Hello to all of you with EM , undoubtedly a few more in number than last I was on the site! Thanks to those who have checked up on me,after my holiday seemed to be lasting rather a long time. I have been fairly steady with EM symptoms until my sister became ill( not related to EM ) and things took a bad turn for her. I just didn’t have the physical or emotional strength to " check in " to the world of EM and have anything positive or useful to say !
I am feeling more stable , but gosh isn’t stress a killer trigger for EM ! I overdid things on all fronts and really , really managed to rocket out of a holding pattern into whirlwind of pain and misery .
I have had to add Targen and Endone to my already lengthy list of medications in order to get back to some sort of reasonable activity levels . Hate to think what this is doing to my liver, but like that symptoms masked!!! Only thing is that I have intermittent tinnitus now , and wonder if it could be the meds or mix there of !
Summer is coming so just as well things are settling, air conditioning and swimming pool time!
Wishing you all a peaceful and pain free time , Tizzy
I'm so glad to have you back!!
I am sorry you have been going through so much lately. Not much of a vacation. I'm glad you have your symptoms under some sort of control again. I am not familiar with Targen and Endone.
I understand you not being able to come on the site because you weren't doing well but I hope it wasn't because you thought you had nothing positive to give us. This was our turn to give to you! You have always been so uplifting and as much as I hope you never need it , if you did I would hope I could offer you a little uplifting myself as would many others here. Just know we are here for you too :)
I hope you sister is doing better. It's so good to have you back.
Take care,
Alina
HURRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!! Great to see you Miss Tizzy lol! We have sorely missed your compassionate contributions and steadfast support. As Alina says ,remember we are here for you too - works both ways ok ;).
Intermittent tinnitus - Opps........think its ANS dysfunction time - I have it too. Sends one crazy.Nothing for it Tizzy, apart from trying to interject/break cycle ie: saying same word over/over again, or listening to radio.
Targin/endone = Oxycondone. I have been on this for years. I like this medication for breakthrough pain. I take regular doses every 8 hrs and extra 10mg in between as/when needed. They claim opiates dont work in EM. Hmmmm, I think this as part of the polypharmacy package Oxycondone definitely has a place.
Biggest hug
Your dear sister is in all our thoughts my friend
God bless
mads x
Hi tizzy
I'm glad you are back. Interesting that you are taking targin and endone. So am I, but not for EM. I take them for chronic daily migraine. I take 5mg targin X 4 daily =20 mgs a day in total. And i have 5mg endne for breakthrough migraine -although it constipates me too much to take it as much as I wish I could for migraine - on one hand. On the other, i hate being on these meds because they keep me tied to doctor's APPOINTMENTS - eg I have to get to the doctor this week to get a script for this month's supply and the fact that I'm really struggling health wise at the momrnt and that the last place I want to be, is sitting upright in a doctors waiting room.
And then there is such a social stigma attached to these meds - these opiate meds do help but they do raise eyebrows if you are taking them - I have found. Some people, the occasional doctor included, can be quite judgemental about it. I just tell myself they aren't living with my pain.
I've been dealing with tinnitus in my ears since April. Although it doesn't feel like it's in my ears. The noise feels deeper in the brain and is like a high weak ringing sound which is sort of 'fuzzy' in that it's like a radio station not tuned correctly. It dissapearred yesterday and the day before that but came back this morning. Butterflies and incorrectly tuned radio stations, we all come up with the most extraordinary descriptions for things.
One of my new descriptions for one type of EM is like I've rubbed minty toothpaste on my body - that icy, hot feel of mint tooth paste.
I totally agree with Alina, about being able to share the bad and the good. But I also understand becoming so overwhelmed that it comes down to using all our resources dealing with what we need to.
Anyway, I am glad you are back.
Blue
Hi tizzy,
I don't believe these meds have caused my tinnitus. I am a chronic migraineur and tinnitus can come with that territory. Plus it runs in the family.
I answered your other post and I probably have repeated myself about the pain meds. Sorry if I have. It's a habit of mine, either completely forgetting to tell someone something or repeating myself ad infinitum.
Blue
Dear Blue,
Sorry you getting tinnitus too. Maybe we need to do next spotlight on it ;).
Social stigma re opiates - I agree. I am also on a methadone pain management programme for my CRPS, so go figure the look i get from the pharmacist delivery. I get two massive plastic carry outs full of stuff to boot. I find myself explaining why i need it. Oh .......if they shook us we would rattle lol!
God bless
mads
Interesting. I have intermittent tinnitus too. I have for a few years. My doctors say it’s pretty common although I think it’s just too much because I have do many symptoms they can’t a dress them all! I also get intermittent feelings of bugs in my ear where I keep rubbing it because it tickles and is anoying. When this happens it usually sticks around for a few weeks then just goes away on its own. Definitely enough to put me in the nut house! I take morphine for pain and have for about 4 years. I am not concerned at all about the stigma. I no longer care about how I look or what others think of me. If I have to take hard meds or wear wet clothes or flip flops in the winter it really doesn’t matter anymore. Heck i have had to go to my doctors appointment in a swim suit and wrap my feet in cold wet towels in his office! I only care about being in as little pain as possible.
Take care,
Alina
Welcome back Tizzy - good to see you online again!
Oh mads, i can only imagine the looks you must get about the methadone as it is a common misunderstanding that it is only used heroin addicts for treatment for their addictions.
It raises two issues in my mind - a public that thinks that way.
but also the issue that addiction is a moral question? really as i see it, addiction is a disease - probably a psychiatric one. There is so little sympathy for addicts - drug addicts, alcoholics, shopping addicts etc.. It is so easy to demonize addicts. I am so glad I have avoided that problem. Addiction does run in my family. And although i suffered as a child of an addict I have come to see that the addiction was a symptomof a greater problem my parent had, along with the genetic predisposition to addiction thrown in. I am glad I did not need opiates until I was old enough to understand that anaesthetising emotional pain does not work, but rather can destroy the life of an addict and those around them.
Auto correct is driving me crazy!
blue
Okay, I thought that opiates had no impact really on my EM pain. I was woken suddenly about two hours ago and skin started to burn quite intensely a few minutes after waking. I did wake with migraine. I have found the breakthrough endone I took for the migraine did not help the migraine this time ( it happens);but it seems to be helping to decrease the intensity of the burning pains.
Blue.