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The UKFibromyalgia Forums • View topic - At a loss about what to do next (medications)



At a loss about what to do next (medications)

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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At a loss about what to do next (medications)

Postby Zia2014 » Tue Feb 10, 2015 4:02 pm

Forgive me for this splurge but I need to put all my thoughts into one place. If anyone has any ideas I would love to hear them!

Meds tried, side effects and outcome:

Amitriptyline - 10mg gradually increased to 75mg. Although it helped with sleep, the effect wore off. Very good for the pain but side effects of 'zombie' feeling until midday next day, and v bad constipation. On for about 6 weeks/2 months I think?

Nortriptyline - 20mg up to 30mg (3 weeks in total). No help with sleep and same side effects as above.

Naproxen - 1,000 mg for one month. Didn't help with sleep, had very bad insomnia so ended up on sleeping pills too but not for long (20 days). Didn't do much for pain.

Gabapentin - on and off since October. Edge off pain but no help with sleep.

Duloxetine - took for 3 weeks. Made me 'wired' and unable to sleep. Helped with pain.

Pregabalin - took for 6 days. Side effect of making my feet unbreaably itchy (possible allgery?) - so much so it was waking me in the night and I could barely put any pressure on them to walk as they were so sore underneath.

My GP has now suggested Duloxetine and Diazapam (to help me sleep), but the latter only for two weeks. Which defeats the point as Duloxetine was keeping me awake, and two weeks isn't enough! Pain clinic say that's ridiculous and no painkillers are intended for long term use (which made me mega roll my eyes internally!). She suggested tramadol, 50mg to be taken as and when I need it.

I am now taking 8 paracetamol each day and going out of my mind. I can't sleep and my stomach is in turmoil (IBS I guess as para doesn't do that?).

Has anyone else tried tramadol as and when? Isn't it addictive?

What else can I try? My GP doesn't have a clue and says I'm under the pain clinic, and they say I'm under my GP! Aaargh!!!
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Re: At a loss about what to do next (medications)

Postby carolad » Tue Feb 10, 2015 4:26 pm

Ugh, how frustrating for you!

Tramadol does cause physical dependency - I've read that it is harder to come off Tramadol than Heroin! :shock: Though having said that, if you are only taking them occasionally, you probably wouldn't get dependent on them. I have never used Tramadol that way though so I don't know how effective that would be. I have been on slow release Tramadol every day for about 6 years (for back pain, not fibro). It works well for me but I know it doesn't help everyone. It sounds like the Pain Clinic aren't going to prescribe anything for you long term though, which sounds very unhelpful :(
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Re: At a loss about what to do next (medications)

Postby ixel-chick » Tue Feb 10, 2015 4:33 pm

I think your doc might be onto something though... 3 weeks on the duloxetine isn't really long enough for your body to have adjusted completely, so it could be that after another 2 weeks of that and the diazapam you won't be kept awake by the duloxetine anymore. :-D As it helped with your pain, it wouldn't be something I would dismiss to quickly.
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Re: At a loss about what to do next (medications)

Postby fatalrazkaz » Tue Feb 10, 2015 4:37 pm

The pain clinic are not there to give out drugs. They are for helping you to manage your pain through the way you live. I was referred to the pain clinic and didn't find it particularly helpful as they don't really understand what we are going through.

I don't take any pain relief except Naproxen when a particular part of my body is unbearably painful.

Amitriptyline gave me the same problems as you and I was unable to function the next day so stopped taking them.

I take Gabapentin and it slightly takes the edge off of the pain but not a lot.

I've had this illness for 20 years now but was only diagnosed 3 years ago. I'm afraid the only advice I can give is what I do which is just get on with it. There is no treatment that helps. There are no painkillers that stop the pain. Nothing helps me sleep, I either do or I don't. If I don't then I kip during the day. There are not enough medical people that properly understand this illness. I just do what I can when I can. I am in pain from when I get up till I go to bed. Some days are worse than others. I also have Plantar Fasciitis so struggle to walk far without crutches.

Till they find stuff that works, or even better a cure, then we have to just put up with it. My Dr is fantastic and knew what was wrong with me from only hearing my symptoms once (after 20 years of 2 useless doctors who didn't have a clue). He referred me to all the right places but in reality there is nothing they can do. :banghead: xx
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Re: At a loss about what to do next (medications)

Postby Zia2014 » Tue Feb 10, 2015 4:58 pm

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Re: At a loss about what to do next (medications)

Postby loverliesgal » Tue Feb 10, 2015 5:22 pm

Hi, it looks like your doctors have prescribed you the 'recommended' list of pain relief with help for sleep, for somebody suffering from Fibromyalgia. I went through all of what you have, after five years we seem to have it so I can now function for about 8 hours aday, not pain free, but I can cope with it.

