anybody else?

[emadavies]

does any 1 else wonder wheather they wud be better off without pills an stuff?

the meds make me feel like a zombie, i dont feel like me

[nanatre]

Hiya. I was sent to the pain clinic after being on many meds and was told, " If you think your meds don't work try not taking them" and I have to say, there have been occasions I have forgotten to take them and boy do I know it.

I think at the start I was zombie like, but your body does adjust. I think!

I wish you well xx

[Hidden]

Hi Ema, yes I have often wondered that, but I remember how I was before I took my meds and I wouldn't want to go back to feeling like that. It's not worth the risk in my opinion.

If you think your meds are making you feel like a zombie perhaps they aren't right for you. I went through a stage where my meds doped me up so much I spent weeks in bed. Once I'd mustered up the energy to see my Consultant Rheumatologist and explained what I thought was making me like that, he changed all my meds. The new meds suited me much better, I no longer felt like a zombie, I was more alert and slowly my energy levels rose and my pain was managed better.

There is honestly no need to feel totally sparked out, there are meds out there to treat our symptoms without having this effect. It's all a bit trial and error trying to find the right combination of meds that treat all our symptoms. If ever you aren't happy, and this applies to everyone, explain your situation and ask for your meds to be reviewed.

***Please remember everyone not to just stop your meds without prior consultation with your Doctor or Consultant. The side effects and withdrawal symptoms have to be taken into account and only a medical professional can advise regarding this.***

[kraftyk8 in reply to Hidden]

well said Libby, I agree with everything you've said.

[Hidden]

hi well yes that may be true for some i suppose but i know how i feel if i am ready for my meds althoiugh they dont take away the pain com;lepletly they do numb it for a few hours so i think i will keep taking mine but everyone is different so you may feel a bit better off them after a while it really is an indidvdual thing

love to diddle xxxx

[siver52]

I tried going without, after 24hrs I thought "Bring back Zombie land PLEASE" xx

[Hidden in reply to siver52]

Exactly Silver, which is why we can't stress enough, please don't stop taking your meds or cut down your doses without consulting your Doctor or Consultant first. The side effects and withdrawal symptoms from most medications that we take just aren't worth it! Please be careful folks!

[mason]

hi emadavies i cant take meds as i have such bad side afects with them i either hitch all over or have breathing problems or am very sick .the pain is bad but so are the side affects ,.i have had fibro for 10 years plus ostio arthritus just been diagnosed with haglunds deformatyin my feet and nerve damage ,so i cant walk .in an electric wheelchair now .my husband and family dont understand fibro my husband is my carer but i still end up strugeling to to the housework cook and pay the bills .problem is my memory is terrible ,i used to be very actiive i loved gardening but i cant do it now ,i go on facebook there are a lot of people on there who have fibro .i was unsure about all the symptoms i have i googled 100 sypmtoms of firo it gives you a long list and how it can affect you i found it very helpfull .you are not alone soft hugs take care ,

[emadavies]

i stopped taking them, an bloody hell can feel the difference with so much more pain now! but on the pills i can never wake in the mornings, i was getting in trouble for kids getting to school late!

i dont know how to explain it but just didnt feel lke me

(stopped because i found out i was pregnant, altho lost it)

but havnt started taking them again yet! husband thinks i should! (think hes sick of hearing me complain about pain, lol)

[Hidden in reply to emadavies]

Ema I had the same problem about not being able to wake in the mornings. I discovered that I was taking my tablet at the wrong time. I was taking my Amitriptyline late at night which was rendering me virtually zombied until the next afternoon. I couldn't even stagger out of bed some mornings. It occurred to me one night that perhaps this would change if I took my tablet at say 2pm or 3pm instead.

I started taking my tablet in the afternoon, no later than 3-ish and I found that by midnight I was feeling sleepy, instead of being wide awake like I was before. I have always been an insomniac, but I was finding that by 2am I could sleep. More importantly I was feeling better in the mornings and could get out of bed without that awful zombie feeling and I felt like "me".

It might be worth a try Ema. You won't do yourself any harm as you would still be taking your meds just at a different time. If you have any doubts, have a word with your Doctor to see what he/she thinks. It made a big difference to me.

(So sorry to read about your pregnancy - hugs for you)

[emadavies in reply to Hidden]

i was once in so much pain i took my amytrip at 4 in afternoon, an within 50 mins i was in a heap on the floor asleep where i fell asleep while walking

[Hidden in reply to emadavies]

My goodness, it worked quickly for you! It normally takes hours to kick in for me so I can time when I should take it. I appreciate it's difficult for you if Amitriptyline has that effect on you Ema.

[emadavies in reply to Hidden]

my first dose was 10mg, i fell asleep half sentance, lol!

i slowly worked my way up to 100mg, an yeah it was taking 60% of the pain away, but i was only awake for about 8 hours a day! i feel like iv wasted so much of my life in bed!

i get no support from family, mum thinks im plain lazy, an i feel like im just proving her right!

[Hidden in reply to emadavies]

Oh Ema, you poor thing. It's awful when your family don't understand. I can sympathise as I spent most of my first year with Fibro in bed. I felt it was a waste too. Sometimes we just can't help it though, our bodies really need to rest.

