New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/6/2008 4:51 PM (GMT -7)   
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!) blush
 
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
 

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 9/6/2008 7:33 PM (GMT -7)   
Tina:

Welcome to our little family! You have absolutely found the right place, and OF COURSE we will have you! smilewinkgrin As you said yourself, we are sad that any of us has to be here, including you, but I have found this forum to be a place full of support and encouragement and often much needed humor at just the right time. I hope you will find the same.

You have really been through the wringer! How awful to have all of this come from something that seems so innocuous as a vaccine! I've had that same vaccine myself, and I remember barely even paying attention to all the possible side effects because I just never dreamed any of them would actually happen! It must have been very scary to go through what you did! I am so glad you were able to have a period of recovery and it sounds as though you have a wonderful family.

I am afraid I don't know much about the pain pumps, but there are quite a few discussions here about them. A couple are on the first few pages I think, but you could search in the forum too. I know that a couple of members have gotten some remarkable relief from them, but also that there have been some recent recalls for some of the brands and models, so I would be sure you do a lot of research and have your doc and the company rep give you detailed information about recalls, etc. One other thing you'd want to consider is long term planning. From what I understand, there aren't many docs who are willing to manage pain pumps, so you might want to discuss what you should do if your doc were to move or retire or you were to move.

I hope your trial goes well! I'll be thinking of you on Tuesday. Do let us know how you are!

Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/6/2008 7:35 PM (GMT -7)   
Dear Tina,
I want to welcome you to the HW forum. You're right - this is the most supportive site I've found, too, and we're glad to have you join us - althought as you say, sorry you need to be here.

I don't know much about the pump except what I've read here, but there are some people who have it who I'm sure will chime in. But you searched the archives, which is a great source of information, although everyone is different.

I wish you all the best with your trial, and look forward to hearing how it goes.

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 9/6/2008 8:46 PM (GMT -7)   
Welcome Tina, sure wish it was under better circumstance, other than chronic pain. There are lots and lots of nice people here.
Lots of soft hugz to you! oh good luck with the trial pain pump and keep us posted as to how it goes, as that'll probably be something in my future...
************************
* Asthma
* Allergies
* Osteoarthritis
* Spinal Stenosis
* Mild DDD
* Enlarged
Pituitary Gland
* Fibromyalgia
*************************

Patient: "I always see spots with my eyes"
Doctor: "Didn't the new glasses help?"
Patient "Yes, now I see the spots clearer"


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/7/2008 6:34 AM (GMT -7)   

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  tongue --Tina


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 9/7/2008 10:21 AM (GMT -7)   
Welcome Tina! I'm too am so very glad you have joined our family...our little oasis in a sea of pain. You are an amazing woman...do you now that? To have survived this far with all the misery you've gone thru is truly an outstanding feat in itself.

I also don't know much about pain pumps but sure would like to know how things go when you get yours. Your muscle/joint pain? Is that part of your original diagnosis? or did I miss something? I have fibromyalgia, among other things, which is basically muscle pain. Is that what yours is from? Come on over to the fibromyalgia forum and visit. Even if it's not fibro you may find some great ideas on helping to ease those aching muscles.

Gentle hugs,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/7/2008 11:46 AM (GMT -7)   

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  tongue Again, thanks for the welcome and the invite over to the FM forum. --Tina


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 9/7/2008 7:59 PM (GMT -7)   
Tina,

Welcome to the Chronic Pain forum. Looks like you'll fit in nicely as one of those supportive and nice people you talk about. Keep posting. I look forward to getting to know you more and more over the weeks and months.

God's blessings and gentle hugs as well,

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 9/11/2008 1:00 PM (GMT -7)   
     
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 yeah
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 11:20 AM (GMT -7)
There are a total of 2,732,610 posts in 301,037 threads.
View Active Threads


Who's Online
This forum has 151195 registered members. Please welcome our newest member, Islandclub1.
264 Guest(s), 10 Registered Member(s) are currently online.  Details
Katie95, PeteZa, PDL17, Lymepilot, Gretchen1, dacarte3, astroman, mtnwife, dbwilco, Graytech


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer