Hi all, I am on a mission to clean up from all the poisonous medications as I am was literally dying from pharmaceuticals, I have started a blog tracking my daly progress and with what has happened to me lately just maybe some of it might make some of you feel life is not as bad as you thought it was, I am trying to build up a Fibromyalgia group on Facebook and am very interested in hooking up with other bloggers with Fibro.
My blog is available via stuartotwaysmith.com thanks.
Hi i am not on face book but can follow you on here that would be interesting , i am glad you sem to be under control of your pain with no meds and thats good if it works for you and hope it keeps working but i dont thinkmit would be for me and none of us should ever stop taking meds weithout consulting the Gp as you never know what the outcome of that maybe but pleased for you and its great as you obviously have your Gp backing on this good luck and keep us all posted love to you Diddle x
Stuart you have rattled the cage, I am very wary of pills and potions and I am at the moment on the hunt for a good doc that won't just chuck pills at me.
I will look at your blog and have a chat later off to a FM meeting ...
I got told off for trying to go cold turkey with one med. I'd felt even grottier than usual and it was because of withdrawal symptoms.
Best of luck with your trial Stuart. Hope it works out for you, but meanwhile most of us are stuck with the meds to help us through our day.
Hi Stuart, I admire the fact that you would like to be medication free, idealy that is what we all would like to be I think. however I have to say something here. I have been on various medication on and off for some time, I was on Fluoxitine for depression for 2 years after counciling hadn't helped, I felt I was better and like you wanted to be medication free so came off slowly (with the help of my doctor) I then struggled for 2 years until the doctor strongly advised me to go back on it, I tried again to come off it after a couple of years with the same results.
I had undiagnosed M.E & fibro at the time but refused to take painkillers thinking I was giving in to the pain if i did and being undiagnosed I thought maybe it was all in my mind & my husband (now no longer my husband) said "you don't need painkillers....work through it and it will go away, use positive thinking" so I gritted my teeth and suffered for months till I could bare it no longer. I have gotten worse over the years, I can now hardly move, I also have spondylosis now too the painkillers at least take the edge off the pain & the new antidepressant Citalopram helps to stop me shaking & keeps me from getting too down.
Don't get me wrong, I would rather not be on my medication and I am very wary of it! but I was put on it after trying other options which were not successful.
I really do hope it works for you but that route is not for me at the moment
I would love to be medication free. As I have always wondered what are the Fibro symptoms, and what are side effect symptoms....BUT I also know, that we should NEVER just stop taking the sort of medication we have been put on. It is dangerous, and would be very irresponsible of anyone to suggest doing it. In order to save my surgery some money, my GP had to review my medication. I am currently on Pregabilin (Lyrica), which I believe is about £100 a box !! She asked me if I would be prepared to try Gabapentin? She said it does the same thing, but is cheaper. I have been taking Lyrica for quite a few years, and I wondered if it was even doing anything anymore? So I agreed to do the swop, as I thought it will at least reveal the pro's & con's of being on it. (She did say that if the swop didn't work, then I could go back to the original one !) She gave me a strict reducing down regime. And even still, I have experienced some very unpleasant and painful side effects (dread to think how I would have felt if I had just stopped dead, it isn't just the physical effects, it is the psychological one's, which, in some people, could lead to suicidal thoughts etc) The pain in my shoulder's, neck, head and arms has hit me hard. I have experienced dizziness, and have felt sick. Not feeling too good at all, but I will persevere. I'm now down to one a day, for 5 days. I then have to leave 3 clear days before starting the Gabapentin. I am noting all side effects of coming off the Lyrica. I will also note side effects of not being on either, as well as when I start the new one. If for any reason, I felt great without anything, then I probably won't start the Gabapentin ??!!! But I have got a feeling that I do benefit from the med, and those benefits outweigh the negatives (e.g. I hate having a dry mouth, as a side effect, as well as the weight gain) I do try hard not to ask for, or take too many meds. The only other med is Tramadol, which I usually limit to once a day (usually mornings, when I feel at my worst), and Citalopram, to help with the stress of dealing with my son, who has Mental Health & Drug problems. I don't want to fall into a trap of taking too many, but equally, if I do need certain meds, then I will take them, rather than suffer unnecessarily ! Keep things in perspective as they say !!
I am doing the same as you at the moment Helen and I feel awful,seeing doc tomorrow and dont know if I can string two words togethr at the momement.
trying to write it down but not making sence.
