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The UKFibromyalgia Forums • View topic - A few notes on medicines I've tried.



A few notes on medicines I've tried.

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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A few notes on medicines I've tried.

Postby natsuno » Wed Mar 06, 2013 6:34 pm

Hello there, I often find myself reading a lot about this condition on the internet and I'd just like to share some of my own personal experiences on medications that I have found effective. Please note as this is my first post here I apologise If I am inadvertantly breaking any rules. These notes are basically my personal experiences with Fibromyalgia treatments. As I have tried a lot of things over the years, I wrote this in the hopes that somebody out there with the same condition as me might acctualy derive some benefit from my words. Please remember these are my opinion. I am not a doctor or a scientist so some things may be wrong, feel free to correct me. Drugs effect everyone differently. Do you're research.

1.Pramipexole/Requip
I have found that for general control of symptoms these two medications are pretty much the gold standard. I don't get restless leg syndrome or shakes anymore due to this. Which results in a much better night of sleep. It is very difficult to get this prescribed on the NHS for fibromyalgia, but if you have restless leg syndrome and see a Neurologist, Chances are after a year or so of complaining you may get this. First week or so is hell as they up the dose, but once your body becomes used to the medication it will totally kill off a lot of the more annoying symptoms and help with sleep. It can cause insomnia and nightmares at the start and comes with a special warning letter from your GP because its unintended side effects can cause compulsive habits (aka charlie sheen style behavior - some of the more amusing ones I've read about are compulsive crossdress/compulsive gambling). This medication also seems to have better antidepressant effects than all of the SSRI/SNRI class, google it - I agree with this. Be aware this does little for the fibro pain and can make the joint stiffness slightly worse. But if you suffer from restless legs and shakes, these dopamine meds are simply unbeatable. The withdralws from this are about about the same as pregabalin from personal experience.

2. Lyrica (Pregabalin) (don't bother with gabapentin its a less "clean" version of lyrica, more sides)
This drug is nothing short of amazing for the first 6 months or so, it really helps with the pain and the itching/burning feelings in the skin. But if you're like me you will keep upping the dose as it becomes ineffective. The current maximum dose on the NHS is 600mg per day. I personally get swolen ankles from this when I up the dose and it is definitly effective for a while. Eventually though you are likly to find yourself on the top dose of this and basically its controling "most" of the symptoms. But when you have a flare up, the break through pain total wipes the floor with this medication. One of the good things I've found is this seems to act almost as a stimulant for me, rather than zombify me. It increases my motivation and drive. The only real annoying problem with this is the fact it can cause double vision which makes it very difficult to drive, especially on the top dose when your body is becoming used to it. My stratergy here is to take 400mgs on most days, then take 600 on flare ups (sometimes 800, this is not reccomended but I often get desperate especially if i'm out of tramadol/nefopam)

3. Ultram (Tramadol)
First I'd like to say this medication is nothing short of a miracle. The doctors say its not addictive, which is the most stupid quotes I've ever heard. This medication is amazing for a while (less brain fog, loads of energy), but then suddenly you miss a dose and start getting double withdrawls - The reason, let me explain. Tramadol is acctually an opiod, but what a lot of people don't realise is that it is also a noradrenaline reuptake inhibitor which means its very similar to Cybalta(duloxetine) which is a dual action serotonin/noradrenaline reuptake inhibitor. It also "releases" serotonin in the brain which is different to reuptake inhibition. What this means is when you take the medication, you will very likly get mild stimulant effects and feel clear headed, with a lifted mood and slightly "high". For a week or two it will feel like you're fibro symptoms have been reduced in a massive style. But then if you stop taking it, you will find you get not just opiod withdrawls, but also the same withdrawls you would get from SNRI meds such as cymbalta, effexor or for any americans reading this milnacipran. If you plan to take this drug, I cannot stress more ONLY TAKE IT FOR FLARE UPS! Else you will be in a world of hurt with withdrawls.

4. Acupan (Nefopam)
In my experience this is one of the rarer medications you can get prescribed for Fibromyalgia pain. Which is really quite silly, because it happens to be one of the best. Its method of action is very little understood. But it happens to be a dopamine reuptake inhibitor. It also works on serotonin and noradranline in a similar way to Cymbalta and has some other effects on the brain. In my experience this is miles better than tramadol in every way and the withdrawls from it are nowhere near as bad - Its still a good idea titrating down on this, but for me I dident need to. It is a none opioid, so that means its not going to be as bad as withdrawing from tramadol. There is less "high" from it, but it does cause quite a bit of nausia when you first start. Its prescribed in hospitals for people with shivering (and uncontrolable hiccups lol), and therfore its good at controling the shakes and mildly effective at controling restless leg syndrome (not even close to pramipexole/requip for this, but it does help in my experience). The pain relief I get from this is acctually just as good if not better than tramadol. It happens to work quite well at clearing the brain fog. The major problem with this drug though is it has quite a bit of stimulant activity which is good in the day, but if you take it at night, expect to be awake all night. If you felt activated from Cymbalta, this is a similar thing.

