Pain Meds? Which are the best?

[Mcsuperawesome]

So far the doctors haven't prescribed me to any (I was only diagnosed in May), but advil and the likes don't even take the edge off my pain. What are the ones that have worked best for you?

[xxBrittany]

My doctors have my on oxycontin, oxycodone, cymbalta, skelaxin, tylenol arthritis, salt supplements, multi vitamins and calcium, toporil, among lots of others.

Oxycontin is pretty addictive but let me tell you, it has worked absolute wonders for me.
Hope you get some help soon to help with your pain!

[Katherine]

codeine phosphate :)

[xxBrittany]

Eek. I am allergic to codeine. It makes me break out in hives.

[Johnna]

Oh goodness... advil for EDS is like putting a bandaid on a broken arm!

Almost every doctor you'll see will under-medicate. You should see a doctor that specializes in pain, ie a pain clinic or something of those sorts. It really helped me.

I currently take around 1500mg of vicodin as needed. At first I was afraid of taking so much but my doctor reassured me that it is a good amount for my severity of pain. Of course I didn't START at 1500, though... I'd be drooling on the floor XD

By the way, if you try vicodin and it makes you sick to your stomach, there is a way to counter it. Before you take it, make sure it is on a full stomach. Also, take a strong antihistamine like benadryl before taking the vicodin. In some people vicodin triggers something along the lines of the histamine receptors going nuts and it ends up making you vomit profusely. So yes, food and benadryl is a surefire way to avoid that.

I also had ER doctors put me on Percocet. It really helped the pain, but it made me terribly sick to my stomach. Apparently it doesn't do that to many people... I was just a lucky one.

I hope you find something that works for you. :)

<3 Johnna

[stacekins]

I"m not on pain meds anymore cause we can't find any that work. I've been on vicodin, fentanyl patches, Methadone, morphine, oxycontin (I'm allergic to it). At one point I was on fentayl, methadone and morphine all at the same time.

I've given up on pain meds, and my pain doc doesn't want to give them to me anymore either.

I hope you find something that works for you.

[xxBrittany]

Oh my gosh, Staci!
I am so sorry to hear that you cannot find anything that works for you due to the fact you've almost been on everything there is it seems like!


Sheesh. If you ever need anything you know I am always open to talk!
Take Care hun!

[xxBrittany]

And Johnna, you cracked me up about being on the 1500 vicodin at the very beginning and drooling to the floor.

It made me think of when I have to get my shoulder put back into socket when it comes out sometimes at the hospital and they put me on Ketameen and it makes me say really weird things and drool like I can't feel my lips. Recently when I was in there, I told my mom that a ceiling vent was a gorilla, there was a pineapple on the wall, my brother was 75 years old who is actually 12 and lastly, that we were in Africa.

^ Where in the heck did all that come from is what I want to know!

[Johnna]

Haha Brittany! XD

Sometimes when I take vicodin I talk too much. I don't get HIGH, per say, but I get VERY chatty. I also have a tendency to tell people my secrets -.-

I just recently told my friend Kerry my deepest secret while on vicodin ^^;;; Whoops! Glad she still likes me, haha!

[Mcsuperawesome]

Thanks so much guys.

My mother is trying to find some time.
Time is about all we're lacking in getting me meds.
I'm hoping to get several different things.
Maybe something for the overall acheness/pain everyday.
Maybe something for dislocations.
Something to get me to sleep at night.Sheesh I wake up at least twice a night because of pain.
Ideas would be nice.
So I have an idea of what to ask for when we somehow find the time to see a doctor.

[xxBrittany]

Shew. Girl. I feel your pain.
:(

I hope you get something that works for you soon doll! :)

If you ever need anything, I am ALWAYS here for you to chat or anything you need!

[Chiara]

I take
L-5-hydroxitriptofane
the name of the med itself is "Tript-OH" but i guess that changes from country to country.
that is quite mild, but they don't want me to take anything too strong...
Anyway it helps quite a lot.

