To medicate or not?

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To medicate or not?

Postby divingforPearls » Tue Mar 03, 2015 11:26 am

Hi,

I've had fibro for 16 years, and although I am often in agony, I just struggle through with rest and occasional paracetamol (not everyday, but may 2 or 4 a day in peak flare ups). However, I am so limited in what I can do that I am wondering what medications could do, and what their downsides are. I like being able to think clearly; I would choose clear headed and in pain over fuzzy headed and pain free. But sometimes the pain is just so bad...

Your advice / opinions would be most useful. Thanks.
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Re: To medicate or not?

Postby Barbara H » Tue Mar 03, 2015 11:41 am

What is this pain free you talk about.
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Re: To medicate or not?

Postby divingforPearls » Tue Mar 03, 2015 11:46 am

Hi Barbara,

I'm imagining that all these medications people take helps with the pain - how much do they take away the pain then?
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Re: To medicate or not?

Postby Barbara H » Tue Mar 03, 2015 1:30 pm

HI,

Everyone is different, so you might be lucky and have no problems at all, unfortunately I have not found anything to take away the pain, maybe take the edge of the pain at times, but the side affects I have had have been far worse, causing severe depression along with other things, depending on what tablets I have tried. I take 8 paracetamol, 8 codein, 6 acupan and 1 duloxetine, and I am still in lots of pain. But that's probably just me, lots of people get great results from there medication and have no side affects.
I hope you are one of them, its definitely worth trying, I would still try any medication which was prescribed, as you never know. I have just been one of the unlucky ones.
Good luck, your GP will no doubt be taking it slowly on any new medications and I hope you get the pain under control,
Barbara
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Re: To medicate or not?

Postby denys » Tue Mar 03, 2015 3:31 pm

Medication may take the edge off, or if you are lucky take it down significantly. It affects us all differently and sometimes its a cocktail of different things. Have you been offered one of the talking therapies which may give you tools to help you deal with the pain differently or a pain clinic which generally consists of a multidisciplinary approach :?: :?: :?: :?:

If I were you I would talk to your doc to see what is available in your area :goodluck2: :goodluck2: :goodluck2: :goodluck2:
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Re: To medicate or not?

Postby divingforPearls » Tue Mar 03, 2015 4:08 pm

Thanks for your replies. I think I will wait until several people tell me these drugs take the pain away significantly without causing them side-effects. Can anyone say that? Are they, in fact, better than paracetamol or not? Because paracetamol 'takes the edge off'..I would value all your opinions and the wisdom of your experience, thank-you.
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Re: To medicate or not?

Postby ixel-chick » Tue Mar 03, 2015 4:55 pm

Barbara H wrote:the side affects I have had have been far worse, causing severe depression

The Sertraline I tried did that to me. Horrible stuff. But horrible stuff for me. It did wonders for the fatigue, and others might get none of the side effects, and it would help them greatly. However, it did nothing for the pain for me.

Now, here's the way I look at fibro (those who want to batter me for it - feel free to do so! :-D ). Nothing went wrong with my body. One day it was as fine and dandy as my nearly 40 year old body is, and suddenly everything felt like it had gone wrong! My skin was burning/hurting, and I hadn't been beaten with sticks all over, or been in a fire. Everything between the flesh and the bones hurt - everything. And no, I hadn't fallen off a cliff or been in a car accident.

I was knackered. Completely and utterly knackered from the second I woke up. And no, I hadn't ran a marathon.

To top it off, my brain also got completely confused.


So, that a body that feels like it's been abused in all sort of way, when it hasn't. The fatigue had no business being there, as due to the fatigue I wasn't doing anything. Doing nothing should not make you exhausted! And I wasn't taking some drug to confuse my brain, nor did I have any sort of bizarre virus that would cause it.


Which means - something went wrong in my brain. My brain was set to completely normal (well, I'm sure that can be challenged! :lol: ), and suddenly it flipped a switch, and it was set to "fibro" instead of normal. I'm not trying to say "it's all in the head", but that it originates from the head. The pain is as real as any pain. The fatigue is as real as if I actually had a reason to be exhausted.


