Experiences with Lyrica?

LolaMerle

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I'm trying to get the hang of where to post and just found a few older posts about Lyrica, so I decided to start a new thread. If I didn't do it right, someone please let me know!

I'm wondering about others' experiences with Lyrica, and even Cymbalta. I was diagnosed with peripheral neuropathy and my doctor put me on Cymbalta (60 mg/day). It helped with some of the tingling and numbness in my left hand and foot, but not a whole lot. In continuing "THE SEARCH"for years, as most of you have done, to find out why I experience the really crappy fatigue, and the pain in various parts of my body, my doctor diagnosed fibromyalgia, which makes so much sense. She prescribed first 75 mg/day of Lyrica, then up to 150 mg/day. I honestly don't know if it is helping. I continue to have nerve pain in my back and shoulders (caused by osteophytes pressing against the nerves in my spinal cord). I haven't had the costochondritis-like pain, mentioned by some here, across my breast bone that took me to the ER numerous times in the past, but that wasn't major anyway - just a source of wondering if I was having a heart attack (now I know it's fibromyalgia). I had read some horror stories about women who gained a lot of weight on Lyrica, and after starting to gain weight in just one month, I'm questioning whether or not it is even helping the pain, and I want to go off of it and maybe even the Cymbalta.

I don't know! I'm so conflicted! What I do know is that I absolutely don't want to be on a drug that will cause more weight gain, especially when I'm not sure it's helping anyway. I'm experimenting with CBD oil and CBD/THC at a 1:1 ratio. I've been exercising on on exercise bike and am up to 15 minutes a day now. I guess I was wondering who else has been on Lyrica and/or Cymbalta and what their experiences have been? I'm just so freaking tired of trying to figure it all out!
 

JayCS

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Good idea of yours to search for old posts to get an idea of others experiences. If you'd've found one from the last 3 months and esp. if you'd've found something which rings a bell/true for you etc., then it might've been fitting to add to that one. That wouldn't be a problem. But usually people start new ones like you've done here. As you've asked for feedback you might like to know that writing in capital letters, even in the title, is sort of "shouting", or at least attracting more attention than necessary, so you may like to just write them normally. If you want you might still like to try to edit it, I'm not sure how long you can do so, praps longer as you're the thread starter. :) Writing "THE SEARCH" in capitals on the other hand is very understandable to us all... *sigh* But please don't worry!!

I didn't quite understand what took you to ER if it wasn't costochondritis-like pain, do you mean it was the osteophyte-pressing nerve pain?

Both pregabalin and duloxetine are often prescribed for fibro, some are on them for ages, can't imagine life without, some have no side effects, some tolerable, some stay on them despite more severe side effects. I'd think side effects are on average more severe from pregabalin than from duloxetine.
An older alternative to pregabalin would be gabapentin ('Neurontin') and an alternative to duloxetine would be amitriptyline ('Elavil') or newer nortriptyline ('Pamelor'). Duloxetine is prescribed more if depression is more prominent, but the other 2 are also originally anti-depressants, just usually used lower dosed for fibro. If side effects of one are too severe, it might be worth trying the other and comparing.

Your uncertainty is understandable. But what I can see is that you are trying to figure things out yourself, taking it into your own hands and making your own decisions, instead of giving yourself up to docs, which is I think laudable and in my experience definitely the better way, if you can toughen yourself up to cope with the time and strain it may cause. The reward is a strong feeling of self-efficacy, getting to know your self, being able to self-care better.
Now to gain more self-certainty you've already stipulated that you don't want weight gain. I don't think it's a woman thing, much more than that it's a question of having to carry additional weight around and it weighing us down while moving and exercising. Duloxetine, amitriptyline & nortriptyline on average cause even more weight gain than pregabalin and gabapentin. I gained 6 kg on amitrptyline and I hated that. It was a bit of a life-belt for sleep (zombifying) until I realized there's many better things and I need a clear head to find these better things. But I stopped it after 4 months due to >8 side effects, this was only one. For some they don't get worse, for some better, but mine added and added. And it took ages to get the 6kg off again, even longer than 6 months.

