How much does Lyrica or similar drugs really help Fibromyalgia pain?

[Con]

I have been diagnosed for a year now and have been up to trying different medicines as well as supplements in order to feel better. The number one thing that I was told by someone very wise was pacing yourself. Most importantly-this a chronic illness that if you are sleep deprived you are not going to benefit from a lot of additional things until that is corrected. I for one am on a CPAP machine for hypopneia and after struggling and being on it for a few months, I do have a clear head in the morning but it has done nothing for my energy level or to help me towards not having a flareup. There is a good book to read The Fibro Manual by Dr Ginevra Liptan whom had fibro during her residency.

So, if drugs like Lyrica have helped you, how much have they done so? Have they restored your life, or is the relief only modest? Thanks for being honest and replying to this thread. I truly need your advice.

Frank G

I am on Cymbalta not Lyrica since day one. The dosage has been decreased but I do know that if I had not been on it along with the gabapentin and the supplements I would not be where I am today. Everyone is different with what works for them.

 

[fsgregs1]

You have all been so kind in your encouragement. That is so nice of you.

I sit most of every day because moving about doing chores or anything else, hurts like the dickens. We have all learned from our own bodies that when it sends you a pain signal, it is saying ... "STOP. Something is wrong and is damaged. I am making you hurt so you can stop using that body part, and let it rest and heal." My body has done that for its entire life. If I ignore that, I do so at my own expense. For example, today, I had to cut a small piece of my extensive lawn that my lawn service does not tackle. I got out my electric mower, spent just 10 minutes cutting the small amount of grass, and thought I'd die from the discomfort. I barely made it back to the garage to stow my mower, then went inside and sat down in my big Laz-Z-Boy. I hurt like hell and it took 15 minutes of sitting just to calm everything down. Tonight, I paid for it, aching in ten different body parts, including my hands. I ate no bread, pasta or even dairy to irritate things, and it still floored me. So, when I seek something more than a minor incremental improvement, you can see why. If I can't get this crap licked, I am freakin lost!

I know this sound fussy, but honestly, when I face the prospect of a small, incremental improvement from a change in diet, or an extra 15 minutes of modest exercise, it just causes despair. I did 1 hr of biking today, and hurt when I came back. I need, I want, I cannot face a future without some dramatic improvement. I know you all are telling me it will not happen, but ... if it has really happened to someone, I want to hear about it. For example, if giving up gluten for a month (a BIG sacrifice), has lowered someone's Fibromyaligia body pain by 50% or more, then I may try it. This forum hopefully has LOTS of members. Has anyone out there found a changed diet to be a true panacea? If instead cutting out gluten helps lower a bloated feeling (uncomfortable but not that painful) I can understand it (some folks do not do well with gluten), but it is not worth the big sacrifice I would be making, since a modest improvement is not going to come close to restoring my life's retirement dreams. I'd rather try something else. Ditto with dairy. I already eat practically no meat, restrict my sugar and salt intake, and take all the suggested nutrition supplements, so dairy and gluten may be all that I have left to cut out. I just don't want to do that unless someone can tell me by first-hand experience, that stopping drinking milk improved his/her life dramatically (and I don't just mean via lactose intolerance).

Anyway ... sigh! Thanks again for your kind words. I feel for you all.

 

[JayCS]

Hi Frank,

first I'm going to offer you even more of exactly what you are asking for...

If I can't get this crap licked, I am freakin lost!...
I know this sound fussy, but honestly, when I face the prospect of a small, incremental improvement from a change in diet, or an extra 15 minutes of modest exercise, it just causes despair. ....
I need, I want, I cannot face a future without some dramatic improvement. I know you all are telling me it will not happen, but ... if it has really happened to someone, I want to hear about it....

So you seem to see 3 alternatives at the moment. Either a) you are freakin lost or b) you'll be in despair, and that seems worse than being lost, or c) one person has to tell you about a miracle cure that will restore your life's retirement dreams, plus this will need to be true for you, which as said is highly improbable.

c) FYI there are quite a few people here, on youtube and elsewhere touting miracle cures.

You don't seem to have been impressed by me citing 2 people here who said Lyrica made a major difference for them, I'm not sure why, because that was your original question. If you discount it, because of your previous bad experience you'd need to rephrase your quest / question - as you are no longer looking for 1 or 2 persons. You also don't seem to be impressed by the opposite, the averages computed by medical research, altho you are a scientist yourself, if so you could read up more about comparisons the 4 typical meds in my post here (thanks to @Zahnj/Jenny for reminding me of that by 'liking' it today).

