Had a good visit with PM

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Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/20/2008 7:00 PM (GMT -7)   
Isn't it nice to hear good news? yeah Saw the PM doc today and came away with Duragesic patches and a ref for a rheumy, can't wait to try the patches!! I might hold off on the rheumy til I see the neuro in 2 weeks. PM doc calls my pain prob failed back surgery syndrome...is there a syndrome syndrome....lololol He said essentially that I'll always have the probs but he has become much more active tx-wise. I actually feel listened-to...whhooohoooo
Any tips for optimal use of the patches? Will start them tomm. He also increased the Lyrica to 75 2 x day for a week then 150 2 times a day. And..........this is a big and for me....he told me that the SCStimulators are becoming available in this area and that it's something that I should seriously consider. For the 1st time in a long while, I feel hopeful!! :-) :-)

If pain could have cured us
we should long ago have been saved.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/20/2008 9:20 PM (GMT -7)   
Great, Muzz! I can't tell you anything about the patches; I've never used them. There is something called Failed Back Surgery Syndrome (FBSS) - no kidding!

It's great you're getting more active PM. The dose of the lyrica he's moving you to is pretty standard; 75mg twice/day is starting dose. Did nothing for me. I'm sure you know from reading these posts to research the stimulator a lot but you've got time and lots of doctor appointments. It is so great to feel hopeful again. I want to feel it one of these days myself.

Cheers to you!

PaLady

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 274
   Posted 5/20/2008 9:23 PM (GMT -7)   

Muzz,

Glad you had a good visit.  I've been on the patches for awhile. If you can, wait until you have someone home with you.  Any time I start a new med, I wait until my hubby is home just in case I would have a reaction or something. I started on the 25mcg and didn't feel a difference.  Two weeks later I went back and he raised it to 50mcg. After about 2 hours, I got a little woozy but it was gone soon and I noticed fairly good pain relief.  You might find that the patches don't stick very well and might want to get bioclusives which are clear patches you put over the med patch and that stuff sticks real good.  If you get a skin rash from the adhesive, sometimes that prescription allergy nose spray works(can't remember name), just spray it on your skin around where you will apply the patch, wait for it to dry and then put on your patch. I got a bad reaction from the adhesive and I thought I was going to have to give up the patch.  Now I don't have to use the spray at all. To get the adhesive off your skin from when you remove the old patch, use any make up remover. I use lancome because I get those free sample sizes. I think that's all the tricks I know, I'm sure other's will have some more.

Melissa


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/21/2008 2:27 AM (GMT -7)   
Muzz
I'm so happy to hear you had a great PM appointment and that you feel that you were listened to! What a great thing to feel
I dont have much to offer on the patches as I've never tried them but i hope you find that they work wonders.
Hope your Rhumy and Nuero appointments go just as well and you walk away feeling that there is an army of doctors standing behind you ready to battle these problems for you!

Hugs

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/21/2008 4:11 AM (GMT -7)   
Muzz:

I'm thrilled for you and hope the patches are effective in treating your pain. I haven't used them (my PM believes they are "for cancer pain only") so I don't have great advice on that, but I have seen several posts where people say the different brands have different "sticking power" so if you have trouble with keeping them on, you might want to ask the pharmacy to try a different brand for you.

The main reason I wanted to reply is to tell you how encouraging it is to hear a story about someone finally getting really good treatment at the doctor's office. I know I'm not alone here when I say that I am still searching for a PM who will step up. Stories like yours give me hope that someday the rest of us will find the doctor who will help us too.

Keep us posted on your progress. I hope you have great relief from this med!
Ry

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/21/2008 5:56 AM (GMT -7)   
Muzz
So happy for you to finally be listened to and heard..........
Hope the patches work
Keep us posted

LYN

Fixing Typos lol


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
 
   
 
                   
 

Post Edited (Howlyncat) : 5/23/2008 8:46:06 AM (GMT-6)


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/21/2008 11:43 AM (GMT -7)   
TY all for the advice and encouragement...I am hopeful finally. I've felt like such a slug for so long, I'm happy to have an relief at all .As for the SCS, that is a bit down the road, actually , they just started doing them around  here and the PM doc doesn't do them, an ortho does the actual procedure. I don't have any plans for any time soon. I'm not someone used to being down very long and I'm really looking forward to feeling good. :-) I'm going to kick back a few days, and let the meds work on me. I put the patch on my leg and will watch for reaction, I do get red with some tapes so I'll keep an eye on it.
I never dreamed that there was actually a Failed Back Surgery Syndrome, makes sense to me since so many seem to fail.
I have books and movies and no little ones til Friday and hubby takes good care of me. yeah TY again, u guys rock! I think that coming  here really encouraged me to be more vocal and proactive in my own care.

