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Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/6/2008 12:17 AM (GMT -7)   
Pamela,
 
I've seen you mention several times in your posts about your pain doc; I can sense your frustration w/ him and it made me think of all the horrendous experience I've gone through to get to the great team of doctors I have now.  I  could be here all night telling you stories of "bad doctor" experience.  mad I'm just thankful that I'm where I am at now, though.
 
I know some people live where there are only one or two doctors.  But I hate to hear people dealing with doctors that don't understand chronic pain, or that aren't willing to explore different options (treatments, meds, etc).  When we lived in CO, I had to drive (actually have my husband drive me, because I hardly drive) almost two hours to my pain doctor; for awhile, I was going every week.  I had to deal with snow, getting child-care for six kids, etc.  It was a nightmare BUT it was worth it to have a compassionate, smart doctor that was an expert in his field. 
 
It is easy sometimes to just settle into a "comfort" zone w/ the docs we have.  Believe me, I know.  But I would just encourage you, if there is any way possible, to explore a consult w/ another doctor.  I know you said your doctor keeps saying that the pain pump is your only option...  If that's NOT something you want to explore right now, then I would encourage you to exhaust every medicine out there in your quest to get to a better pain level.  I don't know what you've been on, or what doses; I'm just saying that the pump doesn't need to be the only option.
 
I REALLY want you (and everyone else) to have a GOOD doc.  It makes such a difference. And what's this w/ your pain doctor "singing" all the time? tongue That would drive me crazy tongue
--Tina

 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/6/2008 7:33 AM (GMT -7)   
Ohhhh Tina,
How good to receive your post. I'm miserable with my doctor.
I went in yesterday and I waited for over an hour. He came singing in, sat down and asked
if I wanted more Methadone. I take 10 a day, I have a long ways to go so I said I didn't
want anymore.
I felt like it was a test. I don't think he would have prescribed more.
He starts boasting, "I'm so happy. So contented with my life."
"Why is that?" I say.
"It's because I make so many people happy," he says. (He makes a lot of money from the pump)
"That's good," I say. "I used to teach little kids and I had fulfillment from that."
"I wonder if you could fill a prescription for Xanax?" I ask.
"No, I couldn't do that because I love you and want you to be safe," he says. "It's
addictive,"
"I've been taking it for 25 years and have never gone over my prescription," I say.
And then he leaves and he's kinda singing. I feel like I've been slapped.
I take Xanax for my between Methadone medication. If I didn't have it I'd have to go
to Detox. Do people go to Detox for taking 3 mg. of Xanax a day?
I do have a doctor who prescribes it but it's a two hour drive and I'm terrified of having
the flu or something and not making it to my appointment. (I missed my last appointment
with him because I was achy and miserable from the flu and pneumonia shot.)
My husband and I both felt subhuman after leaving that whirlwind of a manic doctor. I resented him telling
me that he "LOVED" me. It was inappropriate and he obviously doesn't love me. If he did, he would have
spent more that 4 1/2 minutes with me on such a serious, life-changing subject.
I realize it's a dangerous combination but I've been taking Xanax for 25 years and I've been taking it with
Opiods for 6 1/2 years. I would have been ok with him telling me that he couldn't prescribe it. It was
the smart-alec attitude that bothered me.
Tina, thank you for being here for me at this particular time. I'm so upset and angry. I must change doctors.
Through the years I've been to some horrid doctors also. My husband says he thinks my doctor is high
on something - I couldn't see it but it's a possibility. This current doctor may be the worst.

I have gone for miles without checking on you. How are you doing, girl? What are you going to do about
the pump? I'm going to find my way to that WWW.pumpsters.com place. I have a hard time navigating my
iMac so it may be a long trip.

You are in my thoughts,
Pamela Neckpain

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/6/2008 6:05 PM (GMT -7)   
Pamela ,
 
Yeah, I would definitely say it's time to find another doctor.  I've had some horrible, AND weird situations, on this health journey.  But the "I make people happy" is really bizarre.  Or, like you said, the "I love you..." comment is weird too. 
 
Re: the xanax - I can only share my personal experiences with combining it with opiods.  I absolutely have a need for that medicine; I have more anxiety than I can function w/ at times.  However, the good that medicine does for me comes with an expense.  I think I'm ok in the moment, but it erases my memory completely.  There are large chunks of time from the past five years that are gone.  For a long time, I thought it was the pain meds.  But I starting really analyzing things and realized that these time ONLY occurred when I was combining opiods with xanax.  I have six young kids that I'm responsible for; so I made a decision at the beginning of this year to not use that medication.  I don't want to go through life not remembering anything.  When the anxiety has been too much, I've had to use Ativan.  It still blurs my memory but doesn't erase it.  But I'm only using that in extreme circumstances.  I was taking about 3mg a day w/ the xanax (1mg 3x a day). 
 
