Medication is making me ill - Fibromyalgia Acti...

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Medication is making me ill

hollykarma profile image
17 Replies

A few weeks ago I was advised to increase my amitryptyline from 10mgs to 50mgs.

For the last week my legs have been numb and walking almost impossible. It takes so much effort just to move my legs, it was like they were no longer part of my body. I couldn't even turn over in bed. I forgot to take my tablets on Wednesday night and yesterday feeling started coming back in both legs. I am in a dilema now, do I stay off the meds and put up with the pain so at least I can feel something, or do I take the meds and end up in a wheelchair ? I have tried Tramodol in the past but these triggered terrible migraines. I have tried co-codamol, but if I take some one day, the pain is doubled the next !!! I really don't know what to do now. Some days the pain is so bad that I am yelling out every time I try to move. Is there anything else I can try ? My system seems to reject so many medications that I am at my wits end. Any advise would be much appreciated.

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hollykarma
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17 Replies
Misery profile image
Misery

Hello I have just started taking amitryptyline also at 10mg (only been on it 6days) but I was told to increase it to 20mg for the 2nd week and then to 30mg for the third week then go back and see the GP in 1 month. Bearing this in mind could the step up to 50mg be a little to much too early, I would ring the GP and ask for advice. Hope this is of some help. I know it is scary when these things happen. Good luck. Let us know how you get on.

Hi I have just read new research on amitriptyline for fibro,

The research found that for the first 6 to 8 weeks it helped

People with fibro, it advised that after this period it should

Be stopped as it stopped playing a part in helping with pain

Or sleep.

Just interesting to read that is what I found as well at first

It was good, helped me to chill out and sleep, I then had

To keep increasing the amount I was taking only to find

That I had head aches, I only use it now if I have a flare

And only a very small amount.

Good luck there are lots of different pain medication

Your GP just has to find the right one for you, I myself

I don't find any medication takes the pain away completely

Just helps to take some of the pain but I am yet to find

One that takes it all away

Extremelygrumpy profile image
Extremelygrumpy

I was on amitriptaline for 4 weeks at 10mg I was supposed to up it to 20mgs after two weeks couldn't do it I was soooo sleepy had no energy I came off them after 4 weeks and am now trying another med... Again low dose but this I seem to be tolerating so am looking up to increasing it... I would get in touch with your GP as we are all different despite having fibro and we all tolerate different meds

VG x

Misery profile image
Misery in reply to Extremelygrumpy

Hello verygrumpy, can I ask what medication you are trying as I was asked to try Duloxotine but after reading about it got a bit worried and settled for amitriptyline as I was on this a few years ago for neuralgia and tolerated it very well however, 6days into taking it this time I struggled with it last night. Misery

Extremelygrumpy profile image
Extremelygrumpy

I am now trying predisnolone it's a steroid an anti inflammatory I am on 5mg and tolerating it fine but it isn't strong enough ... Normal dose is 20mg to 30mg a day I am off to my GP next Thursday to see if I have tolerated it and if I have I can increase slightly.... I have arthritis in my neck hands feet and knee as well as fibro and ibs and am still in my 40s and the arthritis in my neck is making my, shoulders flare to protect my neck . I am so blooming awkward. My GP is trying the approach of reducing the inflammation with this med to stop the shoulder and neck flare

Fingers crossed you find a med that suits you I tried loads before I found my wonderful night meds so I sleep they are dosulepin 75mg and clonezapam 0.5mg and I sleep most nights

VG x

Misery profile image
Misery in reply to Extremelygrumpy

Thanks for that information. Please you have found something that works well for you. It really is trial and error. Mx

Blamire profile image
Blamire

I take duloxetine and it works for me - slight side effects at first but apart from that it has changed my life x

Hello Holly, so sorry to hear about how you feel on your current medications.

I would personally advise you to speak to your GP as soon as possible about this because clearly you aren't feeling well and your meds don't seem to be helping you much.