Hugs to you and hope it goes well. xxxx
Hi hun, I know how you feel, so do I feel awful. I really did not think the med was doing anything anymore, until I started coming off of it !! Like you, I am stuggling to put words together. In the end, I can't be bothered trying to relay some things to my poor hubby, so I give up ! He is upset that I am putting myself through this, to save money for the surgery. But I suppose it has been worth it, if only to prove to myself that some med does help the Fibro, and I'm not putting up with the side effects for nothing !! How I feel now, is worse than the side effects I normally experience. Comes to something, when we have to decide which ailments outweigh the other !! I would be interested to know, what other symptoms you have, as I'm not sure if mine is all due to the reduction? Or whether I happen to have other things wrong e.g. a virus etc?......My Fibro points have flared up, especially neck, shoulders and arms, very sore and fatigued. Infact all my muscles are hurting, including the ones in my chest wall. Even my boobs are tender, which I have not experienced for a long time. My digestive system is so uncomfortable. Pain and strange sensations all through my intestines. My bladder is uncomfortable (thought I had an infection, but sample was clear !) I keep feeling dizzy and sick on and off. Feel really hungry one minute, then can't eat at all, or waste most of the dinner, that dear hubby has cooked for me (bless him) I feel tired and lethargic, aching, weakness & stabbing pains in arms and legs. Brain won't work properly, headaches, and no inclination to do anything. Now I know that what I have described is also Fibro itself, and I do experience 'flare up's' even when on full med, which can confuse the issue ! But it feels different to the usual symptoms. It is hard to explain exactly how?? I just feel wretched, in mind and body. Can you relate to this, or have you got different symptoms? Hope you feel better soon. Hugs returned xx
I stopped taking tricyclic (not sure of spelling) anti-depressants abruptly many years ago as I didn't like the side effects and ended up in hospital--lesson learnt!Over recent years I have been on tablets that are serotonin based which don't seem to have the same side effects as tricyclic's,some times it's difficult to tell whether it's the condition or the side effects of drugs that you are taking that's causing symptoms,rather like a good cocktail you need the right mix and right amount for your personal requirements. when given medication it's a good idea to be as informed as possible about it so you can discuss it with your doctor.
Your mefs can remain in your system for several weeks before you may get withdrawal symptons. You do need to come off under medical supervision because you could have a stroke or chemical imbalance you are not aware
of. You may feel normal but be acting really oddly, so please seek help co
ing off meds. I've tried cutting mine back and thought i was fine till I was told I really should go back on them - by worried best friends. All the best.
Sorry to those people whom thought I was trying to persuade and condone stopping medications, I do not.
It is dangerous and can cause you harm, but where I was in fitness I just didn't care, when you're dying from pharmaceuticals and they are making you worse not better, when you have tried every single drug they have for over ten years, there has to come a time where you just want to feel like you, what does Fibromyalgia feel like without meds?
Who am I?
I was somewhat shocked by some of the comments, because I have never once suggested to anyone to do what I am doing nor did I ask for you to, I was only joining a group and sharing my experiences with you, thanks, Namaste.
No offence given Stuart - have been going through the same 25yrs - a case of living each day as to how you feel at the time and make the best of those few hours or if your lucky day a you can. We have it will not luckily die from it. All be it sometimes we feel we would like to.
Hi Namaste, I'm sure you meant to say what you did, with good intention. The written word, can so easily be misinterpreted. So don't worry. Your comment has brought up an interesting point, which I'm sure, a lot of us think about a lot, I know I have. But any withdrawal, does have to be taken seriously, and preferably with the guidance of a Doctor. Always best to add that, at the end of your comments. Anyway, how have you felt, since being med free? You mentioned the negative effects of being on med, but do you miss any of the positive effects, if there was any? Are you saying that your Fibro symptoms are the same, better or worse, since being med free? I would love to have your feed back. I explained in an earlier reply, that I am in the process of reducing down med (Lyrica) I feel awful at the moment, but is it worth it in the end, I wonder? Take care !
Where to begin! it is 2am and I am awake since not taking my meds I have had a terrible time sleeping, and the twitching in my legs still wake me at night.
I was very ill for a number of days, very sick, every liquid inside me came out of both ends it was very unpleasant, I think most of the nastiness was the tramodol that stuff sucked away my life till all I had left was a gaze, and a glimpse of reality.
I am in a massive amount of physical pain right now, and extremely tearful, I am finding this very hard to type.
