It sounds like you are having a rough time of it. I have recently been taken off Tramadol. I reduced from 600mg three times daily to 100mg x three times daily of Gabapentin; I have been reduced from 200mg Topiramate twice daily to 100mg and Amitriptyline 150mg. Quite a significant drop in all. The GP that reduced them told me if I was in pain, I had to suck it up. Another GP with whom I have a better relationship was more understanding; he asked if I wanted the meds increased. However, I chose not to because I think I had become dependent on some of them. I don't think they were helping. Meds do not help everybody; you will discover what works for you. I have been given Mirtazapine 15mg at night, which is an antidepressant to help with my anxiety, mood swings and sleep, which all became worse after my meds were cut. This seems to be helping me. It does seem complicated to understand the wisdom of the way we are dealt with; I sat and cried when my meds were stopped because I was in so much pain; however, now I am beginning to realise that I can cope without them, I rest during the day when I need to without feeling guilty, I pace myself better than I ever have if I can't manage to finish something I don't see it as failing like I used to I think it will still be there to finish tomorrow. I talk more openly about my fibro to my family; I don't think they fully understand the full extent, but bless them, they try to talk about it; they ask me questions now, which they never used to do because they were afraid to in and because I case it upset me.
The issue is the opioid medication and all drs have been told to stop prescribing due to them being so addictive. For over a year I was prescribed Oxycodone and got to the point that my body had become so used to them that they stopped helping. The pain clinic put me on buprenorphine patches going from 5 to 20micrograms in a couple of months. These are still an opioid but work in a different way. In fact people are prescribed them when they have an addiction.
Read up about it and ask your pain clinic to prescribe if you are keen on trying.
Hi sweetie 🙂,Thank you for your advice. I will certainly look into the buprenorphine. I wasn't given any alternative help.
I feel a bit of a wimp lol as I've been using the morphine liquid for about 8 months and only 20 mg per day but when I drop by one cube it sets off my Fibromyalgia quite quickly.
I was on a higher dose but it affected my walking ability so reduced it myself. It's just this last 20 mg that is flooring me. I'm kinda angry with myself actually.
I'm in constant pain at the moment.
I think I'm doing this too quickly after stopping cold the tramadol from a high dose only a month ago.
My Carer is very concerned as dropping by one cube per day seriously affects my walking and strength in my body. My legs are already weak.
Excuse my ramblings lol I'm particularly tired
I'll shut up now and go look up the meds you suggested
Hi Lady Joro , I toally agree with what you say. I think we are all depressed because of the pain. But somehow the doctors don't seem to understand that.
I have a friend ( she’s actually a doctor in Mexico) that was addicted to Tramadol. And she begged me to send any and all Tramadol I had left after my knee replacement. They are meant for short term use. As is morphine I would suspect. ( I’m not a doctor) but when I had brain surgery, I couldn’t handle morphine ( I vomited) and Codene- same thing) so my doctor gave me an anti inflammatory drug while in the hospital. I worked just as well without side effects. I’ve taken gabapentin for arthritis until my husband made me stop because it messes with your mind. I was acting like a crazy person.. The gabapentin seems to be a drug of choice these days. It’s cheap and non addicting ( not really) but what is left? Norco, but that is totally addicting.( I lost 20 pounds in the bathroom over a 3 day period trying to “ de tox” after a hip replacement,) Is there any way your doctor would prescribe Canabus? I’ve heard it works well for pain. Gabapentin, not so much. It gives a kind of “euphoria”.Maybe if you could try Tramadol again ? There isn’t too many things that aren’t addicting,but that pain has to go. Tell your doctor you are in terrible pain and ask for something other than gabapentin. Be honest and tell him/ her you have severe pain and you cannot live like this.
Thank you Skylane2 for your reply😊.I have a ton of tramadol spare ready to go to the pharmacy.
I'm severely allergic to all none steroidal inflammatory drugs and aspirin. See me rolling my eyes at myself lol. So that avenue is out for me meh.
The Gabapentin help relax me but only for about an hour. I'm bipolar so it's difficult to tell if I'm different but my carer has neuropathy and was given Gabapentin . He took it for 2 days and said it made him hallucinatory and become dissociate. He took the pills to pharmacy and have Gp a telling off lol
He is now on anti inflammatory meds only.
Thanks for your advice which I will listen to.
My Pain clinic Dr said they would try me on pregabalin ? But I've heard good and bad things about it.
Hi there yes i have been on tramadol for 18 year about16 year the highest dose 400 mg a day i was on 2100 yes that does say 2100 mg of gabapenthin it was to high i think that it has caused problems .. my back is bad thats why i was put on tramadol i carnt come off it now i don't think did they reduce yours the tramadol before they took you off it because they should of done .. go to your doctor and tell them since you have stopped the tramadol your pain is worse ..rheumatology told me to come gabapenthin tramadol all that works on your head because of the fibromyalgia but they didn't think about the back problems so i didn't ...i can't come off all the gabapenthin either because my hands and feet burn like red hot pins going in so im stuck on 600 mg a day i also think the gabapenthin may of contributed to the fibromyalgia being on such a high dose .. my life is a very painful mess as i know yours will be and my heart goes out to you im not on here much because im not good at writing things its always back to front i hope i have been some help to you if you don't understand anything i have put just ask me but i would go back to your doctor and tell them the pain your in they are stupid sometimes they really are i don't think some of them understand fibromyalgia much at all its one of the worst things anyone could have its so debilitating and courses so much pain and depression to be honest its crap i hope you get sorted please let me know how you get on lots of love Jackie
have you tried acupuncture? It probably sounds weird but it works if you can find a good acupuncturist. I had sciatica really bad and my acupuncturist cured it in 3 trips. I’m not saying it will be that fast or easy for you, but I will pray that you will find the help you need. It’s not a one time thing either. I’m lucky enough to have an insurance company that pays for all but $50. a visit. I’m in the states too, so not sure of the rules where you live. The hardest part for me was getting dressed and getting a ride to her office.🙏🙏🙏
Hi sweetie 🙂,An old friend of mine from years ago Kev swore by it for his back. And for many years.
I'm in the UK and our government has destroyed our NHS so if you want quick results you have to go private.
I can't afford that at the moment however I'm eager to try anything that helps so I'll look around and get quotes and get saving.
Thanks again.
My carer was naughty.
He put 2 cubes of morphine in my drinking chocolate😂🤗.
Means I'll have to start again reducing. My carer doesn't think the GP is right as I nearly fell again as being in so much pain is crippling me. Everything is flaring at once.
When you had acupuncture how many needles did they use? Did they sting? Kev said he couldn't feel the needles at all. He only stopped because the NHS withdrew the service. I was young then lol.
He mainly smoked cannabis for relief.
Poor guy.
I'm so glad you got relief. How long does it last after a session?
Hi how are you i live in uk lake district the rules are probably different here i think they look at fibromyalgia differently .. i have read somewhere the states have started to pull there scocks up a bit more and are starting to do more testing and being more up to date with it im not sure how your doctors work there but i think if tramadol helps you they should be giving it to you the pain is disgusting and you just don't know what its going to do its in my joints at the moment i read something yesterday there some new medicine either out or coming out duloextine and the other is pregabaline they could be available not sure i could be behind the times but it was 2023 i am going back to rheumatology soon i will ask them i say soon i have to make an appointment they have fast tracked me fingers crossed i will look at acupuncture unfortunately i have 2 bottom disc's missing and up to about half was slipped or bulging so im not sure i will find out though thank you i really appreciate you taking to me i hope you get sorted and they do the right thing to get your pain sorted take care Jackie 🙂 xx
Oh no Sweetie you sound worse off. I totally understand you not being able to come off tramadol and Gabapentin.I had been on tramadol since 2002. I sure wasn't happy to find out tramadol is also a low dose antidepressant an SNRI which makes it doubly hard to come off. But I take venlafaxine so I increased that got off tramadol not too bad. Now I can't stop the extra venlafaxine😵😖🙃 what a mess lol.
You're neuropathy sounds like my carer s.
I have it too my hands are worse than my feet tho.
The burning fingertips is awful but yours sounds agony sweetie🤗
And constant back pain😭🙏you get some relief.
I'm at the point I need a brew as my other carer is coming to wash me 🤗🙂.
You please take care of yourself.
I will let you know how things are going.