So that's my experience w/ the medication.  I didn't have any problems coming off of it.  If the medicine doesn't cause you these side effects (or any side effects), then I wouldn't worry too much about using it.  There are many of the meds we are taking that are "addictive".  But if you are using it as directed, not having side effects, and so forth - and have a need for the med - then I personally would have no problem taking what I needed. 
 
Re: me - thanks for asking turn I'm just hanging out until after the holidays.  I'm trying to hold off on making any decision.  It's the fear of the unknown.  I think my children would be damaged right now if mom had to spend another month in the hospital.  I don't want to even take that chance until after 1st of the year.  I've got a myriad of other things I need to do anyway - I need to find an endocrinologist.  I've also made the decision to go w/ my heart doc's recommendation of getting a wheelchair for mobility issues.  I want to do things with my kids again, but I can barely walk.  It's taken me a long time to put my silly pride to the side and do what I need to do.  I think I'm finally there.  Re: Pumpsters - I tried to join the group - and never heard back from the moderator.  I'll try again soon.
 
More later.  Thanks for listening.  --Tina
 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/6/2008 10:00 PM (GMT -7)   
Tina:
What are the ages of your boys?
I too have great fear of the unknown. (The pump) Your heart doctor
seems to like the idea of a pump. Yes? Does your husband help
you with the kids?
Do you have an assistant?
A wheel chair sounds like a wonderful idea if you need it. Problem there is the
car and the doorways. Can you maneuver one in your house. I can walk in my
house just fine but I certainly couldn't walk around the block.
I lived in a big care home for awhile. There were two women there who were
young and in wheelchairs. They didn't seem to do just fine. They wheeled around
and had lots of friends. (One thing, they didn't have six boys!)
There are about a million things I'd like to know about how you get about doing
just what you're doing.
I don't know what dysautonomia is. Do you contact anyone who has it? Is there
anyone on the board?
Try it as a thread?
More later -- I'm glad you're there.
Pamela
God, I'm so depressed. Just got back from my Grandaughter's second birthday. I should
be joyous - but that's not the case.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/7/2008 12:23 AM (GMT -7)   

Hey Pamela (and others),

Insomnia sets in as usual.  Have an appt on Mon w/ my pain doc.  Need to talk to him about trying something again for sleep.  I say that, but don't know what more I'd try.... 

Yes, my heart doc wants me to get the pump; thinks will lower my blood pressure (I'm at a 150/110 at all times, more when stressed, and I'm on three types of heart meds).  Obviously, I'm doing damage to my heart for the long run (I'm 35). 

Boys are 13 down to almost 5.  Was a healthy, active person until last pregnancy.  Got sick 10 weeks into the pregnancy; that was five years ago.  My help consists of friends and family (mostly mom/mother-in-law).  My husband's helps a lot when he's home, but he works a lot...living in CA, with six kids, the economy as it is - there's just not a choice right now.  He's taken a lot of time off in the last five years... 

I'm not at the point where I need the wheelchair full-time; but I can't hardly walk through a store, or go virtuallyl anywhere... So, it would be to just get out in the world again, to some extent. 

It took almost 3 1/2 years to figure everything out w/ me.  But the general consesus is that my immune-system got virtually destroyed due to virus after virus after virus (I had mono at 16, a severe case of chicken pox at 17, etc); at 19, I got the Hep B Vaccine in nursing school - I had an extremely bad reaction to it that they now think contributed to what I have now.  Combine all of that to what having six kids does to your body - and here I am.  Dysautonomia is basically a disorder of the autonomic nervous system.  The ANS controls just about every function of your body - heart rate, temperature, breathing and so forth.  There's no cure for what I have, and my doctors think it will probably get worse for me, due to the pattern over the last five years.  Yes, I'm on a couple of great support sites for that. 

But, as we all know, when you have constant pain - that's all you can think about.  So, despite my other health issues, trying to get a handle on my pain issues is at the top of my list.

Thanks for all the nice words.  I'm glad you are here, too; and I'm happy this board exists.  I've learned a lot.  Sorry you are dealing w/ depression - believe me, I understand.  It's especially hard to be around healthy, functioning people.  In fact, the holidays are a very tough time of year for me.  But that's for another time....

More later...Tina


 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/7/2008 4:02 AM (GMT -7)   
Tina ...
It's 3 am. I'm still recovering from my "fun" birthday. You sure understood that
one. The holidays are coming. Run!!!! or Roll!!!! as the case may be.
More later...
Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.

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