diagnosed and don't know what to do now, 23F

[sunkacola]

Good luck Ian.
Took me 7 months of hell , something I won’t ever use again. I do agree They didn’t help after a few months so we just kept upping them each month.

That is so often the problem! I have had something work for me for 3 months, then stop working, whereupon the doc raises the dosage, and then the side effects start.
Or, it gets raised a couple of times, and then I realize it's probably not ever going to work unless it keeps getting raised every few months, which means it's not doing my body any good, to say the least.

Medications for pain are just not really suitable, I am starting to think, for fibromyalgia. Because they are all designed to work on something that's injured or damaged in some way, or has a disease such as arthritis. Fibro is different. I think that the researchers who are saying fibromyalgia is a problem in the synapses of the brain are on the right track. Our brains are sending pain signals when there's no actual physical reason for the pain. which is why doctors will think we are making it up or exaggerating, and which is also why (IMO) most if not all pain medications don't work for us, or don't work well.

If pain medication worked for fibromyalgia, then drugs like amitriptyline or cannabis would probably have no effect, because those are medications that only influence the brain. Of course, that kind of medication helps some people, but doesn't work for everyone either, and for some has unpleasant side effects.

If they could only isolate what it is in the brain that causes it to send high pain signals when there's nothing actually wrong with that body part, then maybe they could come up with something that would help.
Of course, we also have all these other things going on, like brain fog and fatigue and nausea. But I am thinking these days that all of those are by-products of being in so much pain so much of the time. It saps a person's energy, makes it hard to think, disturbs sleep, and certainly can also cause nausea. All of those things can in turn lead to other physical problems. And then it also leads to depression because of the loss of the lives we want to live and used to live, the shame some people sadly feel, the frustration with getting no help or empathy a lot of the time, and then the depression and frustration make everything else worse, creating a vicious circle.

I just hope they one day come up with some solutions for those of us who live with this.

 

[Ian waxman]

Good luck Ian.
Took me 7 months of hell , something I won’t ever use again. I do agree They didn’t help after a few months so we just kept upping them each month.

I started on 20.felt great and slowly the pain crept back.told the doctor,they put me on 37.5.same again ok for a while then bang the pain came back.they upped it to 50.same scenario.they put me on 62.5 and yes the same scenario again.i was at my wits end.went to the doc and told them they aren’t working.i said i want to wean off them.she’s put me on duloxetine but the withdrawal effects are hell,banging headaches,sick as a dog,stomach ache,don’t feel like getting off the sofa.i’m also on tramadol which she’s told me not to take but I’ve been taking two.its just too much without a bit of pain relief.i never thought the side effects would be this horrendous.going to the pain clinic next week so will see what they say.i can honestly say if you’ve got fybro your in it for life cos the symptoms I’ve got now are exactly the same as when I first started with it.totally pissed off but will battle on.be glad when I’m rid of the fentanyl.pure evil which they should never have administered!