Then there are people on youtube saying the miracle cure is pushing thru the pain. Obviously not right for you, like for none of us. But there's more persons touting miracle cures.

Others are touting certain diets as miracle cures, as I said above, diets you haven't tried yet. You don't seem impressed by that either. So even when someone points you to their miracle cure you are saying no.

Then there are pills, if that's what you want. Lyrica you seemingly don't even if someone has affirmed your question. So probably not the alternatives, altho you didn't seem impressed by them either - duloxetine and amitriptyline. Nortriptyline is an alternative to amitriptyline which I forgot. All of these for some people make a dramatic difference.

Closest to the med pills is low dose of nal trexone = L D N, touted as a miracle cure by seemingly a lot of people on the web and some people have done so here too, and it's even something I might try if I can get a doc to prescribe it. But my research on forums about it shows it helps maybe half and can harm the other half. Only for a few does it make a dramatic difference. So I don't think it'll be right for me.

Then there's another med, actually a cough med, guaif enesin. Like above I've again separated it to get it thru the forum software, as we are tired of people touting these two as miracle cures. But for you it's again exactly what you seem to want: A few people saying it's perfect. The downside of that one however is it will definitely make the symptoms worse for at least 2 or 3 weeks. And that doesn't seem to be the prospect that will make you happy.

There are also a few herbs, recently Indian pipe / Ghost pipe was mentioned as a rare one - you can look for that thread and see if that one person is saying what you want to hear.

Regarding the first-hand one person experience: Reading people like the aforementioned starts to put those into a much smaller perspective.

And secondly now I'm going to question your mindset, cos I don't understand it and there seem to be quite a few contradictions or things I don't understand. May seem a bit cheeky sometimes, if so sorry, I hope you can take it, but it doesn't seem as tho we're able to help otherwise:

You talk about your expectations maybe sounding fussy. Yes, it does sound a bit strange you saying "I'd rather try something else" to us who have been or are in similar or worse situations than you. Your life's retirement dreams... what about those in the same situation as you at 27?
And what is going to happen to those dreams if you don't find anything?
It's also strange that you seem to be either overlooking the perfect answers given to your questions - or are you going to say no whatever anyone says, because what you think you want is something different to what you actually want. What do you really want?

Your examples above are also a bit strange, after we suggested keeping under the limits, and only careful trying to get those higher, you are surprised that pushing thru the pain causes repercussions. Again these expectations unfortunately aren't realistic at all. No way were we suggesting pushing thru the pain in this fashion.
I'm not surprised that you sat on a lawn mower in discomfort. But I'm wondering why you continued pushing thru the pain? I'm also wondering how come you express your feeling as believing you'll die - even when I have pain that makes me scream, moan or cry I don't feel I'll die, I know perfectly well I will be able to stop screaming soon. Or I often have a yucky unrest and discomfort in my lower back that I "hate", and want to run away from, sometimes I have felt I wanted to stick a burning rod into it, but that's not discomfort that I'm going to die. And then .... you only allowed yourself 15 minutes to recover? I'd need 3 or 4 hours at least, doing NOTHING physical, if it had been excruciating even the whole day (e.g. dentist). So again I'm not surprised about your night being disrupted by pain and maybe the next too. It'd be the same for me.
Then you seem surprised you increased your bike riding to 60 minutes on the same day as the excruciating lawn mower. One of these was apparently too much already, you did two, and probably something else on the same day... do you know the "Spoon Theory" or we prefer the "old battery" analogy? Getting out of bed and having a shower and breakfast may be all we manage on one day, and the challenge is then to be thankful for that.
I'm also not sure what's leading you to say that giving up gluten for a month or two is worse than being lost or in despair? I'm surprised that you think having stopped meat, lowered sugar and salt is a lot. Which would be vegetarian, not sure why you originally said semi-vegan, have you halved your dairy?

Altogether I'm wondering if you may be in one or several of the "stages of grief"....
And hope you manage to cope - again we'll be glad to support you!

 

[cookiebaker]

So, when I seek something more than a minor incremental improvement, you can see why.

Believe me, we all know and understand your despair. Many of us have been in your shoes.
But - there are no quick fixes. None. There are no , sorry.
Everything is kind of incremental with this thing they call Fibromyalgia.
A little here, a little there.. each little thing that helps adds up to much more overall.
Asking for that "one thing that makes it all better" is like hunting Unicorns.

