd to 10mg bd, and this past week have stopped using the Oramorph, which since dropping my MST dose has been around 80-100ml a day, so 160-200mg morphine on top of the 20mg tablet dose. I'm in agony. I've pretty much gotten over the worst of the withdrawal symptoms - which are awful - but the pain is really bad. It's waking me at night, it's making me rock in my chair or bed, it's making it difficult to concentrate on anything..

I don't think I can do this.

And because the pain clinic hasn't made a plan, my GP doesn't know what to do, and my friends mean well but really, I need support from someone who knows what's going on.

Have any of you been through this?

Kirsty x

[Hidden]

Hi Kirsty, l went t a charity called Adapt for help coming off morphine as gp told me keep taking it after telling me l was an addict urghhhh l wasn't. Anyway if you look up my previous posts you'll see my info as fingers going into spasm, also your GP could refer to pain & addictions team they are the ones to help you ( you don't have to be an addict l wasn't n went for other options pain relief as still ending up in hosp agony and they even wrote l was neither dependant or addicted so please don't take offense as l was petrified it was just for addicts n it isn't but the name should be changed. Anyway l put it down sink 2 years ago n stopped taking 50mls a day to zero in 3 weeks with help from adapt (work with nhs) l did it a lot quicker than supposed to but was told no risk of fits, brain damage etc just horrendous withdrawals. Also chronic pain ++++ but it all settled after a while and after 10 years of stigma from nurses consultants etc who put me on the stuff l had had enough n wanted to be taken seriously. So..... All the best wishes and prayers for you and hopefully you're pregnancy too very soon. God Bless, Deb x

[kirstyboo79 in reply to Hidden]

Thanks Debs, I'll look into Adapt. x

[Ariadne1925]

Hello. I have similar pain issues - L4/5 disc herniated, loads of meds and physio before I actually had MRI and diagnosed. I had surgery but the nerves were damaged so it's chronic pain. Except my pain started after my second pregnancy. The pregnancies themselves were very painful with pelvic and back pain. I mostly recovered the first time but not after the second one, even after a very natural and easy birth.

Caring for a baby and small child is incredibly physical and you don't get time to look after yourself/attend appointments/rest when you need to. It just made it worse. My youngest is five and still I have to force her to get dressed /brush her teeth/put her shoes on/brush her hair. Unless you have a lot of support on tap or can buy in some home help it's so tough. If you are working it may take off some pressure, being home full time with two kids and severe back pain was very isolating, I couldn't just take them to the park. I asked about availabile support but there's nothing. I also have depression which confounded the situation. It just didn't work for me. I'm back at work now the kids are in school which makes things more balanced.

I'd never advise someone with back pain to have a pregnancy and then look after a small child. But I do know the desire for a baby can be overwhelming. With the right support it's not impossible. You definitely need to wean off some of the meds, amitriptiline was fine for me, no withdrawal except insomnia, I used valarian to drop down doses. Opiates are safe to come off fairly quickly and can be easier for some, I've gone cold turkey off a few things and was fine. I'd not recommend it while working but it doesn't take long. I'd never been on morphine directly though, save post op. Gabapentin on the other hand, was the worst. Don't come off cold turkey as it's a hard withdrawal, similar to benzodiazepines. Gradually wean off them with support of your dr. I'd recommend a pain management course but suspect you've already done it. They helped with meds and reducing as well as alternatives. I'm taking far less opiates now after the course.

The other issue is the polycystic ovaries - I have them too, I conceived accidentally first time and it was a shock as I assumed I'd need help. For some women weight reduction can control the hormones, I was losing weight both times I conceived. It's hard to lose with PCOS so it's bloody tough - I'm trying and failing to shift a stone (of two) yet again. Can you get any support from the GP on this? I've heard metformin can be used but haven't looked into myself.

Can you go back to the pain clinic for support? A friend wean off meds for another condition to have a baby and it work out, but it's a very different problem. Back pain is debilitating like nothing else.