5. All SSRI/SNRI and other antidepressants
Personally I think these are prescribed as a front line treatment, mainly because they work only for people with very mild fibromyalgia symptoms. Personally I found cymbalta (duloxetine) to be totally ineffective. Some people do seem to respond to this medication, but personally I would avoid a lot of them. Amitriptyline, Mirtrazapine and Imipramine can all have some good effects - But personally I view this entire group of drugs as smoke and mirrors prescribed by doctors that think that fibromyalgia is basically all about getting a good nights sleep, "coping" with the pain or just keeping you in a positive mind set. The ones I have tried are all the above, prozac, zoloft and citalopram - All with little to no effect on any of the symptoms apart from turning me into a zombie. I would suggest you avoid these - But if you insist, the best three tend to be amitriptyline, cymbalta and oddly mirtrazapine. Final note, they all have withdrawls so titrate down according to your GP.

6. Benzos and Thienos
These types of drug are horrendously addictive. I would put that in capitals, but you already should know this. They have muscle relaxant effects, calm you down and combat anxiety a lot better than anything else you can get. These are guarenteed to let you have a good nights sleep, better than any of the antihistamines. There are also the sleep medcines which are kind of in this class, known as the Z drugs, zolpidem, zopiclone and zaleplon. They are not benzos, but are very close in terms of effects. You can get some of these prescribed on the NHS. But understandably these drugs are heavily controled because they can ruin your life if you become addicted. For those of you who are wondering what a thieno is, google "Etizolam". Don't buy drugs online though, that is a stupid thing to do. I was lucky enough to try etizolam in another country and its very similar to xanax which is a short acting benzo from america. Unluckily in the UK we can only really get one of the Z drugs, I forget which and usually diazepam - I get prescribed a very small quantity of 2mg diazepam pills each month. They are VERY useful incase of a servere flare up. Be warned though, these interact very badly with alcohol and opiate medications.

7. Strong opiates/opioids
This class of drug I have very little experience with, things like fentanyl and morphine I would never resort to, I had a bad enough experience with tramadol. I don't like running the risk of addiction with anything I take, and opites/opioids and ofc benzos need to be treated with respect. I would seriously suggest exhausting every other option available before resorting to opiates. Codeine and Dyhydrocodine are not as bad and are acctually reasonable painkillers for flare ups - But in my case flare up tend to require tramadol or nefopam at least to start touching the pain.

8. Anti inflamatories
Ibuprofen, Naproxen and Diclophenac are the ones I've had experience with in this catagory. I must say these are really quite useful. Ibuprofen is one that I take daily and does help a lot. If you have bowel problems these are probably not going to be much use to you (same with aspirin). I would reccomend anyone with fibro giving diclophenac a shot, in my experience its been a very nice addition to my toolkit. I've found if I'm especially active one day I will be in a ton of pain by the time I get home, thats usually when I reach for these medications. Another thing I've read is that naproxen increases oral bioavailability of Lyrica making it slightly stronger. Also final note: Diclophenac has recently been in the news in the uk, it can apparently cause damage to you're heart.

9. Paracetamol/aspirin
I get very little from this. Buy some, try it - Be prepared to be disapointed. Aspirin is better if you don't mind it causing havoc in your intestines. Some people use these, I don't - A small dose of aspirin is not bad but higher doses can cause damage. Pracetamol is also bad for you're liver, especially if you're drinking. You knew this already though.

10. Other muscle relaxants
I will be brief here as I have limited experience. I have tried soma aka carisoprodol. Its VERY good - but not available on the NHS. I've attempted to get others in this class with no luck. A bit of digging around might turn up a few that could be helpful. Maybe skelaxin? Input?

11. Antihistamines
Diphenhydramine and Promanthazine are the ones I've tried. They are reasonable for sleep, but I tend to get huge hangover effects from this line of medications. One thing I would like to mention, is that opiates in high doses cause a histamine release in the body which causes itching. Antihistamines especially allergy ones are very effective at reducing the itching from things like codeine but they also potentiate the effects and make them last much longer. Usually when I take codeine, I wait 15 minutes then take one of the sainsburys none drowsy allergy tablets and that draws out its effects and reduces itching to nil.

12. Antipsychotics
Another one I have never tried- Some people seem to think they help - Sorry I have 0 experience in this field. Perhaps somebody with experience could make some suggestions, they have been known to be prescribed.

13. Vitamins ect
Just buy a cod liver oil with multivitamins, Vitamin D and importantly B-complex tablets. These can help especially as some people have a deficiency. These are often quite good alone or with a nootropic like noopept or piracetam for beating fibrofog. But thats witchcraft and wizardy, not particularly relevant here.