I have to stop feeling sorry for myself and suck it up lol hugs Dawn😊
I've been on Tramadol max dose for 4 months. I take Naproxen and Paracetamol. Everything has its downside. I started with headache about 2 weeks no let up and its severe. Another one of the doctors said it's all the medication I'm taking. Doctors prescribed it all in the first place and I used to have to wait to talk to the clynician if I ran out, and of course getting withdrawal symptoms every time. I'm waiting for a callfrom them to talk me how to come off them. They are actually no good for anybody. Long term
My wife has to change me twice a night because of the sweat that literally pours out off me although I'm on Mirtazapine which has that same side effect.
Anything that helps is just short term because of the side effects caused.
Hope this helps and you feel a bit better. Really a lot better
Hi Flashy 😊.My Carer is in the middle of washing my bedding for the same reason. I use incontinence sheets but they only got part way.
Mirtazapine made me bad tempered. I take venlafaxine now and have settled mainly. I still sweat 😓tons in the night even if I'm cold. I'm not water bottle d up yey.
I understand about the headaches. My old Gp sent me to hospital with severe headaches and constant has pain. I was surprised as I've had headaches since I was 8 years old.
Hi, I was on 4 x 300mgs Gabapentin daily. But I felt that it wasn’t helping at times I actually felt worse. I wasn’t prepared to go through the different symptoms of trying to find a pain killer that would help me. I chose to go online and look for alternatives. A lot of the joint pain was caused by arthritis and inflammation. So I started using Turmeric on a daily basis. I also use cider vinegar capsules and other herbal remedies. It wasn’t an overnight improvement but eventually I did feel the benefits. So much so that I only take painkillers when I have a flare up. It might not help everyone but it definitely helps me. I manage to get out most days which would have been impossible when I was first diagnosed. I also go to an Osteopath once a month which also helps but to begin with I couldn’t stand anyone or anything touching me. I also had to cut different foods and drinks from my diet. Carbonated drinks, citrus, spicy foods it was all trial and error. I’m not saying this would work for everyone but when you’re desperate it’s worth a try.
Hi, I just had a call with GP pharmacy team today regarding my long term tramadol use. He basically told me because of the length of time I've been on it it's actually doing nothing for me anymore?
He was really nice, wasn't pushy or anything and is leaving it up to me to contact them. He said it won't be pleasant coming off them and my pain will be much worse for a couple of months then it will go back to the level I'm at just now.
Said the only thing tramadol is doing for me just now is stopping me going through that bad couple of months withdrawal. If I had an accident & needed pain relief they'd need to go into morphine whereas if I was off it and needed temp pain relief lower dose tramadol would be effective.
I came off long term Arcoxia last October myself as I now have CKD probably caused by medication. It's a nightmare, I totally feel for you.
I was on oxycodoine 200mg twice a day (10 tabs). Gp decided he wasn't going to prescribe them any more and wanted me to reduce it to 180mg over the day. I put the phone down I n him as I was so upset and anxiety through the roof. He said the meds weren't doing anything for me. A few weeks in I'm now down to 4 tabs(160mg) over the day. Although I've done it my fibro and arthritis pain is horrendous. My appetite has been bad, really bad headaches just to name a few issues since reducing. I think wen talking to my gp he just sees me as a name on the screen. As long as he's reducing my meds he doesn't give a s... They don't understand what it's like to be in horrendous pain! How can they unless they've lived in our shoes. I'm just waiting for another gp call to reduce the last amount but tbh I can't cope with reducing them any further. I haven't felt well in months. Sorry for the rant ☹️
Oh sweetie I'm sorry you are suffering so much! And you're completely right. Number on a page. I don't care what anyone says I'm not an addict. If my morphine didn't still work of come off it myself.They've blindsided you and it's so wrong. No one should go through so much pain because this government told the Drs to make is come off grrr I'm so upset on your behalf and everyone else going through this.
Both my carers have noticed the change in me.
I'm very weepy angry so exhausted and can barely walk. My carers said they disagree with Gp and the pain clinic and have offered to come to any appointments to tell off the Drs😂😍🤗.
At this time of day my pain ratchets up.
And I'm so cold. I've got metoclopramide tablets for my nausea but I take those anyway.
Do you get any support at all?
Not that it will help you with the pain.
Your Dr is a s... .
