My intro

I found this site as I was searching for info re: drug pumps (more on that in a minute).  I have learned so much from reading through the archives.  Out of any forum that I've found on the web, this one seems the most supportive, friendly, etc.  So, I am hoping to join in (if you'll have me!)

It would take a year to share my story but I'll try to keep it as brief as possible.  I'm 35 years old, married with six children (all boys).  At age 20, I received the Hep B Vaccine in nursing school and became very ill.  Daily fevers, tachycardia, widespread muscle and joint pain, HORRIBLE fatigue and on the list went.  I had to take a leave of absence from work and school.  After about six months, I recovered.  I went on to get married and have six children.  Other than migraines, I was in pretty good health all those years.  Well, the "monster" returned in my last pregnancy (I was about 3 months pregnant).  I gave birth to my last child in Jan, 2004 and have been very ill ever since. 

My official diagnosis is POTS (Postural Orthostatic Tachycardia Syndrome)/Dysautonomia along with Chronic Pain (widespread muscle/joint pain, severe carpal tunnel syndrome, migraines, severe thoracic back pain and so forth).  I've been on every medication known to man, in about every strength possible (at least that's what it feels like!). 

My doctor recommended a drug pump about a year ago.  It took me a long time to decide, but I finally decided to have the trial.  I go in on Tuesday.  Right now, I'm on the following oral meds: MS Contin 480mg/day, Dilaudid 8mg tabs for BTP (up to 4 a day), Soma - and then a variety of heart meds, etc.  I was on the 1200mcgs of Actiq for breakthrough pain; they worked better than the Dilaudid BUT caused my teeth to start having serious issues, no matter how diligent I was about brushing and such.  But that's another story!

Anyway, that's me in a nutshell :)  I look forward to learning and sharing more with you all.  I'm sorry that we have to be here BUT I'm glad there is such a supportive forum.  --Tina

Thanks for the welcome, everybody.  I really appreciate it.  I think the hardest thing has been this "waiting" period.  There are just so many unknowns.  I'm not usually like this; I usually just take things as they come.  I am also trying to have realistic expectations; in all honesty, I'd be happy with a 50% pain reduction and to reduce the side effects from the oral meds (mostly GI stuff). 

I'll probably post again pre-trial (while stressing about going in on Tuesday); but I definitely will let you all know how the trial goes.  I think the more shared information that we have - the better. 

But, I want to thank you for the welcome into your family  --Tina

Chutzie,

Thanks for the welcome Fibro IS one of my "official diagnosis", along with the other stuff (carpal tunnel, migraines and on the list goes).  I have about every FM symptom there is - all the tender points (and more, I think!), the sleep issues, etc.  I absolutely know how debilitating FM can be and I know it is very real.  I guess the reason I've gotten away from "saying" it is concerning me getting this drug pump.  My lovely insurance wouldn't cover me getting the pump with a FM diagnosis.  They said nobody gets a drug pump for FM.  (Don't get me started...).

So, my doctors had to be creative and come up with other ways of wording my conditions - myofascial pain syndrome (which is basically like FM...so I don't know what the difference is!); thoracic/low back pain; complex regional pain syndrome and so forth.  All of this so that the insurance would cover it.  For some reason, people hear "fibromyalgia" and (unless you actually have it) - they think "aching muscles, big deal".  It is very frustrating; for awhile, I wanted to change the world and their perception of FM and Chronic Pain.  But I just don't have the energy to do it....  Maybe one day. 

I don't know why there is such a basis about people with FM.  While I don't think narcotics should be the only solution, they help with many FM patients.  I hate to hear stories of people that have doctors that won't even give them an RX of Vicoden, Norco, etc.  VERY frustrating.

So....that's a very LONG answer to YES, I do have fibro, in addition to other things  Again, thanks for the welcome and the invite over to the FM forum. --Tina

Hi tina

I also wanted to welcome you to the sight, everyone here is very supportive and kind and giving. I think you will like it. Regarding the pain pump I have one and it took almost 2 years to titrate down from my orals, I was on a lot! I also had a back surgery in the middle of it so that didn't help. By now I'm guessing you've had your test. Mine went great, I hadn't felt so good in nearly a decade, it didn't last long of course but long enough to give me hope and make the decision to get one. I finally reached a point about 3 months ago where I was feeling little or no pain. It was so wonderful. Things have changed lately put not because of the pump. I highly recommend it though. It might take a while but when it works it is just awesome. Good luck with yours if you get one. Be prepared to spend the time it takes to tirtate your orals and the pump medication to the right point and I hope it will all be worth it for you too. By the way my pump is a Meditronic (I think that's how you spell it) and I get it checked monthly at my PC appt. It's very easy to have it read, adjusted and even filled.

Best of luck to you and once again welcome to the site.

toritoo