I ate no bread, pasta or even dairy to irritate things, and it still floored me.

one night of cutting these things will not show you any difference.. it needs to be done for several weeks to a month to know - it takes a while for all "toxins" (for lack of a better word) to clear your system.

If instead cutting out gluten helps lower a bloated feeling (uncomfortable but not that painful) I can understand it

Oh, but it is much, much more than JUST a bloated feeling... that is only a small part of it for me..
When I get bloated it is hard to breathe,
not breathing well means less oxygen intake,
less oxygen means more pain - REAL pain - from tissues that are not being fed properly.
And brain fog - omg, the brain fog.
And all of this doesn't just go away after a few hours, either.. it will take several days to get back to where i was before the hamburger.
I am sitting here, writing this at a quarter to 5AM, having been up all night because i hurt too much to sleep.. cant get comfortable. Honestly, not very comfortable sitting either, but slightly better than lying down.

Also, it is not just about gluten, either... there are many things that can be contributing to your pain levels. Each one should be tested by eliminating it for a while...
The fastest way to do all of this is to do a full on elimination diet - it can be pretty restrictive to do this, but it is faster than trying one thing at a time. I would suggest, however, that you speak with your doctor before going that route.
Essentially, you cut out gluten, sugars *high fructose corn syrup is a major culprit* , dairy, caffeine, etc all at once, then reintroduce them one at a time every few days. If you find something that causes you problems, then that item gets cut permanently..

I know this sound fussy, but honestly, when I face the prospect of a small, incremental improvement from a change in diet, or an extra 15 minutes of modest exercise, it just causes despair.

I am going to apologize in advance on this one.... so, please forgive me if this comes across as harsh or mean.. that is not my intention.

Yes, you sound fussy, and whiny, and full of excuses as to why you just cant even try something. You are being a "Negative Nate" here. (I would say Negative Nancy, but that is the wrong gender?) *trying to lighten things up a little here - laugh darn it!*

The whole point of making dietary changes is to see if there are things that are making you feel worse. Things you may think have nothing to do with your pain, but in reality, they can contribute to your overall pain, and often quite a lot. (see my comment above about the bloating from eating a darn hamburger)

You wont know if it makes a difference for you unless you actually try it
I know you say you dont eat much of this or that... Even eating just a little can have an impact on how you feel. (the hamburger again - one hamburger - rather, the hamburger bun - has put me down for a couple of days already)

I did 1 hr of biking today, and hurt when I came back.

It is no wonder you hurt, doing double what you would normally do. That is not the way to do this.
BABY STEPS! Small increments!
I know, I know - not what you want to hear.. but it is apparently what you need to hear - multiple times.

You have been given multiple options on things to try, but you seem to have plenty of excuses for not trying them. Why is that, do you think?
We are trying to help, but we cant help if you are not willing to try anything (or overdo things).

Oh, and for the record, i have never heard of someone dying from not eating pasta.

 

[sunkacola]

We are trying to help, but we cant help if you are not willing to try anything

@fsgregs1 , we all wish you the best, but I agree with the foregoing posts, and especially the statement quoted above.

You are unwilling to try anything unless it is guaranteed to produce a miracle.

If that remains your stand on this, you are unlikely to get any help or to get any better. Not because help is not available or offered, not because nothing would make a difference in your life, but because you throw up a brick wall to every thought or suggestion.

I offer my suggestions in the post I wrote. I can tell you that after experimenting with those things and observing my body and being diligent with trying different things until I found the combination I needed, I have definitely reduced my symptoms by a very significant amount. I live a pretty normal life. I can hike and dance and take long walks and do most things I want to do if I go about it right and get enough rest and do the other things I need to do to maintain that.

So there you go: there is your significant improvement statement coming from someone who was in pretty bad shape several years ago.

But you are unwilling to try any of what I suggest because you are not willing to put any effort into discovering for yourself what will work for you. You want someone to hand you a "cure".

Well.........................there are a lot of people and websites that will tell you they have the "Miracle Cure"!

Turmeric! A plant-based diet! No Gluten! Going vegan! This supplement! That supplement! Doing yoga! Doing Pilates!
The list of things that someone will tell you reduced their symptoms by 50% or more goes on and on.

