I am seriously thinking of coming off my medications as I don't think they are making any real difference. I know it is something to be done slowly although apart from my anti depressants I'm on fairly low doses.
Taking these medications has made me put on weight, pregabalin.
Made me really constipated, tramadol.
Always tired, all of them!!
I would love to know if anyone else has done this and how they felt. I have seen a supplement called fibrolief that is made from natural remedies and I'm wondering if it is worth a try.
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glochessum
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I am not on much medication as I felt I was tired enough without the added effect of meds that for me didn't do much, for safety see your GP, I now only rely on pain relief and meds for other conditions. I have not heard of the supplement you mention, it may be worth a blood test to find out if you are lacking in any vitamins and minerals I am on prescribed dose of vitamin D and iron that were both very low my GP said that with Fibro some patients do not absorb nutrients and no, he doesn't know why yet just his observation. Lou xx
I had a blood test a few months ago and it came back normal. My gp just says if it's not working don't take it. The last time I saw him he made me feel like a drug addict as I said the slow release tramadol I was prescribed by the pain clinic wasn't enough and I needed something in between doses, he gave me cocodamol and naproxen.
I totally understand where you are coming from glochessum and respect your decision, but would strongly urge you to withdraw your medications very very slowly in a controlled way, possibly in conjunction with your GP, but it sounds very much to me that a change of GP would be of more benefit to you in the long term, as lou so rightly says no one, particularly not a GP, has the right to make you feel the way you do.
Sending lots of positive, healing and soothing pain killing vibes your way 😀😀
Hi glochessom, I am stopping my dosulapin antidepressant I was on 25mg am & 75mg pm, for fibro. Had fibro for 15yrs & been on them for most of that time. Just didn't think they were having same effect now, chatted to my gp & started weening myself off them. That was a month ago & have another month to go approx. Yes I have felt slightly worse as in pain but its night time sleep that is nonexistant, , just can't get off plus my fibro-feet give me gyp. & shoulder &arm. S'pose I know for sure later on if I really need an alternative treatment, but WHAT, hope I've made right decision.
If you wish to stop all medication, please be careful & take it slow.
Sorry to hear you're having problems sleeping. I was on Duloxetine for mood and pain relief along with Tramadol. As I've always had sleep problems asked gp to change meds as not working for me. She put me on Mirtazapine 15mg at night started on tues after weaning off Duloxetine. Wow! For the first time in my life I have slept a whole 9hrs, 8hrs, 9hrs (have noted hours) . I felt fuzzy headed first 3 days but OK now. My body actually feels rested and haven't taken tramadol as often(will wean of them too now with gps guidance. Wear BuTrans patch for pain for other conditions. Don't know if it's something your gp might consider? My mood is still OK so don't miss duloxetine. I've resigned myself to the fact that medication works for me and am looking into gentle exercise techniques with OT/physio for help with pain of fibro. Hope you find something to suit you.
Hi md55, sorry for late reply. Its funny how many meds. we have to try till we get one that suits, its trial & error I know. I hate taking tablets but needs must. I'm extra very tired with coming off dosulapin along with fibro fatigue I fed up but won't give up. Hoping visit to gp will be more informative than last time, might make a 'double app.' as I have a lot more to ask & we're only allowed a 10min slot, very frustrating. Thank you for your info I will write it down & take it with me.
So glad you're getting there with your sleepless nights, I can't wait!!
Amytripteline made me really dizzy with no noticeable pain relief, Gabapentine made me constipated and put on weight, Duloxetine kept me awake at night but made me really sleepy in the daytime! Finally it brought me out in hives so am currently on such a low dose it is not doing anything and I want to stop (although my GP wants me to continue).
I have come to the conclusion that pain relief when I need it is the only way for me. I have shooting pains in my thighs, difficulty walking far or standing still for long. I have two frozen shoulders and pain in my knees, hips and neck.
I am still working part time and I think this does me good as it gives me a focus and stops me sitting at home feeling sorry for myself, but it is hard to keep going and I am often fighting to stay awake while driving home! (scary)
I had not heard of Fibrolief but will look out for it. Anything is worth a try if it helps us feel better, so give it a try!
