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ofleaves

Boring medical waffling starts here (feel free to skip over). Right, so my doc is writing to my EDS consultant (a hit-and-miss rheumatologist) for advice on painkillers + peeps with EDS and as many recurrent dislocations as me in whom opioids don't appear effective enough wrt pain control. Fair enough. In the meantime he's got me on a higher dose of fentanyl to see if kicking it up works or not (brb sleeping for the next week etc). The pictured med is a new one to me, which he felt would help with my anxiety attacks - it's technically an antipsychotic but it's used to get severely anxious peeps like me to chill the eff out when they're panicking. He felt it was better than sticking me on benzos because it isn't addictive and at the tiny dose I'm on it has very few side effects. I'm a bit concerned personally but also desperate for some help with my anxiety and the weird OCD stuff I've started doing (which is really annoying both J & C), so I've decided I'll give it a go and if it doesn't work or the side effects are just terrible, I'll chuck it out the proverbial window. I think that's everything from my appointment, so now I'm going to doze while GW2 installs... #zzzzz #meds #medicalstuff #boringmedicalstuff #pleaseignore #painkillers #doctorsvisit #chronicpain #chronicillness #naptime

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emmajopasnyt : I hope your EDS consultant has proper input on your situation! Benzos are such fucking crap - pardon my language - so it's great there is an alternative to them. Anxiety attacks are a real burden to live with, I know from my own experience. My anxiety levels are better when my pain management is working at least a bit, there's definitely a possible connection there. I've had quite harsh OCD shit as well, but it's better nowadays after thinking about them and just trying to be more conscious of my behaviour and try to find the triggering situations. I'm sure you'll be better when your pain is less severe. ♥ Also wanted to mention my experience with Lyrica after seeing @jessicaalice1 commenting about it. I was on 300mg twice a day for two years (for a nerve damage I got during a surgery and the terrible pain that followed) that I was ok for some time but as time went by Lyrica caused me symptoms of the MS disease and was one of the reasons for my paralysis from the waist down ladt November. After quitting it I got rid of hyper reflexes, trouble urinating, trouble with speech, ataxia, anxiety, memory problems and hormonal abnormalities and weight gain and weight not going down no matter what just to mention some. So it can also do damage. Pfizer, the company that makes Lyrica have had to pay huge fines in the US for false marketing and false information about research about it's effectiveness. But to some it is of help. It's a really trendy and widely lobbed drug so it's described a lot even though there's little to nothing scientific proof of it helping with as many illneses it's described for.

jessicaalice1 : @emmajopasnyt i can relate to that completely , im in the process of changing my drugs due to side effects. It has got to a point where i have trouble with basic reflexes , no perception of space and i find it hard to speak or create sentances. For a short term purpose it worked for me but long term it has horrible effects

emmajopasnyt : @jessicaalice1 sounds familiar. I'm sorry you've had a bad experience with it as well. But at least for me the side effects went immediately away as I quit it and I'm back to my wobbly but "normal" self again. :)

ofleaves : @emmajopasnyt yikes, I'm sorry you had such a bad time with Lyrica :( I've been on it for just over a year now, same dose as you describe. Honestly, for me, it's been like a wonder drug - without it my fibromyalgia pain is so severe I just can't cope with it. I do have memory problems, am ridiculously clumsy, can't balance, get numbness in places, fall over every day - but I've always had those 'symptoms' of EDS (and dysautonomia) so I can't say they're because of the Lyrica or not... Basically right now it's helping more than hindering, but if that changes it'll be yet another med chucked on the 'doesn't work!' pile! I had no idea Lyrica could cause MS symptoms though, that's pretty concerning :(

ofleaves : @librapoe that would make a lot of sense :( I'm sorry you've experienced something similar - it seriously sucks.

ofleaves : @jessicaalice1 yeah, I've been on Lyrica just over a year! I find if I miss a dose by accident I definitely notice my mood nosedives and I panic a lot more - I'm on two antidepressants as well plus a beta blocker for anxiety symptoms, but I still get horrible panic attacks... here's hoping this helps a bit!

jessicaalice1 : I am also on 2 antidepressants and have the same exact problem. Let me know how it goes

emmajopasnyt : Yes it's great for some people and I'm so glad to hear it's helping you! It did help me too in the beginning but as the dose was tapered down I noticed that the nerve damage had to my great great relief healed by itself (I knew it could happen and was of course hoping it would but couldn't be sure because of the medication). Had the neural pain come back I would have stayed on Lyrica probably. I've had my EDS symptoms always as well, on and off Lyrica and didn't notice any difference in my EDS pain in my joints so it didn't work for that. But it could have. It seems to be different for everyone. In the end of last autumn I could barely walk, the ataxia was so bad and my mom was about to drag me to see a neurologist because of the alarming symptoms but then I lost me legs and got to meet a whole bunch of neurologists during the month long hospital stay. Haha. I hope you get only help from it and no side effects, but at least there's something to look into if there comes some changes to your general wellbeing. Oh and I got awful sweating, anxiety and paranoia if I forgot to take one dose of it. It did cause enormously bad sweating anyway as well and fucked up my liquid balance totally. Nurses were so baffled when I was in the hospital and they needed to keep book of my liquid intake and outage and I was seriously pissing a lot more than I should have been. But that too got totally back to normal, so that's good really good thing, that it doesn't necessarily cause permanent damage.

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ofleaves

Up stupidly early to get to the doctor's this morning. Concerned that Fentanyl is just simply not working, so I'm getting side effects without any pain control... I'm also sick to death of the panic attacks that I keep having, ugh. Hopefully the doc has some ideas for alternative painkillers... #goodmorning #wonkyankles #doctorsvisit #boringmedicalstuff

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ofleaves : @colleendavis thank you so much for your kindness 

ofleaves : @emmajopasnyt thinking of you right back!  I hope he has some ideas - I should really be seeing a pain specialist instead of my GP, but the last time I asked the wait was around 3 years for the initial assessment... I can't keep my head above water as it is right now, so I can't wait that long!

emmajopasnyt : Oh shit that's a ridiculously long wait! Hoping your GP has good ideas. These things are so frustrating, especially if it's all side effects and no help. Hoping for the best! Hugs!

louisewidenborg : I have trying fentanyl few months ago, but its not working on me to. I was in a pain hell in this week. Now i take 400 mg tramadol, 60 mg contalgin (longworking morphine tablets) and up to 60 morphine dak (working after 15-30 minuts) I hope you find something theres good to you!

louisewidenborg : @ofleaves

louisewidenborg : *60 - 60 mg. Haha 60 tablets. I think i was dead so ;)

ofleaves : I'm up to 50mcg fentanyl patches now, I've been on them around a month - I'm finding they work (not great but enough that I can tell) for the first day or so, and then I just feel awful for the next 48 hours until I change the patch to a new one. I'm also on Lyrica (pregabalin) 600mg/day for fibro and nerve pain, 60mg codeine every 4 hours, 1gm paracetamol every 4 hours. I'm convinced this pain is sending me crazy (I have really bad stabbing, throbbing, burning deep pain in both hips alongside my more usual post-dislocation/subluxation pain, which is my main problem)! I'm so sorry you're having a bad week and that you're going through the same problem with fentanyl :(

ofleaves : @louisewidenborg see above!

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