I have heard about literally dozens of magic treatments ; places where someone says this or that has lowered their pain and other symptoms by 50%, some will say 80% or 100%. We have had people on this forum who arrive just to tell us about this or that thing that completely "cured" them. You can easily find these folks online. So if what you need is to hear:

if it has really happened to someone, I want to hear about it. For example, if giving up gluten for a month (a BIG sacrifice), has lowered someone's Fibromyaligia body pain by 50% or more, then I may try it.

then that is very easy to find online.

But you will not be likely to find a miracle cure guaranteed to work touted in places like this forum that are dedicated to giving accurate and scientifically proven information and telling people the truth about fibromyalgia, and the truth about our experience.

 

[fsgregs1]

OK, I get the point. You are all likely correct. If I am to lower my pain and return to some bit of life, I guess I do have to try changing my diet for two weeks or so, and see if anything helps. I do have nothing to lose and there is almost nothing left that I have not tried. Your advice is sound.

1. I already do not consume high-fructose corn syrup (we check every label). I already eat virtually all organic foods and eat very little meat (only a bit at lunch). However, I will give up gluten, dairy and all meat for two weeks solid. That leaves me with no current cereal, no pancakes, no yogurt, no cheese, no breads, no pasta, no sandwich meats, no sandwiches at all. For breakfast, only eggs and fruit. For lunch ... I'll figure something out. For dinner ... ditto. If, at the end of 2 weeks, I feel NO real difference, I will return to those foods but eliminate my daily glass of wine, and give up coffee for 2 weeks, to see if that helps. I'll buy some gluten-free breads.

Trust me, I know I cannot overdo exercise. I again probably misrepresented how much I did yesterday. Yes, I doubled my biking to 1 hour, and it did make my knees ache more when I came back, but I have no other way at all to try to boost calorie burn. I already try to walk with a walker and I lift modest weights. Likewise, I did walk behind my mower for 10 minutes (cannot ride a mower ... it jars my spine). That tiny amount of time did me in. 10 minutes is so small that I should not have been floored by it, and my lawn needed the cutting, but ... it did. In fact, I mow my little bit of lawn because I cannot just sit in a chair forever.

2. You are all right that since I have no idea why my body hurts so much, maybe there is something I am overlooking that someone else has discovered to lower their body pain 50% or more. As a scientist, I should not overlook the very powerful effect of Placebo, but ... I keep hoping. That's why I joined your forum. I know the web is full of miracle cures, snake oil and pure BS, so I hoped your forum had someone on it that could outline what they did to return themselves to reasonable health. Sunkacola, you said you lead an almost normal life, still hiking, walking, etc. If that level of improvement in your condition is due to the small incrumental changes as you've outlined in prior posts, they I apologize for misunderstanding. I thought you were dtill close to me in current pain level, and had only small improvements. Sorry about that.

I will keep you posted of how my condition has changed (if any) after my diet restriction is done. Thanks for the talks. You are good guys.

 

[sweetkamie20]

Hi, Frank

*Looks like you had a reply just as I was finishing writing this - apologies for any redundancy*

I do understand your exasperation. Back in February (before I was diagnosed), I was in so much pain all day every day that I understood why people would commit suicide. Thankfully, and without credit to myself but rather to the source of my faith, I was not suicidal myself. But this pain I felt for such a relentless period was a sort of torture.

It is from that vantage point where death appeared a blessing that I write to you: there are many reasons to hope to find something/some things that make life satisfactorily resemble the life you envisioned for yourself. I found it by listening to the advice of the many people here on this thread.

I asked them to name a drug that would restore my life to me; they said there are some other routes that are more trustworthy and they were right. They told me to stop pushing myself so hard - it was exacerbating my symptoms. It was.

When I stopped assuming I would have complete control over my schedule and activities, I began experimenting with how I could live my life cooperating with my body. The end result is a fabulous reduction in the misery. That reduction in misery caused me to actually begin enjoying the things I do. I suspect you will find the same as I did: doing less things, but not being so miserable, will be sufficient consolation You won't know if I am right until you try it, right?

I do less things, but the things I do are more meaningful to me and the things I don't do are things that made me more miserable anyway. I spend far less time being preoccupied by extreme pain, and more time savoring the things I do. I have decluttered my life of the things that were more distraction than satisfaction.

I know it is not what you want to hear; it was not what I wanted to hear either. I desperately hoped to find one thing that fixed it all and wouldn't require me to change my life. What I have changed my life in what I consider to be a modest change: I don't push myself to do things unless I REALLY want to do them. When I push myself, it is because I recognize how much I might pay for it and deem it worthy anyway.

