What medication's are people taking t... - Fibromyalgia Acti...

Fibromyalgia Action UK

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What medication's are people taking to help with FM?

ZoeH profile image
ZoeH
48 Replies

I have severe FM and I am currently taking so many different pills but i honestly don't feel anything is working. I seem to be getting worse. Does anyone have any recommendations? Is anything working or worth trying? I want my life back!

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ZoeH profile image
ZoeH
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48 Replies
Rach1977 profile image
Rach1977

Hi i take ( excuse the spellings) Dosulepin, Diazepam, Prozac, Indometacin, Paracetamol at the mo. Refuse to take amitriptyline again, gabapentine does nothing for me. Dr wants to give me Pregabalin, however don't want to take any more meds.

I also have neuropathic pain along with FM.

Nothing controls the pain apart from loads of Diazepam when I get a really bad head and I feel like someone is punching my eye out.....but the I sleep!!!!

What do you take? xx

ZoeH profile image
ZoeH in reply to Rach1977

Pregabalin (which i am currently trying to come off as it was completely useless!- HEADACHE CENTRAL) Amitriptyline, Lorazepam, Tramadol, Codeine, Paracetamol, Mefanamic acid. I take Domperidone and peppermint oil for the IBS. I was taking Sertraline (anti depressant) but i swear they made me feel suicidal so i refuse anti Ds now!

I take natural stuff to help my immune system (does anyone else find their immune system absolute rubbish? I catch everything) Baobob superfruit powder and immune boosting vitamins and minerals.

I am a science student about to go into biomedicine (if i can get well enough!) and one thing i have been considering trying is Malic acid with magnesium. From what i have studied these two combined should help with pain and fatigue symptoms but Malic acid is not cheap (and i am after all a student!) So i am keen to know if anyone has tried this or if this is something that may have been mentioned to anyone via a healthcare professional?

MichelleF66 profile image
MichelleF66 in reply to ZoeH

Fibro. produces a Compromised Immune System which is why we are so vulnerable to catch anything that is going round.

Alternative Therapies, i.e. Reiki, Reflexology, Accupuncture et al, can help but only allonside Western Medicine.

Hope this helps :)

Michelle x

luvmybabies profile image
luvmybabies in reply to Rach1977

i'm currently takin 168 tablets a week, mainly for my fibro & my depression. everytime i see a doctor and ask about sorting these out all they do is either give me more to try or increse 1 im already on, its makin me so depressed as none of the tablets seem to work, ive also told doctor this 2 but they dont seem to bother. The pain gets too much to bare and im gettin very bad thoughts going on. :(

judrop67 profile image
judrop67

my hubby takes so many different pills a day think its 19 in total but he was on co codamol for the pain but it wasnt touching it so now he takes 200mg of morphine which still isnt enough so he now takes paracetamol as its wearing off. He also takes diclofenac an anti inflammatory 3 times a day too and recently we bought a tens machine which takes his mind off the pain for a while.

ZoeH profile image
ZoeH

My mother has a friend who apparently has FM and she said she takes steriods. I am not sure how this would help FM in anyway so has anyone else ever come across this?

in reply to ZoeH

I took steroids for a year then my dr back then said best not to take them cos they can make your bones brittle over long time , he was on hols when i was given them by a locum and when i popped into see him and tell him my pain level was below 4 most days he was shocked that i was taking them, so be careful taking them long term.

sammie38 profile image
sammie38

hiya , im fairly new to be diagnosed with fybro, also been diagnosed with oasteo arthritis, and suffer with sciatica badly , i am on .. pregagablin 200mg and sertriline 150mg, im also have 20mg morphine patch, which i also take paracetemol, at the moment im feeling really bad, and very tired xx i was put on Amitriptyline, didnt do anything.and was on tramadol, that was useless. gentle hugs to you all xxx

nettie1261 profile image
nettie1261

hi people . being diabetic as well i suffer with alot of pain because of nerve damage in my feet. but for fibro i take amitryyline to help me sleep which most time i cant sleep and for the pain i take naproxin. i was taken off them and put on to co codamol which did not help at all but they put me back on naproxin and now i have to monitored but the relief was great though im not pain free all the time but the short break is nice.

ZoeH profile image
ZoeH

I may ask to switch to Naproxen so thanks for this info. Thank you to everyone who has replied. I appreciate all of your advise. I am new to this website and i find it very difficult to talk about the problems of FM to anyone, even those close to me. It is nice to hear from people who can share their experiences. xx

cxs957 profile image
cxs957

I currently take tramadol and co-dyramol

Marky profile image
Marky

I take Pregabalin, Targinact, OxyNORM, Duloxetine and use Versatis 5% Lidocaine patches at night. Targinact and OxyNORM are both controlled drugs, Targinact, is a time release drug and OxyNORM is fast acting form. Pregabalin and Duloxetine are approved by the FDA in america for Fibro treatements.

LindseyMid profile image
LindseyMid

Steroids will not help Fibro - if they help it is actually a sign that something else inflammatory is going on.

Similarly, NSAIDs like Naproxen should also have a limited effect on Fibro, although they may help with muscle spasms associated with the myofascial pain that is common with Fibro. You need to take care with NSAIDs though as having FIbro puts you at higher risk of getting IBS and reflux and taking NSAIDs raises that risk further.

Medications that I found useful were Clonazepam for sleep and muscle relaxation, Paracetamol with codeine to take on top as needed for breakthrough pain, Imigran for migraine, Pramipexole for the Fibro and Metoclopramide for the side effects of the Pramipexole (it is a very strong drug with side effects that can be really strong).

I have also benefited from magnesium malate supplements and from vitamin D supplements (I have tested positive for vitamin D deficiency in the past and now find it is best if I continuously take a vitamin D supplement).

Fibro needs a multi-disciplinary approach to best manage it. I have benefited (and still do) from physiotherapy to help with hypermobile joints and stabilising my neck (to improve the Fibro). Myofascial Release Therapy has also been hugely helpful for me and I still get it regularly.

In the past I also found hydrotherapy good. Counselling, CBT and stress management techniques I needed at various times and now help me to manage my stress levels. Self-hypnosis is a very useful tool IMO.

freddy profile image
freddy

hi all, all I am taking for fibro is brofin , I control mine mainly with an anti-inflammatory diet here is a very useful web page showing you what foods are anti-inflammatory, I find by following this type of diet and doing light exercise i.e yoga really helps me control my fibro. I also have a back massage once a month to and this really helps as well. At lot of it is mind over matter which i know is hard, its finding what works for you :-) good luck everyone

stoparthritispain.co.uk/ant...

Ballerina profile image
Ballerina

Sorry to hear youre suffereing, it's a horrible condition. I take pregablin 50mg twice aday and 2 at night, I also take 100mg tramadol between 1 and 4 times a day. Pregab takes a long time to have any effect ( about 6 weeks for me) so most people think it doesnt work. Found it has helped ease the joint & muscle pains I had throughout my body, and has had a profound effect on my mood, it contains an anti-anxiety which has worked wonders for me - Im a completely different person to the one i was at Xmas. I cant tolerate 100mg in the day as they make me feel much too woozy, but after taking them for the last 9 days at night, I actually feel like Im sleeping a bit deeper than I have done in years!

The problem with gettibg diagnosed with FM is that ALL subsequent ailments are attributed to it! The awful burning chest and back pain Iv suffered with for years has almost gone after I self prescribed Omeprazole, basically a drug to reduce acid production in the stomach so it cant leak back into the oesauphagus. Iv only been on it for a week or so and can already feel the difference. Hope you get sorted

Stormlaw profile image
Stormlaw

Just a word of warning with Naproxen, please ask for some stomach protecting tablets as well (can't remember what they are called, sorry). I started on Naproxen and ended up in hospital with severe gastritis as the naproxen had started to burn my stomach lining. Naproxen and Diclofenac are the worst NSAID's in my experience adn I would never take them again, the pain was the worst most intense pain I've ever felt and the pain with the fibro, which is very bad at times, paled to insignificance with the pain in my stomach from those NSAID's. Please be careful.

