Mike~ Any suggestions - TJ

[Guest guest]

I have indeed done some checking on adverse reactions and interactions of the

medications yes. You are definitely correct- most often the pharmacists etc to

a poor job of informing patients........ thankfully the Rite-Aid, that I do go

through and interact with online- does let me know the interactions when I input

a new script. But they have made their share of mistakes as well.

Second question- definitely generalized , all over pain........ but more painful

in some areas than others- such as the legs - due to muscle spasms , cramps and

the 3 surgeries that I had on them. Joints- headache, you name it, it

hurts........ then colitis/ulcer to top that all off........ I just began

getting frustrated that taking all those medications seemed endless and not

really helping anymore- but they had helped somewhat in the past.......... I

realize there are bad days and good days with EDS- mostly bad but we all get

through them....... normally- I just take the meds and don't complain but am

glad I spoke up this time to the dr anyhow as he did indeed change some of my

medications........ now , just to see if they help enough to let me get some

decent sleep.

I have tried various other techniques and some of those did work for a while in

the past....... but am now at a point that it will have to be mostly mind work-

or something very delicate- touch me----- instant bruise.......... I honestly

think they should invent rubber body suits for protection of an EDS'r.

I am the only EDS patient this practice has ever heard of so the doctor is

trying his hardest to do what is best or at least help make the days/nights not

so miserable.... He is really great- it was indeed the secretaries I should have

grrrrrrrrrrrrrrrr'd. He never denied stating what I had stated to the

secretary............

I am on all the medications yet but changed a few he did........ he replaced the

avinza with methadone- 3 x a day- and upped dosage of the Lortab with extra

acetaminophen in it........ oh and gave me samples of protonix which helped me

best to begin with but my insurance will not pay for protonix so he prescribed

prilosec..... prilosec is a give and take for me- some days it works- some days

it doesnt.......... but protonix was like a miracle pill for me- he was even

nice enough to tell me to call back in a month and if he could get me some more

samples he would. So- guess - I will find out soon if this medicinal change

will help..........

The ride out and back etc was too much for me- had intended on responding sooner

but was too sore.... I guess the sleep deprivation and colitis/ulcer attacks

have really been more than I can handle as I nearly passed out twice in their

office.

Crossing fingers ( then again I better not- they stay that way if I do lol )

that the new meds do some changes! Thanks much for the info........... TJ

Beings my pain level isnt really changing- with these meds below:

Avinza Lortab WellButrin xanax lomotil and prilosec

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My first question given the list of meds is have you checked them in

detail for adverse reactions and interactions? If you haven't, let

me know if you want me to check them for you. As I have stated many

times, doctors, pharmacists and pharmaceutical companies do a

totally inadequate job of informing patients on this point.

My second question is about your pain in general. Is it systemic

pain? Do you have generalized, all over pain? Or is it specific

pain, like in joints, headache, etc.? Depending on the type and

location of the pain, we might be able to come up with some

suggestions for you to try since what you have been doing doesn't

seem to be working.

I don't " push " some of the alternative stuff I post about because I

have a vested interest in it. I'm not trying to sell a book or

market a class or get royalties off of some procedure or formula.

I " push " them because first hand experience has conclusively proven

to me that they work, that they get results. I " push " them because

I am trying to give people on the list some tools that they can use

to start taking control back for their own health. I say that they

don't cure EDS, and they don't. But they can sometimes " cure " some

of the symptoms that go along with EDS. Barb and I both still EDS,

but her leg problem is fixed and I simply do not get headaches

anymore. And so on.

To learn more about EDS, visit our website: http://www.ceda.ca

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