So in a nutshell I'd say it would fit to your mindset to stop both and look for further alternatives instead.
This doesn't need to be a fixed decision, e.g. you could look for and add alternatives while keeping them on for a time,
or you could stop them, look for alternatives and if that is bad for you, return to them.
Also I wouldn't get worked up about the decision, as that doesn't help: it harms.
Instead I'd calmly plan several routes and try them for a set time, allowing for spontaneity too.
There are loads of things to try: symptom tracking / trigger hunting, >30 types of physiotherapy/exercise, >20 diets (which can be broken down to 3-4), >15 herbs, >20 supps, >5 essential oils, >3 kinds of psychotherapy, >5 types of relaxation/mindfulness etc. ...

Your experimenting with CBD/THC and exercising also shows you're increasing being pro-active. No-one knows better about CBD & THC than @sunkacola. Just a speck of CBD oil zombified me, like similar herbs/supps, so I can't help there. With exercising my suggestion would be that it's great to keep up your 15 minute stint, adapted to your daily condition. I wouldn't consider just doing 5 minutes on one day 'too weak' or 'the beginning of the end', I'd say 'tomorrow will be better again', best rest. But what I generally find bet for any exercise is to also do several short stints, of 1-5' of something like stretching / yoga etc. in between, always trying to keep to the sweet spots, under the limits.
 

LolaMerle

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JayCS: Thank you for your very informative reply. I couldn't see how to change the caps on my thread, but your advice is noted for next time.

As far as the ER: Over the last 15 years or so, I would get a serious ache in my left arm, plus the pain in my chest and just all over feeling sick. Every time I called the advice nurse and they heard the words "chest pain" they would advise me to go to the ER. I guess I knew myself that I wasn't having a heart attack, but I know how extensive their tests are so I went ahead to the ER, actually hoping they would find SOMETHING to explain what was going on. But every time they found nothing wrong. When I was diagnosed last year with peripheral neuropathy and the osteophytes were explained more thoroughly (explaining the left arm pain), and then at the beginning of this year when I was diagnosed with fibromyalgia, I finally had an answer as to why I was experiencing the pain that took me to the ER. It was scary and confusing because they were most of the symptoms of a heart attack, except the shortness of breath, and I explained that to the advice nurse and they still advised me to go to the ER. Now I know what else to look for in case of a real heart attack - all of the above, PLUS shortness of breath.

My weight is at 230 and I have already experienced the discomfort of carrying this extra weight around and it is just totally unacceptable for me to gain more. I've always had a hard time sticking to an exercise plan and I feel I have finally found something I will stick to, especially because I haven't set it up to actually start at 30 minutes a day! I was burning out to quickly because I wasn't in shape to start at 30 minutes. And you're right - if I can't do the 15, I will be okay with just doing 5 and work back up to 15.

I tried gabapentin and my legs started to ache right away and kept on aching until I stopped taking it. I tried amitriptyline in the past also but the side effects kept me from continuing (can't remember what those side effects were). I'm trying to go off Lyrica by titrating down from 150mg 2 times a day to 75mg 2 times a day, but I was only on it about a month so maybe I'll just go to 75mg once a day and stop altogether in a day or so. I still feel spacey from taking Lyrica and Cymbalta last night so I am anxious to get it out of my system. After that I'm going to go from 60mg a day of Cymbalta down to 30mg and see how I feel. I have to be careful not to go off of anything that is actually helping. I just don't want to be on something that ISN'T helping.

My doctor is supportive of whatever I want to try. She knows my goals and that I don't make decisions lightly. I'm fortunate in that respect. I'm going to keep the search going. This forum has already helped tremendously with that! Thanks again!
 

KimsCorner

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I take Lyrica, it helps with my Neuropathy & Fibromyalgia. Cymbalta is mostly used for depression. But whatever you & your doctor thinks is best, follow that advice.
 

LolaMerle

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KimsCorner: Did you experience any weight gain with Lyrica? It was helping me with Neuropathy; I'm not sure about fibromyalgia, but I gained five pounds right away.
 

KimsCorner

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No, I haven't gained any weight from the Lyrica. Cymbalta, I did & also Neurontin. I think I spelled that one right.
 