Amitriptyline 50mg at night, with 20mg of slow release Morphine, if taken at 8pm allow me to sleep from 10pm to about 4am, sometimes I get lucky and sleep until 6am.

I have diazapam for when I wake up in spasms, 3 2mg ones and it helps relieve the pain and spasm.

Pregabalin 150mg twice a day, works, as long as I continue with the Amitriptyline. This really is the best pain relief for me.

Tramadol, 2 four times a day - did nothing, I took for over six months and told doc they didn't seem to work, I stopped them dead and I had no withdrawal what so ever.

I have had fentanyl patches - with morphine syrup, left me as a zombie, Then I had butrans patches, allergic reaction to them at the site of the patch, stopped after several weeks of taking, no withdrawal symptoms.

I was on 1000mg paracetamol 4 times daily with codeine. I started itching, we stopped the codeine first but I continued itching, so doc put me on the morphine.

All I can say is my combination works for me. I don't think many others have the same combination of drugs, (I also have stomach ulcer and hiatus hernia so have ranitidine and omeprazole for that, along with my diabetic mix,)

I have tried duloxetine, oxycodone, not allowed any NSAIDS.

So you are not on your own with the wish for something that might work. Took me best part of 10 years to get where I am now. Not had a bad relapse for about six months. I hope you can find a mix that works for you
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Re: At a loss about what to do next (medications)

Postby Zia2014 » Tue Feb 10, 2015 6:15 pm

Blimey, poor you. I knew it would be difficult and there is no magic solution, but I don't understand why it is so hard to find something. A quick google and I've got a longer list than the GP was quoting at me!

I can just about cope with the pain on solely paracetamol at the moment, but the paralysis first thing in the morning is coming back. I've had to literally swing my body back and forth until I can get the covers off and am no good for anything.
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Re: At a loss about what to do next (medications)

Postby Gentlydoesit » Tue Feb 10, 2015 6:37 pm

Hi,
Sorry to hear you have not yet found a drug regime that works for you yet. We all hope that Doctors should have the correct medications that will help this frustrating and very painful ( not forgetting exhausting) condition.

Unfortunately as we are all very individual there is no one regime that works for everyone. It is very much a case of try and see. I know it's really frustrating having to stay on new drugs for a specified time if you feel that they aren't effective - sometimes it can take up to 3 months before we see any benefit. The lesser side effects do eventually settle as your system becomes more tolerant. Obviously there are side effects that affect us quite badly so much so that the drug has to be stopped. Some of us also have underlying illnesses that interact with some medications therefore closing that particular route straight away.

Pain clinics are really designed to help you adapt to your condition by giving advice on exercise, relaxation, diet, making us aware of our own capabilities and how to try and overcome difficulties and problems. Some clinics have Drs present to help assess medication and some clinics have Community Pharmacists who do the same thing, it will depend on your area as to what is available.

Yes I do take medication to try to alleviate some of the pain but I have always said that I will never let this condition get the better of me as once I give in everything is downhill from there.

Ask your Dr if there are any specialists who deal with this condition in your area, you can also be referred outside your area if there are not.
You have to stay strong and take one day at a time making sure that you rest whenever you can.

I wish you all the best in finding a treatment that helps you but please remember what someone else says works for them it might not be the right thing for you.
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Re: At a loss about what to do next (medications)

Postby dazzleship » Wed Feb 11, 2015 8:58 am

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Re: At a loss about what to do next (medications)

Postby kat101 » Wed Feb 11, 2015 2:06 pm

I have been on Tramadol for almost 6 years now. It worked wonders and took all the pain away right from the start with no side effects. It was great. Now I find it is not so helpful. About a month ago I was put on Gabapenton which has helped but I think I need a higher dose to help me more. Pain clinic has agreed with that. I still take Tramadol some when the Gabapenton doesn't do the job by itself but I don't take as much as I used too. I have high hopes that a larger dose of Gabapenton and some Tramadol will work as well as the Tramadol originally did for the pain. Already feeling less pain and looking forward to a better year this year. I know these don't work for everyone but they do for me. Only problem with the Gabapenton is the weight gain. I have gained 5 pounds already. Watching weight and how I eat and trying to get more exercise. If that doesn't work I may have to take a different route. I can't handle the weight gain because I am already overweight. Anybody on Gabapenton have any suggestions on how to keep the weight down?
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Re: At a loss about what to do next (medications)