I hope you find a way of coping that works for you. You are not alone!
I would definitely discuss this with your GP prior to coming off them, as some medications need to be reduced slowly. I want to genuinely wish you all the best of luck if you decide to go ahead with this.
Thank you so much for all the advise. I know any cessation must be done slowly and I'm willing to do that ( not like I can do a lot of anything else). My ideal is to stop the pregabalin, trazadone and slow release tramadol and just take pain medication when really nessesary. I will not be altering my antidepressants (happy pills) as I've tried that before with bad results.
My only real problem that I think the pregabalin helps is RLS although I suffered with it all night last night, and I had taken it. Although it's not as often as I did get it. I think that is one of the nastier affects of fibro, close to earache and toothache.
My doctor is ok and bless him he tries his best, he really has seen the worse of me and been very supportive in the past. I live in quite a rural area and he is very local, I've been seeing him for over 20 years as do the rest of the family.
I will keep you posted and let you know how it goes
I understand your thoughts very well. I came off my endo-specific meds 23 years ago as the side effects were all the things I was trying to get rid of. My doctor and specialists were incredibly condescending, plus there was very little information around back then.
I went to see a naturopath recommended to me by a friend. She brought together alternative therapies from both eastern and western medicine and aimed to treat not only the symptoms, but find the cause. This was a whole new approach.
She put together a diet-plan, some pretty foul tasting liquids and some teeny weeny tablets. The first few months were really tough and you have to be strict with yourself, but I have been med-free (apart from pain killers when needed - not often) and op-free ever since.
Yes you pay for this service and some people said that she would eke out the treatment to get more money out of me. I probably saw her six times in total over a year. She relied on recommendation from people getting well, not ongoing patients.
It was the best money that I ever spent, and it wasn't expensive in the great scheme of things.
I still follow the same basic diet, but have reintroduced a little of some of the foods I like, here and there. If I feel ropey, I re-adjust what I'm eating. You can't help but get in tune with what your body is telling you.
I would ask around, or ring, or email to see if you feel if the person feels right for you.
The lady I saw didn't specialise in one type of alternative medicine, and was willing to work alongside conventional medicine.
Everybody is different, and what works for some, might not work for others, but this overwhelmingly worked for me. I also had faith in what she was doing, where I had lost all faith in what the medical profession had done for the 9 years previously.
I wish you luck, health and happiness.
Maud x
I went to pain clinic on Friday and had my pregabalin cut down with instruction to get off it and I was told to stop tramadol immediately
This leaves me with:
Butrans5 patch
Naproxen (plus the tummy protect ones)
Nefopam
Duloxetine (do bugger all for pain but A/D great
Nortriptyline (up to 50mg at night)
Oramorph 10mg/5ml for breakthrough
Make me poop sachets
Pain specialist said I should use the morphene when needed.
I had anaesthetic / steroid injections in my neck muscles, shoulder and s specific place on my back - helped for a couple of days now itching, burning and pain back.
I can't sleep for the ticks and spasms plus headache caused by tramadol withdrawal and I'm wet with sweat most of the time.
I've used the morphene 2-3 times a day for 2 days now urgh surely that's not how it's meant to be, is it? I'm thinking my patch needs to be increased
I've not heard of that but I've heard that licorice, turmeric, coenzyme q10 and 5HTP can help but I've only just started looking at that while I was awake all night last night.
I daren't take anything until I've been back to my GP to check it out, I'm going to try get a endocrinology and rheumatology referral
I'm going back to my doctors this afternoon to discuss my medication. The pain clinic put me on tranquil (slow release tramadol) but I don't find it as effective as normal tramadol. My depression is also a lot worse, not sure what can be done though as I'm already taking 300 mls of Venlafaxine .
I'm down to 150 mls at night of pregabalin but still not sure if it has any effect. My doctor has suggested patches although I haven't tried them yet.
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Zomorph and oramorph
It's been a journey
Feeling low - in so much pain...
"Well you don't look unwell!!!"
Having a horrible day :(