JayCS

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Lyrica? It was helping me with Neuropathy; I'm not sure about fibromyalgia, but I gained five pounds right away.
I haven't gained any weight from the Lyrica. Cymbalta, I did & also Neurontin.
Yeah - very individual if we do or don't. Altho we always have to keep in mind that it/part may be due to having to reduce exercise.
Neurontin. I think I spelled that one right.
Yup, = gabapentin. But after one another, I'd think? Or together? And you've stuck only with Lyrica/pregabalin?
 

JayCS

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I have a friend that takes Gabapentin & she told me to stay away from it!!
Hehe, well, as I say it's very individual, but some actually do better on gabapentin than on pregabalin. Altho pregabalin was developed as a successor because of trying to improve the side effects of gabapentin. But that only works for some.
As to "telling someone": Quite a few of us here would "tell you" to stay away from all of this stuff, but that's our experience, and yours is yours: we all have different forms (praps subgroups) of FM, different co-morbidities, are all different....
 

sunkacola

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I have a friend that takes Gabapentin & she told me to stay away from it!!
I always recommend that people try other ways of dealing with fibromyalgia and keep pain medication to the absolute minimum, and nothing steroid or opiate.
Having said that, I will also say that no one can "tell" someone else what is right for them because it is so individual, as JayCS says above. Gabapentin can have serious side effects, and for some it does nothing, and for others it helps. Your best approach is one that takes into account the entire body and increases your overall health rather than expecting drugs of any kind to be the solution. :)
 

KimsCorner

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You're right, no drug is solution for some people. Over the last 25 years I've learned that, and it's not been an easy road. As for pain medications, that's an touchy subject for me. I use to see a pain management doctor, but about 6 years ago I was fired from the pain management. They accused me of testing positive for Marijuana, which was wrong. I'm a recovering addict and wasn't about to do or take something that would show up in my system because that's just how much pain I was in. About a year before they fired me, I started taking what I called my miracle drug. I'm diagnosed with both Neuropathy and Fibromyalgia, but this was a medication for Neuropathy only. I think it was called Nucyenta?? So, when they fired me from the pain clinic I begged that they keep me on the Nucyenta and take me off all the pain pills. Their answer? First was to call security on me at the clinic, immediately after being fired. Then, they would hang up whenever I tried to call. I had been with this pain specialist for 12 years and it was embarrassing and a huge slap to the face.
 

JayCS

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Hmm... 'Nucynta' = tapentadol, an opioid, NRI, like Tramadol, but more potent, Schedule II in the US, I in CDN... that'll be why...?
 

KimsCorner

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That's funny because last week when I tried to refill me Lyrica they wouldn't give it to me 2 days early, said it was too soon and a controlled substance. But my PCP prescribers that, along with Xanax (I have PTSD & GAD) and tiZANidine. (Muscle relaxer) Both of those drugs are a controlled sus stance, are they now??
 

JayCS

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controlled substance. But my PCP prescribers that, along with Xanax.
Yeah, 'Lyrica'/pregabalin is addictive, 'used recreationally' (commonly here) and controlled, but only Schedule V (the lowest),
'Xanax'/alprazolam Schedule IV and 'Zanaflex'/tizanidine isn't controlled, altho has slight tendency to be addictive.... Nothing like Nucynta.
 

KimsCorner

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That's interesting about the Lyrica because my doctor never said it was Schedule V. Now with the Xanax it's the complete opposite. When I was fired from the pain clinic, I was already taking Lyrica and Xanax. Both were prescribed by my PCP. The Zanaflex was prescribed by my PCP too, but that's because he's trying to help me manage my pain. Is it working?? The answer is NO it's not and my PCP knows it, I've known him for 19 years, whereas my former pain management specialist it was only 8 years. Even though I can no longer see him, I'm still thankfully because without him I would have never been diagnosed with Neuropathy and Fibromyalgia. After I was fired, my PCP wanted me to find another pain specialist, but I didn't want to because of the humiliation and embarrassment. However, both my PCP and I know the pain is becoming unbearable. I have an appointment with him tomorrow and I'm sure we will talk about the pain, but also the stress and anxiety I'm going through right now!! If it weren't for the fact that I've known him for 19 years, I would never dream of telling a doctor about what I'm stressed out about because it's a deeply personal experience at the moment. Wish me luck, okay??
 
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