That said, I have found some other things that aid me substantially. You may want to try an H1 antihistamine. Certainly, various supplements may help you also. For the pain you have, you would probably get a better head start implementing what other people with similar pain use. My pain is more like being on fire inside my body, a fever/flu like illness coupled with some other things.

I do hope you try some things you are reluctant to try right now. I do believe you will find the ability to be content despite fibro.

 

[cookiebaker]

OK, I get the point. You are all likely correct. If I am to lower my pain and return to some bit of life, I guess I do have to try changing my.....

"attitude" will work here as well,
and do keep in mind, it is not just dietary changes - but those are a great place to start... you may need to try other things as well, like the antihistamines, or supplements.
Just out of curiosity, have you had your vitamin/mineral levels checked?
I had mine checked back in May... was VERY low on Vit D, and quite low on iron, too.. the rest were ok.

but I have no other way at all to try to boost calorie burn.

until you get your pain to a more reasonable level, lets not focus too much on "burning calories".. just keeping the joints moving and not losing mobility is ok for the moment, as long as you aren't packing on pounds every week.. you can worry about calorie burning later, when you have a better handle on things. baby steps.. one day at a time.

Pretty sure we have all been in that place of despair at some point with our Fibro.. and we all wanted that quick fix, one pill that would make us feel "normal" again.. and we have all learned, there is no miracle pill. But there are things we can do... things to try... to regain even a little of our old selves again.
Heck, right this very minute, i am struggling with a bit of that demon, despair.. in the midst of a flare up - right SI joint is being difficult (quite painful), left knee is also complaining (from limping due to the SI) and my gut is still not happy with me over that silly hamburger, so yeah.. struggling at the moment.. but I will not give in to the monsters - I refuse!! I have my heating pad out for the SI joint, and am able to sit & try to relax for a little bit before attempting to get laundry going. I have the dog, the cat and my partner, so I am good.

 

[sunkacola]

OK, I get the point. You are all likely correct. If I am to lower my pain and return to some bit of life, I guess I do have to try changing my diet for two weeks or so, and see if anything helps.

Two weeks or so will NOT give you the information you need!
You are still looking for the quick fix, thinking you can get results in two weeks!!

You need to try each different thing on its own for a minimum of a month.

First, do not cut out more than ONE type of food at a time. (this is all laid out in my advice post). If you do that, you will never know which thing helps you and what doesn't.

Second, You need to cut out ALL of a certain kind of food and do it for a month. For some people it takes that long to see a difference, and if you only try it for a couple of weeks and then give up you are not giving it the right attention.

So, not eating high fructose corn syrup is fine but if you want to see how sugar affects you you will need to cut out ALL of it for a month at least. Sugar hides in almost everything pre-packaged so reading every label matters and preparing as much fresh food at home as possible as well.

If you cut out all meat, dairy and gluten all at once you are not going about it in the kind of attentive experimental manner that is really required.
Think of this like a scientific experiment....you don't try everything all at once. Cut out ONE for a month. then one different thing etc.
Again, this is mentioned in my advice post.

You are all right that since I have no idea why my body hurts so much, maybe there is something I am overlooking that someone else has discovered to lower their body pain 50% or more.

What worked for someone else may not, of course, work for you. That is why, as we keep telling you, you have to put in the time, effort, attention and work to find out, slowly and methodically, what works for you.

maybe there is something I am overlooking that someone else has discovered to lower their body pain 50% or more.

There is.!
And that something is exactly what we have been telling you. Find out what works for you.

so I hoped your forum had someone on it that could outline what they did to return themselves to reasonable health. Sunkacola, you said you lead an almost normal life, still hiking, walking, etc. If that level of improvement in your condition is due to the small incrumental changes as you've outlined in prior posts, they I apologize for misunderstanding. I thought you were dtill close to me in current pain level, and had only small improvements. Sorry about that.

Yes, that is exactly what I did in my post. I outlined all of my suggestions for things to try to have the results I have had. Of course, the list is not exhaustive, but only a starting point from where you can continue to find other things to try for yourself.

I did not list all the things I specifically personally found out for myself that work for me or the things I do daily, because there's no point in that. You could follow exactly what I do and it might not work for you.

YES, what I have been trying to tell you is that the vast improvement I have managed to get is fully and only due to the small incremental changes and improvements I made over time. No need to apologize, but please do understand what I am telling you.