Mercion profile image
Mercion in reply to Stormlaw

My GP is refusing to prescribe diclofenic, it was the most effective thing I've taken for the pain, but it has left me with a terrible stomach too.

fibropixie profile image
fibropixie in reply to Mercion

I made a comment about similar subject this morning regarding Ibuprofen causing me extreme gastritis. These NSAIDs can have nasty effects, please take care with them and ALWAYS take after food.

fibroaction.healthunlocked....

fibropixie profile image
fibropixie in reply to fibropixie

PS I'm sure I heard that diclofenac may be taken off the market for those very reasons.

cxs957 profile image
cxs957 in reply to Stormlaw

When I first was referred to a rheumo he was convinced (and proved wrong by the hospital he kept referring me too a number of times) that I had juvenile arthritis and I was put on a strong dose of naproxen when I was 12. I'm glad I didn't end up with any major problems hearing this lol

in reply to Stormlaw

the tablet that you need to take with naproxen is lanzoprazole, there is another one too but I can't remember that one xx

panda60 profile image
panda60

I take amitriptyline and ibuprofen topped up with paracetamol and am also on warfarin for Hughes Syndrome. I would like to take Naproxen when the pain is really bad but not allowed because of the warfarin (every stomach protector I tried made me very sick!) I have periodic steroid shots because I also have a touch of lupus. I am dreadfully sensitive to medication, including painkillers codeine or opiate based which is a real bugbear so am hoping that I can stay under control with what I am on.

Mercion profile image
Mercion

I've tried a fair few of the above and have found them to either not help or to make me so zombielike I can't cope. I'm surviving on Paracetamol with codeine, it's not really helping but I'd rather not shove any more tablets into me without some hope they are going to work.

Sadly I'll be changing my GP now because they don't seem to understand I'm suffering but instead of just covering it up with medication I want to go through the symptoms and try treat those and fix anything I can. I don't believe this is all there is, there has to be a cure or way we can live normal lives again.

anjie profile image
anjie in reply to Mercion

I agree, was fed up with taking painkilling meds all the time and I refused to take anything stronger than codiene.

Thankfully my dr and I are of the same thinking so just taking amytriptaline to help with sleeping and controling the fibro with diet and exercise. Only just started this so in constant pain at the moment *sighs*

but I'm determined for this to work.

cxs957 profile image
cxs957

I completely agree with your statement 'it takes the bite out of the pain', that's completely how I see it! The pain never leaves but it stops being a screaming reminder.

Mercion profile image
Mercion

Oh yes, I demanded to come off the stuff, he said he won't prescribe it to anyone now as it's horrible.

Shedevil_kt profile image
Shedevil_kt

at present I am on slow release Tramadol,garbapentin,omeprazole,naproxen hyacinth and paracetomol

lizzylomas profile image
lizzylomas

Hi everyone, I am on 1,200 mg Gabapentin 3xd, 500mg Naproxen.Co-codamol

separate paracetamol when needed, Omeprozole ( because of Naproxen) beta blockers (for the migrains). 10mg Zopiclone for sleep (only allowed 14 a month) +meds for unrelated probs. I was on dihydrocodien at night but came off these. Like Christine I work for 20hrs a week and this helps me . In the evenings and holidays my pain increases greatly along with the stiffness and the "toothache" feeling that runs the length of my right leg. sending a smile to you all.

Goodmorning everyone

I was on Morphine for 7 years thinking it was helping me but sadly it wasnt, side effects and lots of ups and downs. Now im on 900mg Gabapentin 3 times aday and Becofen 10mg 3 times aday and Amitriptyline every night when needed.