Please see the information in the article within the link below from our main site at FibroAction - it explains that Amitriptyline taken at a high dose (50mg+)is not suitable for Fibromyalgia as it shows little effect if taken for longer than 8 weeks -

fibroaction.org/Articles/Hi...

I was taking 75mg Amitriptyline at one point and it made no difference to the symptoms I was having at all, so in the end I stopped taking it altogether under my GP's guidance. I now take purely pain relief. If you have any concerns about taking Amitriptyline, please speak to your GP about this too.

If you feel your pain relief isn't adequate or isn't helping you at all, this also needs to be discussed with your GP.

I hope this helps you and I wish you all the best.

Please let us know how you get on, take care.

(((hug))) xxx

Libs

michaelb62 profile image
michaelb62

I have been on Amytryptyiline for over 20 years at first it make you drowsy and sleepy but once your body is used to it these symptoms wear off at one time i was on 250mg a night i would speak to my friend on the phone and she would know i had taken my tablets as i would sound like i was drunk although yo me i sounded normal they did really help me sleep though. I am now on 50mg whish helps the muscles in my neck although my body is so used to them now i struggle to sleep even with the other meds i take which are many. I saw my gp yesterday and he suggested upping them to 100mg but the problem i have is that they do make me retain water and put on weight. To verygrumpy prednisolone will make you put on weight and very fast it may also make your face look like a hamster this is something that my ex husband used to take for his crohns and is given in large doses for asthmatics it also affects your immune system making you likely to pick up any germs going ( depending on your dosage) if taken for a long time it can also make the bones brittle these are things you should be aware of. i think you are also supposed to carry a card to say you are taking them if i remember correctly. My dr also upped my MST (slow releasing morphine tablets to 60 mg a day from 40mg along with me taking oral morphine when the pain is so ba and i cannot get on top of it. I am considering trying Pregabalin again as the gabapentin was useless on me although supposed to be effective on some. The only problem i had before with the pregabalin is that i had problems spending a penny and that initially made me feel like a zombie but the dosage was increased quite quickly by the pain clinic with 75mg once a day for a week followed by doubling it the following week and so on until i was on 300mg 3 times a day. It did help the sleep though which for me is a good thing as currently i am just not sleeping which in turn is causing the vicious circle where i cannot get anything under control.

lochie0902 profile image
lochie0902

I'm fairly new to this site and am astonished at all the differences in medication and side effects. Despite all having Fibro, the medications affect us all differently.Originally I was given 10mg or Amitriptyline, but now I 60mg and am fine on this. I was advised I could increase to 100mg but each time I've tried to increase above 60mg, I start getting panic attacks. So for me 60mg is the sticking point. I also have Meloxicam 15mg each morning and that works very well for me. If I don't take it I feel the difference in less than a day. I'm have a new knee on 4th Feb and have to stop taking Meloxicam on 28th Jan (a week before the op) so I'm dreading next week, I know how much pain I'll be in :( I also take 60mg Codeine 3-4 times daily. These medications make the pain and discomfort manageable.

I take a cocktail of supplements which by trial and error, I have now found the optimum levels for me...1000mg Vit C; Magnesium Malate; CO Q10 200mg; fish oils; Calcium & Vit D; Mega Complex Vit B slow release 100mg. For me, they help with my low immunity. I work in a middle school, 20hrs a week. It used to be very stressful and I used to catch everything that was going around :( However, on advice from my Rhuematologist I have persuaded my employers to allow me to do the 20hrs by working mornings only instead of 4 long days and 1 day off) Wow, I can tell you the difference it has made for me has been astonishing. I have time to rest when I get home and also the stress fades away much more easily. I haven't had a day off sick since we started back at school Sept 2012. My Head teacher and staff have really changed their attitude towards me now, in a positive way. I used to have 2-3 days off each month due to Fibro, now I have none (touch wood!!)

