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Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 3/13/2010 11:40 AM (GMT -6)   
 for about a week and am trying to catch up on everything. Since I last posted I tried to go off my opana ( idea from regular pain med) and started physical therapy( idea from second opinion doc I saw) I did go ahead and see a second doctor for another second opinion and was really impressed with her. For the first time in nine years and 13 doctors, this doctor  discussed spine and neck and physical therapy and possible nerve blocks to the top of the spine starting at C1. ( Remember the other doc I saw who said this doc would want to "stick me"?, I had to secretly smile to myself when she was saying these things but it did make sense. This is a whole new direction in these head pain relief for me and I am somewhat suprised she is going in this direction as my pain did not start from any sort of injury but rather from a head cold and shingles 9 years ago. I am going to the PT because I have terrible pain in my right arm as I had a failed shoulder surgery and the therapist is addressing that as well. They as addressing trigger points in my shoulders with all sorts of electronic devices and ultrasound deep heating devices which seem to cause more pain and discomfort in my head than anything else.. Apparantly unlocking these trigger points are suppose to reduce the pain points in my head. At the same time I am suppose to stop drinking any diet soda because the phenyaliline(sp?) can cause neurological problems ( this is from the pt, not the doc) and increase water intake(again, from the pt, not the doc) and cut out caffine(again, from PT)..alll these changes while stopping the opana..Needless to say the past week has been excruchiatingly painful, most days a 10 out of 10. I haven't been able to get a breakthrough and get the pain to ease.  I think it may to too much all at once.
Today I restarted the opana, had a mountain Dew and did not have pt. I am taking the weekend off and think I need to do one thing at a time and start again monday. In any case, the second doctor I saw was very nice. Her office is 5 minutes from my home. She did a very thorough exam, had a new idea, did not immediatly "stick me" but discussed it as an option, didn't make any med changes so I still am on the same meds with the old doc, who she knows so there is no conflict there .I will see her again to see where she can go with this and if it seems she can take over i will switch over and ask her to take over med management if she will. Right now I am at a place of "holding my breath". It sounds like a good thing so I don't want to jinx it. After all the docs and surgeries and threatments etc, I really felt comfortable with her. I've only seen her once now. I am hoping there will be no problems with Medicare or insurance or whatever could possibly screw this up, we all know how that goes.
Anyway, thats where I've been. With the opana back, the pain is subsiding and I can get back on and read how you all have been doing. i have missed you all, Hope you have been well.
I hope you have a painfree weekend
spring is beginning to show its head here in the midwest
sick and tired of being sick and tired

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 3/13/2010 1:20 PM (GMT -6)   
Hi Cata,

I'm sorry that you had such a rough week, but I'm really glad to hear that you like the new doctor & that she has a plan! Hopefully the PT & the injections will make a big difference for you!


Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 3/13/2010 5:44 PM (GMT -6)   
Hi Cata,

It's good to see you back. I'm sorry things have been so rough for a while.

Opana was just not the right med for me, but I hear it is extremely difficult for some people to come off of.

When your feeling up to it, I'd love to hear what the whole theory is on the diet drinks, water, and caffeine. I know the obvious complaints, but I assume this is somthing a little more indepth. I'd love any info you'd be wiiling to give. I drink Diet drinks constantly!!!

Best to you!
Formerly PrayingForRealRelief...

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 3/14/2010 11:20 PM (GMT -6)   

were you just trying to wean yourself off the opana on your own? I am just curious as to why you wanted to do that? Anyway I hope that going back on it has helped you and your pain level is back down. I think I would take some of the things your PT has been telling you with a grain of salt and talk with your Doctor about going off the caffine, and the diet soda, there have been internet rumors about the sugar substitute in diet sodas for a long time, you can check them out at snopes if you want, but most if not all, are unfounded. Anyway talk to a nurtritionist or dietitian or your Doctor! I sure wish you well and hope your new PM works out well for you!

White Beard

Stella Marie
Veteran Member

Date Joined May 2005
Total Posts : 601
   Posted 3/15/2010 4:25 AM (GMT -6)   

Thanks for posting. I was starting to get worried about you. I glad things are starting to look up. Please do not be a stranger.

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!



Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 3/16/2010 12:02 PM (GMT -6)   
Hello all
I was going to go off the opana because I thought it wasn't really helping. I was still having 6-8 episodes of breakthrough pain a day and doc was only willing to write for 4 norco for BT. My choice was 6 norco without the opana or 4 with the opana. Not much of a choice. I was still left with episodes of breathrough every day, it just seemed that going without the opana was the lesser of 2 evils. Also, I hate to admit but the $75 a month for the co-pay on opana was something I just can't afford. Trying to live on disability while trying to pay med bills and the $$15,000 I have left on credit cards from when I was using Actiq is a stretch. We all have the same issues , I am sure. Even with insurance I am up to $300 a month on co-pays on meds a month. Whats killing me is paying my sons school loans. He graduated from college last May and just can't find work. If any has a job for someone with a degree in molecular and cellular microbiology let me know, ok? ;o)

As far at the PT who wants me to kick the caffine and the diet drinks and drink an ocean of water a day, well yes, I am taking her with a grain of salt. If I didn't have my daily diet Mt. Dew and my cup of coffee, with all the narcotics, there is no way I could stay awake during the day. And yes I have read the reports about diet soda but wasn't it saccahrine ( boy oh boy, I really used to be able to spell quite well before these drugs took over my brain all these many years ago), and aren't there now many new headache reliefs that add caffine to them? So I take her handouts and smile. I really don't know what her PT is doing for my head pain but it is helping my shoulder and back so I will continue to go.
I can tell you this change in weather is doing terrible things to the old noggin. I am remiss to say I still haven't caught up on you all. I was surprised by a visit from both my children home to visit this weekend. Just sent my daughter off this morning off at 4:30 but my son is still home and even at 24 admits "there is no place like home" when hes' sick so I am off to make a huge pot of chicken soup. The river in front of our yard is flowing and the swans have returned( a sure sign that spring is around the corner). The wood ducks are in the yard. The Canadian geese are lining up in long rows getting ready to fly off back up north and the daffodils and tulips and naked ladies are begining to show their heads in the gardens. ( if only I can keep the dog from digging in there, but shes' still a puppy and hasn't quite learned where she can and can't dig). I am getting ready to go to PT and I promise when I get home to try to catch up on you all. I have been thinking of you, I wonder how Suzane has been, has Skeye finally gotten her appeal, is ANYBODY getting disability?? I hold you all close as you have become my support and my family.
until later
sick and tired of being sick and tired

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