I find the Gabapentin so much better for me then Morphine

ZoeH profile image
ZoeH

I have been taking Pregablin for years. Initially just a low dose at 150mg but when i was diagnosed with FM they increased the dose to 600mg. I physically couldn't handle it. My migraines became worse as did the trembles. I have slowly been coming down and i am now back to 150mg but i really have never felt it does much for me and so i no longer see the point of taking it. Im taking around 25 pills a day anyway. Enough is enough! The pain clinic doctor has suggested switching to Gabapentin. Will it be worth it? Has anyone had better luck with this drug compared with Pregabalin?

Artyrosie profile image
Artyrosie

Yes I take slow release Tramadol too, though not for FM, and it doesn't affect my FM pain levels at all :(

nadine1974 profile image
nadine1974

i hope i dont upset anyone saying this.........i use cannabis (in small amounts and my doctor knows) on top of cocodamol. this natural drug is non addictive and in alot of countries is legal as pain releif. im not suggesting anyone takes it, that would be irresponsible, however research it yourself as it works for me x

paul30 profile image
paul30 in reply to nadine1974

yes it does work as long as you use as a pain killer not just to get high.

also not affended as im sure many use this but not admitting to it ! i would say £10 or £20 bag every 4 to 7 days but to get you moneys worth i would say £20 that would last a week or so and so does m doc knows too hope this helps any one i was told by a nurse

nadine1974 profile image
nadine1974 in reply to paul30

thanks hun, was little worried about putting it, but i really believe that it should be legalised for health benefits!! x

paul30 profile image
paul30 in reply to nadine1974

ya your right it should be so we wouldnt spend as much as we do lol

Belle67 profile image
Belle67

I take Tramadol,Oxycodone,Gabapentin for Fibro and Venfalaxine for the depression I suffer. Although I have just moved to a new doctor and he is not happy with me being on two Opiates but they do work and without them i could scream in pain so for the moment he has agreed to continue. I have asked to go back to pain clinic because they will hopefully agree with me. I don't care about the addiction side because I have had fibro for 10 years and i have it for the rest of my life so what does it matter if i become addicted as long as i'm not in so much pain.

ZoeH profile image
ZoeH in reply to Belle67

I couldn't agree more! Iv had many doctors question me over my addiction to codeine since i have been on it for several years but its the probably the only drug that gives me any relief. They could take me off of everything else and i probably wouldn't see much difference but without codeine i would suffer. Who cares about the addiction, as long as i am well aware of how much i can take and never abuse it then the addiction is a very small price to pay! I think, especially with GPs, we know a lot more than about FM than they do so i never ask them what i can take, i tell them what i will take. They can give it to me or i can see someone else. You have to be firm, you know best.

Belle67 profile image
Belle67

Definately Zoe, this doctor had the audacity to tell me i shouldn't use crutch's or a wheelchair because they don't do FM any good. I said so effectively you want me housebound and even when i'm housebound I will have to sit in a chair because i couldn't possibly walk without them. As you said we know so much more than they do, doesn't stop it being so frustrating for us though does it and what is one of the main things that can make FM worse...stress and frustration lol

Bella_Baby profile image
Bella_Baby in reply to Belle67

I don't take any crap from the GP's anymore either. I tell them what I want because i know what has given me some relief (more like taking the edge off) so far. If I come across something different through forums like this one, I tell them I would like to try it (if it's in Australia). Took years and years for me to get to the point of taking control of my medicinal needs. I've had this thing for 25 years, and i'm in constant high level pain. I take 200mg slow release Tramadol morning and evening, Panadeine forte with those and also throughout the day atm, Celebrex for inflammation, valium for needed muscle release/relaxation/sleep, Nexium for ulcer/acid daily and Esipram (a light anti-depressant) once daily. I also take Glucosamine once a day for osteo arthritis. I'm trying to drop weight. Have always had a weight issue. Atm i'm trying some dietry shakes. I've also been referred by my GP to have weightloss surgery through the public system (as i am on disability pension) because the amount of weight i carry on my body makes the pain worse, and, i find it near impossible to exercise. I will be on a waiting list, but, its better than nothing.

