I've been on Lyrica since March 2010. Because I have a chemical sensitivity I am sensitive to most drugs and although they make me ill, it also means I don't need to take a lot to get any positive effect.
So, back in 2010 my specialist gave me a long scrip of 25mg and told me to titrate it up slowly and get back to him in 6 months. So I did and it took me the whole 6 months to get to 75mg at night with nothing in the morning. And after almost 50 years of some serious neuropathic pain, I had been able to maintain a roughly 40% drop in neuro pain.
I told him this and he said that I should try to add another 75mg in the morning to see what will happen. I tried over the next 4/5 months and all it did was make me sick. So immediately stopped and went back to the 75 at night only and stayed there until Aug last year.
Okay, so last year I was feeling ill often in the same manner that I normally feel when drugs are making me sick. So I thought I'd try to drop off the lyrica and see if I still had some neuro pain. I did this and actually found that I had a big fat 0 response to stopping the Lyrica. Nothing happened and nothing changed. So that meant that it did its job and help to retrain my dull grey matter into thinking something else instead of trying to hurt me.
Unfortunately however, it only lasted 5 months. Then it all came flooding back. And nope, nothing happened at that time to warrant a return to the neuro pain. I just got out of bed one morning and it felt like I had meningitis or whatever it is that gives you a painful stiff neck. Only difference is, that painful stiffness traveled the length of my spine. First time I had this in 5 months, so I was a little disappointed, but to be honest, I wasn't bothered much by it.
You see, I had accepted my lot for this life decades ago and I know I'll die suffering some pretty serious pain from here till they nail the lid shut on the coffin. And that's okay.
But wait, there was a bonus outcome to this exercise. I ended up only needing to take 50mg at night and not 75mg. I tried the 75 and all it did was make me feel ill, so I went back to the 50 and I am now back to where I was prior to stopping the Lyrica in the first place.
Now remember this is just the neuro pain. The pain I suffer in the left side of my neck from the trapped nerve root on the left side of C4, keeps me living in that space just prior to a full blown migraine headache. Not only that, it translates or refers pain down my neck into my shoulder and arm, plus the left side of my chest. It goes into my jaw and the left side of my head. For this I take p. forte. It has a minimal effect, but at least eases it for about an hour after taking it.
I have a constant screaming headache, neck ache, shoulder ache, back ache and even my wallet aches. Sheesh!
The worst part about this, is the pain level in these areas never goes below 8 out of 10. It can become quite distressing sometimes, but that is when it has worn me down and I need to go to bed. If a migraine does turn up, I can't take anymore drugs for it. All I can do is lock myself in my darkened room, get into bed and lie there with a pillow over my head. If it is at night when I want to try and sleep, I also put an ice pack under my neck and freeze it, then turn onto my side and put the ice pack on the left side of my neck and hold it there with the pillow, then I eventually go off to sleep. This seems to work by correcting the flair up migraine and it takes me back to where I would have been a week prior with all the normal pain levels. I can't do this as soon as the migraine starts. I have to wait a couple of days until it is really bad, then the ice pack works well.
For all of you who think you would like to play around with the doses of Lyrica, because you think you might not need it, I would sit down with your specialist/GP and just have a talk with them. Be forthright about it. In other words, know your body and how it reacts to these drugs, document it, then sit there with the physician and speak to them as though you are the expert on you and you are discussing a treatment plan with one of your work partners. If you can actually provide clinicians with good valuable information, PLUS you can sit there and confidently speak about what you want to try, but you are also humble enough to accept disagreement, then you will develop a good relationship with the doctor. There is nothing worse for these medical people than when patients come in and say that it hurts there doc. Fix it! They are not God and they cannot work miracles. It is equally up to us develop a good self management plan to keep our pain under control.
Oh and one last thing. The most effective drug of all that will actually help you more than anything else, is EXERCISE! Yep, good old exercise. Doesn't matter what your disability is, even if you are bed or chair ridden, there are exercises you can do that will help make you a bit more elastic and liquid, instead of being a stiff hardened body that feels like it will snap in half if you move too much. They don't work over night and you do have to keep them up probably forever, but they will help you. I get no pain relief from exercises, but I get better movement and less stiffness and soreness from doing jobs I want to get done.
I hope this helps a bit for some of you!
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
My doc has told me to find my own level. Within a range. Max of 150mg (2*75mg) per day. He wants me on the least I can use that gets me the benefits. I couldn’t take it twice a day, the groin pain was far too much. So cutting back to just a night dose helped big time. Same total dosage, but just once a day. I was rather surprised by this.
I have both the 75mg and the 25mg so I can adjust. As you all know its not a day to day med. So i need to give each level 2-3 weeks to settle and see what the effects are. So I am slowly going down, if I can sleep ok then I will drop another 25mg in a few weeks. You get the idea.
My doc is across all of this and is perfectly fine with it. As long as I go down and not over the 150mg. If I need that we will discuss again.
I agree with Peter, exercise is very important. However at the moment I am in a catch 22. I am in desperate need of new sneakers. Don’t have the funds for it for another few months, and the sneakers fall lower on my priority list than the new glasses I am in need of. Plus being that time fo year when car rego and RACV fall due. And I will have to try on a lot of sneakers to find the right ones. So right now walking is creating more pain and migraines, which I have no meds for (outside panadol and ibuprophen) So I am avoiding the walking part.
In place I am pottering around the yard, so I am getting fresh air. Its just very slow going all around at the moment.
Like Peter, I have accepted I will be in pain until I am six feet deep, staring up. Mostly I manage, as long as I can sleep. This is the single most important thng to me. I can cope if I can sleep. Everything else is finding a balance or a stable point. Which is what I am in the process of finding. The lowest dose that gets me the benefits with the least amount of side effects.
Good to hear that you are working with your GP in relation to your medication I apologise for checking up but all too often people do self adjust without consulting those who hold the best interest of their patients at heart.
I rattle when I walk but the amount of medication I’m on helps me to live my life a lot better than without medication ,I’m due to have my nerves burnt again I think ,I see my pain physician on the 2nd August to see I’m getting about 3-4 months help after that the SSDD starts coming back I’m luckier than some I’m not allergic to anything except dettol .
It’s nice to know that there are others out there in the real world so please keep messaging even if just to chat to help reduce your threshold to managble levels .
as long as I wake up alive I'm happy
Because it could be worse