AND>>>>>>just for the record, I would never be so arrogant as to write a whole post of advice for people with fibromyalgia if I had not seen very significant improvement in myself with the approach that I was recommending!

Several years ago I was pretty nearly incapacitated. I had high pain levels all day and all night every day with few breaks from that. I was unable to do the things I wanted to do. On the couch basically all day. I couldn't have mowed a patch of lawn to save my life, not that I have a lawn.

My experimental journey took two years to get to the point that I know what works for me and what doesn't in all the things I tried.

And, it is never "all done". Because things will shift and change and part of doing what you need to do to manage it is being flexible and willing to change what you are doing and try something else if it stops working for you, even if it has worked for a long time. This is not a static thing because our bodies are always changing.

I just went at it methodically, one thing at a time, trying each thing for at least a month each time.

This doesn't mean you cannot try cutting out a food AND starting a certain exercise at the same time, AND working on attitude at the same time.
But you will not be going at it correctly if you change three foods at once or try two kinds of exercise at the same time.

I also knew when I started that if I gave up before I found results I would be defeating myself and sentencing myself to a life I really disliked without having tried hard enough and long enough. You have to be persistent. This takes energy. There are days you don't think you have the energy. But there are no days when you don't have the energy to eat something that is good for you or to work a little bit on improving your mind set.

My feeling was, and is, that if you have not really tried everything you can think of or find out about, and tried those things for long enough, then you will never know what you missed that might have helped.

It took several weeks before I started waking up, and getting out of bed without taking any pain killers. Had I given up in those first three months or so, I would still be in the same condition I was then.

It took more months for me to find out what kind of exercise really worked best for me, and more months after that to learn how much. It took at least a year to find out what kinds of foods work best, but that is something I am still and constantly playing with to see if I can refine it or make things even better.
And it took almost all of the 2 years for me to learn how to listen really well to my body and do what it asked me to do.

Everyone wants a quick fix for everything.
For some things that exists and for some it doesn't. Wisdom lies in realizing the difference and then if it is not in the quick-fix category, being dedicated in your effort to find out what works no matter how long it takes.

I could still be demoralized and disabled but I am not. I see no reason why anyone else cannot do what I did....I am nothing special. Results vary, of course. But you can get to the best point you can achieve if you just don't give up.
And you are welcome.
It is one of my greatest wishes that many more people with fibro will realize that they are not powerless, and will find their own way.

 

[Auriel]

making an effort to cut out breads (I love breads) & pasta (I love pasta).

Same fsgregs 1, (i'm lethal when it comes to carbs), I've had to take the gluten/wheat free route (it doesn't taste the same but i find my pain lessened) also welcome to the forum ️

 

[Badger]

Over ten years ago after lifting too much garden waste since no one else was shifting it, I had a severe flair up that led to constant burning pain from my elbows to fingers over the top of my forearms. It made life miserable and I lived with it for some time before trying Gabapentin. It helped to a point but not enough. After being refused Pregabalin a few times a GP finally let me try it. It seemed to help so the dose was increased to 450mg. The forearm pain calms down most of the way but it does not help any other pains. If there is any benefit regarding mood or sleep I couldn't say. The worst side effects for me are brain fog, weight gain and constipation. I take it in combination with Amitriptyline 10mg which helps towards sleep. GP's have rudely commented on me taking an 'expensive medication' and I have no faith in getting much help or understanding from them. @fsgregs1 hopefully in time changes you make will be of benefit and lead to a better quality of life.

I shall look back at sunkacola's advice to see what I might try next and make note. It can seem daunting when you are already feeling at the bottom but can only be tackled in stages to be fair so it's worth doing a little something in the present. Over the past few years, I've gradually introduced some changes. Vitamin B, D, Magnesium and husk fibre supplements. Daily meditation, breath work, a small amount of gentle movements, relaxation tracks for sleep and beginning to cut down on alcohol and junk food. As you know it's difficult pressing on or making changes with the stress and grief of chronic pain. However, it's vital to tackle the suffering that makes it so much harder to live with the condition. sweetkamie talked about hitting that low, it can be a scary feeling and have a big impact on life.