If pain could have cured us
we should long ago have been saved.


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/22/2008 6:56 PM (GMT -7)   
I am a pretty happy camper today! Hubby got me some Nexcare bandages with clear plastic edges and it's staying in place nicely. Of course I slapped that puppy on as soon as hub brought it home, before reading up on it and I put it on my leg... But I guess it's absorbing well cos I woke up today with very little pain, for the 1st time in several yrs! Of course, I jumped up and over-did, some cleaning and such and the back pain is creeping in a little but I'm ready to go to bed soon, so that's ok   Over-all, it's been such a good day, pain-wise and I seem to have mental energy for the 1st time in ages. Usually, just the thought of doing anything, even to sit down at the pc, was over-whelming and I've found myself not living life, just tolerating it. I'm actually looking forward to waking up in the morning! Of course, the fact that our baby granddaughter Adaline, age 2, is coming at 8am for the day and overnight has something to do with that tongue

If pain could have cured us
we should long ago have been saved.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/22/2008 7:03 PM (GMT -7)   
Muzz,
That all sounds wonderful - waking up with little pain for the first time in years is huge! I felt like you were describing my life in parts of your last post - the not so good parts, and everytime I see someone is getting better relief on a more consistent basis it makes me realize I've got to hunt for a good pm doc. My surgeon is making it easy for me to stick with him, but he's not activey doing any pm, just prescribing as he did after surgery.

The mental energy.....that hit me big time, Muzz. I'd love to get some back. Just tolerating life - that's me right now. Barely tolerating. So good for you!

PaLady

By the way - how much do you think the lyrica is helping? And what symptoms are you taking that for? I have the numbness/tingling in both feet, but it's not diabetic neuropathy.

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/23/2008 5:18 AM (GMT -7)   
YW PAlady :) Yes, the mental energy makes such a diff in one's life. I actually woke up on my own this am and got right OOB, I usually laid in bed for an hr trying to get the energy to get up. I still have some minimal pain and the stiffnes but I can attribute some of that to age...LOL
I'll tell you, coming here and being encouraged by the good folks here gave me the impetus that I needed to be a bit more pro-active with the PM doc. The M for that is for management, I wasn't being managed. Maybe the message I left on their machine made a diff too(never gat a person when I call..LOL) telling them just that, that their clinic was a joke and my pain was not being managed. No one mentioned it when I went in, but maybe it made a diff, I don't know.
I'm on the Lyrica for intense throbbing and burning and vibrating in my feet and hands. I am seeing a big diff there too, but don't know if the patch is masking it or if the Lyrica is helping already. I see the neuro next week, PM doc said it may be some kind of vasculitis, considering the other probs I have that point in that direction.
It doesn't sound like your surgeon is helping you manage your pain, you should really consider finding a PM doc. I don't think that surgeons usually follow a pt long-term, not sure, just my own exxperience :-) The squeaky wheel does get the grease, kiddo! yeah Go for it!

If pain could have cured us
we should long ago have been saved.


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/24/2008 3:12 AM (GMT -7)   
Muzz
So happy you are feeling much better and that the patch seems to be doing it's job for you. If the lyrica isnt working yet, perhaps you will feel even better once it starts to do what it's ment to:)

I have learned so much being here that I had never even heard about medications and being pro-active with your Doctors. I dont feel as intimidated about calling the office or being honest about what I need. I have a huge tendancy to tell my doc's I'm fine for some reason! Go figure.

I agree with muzz PaLady, you should check out a PM docs opinion on things. Maybe getting some long acting medication. I bet your pain is like a rollar coster and even harder to knock down. Wish I could just pull out a script pad(if I was a doc) and mail you over something to take it all away.
Even better a magic wand for all of us. Maybe one day someone will come up with the answere to end all chronic pain no matter what it is.
We put a man on the moon right?...sorry that was a bit cliche!!

