OH MY GOD HELP ME I'M IN AGONY I FEEL LIKE I'M DYING AHHHHHHHHH!!
Sorry, I just had to. Today has been a bit rubbish, I had physio this morning and it looks like I may have gone backwards a little since my last appointment and my new therapist isn't as good as the old one. The weather has had worse mood swings than I have and to top it all off I ruined tea :(
BUT... I have bought malteasers and popcorn ready for a pyjama day of films with my man tomorrow so all will be well. Also tomorrow will be the last day I will ever take pregabalin ever ever ever woooo! Then I have to wait two weeks until I next see my GP when we can discuss what to try next, I think I want to try amatryptaline as I've heard mostly good things about it but I'm still researching what I can so hopefully I don't end up on something as bad as lyrica. I can already tell the horrible side effects I did have calming down, my appetite is no where near as bad as it was and I feel far more alert and less foggy. However the withdrawal symptoms of weening off have been pretty annoying, my skin has been awfully itchy and I've been a million times more dramatic than usual (comedy inspired by my dad there!).
Yesterday was my first bike ride in a week and a half and I managed twice as far as usual so at least that's progress!!! I have been thinking about setting up some kind of fund raising for research into fibromyalgia but I have really been struggling on ideas for fund raising seen as theres no way I'll be throwing myself off the top of anything or running a marathon something like that. I was thinking maybe to try and build up my strength in cycling so I could do some kind of sponsored bike ride. Any other suggestions are most welcome as long as they are fibro friendly :D
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Sorry to hear you are having a bad time of it. I'm on Amitriptyline and I wouldn't say it's a very nice drug and I'm having a real battle about my feelings over it. What I would say to you, if you decide to try it, is stick with it and the potentially not nice side effects until you reach the dosage that is right for you. Give it a real good go. Like I said, I've had a real battle with it. My main problems were the zombie like affect it had on me for a few days when I increased my dosage and a horrible "have to go to bed NOW" feeling it gave me an hour or so after taking it, yet not sleeping great. I think it can also make me feel anxious for no reason at all. I also have felt like a bit of a social recluse for a while as I couldn't stay awake late at all! I'm still undecided as to whether it has made my fatigue worse or if I'm just not having a good time of it with fibro symptoms. But I finally plucked up the courage to up my dosage again (couldn't find a 'convenient time' as it literally turned me into a zombie for 4 days last time) and I've reached my suitable dose, which is only a mere 30mg. I am sleeping all night, amazing! And strangely I seem to be tolerating it a heck of a lot better than the lower doses. Much of what I mentioned above doesn't seem to be such an issue now (touch wood-I've been on this dose for just over a week now). I don't understand that part but it's good. Pregabalin was actually my GP's next step so I'll be interested to read more about the affect it had on you. I've read some horrible things though so I think that's why I've stuck with Amitriptyline. A couple of weeks ago I was desperate to get off the stuff! But I'm kinda glad I've stuck with it and I'll see how I go over the next few weeks. I hope you find a medication better suited to you. Amitriptyline seems to affect people really differently. I know a couple of people who can't even function when taking 10mg, yet it seems to be working for me (for now anyway). It's worth a try but be warned it's a bit of a bumpy roller coaster before seeing any benefit.
ReplyDeleteSorry, I forgot to say I find it does nothing for my pain. It just helps me sleep better. If only there was a wonder drug that did both!
DeleteYes unfortunately no wonder drugs, but sleeping is an important step.
ReplyDeleteAs far as fundraising you need to do something really simple that you can manage and not put extra stress on yourself. In Australia we have THe Big Morning Tea, once a year (for cancer) and people pay a gold coin or more to drop in and have tea and cake. I did it one morning at the craft session as it was a captive audience and raised a good amount.