​

 

[JayCS]

GP's have rudely commented on me taking an 'expensive medication'

Which one did they mean? I'd think pregabalin in comparison to amitriptyline, which is cheap, maybe an 20% or less of pregabalin. But of course that very much depends on the doses, which (see the cost-efficiency studies) are different according to our body, conditions (esp. fibro), symptoms & body, as well as many other factors like other meds, total health care costs and sick leave. What's the sense of a cheaper med that helps less and harms more... - it'll only cause costs elsewhere.

Trying to understand why gabapentin (now not amitriptyline like above) is prescribed so often, I just looked for a price comparison and found rheumatologyadvisor citing a study saying:
"For patients with peripheral neuropathic pain (PNP), the adjusted cost per patient is lower for treatment with pregabalin than gabapentin."
So pregabalin doesn't seem that much more expensive than gabapentin for the insurance/us (the payer), and all factors considered maybe less expensive, at least for society/employer.

Spoiler: Click for quotes from the study

"The researchers found that the duration of treatment was slightly shorter for pregabalin than gabapentin (5.2 vs 5.5 months; P= .124), with mean doses of 227.4 mg and 900 mg, respectively. Per patient, the average study drug cost was higher for pregabalin than gabapentin (€214.6 vs €157.4: P< .001), although there was a lower cost of concomitant analgesic medication (€176.5 vs €306.7; P< .001)"
"Per patient, the adjusted average total cost was lower for pregabalin treatment (€2,413 vs €3,201; P= .002) because of significantly lower health care costs and non-health care costs; this was due to lower use of concomitant medications, fewer primary care visits, and fewer days of sick leave.
“After loss of exclusivity of both drugs, pregabalin continued to show lower health care and non-health care costs than gabapentin in the treatment of PNP in routine clinical practice,” the authors write.
Several of the researchers have to do with Pfizer, who makes pregabalin. However it doesn't seem to me that much more expensive.

 

[cookiebaker]

Two weeks or so will NOT give you the information you need!
You are still looking for the quick fix, thinking you can get results in two weeks!!

You need to try each different thing on its own for a minimum of a month.

First, do not cut out more than ONE type of food at a time. (this is all laid out in my advice post). If you do that, you will never know which thing helps you and what doesn't.

Second, You need to cut out ALL of a certain kind of food and do it for a month. For some people it takes that long to see a difference, and if you only try it for a couple of weeks and then give up you are not giving it the right attention.

So, not eating high fructose corn syrup is fine but if you want to see how sugar affects you you will need to cut out ALL of it for a month at least. Sugar hides in almost everything pre-packaged so reading every label matters and preparing as much fresh food at home as possible as well.

If you cut out all meat, dairy and gluten all at once you are not going about it in the kind of attentive experimental manner that is really required.
Think of this like a scientific experiment....you don't try everything all at once. Cut out ONE for a month. then one different thing etc.
Again, this is mentioned in my advice post.

I agree that two weeks is not nearly long enough, you need an absolute minimum of 3 weeks - but for added assurance, a full month is best.

but...

You can cut "everything" all at once, then add back one thing at a time (search healthline for the Autoimmune Protocol (AIP) Diet )
You cut back pretty much everything except what are called "baseline foods" - includes lots of fresh, unprocessed veggies (except the nightshade family - (potatoes, tomatoes, eggplant and peppers, and any spices/seasonings derived from these things), minimally processed meats - preferably wild game, fish & seafood and "free range" poultry (no hormones or additives) - and a few other things.
Yes, it is very restrictive and can be hard to follow for the recommended time frame (ie: one month).
You then add back ONE thing at a time - can not stress that enough - ONE thing.. not an entire group, but just ONE thing from a group (and possibly even prepared in just one way), and wait several days to see what the results of adding that item back will be.. if that goes ok - no symptoms at all, you add back one more thing and wait several days, and so on..
Anything that causes adverse symptoms (even mild ones) gets cut completely and permanently.

Now, granted, cutting one thing at a time for a month is probably a lot easier to follow, but will also take much longer than the above..
Either way will still take diligence and effort, yet give similar results.

I believe it is best to give people the option of deciding which method is going to work best for them.

 

[sunkacola]

You can cut "everything" all at once, then add back one thing at a time

Very true and thanks for pointing this out.
Actually, hours after I posted that above I realized the error in what I said and was going to correct it, so thanks cookiebaker!

 

[cookiebaker]

Very true and thanks for pointing this out.
Actually, hours after I posted that above I realized the error in what I said and was going to correct it, so thanks cookiebaker!

LOL, no problem. I know sometimes we get overly focused on how we do something and forget there are other methods that also work.