I don't know what else to say except that I'm thinking of you and you can vent at me any time🤗🤗🤗Dawn x
Thank you for ur kind words, it means alot. Apart from my daughter/son I don't av any other support. I suffer from osteoarthritis, fibro, underactive thyroid, sleep apnea, chronic asthma, depression and anxiety. As well as all the side effects like fatigue etc. Drs just don't care it's all about profit and finances and how they can save money. Therefore the patients are the ones that miss out. How do u spend ur day? Got any interests? I have a couple but I feel so tired and in pain to bother with them. I could sleep all day wen I'm in so much pain. I'm just wondering if it's worth asking my gp to refer me to pain management again to see if they can offer me anything alternative for the pain. How do u manage ur pain? Do u live on ur own? I do. I'm also waiting for a total knee replacement but it's just a case of waiting. Thanks for listening. It nice speaking to someone who understands wot pain is. Hope Ur not in too much pain this evening x
Hi Diane65,Thanks for your reply. I was thinking about you most of the night. I managed to get comfortable until I needed zillion pees.🙄.
I live in my house with my carer. We live separately but as my health took a turn we more or less share. We split all bills. Originally we lived in separate flats. I was on No meds and my bipolar took over. Pain drove me to be angry. I walked around attached to my TENs machine even before I was diagnosed other than Sarcoidosis I've been I'm pain since I was a kid.
I now have sciatica bursitis and osteoporosis and fibromyalgia copd and I'm diabetic. Not one pill didn't put weight on me meh. Never mind being bipolar with severe anxiety. Not don't we all have. Problems. The Drs take advantage of us. And aren't above watching us suffer and not caring.
You should search for alternatives as the pain is overwhelming. I self medicated for years with methadone. Not proud of that. But I'm proud I weened myself off it and never touched it again. I've been off it since 2004.😀. Don't be fobbed off.
I agree too easily and regret it. Now I'm lucky as Jon my friend carer and Gemma will support me
When I run out of morphine to get more.
I mean really I'm still withdrawing from the tramadol. And to be honest I just want a break from the pain which I know you understand.
Everything is flaring which is just typical lol.
My next door neighbour had a knee replacement.
He's spritely but still in pain.
I hope you get yours asap. I hope you have a good day or at least a better one. If you need to stay in bed you do that!
Jon's just gone cycling. 4hrs eep. He needs it to be away from me and the house for a while🙂
I’ve been struggling with it for nearly 20 years altogether now, the first 10 years of it undiagnosed, it was a nightmare! Having loads of tests, all coming up negative messed with my head! Paranoia, anxiety and depression at times but no luck getting diagnosed, IBS and other suggestions but nothing conclusive!
So after being put on Painkillers by the Pain clinic and eventually the only alternative left was Fentanyl I realised that they were doing nothing for me so I went to the Doctor and told him my fears, it took me nearly two years to get clean, and my pain was no worse once withdrawal had settled. Then Gabapentin, I put on loads of weight so got put on Pregabalin which I am still on but a low dose now, again weight gain problems so coming off them. I’ve had Amitriptyline for a while and now had Citilopram ever since. I’ve found that the pain hasn’t changed much, but my mind has - it’s been a case for me that acceptance of “fibro me” has been the hardest but most empowering experience.
I don’t really allow it to rule my life now, I do most of what I want to but not usually how quickly I would like to, again it’s accepting my constraints to a point. Having interests for me is very important, listening to and making music helps a lot as does Art, painting and on computer/tablet, taking your mind off things really helps, the more you think about pain can make it worse.
I hope that you can take solace from things I’ve learned, I don’t advocate my thoughts for everyone, we’re all different especially as regards Fibromyalgia.
Hi Tisme72,I greatly admire your outlook on fibromyalgia and your coping mechanism s.
I like to follow Bob and Brad in seated exercises. Watch cute funny animals especially cats dogs and talking 🐦 lol. I find it too difficult to read at the moment but I browse things I can't have lol😂
I'm on here alot. I find it calming and a well of knowledge and support.I
Im sorry 😞 it does look like i am behind the times people on here have been on them its so sad to read what everyone is going through i don't understand why there isn't more help for us if the doctors got it for a day they would know then what its like ... kind thought's xxx
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