Within my self I am starting to understand what it feels like to just be me even with the pain and fog, I feel much more sane.
Sorry but it's very hard to explain in such a short format.
I have been juicing almost everyday and using a super foods supplement as I had become anorexic from the amount of medications pretty much stopping me from eating anything without vomiting.
I did take two Tramodol two days ago I think it was, that is the only medication I have taken period.
I felt much calmer, more relaxed, felt the morphine, then the anxt kicks in, but my pain levels where not really any different, I have had pain killers for so one that it is like you have almost forgotten why you take them in the first place, they certainly make ME feel better but they have not helped my pain, just allowed me to wither away like a dying flower, and not even notice.
It is a shame that you are so closed minded and angry I would assume that all information regarding this problem would want to be shared right wrong or other wise, take care and don't take things so seriously
I appreciate why you are doing this. To be honest yes I have tried myself. Thing is with fibro it is an unknown quantity which at the moment we are all being experimented on. There is no miracle. For me when i HAD A BAD FLARE UP CAME TO THE POINT i WAS CLIMBING THE WALLS AND RETURNED TO MEDS. Yes our pain level heightens but not to the extent where we can move on without meds. We get angry as normality of life has gone. Treated by hypochondriacs by some! We have to try these meds - how on earth will the specialists find out otherwise what will help us. All I ask is understand more and realise if you feel you are being treated for fibro and know in your heart there is something else wrong other than this. Be persistent.
It isn't that I don't think I have Fibromyalgia, I have witnessed almost ten years of being told my pain does not exist at all, at least now we can name it something, it is more that I feel that nothing pharmaceutical was working for me, not that I won't take them again but I was taking medication for side effects of side effects, and getting progressively sicker much sicker.
I totally understand where you are coming from. The only thing that helps for me is called RAPID IBUPROFEN LYSINE 342mg. For a week or two they did affect stomach but persisted and now yes after many many years I find they help inflammation. These I bought from our local chemist would you believe. The doctor did give me the ordinary Ibrofen but they were useless. I top these up with PARACETAMOL. It is to some extent we are on our own until a true drug is found for fibro. It had come to the point more than once that doctor would not recognise that I had spine issues and insisted it was all down to fibro grrrrr. I can cope within the home but outside have to use mobility scooter - cannot travel on any transport. Desperate am now waiting for report on MRI SCAN which I have had to find the money to get done privately. This is just to prove that I need help for the spine. The doctors really are at a loss and as you say give meds in hope one or other may help guinea pigs we are. All I can say is do best for yourself just do not let it go to the extent you go into a bad depression due to pain. I worked in Psychology for many years in asylums [not as patient lol] little did I realise after an accident their it would take my lifestyle and working life away. Was married but divorced as I knew it was a matter of knowing I would cope better on my own. warmer weather is arriving in UK and yes it helps a little,
Keep fighting and take care
I haven't seen anyone mentions bathing, I bath everyday in hot water sometimes several times, this is great help for me, although I do need help getting in and out, and it had got extremely expensive with the energy prices rocketing and we are on a water meter so really notice.
I also had a VERY BAD experience with stopping my meds on my own advice, I didn't like taking them, and anyway, the pain was MUCH BETTER now, soooooo 3 weeks down the line, I am rushed into hospital, kept in for a week, came out back on the meds again, and when I saw my GP he said, 'FOR PETE'S SAKE!!! It's taken us TWO YEARS of trial and error to finally find a suitable course of pain control, WHY ON EARTH did you stop them?'
I said, (I feel so foolish now) 'Well, I haven't had any pain for ages, so I thought I could do without them' 
He sat down and talked to me like I was a little kid and explained that the pain was better BECAUSE of the meds, and he told me I had succeeded in knocking myself back 2 years, and we had to start over again.
HO HUM - I sure won't be doing THAT again.
Hi all I have had HMB from birth and FMS for 23 yrs. I have had every pain relief going to the point now I'm on 300mg morphine per day.
it is 3.50 am cannot sleep and have not slept for 3 days now
GONE ALL DAY WITHOUT SLEEP AND I STILL CAN'T SLEEP
6;20 pm ,40 mins untill more meds ,i think its such a rubbish day when you clock watch ,and cant wait untill the 4 hours is up !
I have been on 100mg Gabapentin for almost 3 weeks now this week got very dizzy and couldn't stay awake is this normal? 