It really is very much trial and error for everyone, it has taken a while to find my optimum drugs & supplements and way of managing work. Don't get me wrong, I still get the symptoms and have good and bad days, but I'm now managing to cope with them so much better.

spurs8r profile image
spurs8r

I've just come off of amitriptyline as I always felt swollen and put on 3stone in 6month's x it didn't seem to help my fibro at all and always felt rubbish x I've just started taking gabepentin and feel so much better already xxx

timj53 profile image
timj53

When increased my dosage of amitriptyline I was advised to it needed to be done gradually.

hollykarma profile image
hollykarma

Thanks for all the replies. I just feel like there isn't anything out there that will help me. Most days my body feels like a 90 year old's (I'm only in my 40's). I have had fibromyalgia for nearly 13 years now (only diagnosed last year) and I just don't know if I can carry on for much longer.

I cannot take anti-inflammatories because these trigger my IBS. I cannot take pain killers because if I do the next day the pain is doubled. The amytriptyline as I previously stated were starting to cause parallesis in my legs. I am in constant pain and almost completely house-bound. This is not living. I could try other pain killers but then I would only be like a zombie so thats not living either. Doctors just don't seem to want to help at all. I phoned my GP on Friday and explained my problems and they just told me to make an appointment next week. I told the doctor that if I lost feeling in my legs again I would call for an ambulance, maybe if I was admitted to hospital I would get the help I need. Sorry to sound off like this, but I just can't see an end to it all. I have never had a good day as some others have had, all my days are filled with pain. If I was an animal I would have been put to sleep years ago.

Paxtonie profile image
Paxtonie

I have recently come off Amitriptyline 25 mg lunchtime and 200 mg at night and Gabapentin 900 mg three times a day as my body had got so used to them they were having no effect. My pain consultant has switched me to pregabalin instead of the Gabapentin and nortriptyline instead of the Amitriptyline as he said these drugs are two of the best for fibro. Maybe you should discuss switching to nortriptyline and maybe introducing a drug like Gabapentin or pregabalin. If the Dr is unsure you should push for a referral to the pain clinic. That was the best thing my GP could've done for me as the pain consultant has put such a good care package in place. Take care and I hope you resolve things soon XXX

hollykarma profile image
hollykarma

Thank you for your reply Paxtonie. I will ask the doctor about the meds you have mentioned.

If he is reluctant to prescribe them then I will ask to be referred to a pain clinic. At least the health care in the part of the country I now live is a lot better than where I used to live. Hopefully I will end up getting the help I so desperately need. It is just unfortunate that my system seems to hate any drugs and always seems to cause side effects. I know I will never be 100%, but just to be able to get up in the morning and be able to plan my day knowing that the pain has been reduced. I would be happy with a 50% reduction in the pain, I think I could then cope with that. At the moment the simplest things seem like climbing mount everest !!!

Circle1 profile image
Circle1

I had exactly the same symptoms as you have just described & wasn't sure if it was part of the Fibro ? But I been on amitripiline for 7 yrs, started on 10 mg then it was increased to 50 mg, anyway couple of wks ago I decided to take myself off the amitripiline & see what happens & hey presto, the heavy legs & struggle to walk stopped & during the night I was able to turn over freely ! I have got some pain & not sleeping as well but I feel it's worth putting up with it, & not be on the amitripiline !

hollykarma profile image
hollykarma

Thanks for your comment Circle. I was starting to think I was going mad. You are the first person who has experienced the same symptoms taking amytriptyline. I have had two nights with no sleep since coming off the meds. I can also turn over in bed now (still with a lot of pain). I just can't seem to switch off and go to sleep. I am starting to wonder if GPs are prescribing these meds without really knowing if they help. They only say that these are the meds used for this condition. What research has been done into them and who is saying these meds are the right ones to use ? Perhaps they are prescribing higher doses of the amytriptyline as an antidepressant which would suggest that they are not seeing this condition as a truely physical one but a mental one. The pain we get is certainly not in our heads, it is all over our bodies. It is about time more research was done into this condition and we need to stand up and shout that we refuse to be swept under the carpet anymore. We are human beings and we deserves a better quality of life than those in the medical profession are at this time giving us.

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