I've also tried other medications that totally flipped me out. Reacted on me to the point where i thought i was dying...Endep and Cymbalta were 2 of them. I think the reaction is called having 'seratonin syndrome'.

Anywho.. thanks for sharing ya'll.

:)

Mdaisy profile image
Mdaisy

Hi would just like to say that my b12 was checked and even though it was within normal levels not under the GP 's treatable level of under 200 . Mine was borderline low at 240 and guys rheumatology London said treat it and I noticed less nerve pain reduced as b12 level went up again. My advice ask your GP what the actually level is because I think FMS levels should be kept above what levels are recommended for the general public. Calcium helps the body absorb b12 and some milkshakes are fortified with b12 which may help .

:)

Cazie50 profile image
Cazie50

It's a pretty horrible feeling taking so many meds, I use an app now as a med reminder as I would forget to take what I need. Most of what I take, take the 'edge' off and enable me to stay in work, but as I now have CFS, it's a struggle.

I take Prozac, Gabapentin, BuTrans Patch, Tramadol (prn), Melatonin (for sleep), Vitamin D, Vitamin B12

topsy4758 profile image
topsy4758

hi i swear by my B12 jab that i have every 3 months my B12 levels were normal before i started the jabs. before im due for my jab my energy levels drop asnd everything gets harder to do. whithin a day of having the jab i feel on top of the world, my skin goes silky soft my energy levels are elevated and the pain depletes.

Elsbeth profile image
Elsbeth

I am on 20 tablets a day and 4 shots of Oramorph.

I am on...Zomorph, Sertaline, Pregabalin, Naproxyn, Cinnerazine, domperidrone and Oramorph along with any paracetamol I need.

joed profile image
joed

hi im taking 1200mg gabaentin 3x aday and 2to3 amitriptyline anight to aid sleep

nickyg74 profile image
nickyg74

hi, i tried every pain relier going and had no joy apart from being a zombie, i was diagnosed 2 years ago with fibro, a small tear in my lower discs and damage to discs high up by the bra strap from a violent ex, im currently on prozac for depression and naproxen with omeprazole for achilles tendonitis. i had a fall in jan and injured my ribs, doc said xray was clear but the pain is increassing daily, im at my wits end with my gp, cant get an app for 2 weeks

jennyjayne profile image
jennyjayne

fentynel patches

amitryptiline

baclofen

pregabalin

xxxxxxxx

DeelBooth profile image
DeelBooth in reply to jennyjayne

I take all of that except the pregabalin

DeelBooth profile image
DeelBooth

Hi. Maybe I can help you, I hope so. I developed fibromyalgia after injuring my neck at work when I was 23. I am now 50. I'll tell you what has helped me, although good luck on finding a Dr to help you ,it took me a year. I take alprazolam, Norspan patches, I have had tramadol but swapped it for panadine forte. I take Endep so I can sleep and and antidepressant called Pristiq ( be very careful of what anti depressant you take ) I use to take valium and wish I still was. I have asked him for a muscle relaxant as Alprazolam doesn't work like it use to. Our bodies get so use to them so quickly. Endep,I wish I didn't have to take as it puts the weight on, but without it I don't sleep. I am on quite large doses. Norspan patches are great. I put them on my upper arm but I have noticed eventually they bubble ,which means it's not touching the skin and being absorbed. I bandage my arm to stop this. Juicing is great. Carrots and celery. I also have come across two great Naturopaths. Good luck. Drs give you baby doses to start with. If you need to increase it tell them. Some medications are very addictive but without them I would have been dead a long time ago. Don't forget to research juicing. Carrots were first used as a medicine before a food, and celery is actually a herb. Hang in there. It's horrible and trying to see and convince Drs doesn't help.

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