[xxBrittany]

What did they prescribe that to you for Chiara? Like what kind of pain?
I'm going to look into it here in the States.

[SophieeBabessxo]

I got diagnoised in June, so they haven't done anything for me.
A joint and muscles speclis diagnoised me, the doctors didn't know, which was really annoying.
I'm now trying ibeprofen (excuse my horrible spelling)
We have to wait and see if this works

[xxBrittany]

Ouch. See Sophie, most of us are on high pain killers which can be VERY bad considering they are bad for you and they make us build a tolerance and soon we will have nothing to really work for us.

ANYWAYS- but as long as ibeprofen works for you...so be it! :)

Hope all goes well.

[SophieeBabessxo]

Its not working though :/
But mum is still making me keep on them. Pointless if you ask me.
I have tried a lot of stuff, but none of it seems to work :/

[katie]

oh man. im on like 7 different kinds of meds, that i still dont know the names of by heart. i had oxycodone, i remember that one.
i used to take vicodin but it made me sick... it might have just been a wrong dosage?
i take tramadol after surgeries, and if my pain gets super bad one day.
i take 1200 mg of ibuprofen every day... as well as vitamin c. melatonin or something like that? and two migraine medicines b/c i get chronic migrains all the time from eds.
tramadol works wonders for me, but its not a good day to day medicine, it can make you kind of loopy sometimes =P

[Chiara]

i was prescribed naprosyn 500 mg from my "family doctor" (i don't know whether this kind of doctor exists out of Italy)
(naprosyn = naproxene)
it is for rheumatic pain.

[SunsetParadise19]

Dilaudid 4mg works for me as well as 7.5/700mg of Vicodin

[Katherine]

Chiara we have 'family doctors' here in England too :)

paracetemol does nothing for me, i take para and codiene for mild pain and ive been prescribed codiene phosphate for really bad days which helps :)

[SophieeBabessxo]

I went to the doctors today and my mum asked about any pain med.
I'm not allowed anything with codine in it because 2 family members have had a bad reaction, so I'm stuck with nothing :/

[Katherine]

oh no that's not good, can they not give you something else?

[SophieeBabessxo]

Not at the moment cause I'm too young :/

[xxBrittany]

But if you are having trouble why can't they give you other medication? That's not right. I would suggest getting a second opinion.

[ReineDeLaSeine14]

Me too. Kids should not be in pain. :(

[SophieeBabessxo]

All i can have is paracitamol and ibeprofen, which sorta works, sometimes.

[Johnna]

Just recently the doctors put me on a small dose of methadone for the pain and it is AMAZING. It brings my pain down from an 8 to a 5 without making me high! I haven't been at a 5 without being high since I was 11 years old!

They also gave me morphine sulfate for breakthrough pain. It helps but it's not all that awesome.

[xxBrittany]

Johnna-
Thanks for letting us know about that...

I am going to talk to my doctor about that as well!

Thanks a bunch, darling! :)


Hope you are feeling better!


Sophie-
Did they ever put you on a new medicine?

[SophieeBabessxo]

For pain they didn't, they put me on something foe my sickness, but it made me feel more sick :/

[xxBrittany]

:( ugh. that stinks!

i feel like crap right now. my stupid knees keep blowing out, and my back is acting terrible.
i went to my geneticist today and he told me that he believes i have a pinched nerve, and if it's the one he is truly concerned about due to me not being able to feel much on my right leg, i might have to have surgery to correct it. I hope it's fixable WITHOUT surgery.

[Mcsuperawesome]

Oh no!


That's terrible!

I hope everything works out!


My hip has been acting up for a couple of days...
I'm going to the doctor soon to see if they can do anything. Probably not, but who knows...

[xxBrittany]

Awh. I hope they can do something for you! Good luck!

[ReineDeLaSeine14]

Britt I hope it's fixible without surgery too!

[xxBrittany]

Heh. I think it is fixable without surgery. We shall see.