Postby dejay » Wed Feb 11, 2015 3:52 pm

I take gabapenton and I did not know it caused weight gain,I put my weight down to not getting around as I used to,And I am thinking of joining weight watchers, will this help ? or am I wasting money? Has anyone tried this ? sorry getting away from the problem My advice is to keep trying every thing your dr gives even if you have to keep going to the surgery, It took me about 10 years to get a pain relief program that works for me, So I hope with new meds coming out someone somewhere will bring out something for us, hope everyone is able to keep chins up,and keep positive lol
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Re: At a loss about what to do next (medications)

Postby denys » Thu Feb 12, 2015 3:03 pm

Some people feel WW, Slimmers world and other groups help greatly with weight issues so give it a whirl and see, it might just be the thing for you :fingerscrossed: :fingerscrossed: :goodluck1: :goodluck1:
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Re: At a loss about what to do next (medications)

Postby becbob » Thu Feb 12, 2015 5:53 pm

I am on tramadol and I take 2x 50g four times a day, have for months. It is ideal for me as I don't feel spaced out, it also takes the edge of my pain most of the time. If they wanted me to come off it I certainly would. I am not addicted to them mentally. Also my doctor suggested that we play around with my meds with regards to the time taken, I take my duluxotine in the morning because I too couldn't sleep. I also take amitriptyline at tea time because they effects can last for 12 hours. If you have know where else to go it might be worth you experimenting with the times that you take what and work out when would be best for you. Good luck
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Re: At a loss about what to do next (medications)

Postby Zia2014 » Sun Feb 15, 2015 3:32 pm

Thanks all, only just got back on the computer to see all your replies!

I guess I was putting too much hope on Pregabalin seeing as a lot of people have said how good it is. I might give it another try when I don't have so much on as the only bad side effect was the itchy feet! If it was just that it wouldn't have been so bad but the undersides were so sore that I could barely put any weight on my feet after 5 days.

I can manage with the pain but the massive stiffness in the mornings is something I had forgotten about, so the painkillers must have been helping with that. The paracetamol wasn't touching that.

I have now been given tramadol and taken it once. I think I need to take it later as I was yawning my head off then went to bed too late! :roll: I am not going to take it every day, I will take paracetamol on other days to keep me going.

Gentlydoesit - sadly there are no local(ish) specialists.

dazz - you know better than most my views on medication ;-) If the CBT helps with techniques for sleep then I will willingly come off medication and cope with the pain/stiffness. But when I have a run of no sleep whatsoever, I'm afraid I don't feel as willing to accept there is nothing that can help. Sleeping pills do but I am not prepared to take them for any long period of time. I have tried literally everything else I have ever found for insomnia as I've had it on and off my entire life.

Yeah the TENS helps, I try and use it three times a day for about half an hour. I don't want to use it too much in case my body gets used to it, which I know might well happen. I also use distraction like writing my novel when I'm particularly bad, get up and move about, anything but focus on it. I'm pretty good at that usually, it's in bed that's the problem! I try and recite song lyrics! :crazy:

kat/dejay - WW definitely helps. My contraceptive increased my appetite hugely and I still managed to lost 3.5 stone on it. Don't assume being on medication means it won't work, it just means making smarter choices and being aware if you are more hungry about what you choose. But it can be done.

becbob - I was taking the duloxetine first thing in the morning and it still affected me! I was jittery and felt a bit 'mental' all day, and then no sleep. Also on the Amit I used to take that as soon as I could after driving, so about 5pm.
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Re: At a loss about what to do next (medications)

Postby lisaward127 » Thu Mar 05, 2015 1:03 pm

Oh the ongoing problem with pain relief. I've stopped taking any pain relief except for morphine which I take only at its worst. I have been referred to the pain clinic in Cambridgeshire the day and return referred me to the pain clinic in Bath. I will spend three weeks there on a pain management program where actually being impatient and they will take care of all my care needs there. I'm hoping that the program will teach me alternatives to taking pain medication as the pain specialist explain to me that medication prescribed for fibromyalgia is not always effective and if they are it's not effective long-term. I have suffered every side-effect possible with medication. The best advice I can give you is to try and manage the pain in alternative measures then taking medication. This is a long-term condition and the last thing you need on top of it is addiction. I wish all the best and please be careful as medication is that as prescribed by GPs don't always tell you what effect will be when you come off the medication and how long it will take. The pain management program I'm in attending will also help with any side-effects that I might have incoming of morphine all antidepressants. good luck and God bless.


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