[kirstyboo79 in reply to Ariadne1925]

Opiates aren't safe to come off quickly, I don't know where you've got that idea. As someone who's been on them daily for 6yrs, and is coming off them whilst working, trust me. Coming off morphine cold turkey is a terrible idea.

I've also been on metformin for more than a decade, it doesn't help me personally lose weight, but I know it does for lots.

Luckily I'm stubborn enough that I will fight to have a family inspite of the conditions I have and the pain I'm in.

[Ariadne1925 in reply to kirstyboo79]

I started on opiates seven and a half years ago. Opiates are fine to come off relatively quickly unless you have some other health complications. I don't so cold turkey wasn't a problem for me, although I'd never advise cold turkey for anyone else, it's a very personal thing and I discouraged one friend from doing it - she still came down fairly quickly under supervision. As the first reply states, opiate withdrawal isn't linked to seizures like gabapentin and the withdrawal symptoms pass quicker than other drugs. The worst symptoms pass after a week or two. Longer term use of opiates is linked to increased pain and sensitivity as the morphine receptors are damaged.

I do understand the desire to have a baby can be all consuming. I just know the reality and, being very honest personally, I would never recommend it. I know my kids are missing out and that's hard to face up to. Luckily my husband is very hands on, even if not always supportive about my pain, and we have money to buy in help if needed - our eldest has special needs too. Sadly we have no family support.

You don't need to listen to any advice - a bloody good tip when pregnant and then a parent. But I'm in a position to share my experience. If things don't work out life can be fulfilling in other ways. I'm often envious of childfree couples, life seems so much more exciting and a lie in with my husband and no interruptions would be wonderful, but the grass is always greener!

Good luck but keep at it with the withdrawals.

[Sammicat15]

Although I don't have some of the medical issues you do, I have fibro, RA, and osteo, as well as a migraine condition and sacro ileac issues which can be excruciating. I was in the position of needing IVF in order to conceive and the young doctor who saw me at the fertility clinic very blithely said I'd have to go clean of meds in order to join the IVF programme. I was also overweight at the time and having a rotten time with monthlies, along with 2 sorts of migraines every week and a 2 hour commute each way for work. I was losing the battle with clinical depression.

My husband at the time was not at all supportive and the prospect of being bed-bound in terrible pain without meds, down to one salary, paying thousands for treatment, and wrangling a selfish passive aggressive partner made me make the decision not to push for IVF. It was heartbreaking, but I realised that an already very difficult life would become doubly hard and more isolating if I was lucky enough to conceive. I was 39 at that point with only 5% chance of conceiving. I didn't have the right support network back then and although pregnancy hormones were likely to mostly ease my pain conditions, I couldn't risk my sacro ileac going turbo and literally being stranded with a needy baby, unable to move.

You have to want childfen above everything else in life but also be realistic to know what you are facing and what you,can really handle. I knew I would be facing the challenges mostly on my own. My ex husband was a coward who didn't give a monkeys about the pain I was in daily and how I struggled to keep a full time job and deal with health and home. While you can give up a job at tough times, you can't send the kids back when life is overwhelming! Children are very hard work even when you're fit. I had to be pragmatic even though my heart was breaking at the time and I had no nieces or nephews to offset the emotional devastation. (I turned to animal rescue instead when my head cleared)

Listing the pros and cons is hugely important. Be honest with yourself, since the burden will be on you. Speak to your doctor about assisted weightloss. Mine supported me through gastric surgery but the process took a year. It helped hugely on the physical side, as well as mentally. Get pain experts involved in your treatment programme to make a plan of action for swapping meds steadily at a rate you can handle. It will be a slow process and nothing is guaranteed. You may need to be referred for assisted conception which is free if you have the right postcode! (We didn't!) So don't leave that discussion with your GP too juch longer.

Unfortunately I hit menopause before I found the necessary medical and emotional support, so my dream went unfulfilled. But life without children isn't the end of the world. I divorced and found real love, inheriting 2 lovely stepsons.

Meanwhile, you will need a huge support network around you of medics, family and friends in order to achieve your dream and I wish you every bit of luck in getting there xx