Hoping the patch and lyrica was the answere for your pain muzz!
Better days for all of us

Hugs

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/24/2008 4:58 PM (GMT -7)   
Freya & Muzz,
Yes, I agree I need to find a pm doc and look at longer acting meds. I know that part of it is the reluctance to let go of my surgeon's office - they've been so good about sending me scripts, etc., and I fear things not working as smoothly after I make a switch. I am working on one option and one of these days will have to take the risk. I think part of it is also psychological. I know you'll both understand that there's still a part of me hoping things are going to get better, that somehow the surgery (which was last Sept.) will work, or something will heal...whatever, and I won't have to face lifelong pain meds, and longer acting ones. It's taking that next psychological step - do you undestand what I mean?

But reading your improvement, Muzz, helps me inch forward in that decision, so I appreciate it. Like Freya, I've learned a ton about various meds here, so I now know there are more options than I realized medicaiton wise. Still, they'll all have side effects, and cost is also a factor for me.

I'm having a more reasonable pain day (that phrase can only be understood by another CPP!) than a couple of days ago, probably because I threw the kitchen sink at the pain last night - stim unit, theracane, heat, pills, shower, approved stretches, SI joint belt, etc, etc, etc.! And it's a bit warmer today. I know that makes a difference!

Hugs,

PaLady

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/24/2008 6:48 PM (GMT -7)   
Freya, I hear u about telling docs that I'm fine, I have a tendency to do that too. I do it with hubby also and he gets upset cos I know I'm fibbing.  Maybe I have a slight martyr complex eyes Today was the 3rd day with the patch and I did notice some low back pain but I had Baby Girl, 2, all day Fri and over night and today, so that explains that!! LOL She is so good and precious but she keeps me on my feet. She left today and the house was so stinkin quiet, we went and got the other lil one and took him to a family cookout, and after all of that, I'm still in pretty good shape :-)   Actually, just sitting and typing this w/o getting worn out and hurting is wonderful! I put on the new patch this afternoon after a hot bath and have a lot less pain. I think I'll still need my TENS Unit for lil ones and work, but should be able to be w/o it for just corkin around. My hands and feet con't have very little burning and tingling and throbbing, I go up to the higher dose of Lyric in a couple of days.
 PAlady, I'm so glad that I could encourage someone, I know that coming here gave me the courage to holler a bit yeah TY both for the kind words and caring :-)

If pain could have cured us
we should long ago have been saved.


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/24/2008 10:44 PM (GMT -7)   
PaLady, I am with you on your fear of leaving your surgeons office and on the hope that things will improve and the surgery just needs more time to heal. I know when I was first put on oxycontin last year, however great that the pain was controlled, there was this feeling inside that they were giving up on me. And [sychologicaly every time I took the pill it was a reminder that I had a chronic incurabke condition.
After I adjusted to it I realized that the pain medication would only benefit my chance of remission. With lower pain I was in a better space and my body had a chance to rest and at times relax and build back strength.
I dont know that much about medications, but I do know your body may not be getting the time it needs to rest because the short acting medication goes up and down, never allowing you to get a hold of the pain. long acting medication may give your body that chance to do a littlemore healing.
But I am sure you will know when the time is right for you and maybe it's not quite right yet.
I can understand exactly how your feeling. I would just like to see you feeling better!

Muzz, I am so happy you are able to do more of the things that you would like! I hope the higher dose of lyrica leaves you dancing through the house:)

I had a pretty low pain day today myself, I think it may have been that my little girl(my cat) brought in a baby rabbit and my whole day was consumed with worrying for it because it was a bit injured.
Cutiest little thing you've ever seen. You wouldnt imagine how hard it was to find someone with experience to take it in while it healed, had hubby running all over town!
My little girl is such a vicious killer, she'll bite off your finger if you move it right!

Hope everyone is having a restful low pain night:)

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/25/2008 12:10 AM (GMT -7)   
I was dancing yest. and today with Baby Girl(actually her name is Adaline) :-) And running, and playing on the swings and slide...and...oh, don't let me get started, I could go on and on abut both of them...lol
I know all about injured lil creatures, we've had all sorts here that the boys used to drag in, both animal lovers:) We even had an injured fox once! It didn't make it tho, had a head injury...but we had alot of successes, including an injured owl!