Pain is normally a good thing. Pain tells us "hey - you've done something stupid to your elbow/knee/back! Now it will hurt until you give your poor old body a chance to repair itself". Feeling knackered is also generally a good thing, as it's a way of your body to tell you to slow down, as you've overdone it. :-D


With fibro however - we get the pain when it shouldn't be there. We get exhausted when we shouldn't be. And our poor brains gets all cloudy and confused for no reason.


So yes - I belive in medication! But I don't belive in painkillers for fibro, all it does is mask the problem, instead of trying to rectify the problem. The problem isn't the pain (although the pain causes a massive problem), the problem is that for some reason we're feeling pain when we shouldn't.


I'm on tablets (just started again, and already seeing improvements in the pain, and the stiffness. Day 4 after starting again, and this morning I was fully functioning after only 40 minutes, compared to the two hours it took me yesterday to get to that level), that is tricking my brain into thinking it's set back to "normal", although at the moment after a break on them the brain is still more fibro than normal. However, after the success last time around, and with already seeing improvements this time around, I have high hopes I should be back in full swing within 2-3 weeks.


I would prefer not to be on any tablets at all, maybe one day something will come about that can permanently flip the switch back to normal. So yes, if someone wanted to try out an implant that could fix me, I'd happily jump on the opportunity to try it.


People do however need to find what's right for them. Some are happy to be on painkillers, others not. Some are happy to try various alternative ways, like excercise and herbal remedies. Neither painkillers nor excercise is right for me, I don't want to mask the pain (I want it gone), and I cannot see how excercising can help me, as there's nothing wrong with my body (if I had however actually physically damaged my body, then I belive excercise would be of great benefit).


Whatever works for you - do it! What I simply don't get it those that take a whole heap of stuff, and it still doesn't work, yet they continue to be on it. If it doesn't work, try something else!
☐ Fibro Mode / ☑ Normal Mode
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Re: To medicate or not?

Postby Chickenosaurus » Tue Mar 03, 2015 5:45 pm

I take co-codamol (30/500) & Acupan and together these significantly reduce the pain and I don't have any side effects. They make the difference between not being able to move & moving. Moving = less pain.
I found a really good article about codeine not *masking* pain, but just making your brain not care about it as much - I must try to find it.

I also take Prozac (low dose) I don't have depression, but I find it helps with fatigue and fog.

I use these along with exercise, stretching & supplements. I'm coming off pregabalin, due to the side effects. It's a shame since its activity on the insular cortex may go a long way to explain what's happening in fibro...

I'd also like to mention a problem I have with the classification of medications - e.g if you take Prozac, it's an anti-depressant so if it helps you, you must have had had depression. This sounds a bit half-witted, but I discovered that it was the logic employed when I moved to a new GP surgery. I had been taking Prozac & Xanax, therefore I had depression & anxieties. I was even sent to a psychiatrist who 'struggled with me' as I 'wouldn't admit to having depression and clung to my diagnosis of fibromyalgia' :roll:

I was a bit puzzled by all this as no-one had ever suggested I had depression before and I didn't feel 'depressed' but apparently that just meant I was in denial... :crazy:
I think the Dr who diagnosed me with chronic depression (based on a 10 minute appointment) was having issues of his own... The surgery have since issued a letter of apology and removed the diagnosis from my notes.

Anyway, just 'cos medications are grouped together & called something doesn't mean that is their only use, but there persists this notion that if you are aided by medicine x then you must have what medicine x is commonly known to be used for. That would mean somebody treated with diazepam for a severe seizure would be viewed as being 'anxious'!

An awful lot of these medications change brain chemistry & boost or suppress each other - for example, Acupan is called a 'painkiller' but it 'inhibits the re-uptake of various catecholamines (including noradrenaline, serotonin and dopamine)' Sound familiar?

So there's a lot of re-jigging of our chemical soup going on, and if you bear in mind that fibro's probably a group of disorders and that genetically we may respond very differently to medications it's impossible to predict what will work for someone...
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Re: To medicate or not?