Have you tried showing your Mum a copy of The Spoon Theory? It's a brilliant article that explains exactly how we feel with Fibromyalgia. It's explained brilliantly. I showed my hubby and children and asked them to read it, we all discussed it after. It really helped them have an insight into how radically our lives change having Fibro.

If you can print it out and show your Mum and your family - here's the link to it -

fibroaction.healthunlocked....

You aren't lazy, you are ill, there's a difference. Having Fibromyalgia affects us so greatly that virtually every facet of our lives changes, our energy is sapped, we have continual pain etc. It can really help for our families to try to understand how we feel each day.

Please feel free at any time to pm me, happy to help wherever I can. Take care Ema

[emadavies in reply to Hidden]

iv not heard of the spoon theory! i will go search!

my dad took me to my hospital appointments an i left the booklets i was given with them for them to read and my mum skiped straight to the excersize bit an sed see u can still do it! (i had been going to the gym 3 times a week, fine for the first 6 months, then the months after that i noticed i wasnt able to do as much. i used to be able to walk to town AND back (hal hour walk there) now im lucky if i can even manage a bus there an back)

[Hidden in reply to emadavies]

Ema try looking at The Spoon Theory, read it yourself, print it out if you can and ask your Mum and family to read it. Show them it on your pc if it's easier. Click on the link I sent you above. I really hope it helps, it's a fantastic way of explaining everything. Bless you.

[emadavies in reply to Hidden]

i cant print it out and they never come round but i can email it, thank you

[rosehip]

i hate meds , i take 21 a day x

[kraftyk8]

Please be very careful with the Spoon Theory. It is strictly copyright and you may not reproduce or distribute it without getting permission

[LindseyMid in reply to kraftyk8]

Send links - that's okay!

[Hidden]

I think it's possible to buy a copy from the site

[SparkyMark]

I had been on Diclofenac, Strong Co-Codamol, Tramadol and Oramorph for nearly 2 years and I have tried Pregabalin, Gabapentin, Amyltriptaline and countless others, but nothing really worked, but I was so zonked I thought it did, until I was so down I contemplated taking my own life... Instead, I kicked all of the pain meds, no weening, just stopped. Withing 48 hours I felt so much better mentally, like the fog had lifted, the pain however remains and is somewhat worse, but I am alive which is the important thing. If you are on opiate based pain meds, after 2-3 months they will CAUSE more pain! They should be used only for the bad flare ups and not for long term use. All of the research I have done over the past 2 years has resulted in me finding explinations that are reductions in neurotransmitters that interpret "normal" signals from the nerves in to pain messages in the brain, when there is no physical evidence in the actual pain area. Don't get me wrong, the pain we feel is VERY real and excruciating, but treating it will the pain meds, will not give you the relief you need, it will just make you so docile that you can ride it out. We are about 10 years behind the research of the USA and there are many video's you can watch on youtube that make alot of sense, the spoon explination video is also on there.

[emadavies in reply to SparkyMark]

yes you explained exactly how i felt!

i was on amitriptyline, gabapentin (tramadol, made headaches 100x worse than bad) so had to go back to co-codamol!

so what do you think i shud suggest to the docter?

[SparkyMark]

I gave my doctor the links to certain video's on youtube I wanted him to watch to try and educate him, though I don't think he ever watched them. You could ask for him to refer you for acupuncture, which I have had in the past and it really did work, though it differs for person to person. Also, if you suffer with tummy trouble (as most fibro sufferers do) and you can afford it, try a colonic irrigation... As for pain management, I mostly try and do it without pain meds, though I am going to ask my GP if I can go back on Pregabalin as this is the only one that has good reports from fellow sufferers and seems to effect the neurotransmitters that are getting the signals mixed up. Just remember that the co-codamol are opiate based and will have withdrawal effects if you stop them dead, which unfortunately is more pain...... Good luck. x

[Hidden]

Hello SparkyMark

I have been on virtually all the meds you mention in your message and I have to agree with you that many times I was too sparked out to know whether I was coping with my pain or not. It wasn't until one particular day when I felt there were literally two of me that I realised I had to do something. I was so spaced out, I felt I had no quality of life at all at this point. Most of my days were spent in bed, I had no energy at all. This was shortly after diagnosis, 4 years ago.

To cut a long story short, all my meds were reviewed and changed. I am still on the same medication today - I take 50mg Amitriptyline in the afternoon and have Solpadol (Co-Codamol) for "normal pain" and Methocarbamol for "severe pain". It's much better than taking dozens of meds like I was taking before and my head doesn't feel scrambled any more.

I think it's well documented that with certain pain relief eg. opiates, these can actually cause pain and mess with our pain receptors etc. Anyone taking opiates should be aware they are highly addictive and side effects can be severe. It pays for all of us to be informed about the meds that we take and to do our own research so that we know as much as we can about what we are taking. Also to know how certain meds react with other meds that we take.

Regarding the USA research, we do tend to hear about this here in the UK. Some of it is not proven over here at this time, although it pays to be cautious of course. We should all take care with any meds and if we have any doubts at all, please consult our Doctors or Consultants.

[emadavies]

i have been having acupuncture an they have said i shud have felt the benifits by now, but i havnt so i guess that means its not working for me!

i havnt even been able to tell the gp about my ibs, so dont think i will even be able to do a colonic!

[emadavies]

im confused my emails saying theres a message from libbyDe but there isnt