14. Stuff for IBS/Acid Reflux
Renne and tums are usually the first thing to try. I'm lucky my dad has omeprazole prescibed and I can just take one of them. Ask you're doctor if you get this a lot, omeprazole is highly effective in my experience.

15. Grapefruit juice
Beware this. It has a lot of interactions with medications. But some of them can acctually be beneficial. When taken before codeine it causes an interaction which causes more codeine to become converted into morphine in the body, therfore increasing its strength. It has a huge array of interactions with medicines, most of the ones ive listed infact. Please read this list if you plan to use it to potentiate the strength of any drug. It can be dangerous but useful if you use this trick correctly. The list is here:

16. Other stuff
Exersize for at least 30 minutes, I know it hurts - But the release of endorphines into the blood helps releive pain and that tends to only happen in useful quantities after around the 30 minute mark. A brisk walk should do the job, even if you have to drag yourself. Follow it up with a hot shower, then reduce the heat to as cold as you can handle. Cold water may not be on the list for most people with fibro, but oddly enough after a walk the cold water stimulates the release of a lot more endorpines. Eat a banana for the dopamine also. This combo is good stuff.
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Re: A few notes on medicines I've tried.

Postby sknowles456 » Wed Mar 06, 2013 6:59 pm

I think it is very important for everyone to note and perhaps for the moderators to reiterate that these findings are purely from a personal opinion, i find i react to many of the drugs mentioned here in a completely different way. All medications come with side effect leaflets and GPs can discuss addiction issues with you. Little bit wary of this post, sorry.
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Re: A few notes on medicines I've tried.

Postby denys » Wed Mar 06, 2013 7:01 pm

Welcome to the forum and thank you for your observations, most of us have tried the suggestions you have made and have had differing results as no two of us are the same, that said your post may well help some of the newbies to FM and help them to get relief a little quicker :-D :-D

As sknowles has pointed out this post is from a purely personal opinion/finding and has no medical fact backing it up
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Re: A few notes on medicines I've tried.

Postby Tina1963 » Wed Mar 06, 2013 7:18 pm

With all respects, I hope people see their GP before taking it upon their selves to undertake any changes. Even the extra Vitamins an cod liver oil you could really make yourself ill if you don't have blood tests first.

Good to have some more knowledge though xx
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Re: A few notes on medicines I've tried.

Postby denys » Wed Mar 06, 2013 7:27 pm

Totally agree Tina, taking extra doses of tablets is certainly not recommended and all changes additions etc should be discussed with a health care professional first
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Re: A few notes on medicines I've tried.

Postby natsuno » Thu Mar 07, 2013 2:32 pm

Yeah fair points made there - This was more intended to help people when they go to discuss medication with their GP. To make it a bit easier to understand the options available - Unlucky for me my doctor seemed to be clueless about how to treat fibromyalgia apart from by prescribing painkillers and amitriptaline. He's a nice man, unlike the other doctors there and was willing to listen to my results from taking amitryptaline and also my suggestions on what medication to try afterwards. I told him about cymbalta which was one he had never prescribed before and also mentioned some of the other medications and we decided to take it one step at a time and try them. I gave him a printed out list which he kept. He actually shook my hand afterwards, which was the first time I've got that from a doctor. Book a double appointment - Take a nicely formatted list of meds you have discovered online, make sure you know as many facts about them as possible and only pick ones that you have confirmed on the NICE guidelines on the NHS website.
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Re: A few notes on medicines I've tried.

Postby Crazyfi » Mon Mar 11, 2013 8:29 pm

Hi interesting to read, I'm looking online loads so I can be equipped when visiting doc but am just finding myself more and more confused by various reviews and experiences, brain fog prob doesn't help much lol. :idea:
Im aware that everyone has different side effects and experiences to drugs but was wondering Are there any posts on here or anywhere that tend to have more common denominators to certain medication. I guess I'm wondering if there is a general consensus of preferred meds due to experiences?

CF
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Re: A few notes on medicines I've tried.

Postby FluppyPuffy » Mon Mar 11, 2013 9:02 pm

There doesn't really tend to be any consensus about preferred meds CF :facepalm: :facepalm: :facepalm: Our various cocktails tend to take shape over a period of time as we try different classes of meds and the various types and variations found in each class.

Some meds do tend to be used regularly, esp at first/just after dx, such as amitriptyline, co~codamol, but as their effectiveness, or lack of it becomes clear, that's when alternatives and/or different ones tend to start appearing.


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Re: A few notes on medicines I've tried.

Postby Crazyfi » Mon Mar 11, 2013 9:28 pm

Okies, thnx for that .... It's a long haul of trial and error I guess still. I found some great reviewed ones but they were American and not approved in Britain as of yet, yes my cons has suggested my doc starts me on 10mg of Amy but wanted to be prepared when going to appointment as I have read both good and bad on Amy but don't like the common weight gain side effect, as I already need to loose weight.
Okies well
thnx again

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