If pain could have cured us
we should long ago have been saved.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/25/2008 12:57 AM (GMT -7)   
Muzz:

It is so wonderful to hear such a success story! I'm thrilled that you are feeling so well. It gives me hope that one day I will find someone who will finally manage this pain (or better yet, figure out how to treat whatever is causing it!).

Hope you have a wonderful holiday weekend!
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/25/2008 9:06 AM (GMT -7)   
Ok, Muzz, you moved me a couple of inches forward on my pursuit of better pm!!

Great news that it's helping so much!

PaLady

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/25/2008 1:41 PM (GMT -7)   
TY guys, it is great! I have breakthrough pain but I have my TENS and will take meds as nec, but so far, it's been been anywhere as nec as it was!! Whoooohoooo!! I still have the feet and leg issues with the weakness but no burning or throbbong...another whooohooo!

If pain could have cured us
we should long ago have been saved.


hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 6/28/2008 9:27 PM (GMT -7)   

dear muzz---

i'm new to this forum, but read your post about the fentanyl patch and am wondering how you are doing with it?  i, too, was on the fent patch and had some not so great results; so just curious how it's going for you?  also...are you, by chance, taking an anti=depressant?

-k


mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 6/29/2008 2:35 PM (GMT -7)   
Hi Muzz,

Do you deal with back pain/sciatic pain down your leg? I deal with the burning,pins and needles,throbbing pain, and wasn't sure if it was your back that was bothering you or not. I had a micr discectomy on May 5th almost two months ago, but still having the burning,stabbing and pins and needles, though the muscle spams are not there now the pain still is, but it's not as bad as before surgery. So I'll take what I can get, less pain is good. If never tried the patches, have been on some pain meds like loratab,percocet, and hate them all so I'm not on anything right now other then prescription motrin and occasional muscle relaxer. I had a steroid shot last week, but can't tell that those shots do anything for pain. Afraid I might have failed back syndrome, the neuro surgeon says she doesn't see anything compressing on the nerve, so I'm not sure what to think I had a MRI two weeks ago.

Blessings,

Mercyme

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 6/30/2008 5:34 AM (GMT -7)   
it is my back, lower and also cervical, 3 hern discs there. Was dx with failed back surgery syndrome( laminectomy 04 on lower spine) and put on the patches and I'm a new woman...really, my family has noticed a huge diff and my hubby  is so happy. I take some Lorcet for breakthru but no too often and I'm not giving up my muscle relaxers, no siree. I con't to have the weakness in my left leg and occ pain down it, but I'm dealing with polyneuropathy and it's to be expected. But over-all, doing wonderful! TY for asking. And yes, huring, I am on Zoloft and have been for 14 yrs, why do u ask?

If pain could have cured us
we should long ago have been saved.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/30/2008 6:24 AM (GMT -7)   
Muzz,
It's great to hear the improvement is continuing! You and a few others here who have had improvement are giving me a little hope that there is some med. out there that will help me get some of my life back. I so want to be able to work again for a few more years, but maybe that's a bit of pie in the sky thinking.

PaLady

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 6/30/2008 6:56 AM (GMT -7)   
TY, I do con't to do quite well and hope that it con't. Keep trying, u will find the right combo that will enable u to get your life back, I did.

If pain could have cured us
we should long ago have been saved.


hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 6/30/2008 7:21 AM (GMT -7)   
I wondered about the anti-depressant, b/c I, too WAS (past tense!) on the patch and it just wrecked me emotionally. i was NOT on and AD and when i went from 12-25 i ways ok, but when i went from 25-50, it tore me up. huge anxiety, breathing difficulities. don't wanna alarm you; everyone is different. i just wonder if things woulda been different if i'd have had an AD on board. i've since switched to kadian, and am doing much better. good luck w/ the patch!

ohhhhh.......WHATEVER YOU DO, DO NOT (REPEAT) go cold turkey in any form. i'm sure you know this, but it's just a reminder. trust me...i found out the hard way and it was not pretty. be sure to taper slowly.

wishing you a pain free second, minute, hour, day or whatever you can get---
k

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 7/1/2008 4:13 AM (GMT -7)   
MUZZ

I am so bleeding happy for you ........

Take care and stay in the good place you are

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
         Be Well All and Stay With Us We are Here To Help
                               LYN 
   
 
                   
 

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