Postby Zia2014 » Tue Mar 03, 2015 5:46 pm

ixel-chick wrote:Which means - something went wrong in my brain. My brain was set to completely normal (well, I'm sure that can be challenged! :lol: ), and suddenly it flipped a switch, and it was set to "fibro" instead of normal. I'm not trying to say "it's all in the head", but that it originates from the head. The pain is as real as any pain. The fatigue is as real as if I actually had a reason to be exhausted.


This is kind of where I am with it. I am not 'doing' anything to cause the pain or exhaustion, it is simply there now where it wasn't before. My nerves, impulses, brain wiring etc now tell me there is a lot of things going on and seem to be hyper sensitive. Not sure I'm explaining this very well, but anyway...

Back on topic, I have now taken 8 different drugs for fibro. Some have almost removed the pain completely (Amitriptyline), none really affected my fatigue, most just took the edge off the pain. Most helped with the stiffness. I'm looking for less pain but no longer hope it will be significant, so I use other things like TENS to help with that.

Side effects vary massively and it depends on what they are as to whether you can cope with them. For me, I can live with nausea, dizzyness etc, but can't live with constipation (a common one) as I already have IBS.

divingforPearls wrote:Thanks for your replies. I think I will wait until several people tell me these drugs take the pain away significantly without causing them side-effects. Can anyone say that? Are they, in fact, better than paracetamol or not? Because paracetamol 'takes the edge off'..I would value all your opinions and the wisdom of your experience, thank-you.


I tried paracetamol, it did squat for me! We are all different. The best thing to do would be to look on the NHS page, note the meds, and then look on here (via search) at that side effects people get. Most meds will have several threads on here, and it will give you a general idea of what people have taken and their varying experiences.

One thing I would say is, do you have commitments, eg. family, kids, work, social activities? Meds enable some people to do more of that stuff. I use meds to enable me to function, that is the baseline I'm looking for.
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Re: To medicate or not?

Postby Zia2014 » Tue Mar 03, 2015 5:52 pm

Chickenosaurus wrote:I'd also like to mention a problem I have with the classification of medications - e.g if you take Prozac, it's an anti-depressant so if it helps you, you must have had had depression. This sounds a bit half-witted, but I discovered that it was the logic employed when I moved to a new GP surgery. I had been taking Prozac & Xanax, therefore I had depression & anxieties. I was even sent to a psychiatrist who 'struggled with me' as I 'wouldn't admit to having depression and clung to my diagnosis of fibromyalgia' :roll:

I was a bit puzzled by all this as no-one had ever suggested I had depression before and I didn't feel 'depressed' but apparently that just meant I was in denial... :crazy:


Oh honestly! It's perfectly normal for antidepressants to be used to treat all sorts of pain (I was once given one for IBS!), they are usually 'older' style ADs that have been found to be effective with pain, and there are newer better ADs on the market. What a nightmare for you!
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Re: To medicate or not?

Postby Barbara H » Tue Mar 03, 2015 9:16 pm

To Zia2014

What idiots, you were not depressed, the anti depressants are given to help block the pain signals to the brain, this is widely known and this is why the tablets are used. What a complete waste of funding to send you to a psychiatrist, assuming you are depressed, just by the tablets. You can suffer with depression just because of the symptoms, or can end up depressed or suicidal because of antidepressants, that can be the side affects for some. That is why not all people use them, and its also rubbish for people to say if you do get depressed when on those tablets, you obviously suffer with depression anyway. I do not suffer with depression, but have suffered terrible depression after being put on the tablets, then when I have stopped taking them, it has gone away. Anyone would know if they were depressed. Some GP's are excellent and have a great knowledge of Fibromyalgia, but unfortunately others do not.
Getting back to the first question, I would still advise talking to your Doctor and trying different tablets, to see which are suitable for you, and just keep an eye on the side affects, you may be fine and not have any. Good luck again.
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Re: To medicate or not?

Postby Zia2014 » Thu Mar 05, 2015 2:23 pm

Hi Barbara,

I didn't post either the post about being referred to a psychiatrist or the original query!
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