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Old 10-15-2012, 10:45 PM   #1
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Wink Question for pm guru's

I have been at this for a couple of years , ok two, but this last year I have been getting worse and worse. I am two years post op for a c6/c7 fusion and l5/s1 discectomy. Really long story short, in the begining I went through several different meds trying to find what worked so a little over a year ago I lost my insurance and we stopped at a coctail of 2-10/325 percocets 3x per day, gaba 300mg 2x per day, soma 350mg 2x per day, clonazapam and lamectal for anxiety.

My question is, this was not working for some time. For months my pain levels were such that I couldn't do anything but cry basically. I even stopped blogging on this site which I have to get back to because it helps so much. Anyway, I want to know if it is a natural progression to up your meds at this point? I am cash pay right now and went to a wonderful pm doctor he listened to me addressed my concerns and actually treated me as a human, more than I can say for the pharmacy, that is another issue... He first put me on methadone which after 5 days I had great relief, stopped almost all percs and was feeling pretty good. I had a slight rash but as the days past it got worse and worse to the point I was told I am alergic and can not take them anymore... So he switched me to morphine 30mg er, I get the same rash but not even close to the severity so I am good there. My pain level is down but not like on the methadone and I still have to take abou 4 per day but my levels are liveable and I can get out of the house and move around. Huge improvement. Is this normal? I feel like I should not be taking morphine and if I am here now, where will it stop? Is 30mg a low dose, normal, high dose? I was concerned it is the medication making me hurt so I had mri done and there is physical reasons to explain my pain but I guess I am looking for justification. Sometimes I just feel like such a looser that I can't just suck it up. But believe me I have tried. I get a little buzz from the morphine butit doesnt last long and, I was told this will go away with time. I have never abused any of my medications and dont want to be percieved as doing so.

My pharmacy questioned me because of the percs, methadone, then morphine, going from one doctor to another (pcp to pm) and said I popped up on their list. I normally go to Costco but had to go to CVS because Costco was out for a week and both places made me feel like a big looser, questioning my doctors names, why I am taking all of this, if I am doctor shopping and getting scripts from everyone. One guy even explained how CVS was getting shut down in Florida because of people like me. I felt about 10 inch high.

So a lot of rambling but if you take the time to read all this and can give me some idea of where I am at in the pm game and what to look forward to. I am sure the morphine has kicked in and I am not making sense but could use some reassurance.

It is hard to believe my life two years ago compared to my exsistance today. Huge difference. Thanks for reading....
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Sandy


C5-C6 tear/buldge
C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

 
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Old 10-15-2012, 10:47 PM   #2
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Re: Question for pm guru's

Oh, I am working off my tablet to and it doesnt have spell check or allow me to scroll to edit so that doesn't help either. Sorry for any typo's and incomplete sentances.
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Sandy


C5-C6 tear/buldge
C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

 
Old 10-16-2012, 10:26 AM   #3
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Re: Question for pm guru's

Hi Sandy...

Thanks for giving us an update as I was just reading through your previous thread from back in August as you were waiting until November to get your insurance. And back then..you weren't able to get any type of med increase...

So I am glad that you have found a PM Dr. and they are helping you..

I say this next thing with care and support and I promise it's not meant to be snarky.....I just think that you worry a bit too much about what is "normal" or not based on others experience or thoughts as you asked this same thing back in August..

And the reason I say not to worry...is that you just need to work with your Dr. and see what works for you. Trying to compare your medication or treatment to what others do, or even what friends/family think about it should not be a concern at all. I just hate for you to have any unnecessary angst based on this type of worry.

We all have different pain issues and treatments according to what our pain generators are, how long we have been in PM, what other health issues we have, and our tolerance to meds and pain.

Again...my point is not trying to be mean at all so I hope it comes out the right way..I just don't want you to worry so much.

I know that you were in a lot of pain a few months ago and were hoping to get a medication increase and now it's great that you are getting the MSContin added to your Percocets...It's too bad that you had reactions to the Methadone...but thankfully the MSContin is helping lower your pain levels.

I know I had mentioned previously that you are on such a low dosage of the Gabapentin at only 600mg....The therapeutic dosages for that particular medication is from 1600mg to 3600mg. So that is where you can speak with this PM about raising the dosages if needed to help more with the nerve pain as opiates do not really work well for that type of pain.

Also....chronic pain management is so much more than just the medication you take. Does this PM have you doing other things daily/weekly/monthly to help with your pain?

The more we can use other modalities, the less we have to rely on our meds and keep raising the dosages over time.

There is daily exercise (at least 30-45 min. a day), physical therapy (going a few times and then learning what to do at home), yoga/stretching, aqua therapy, injections, steroids, acupuncture, massage (regular and ultrasound), TENS unit, biofeedback, counseling, ice, heat, etc.

As well as hopefully you do not smoke as this is now proven to cause disc dehydration in the spine (let alone all the obvious health issues), and then eating well and maintaining a healthy weight.

Are you still on track to get insurance in November? That will be great so that you can start using some of the other modalities that insurance will cover like the PT, injections, etc.

And sorry that you had a bad experience at the Pharmacy....but they are under great scrutiny/pressure, along with the Drs. with any controlled substance. So if you were coming in there for the first time filling your opiate prescriptions...then they are going to double check everything....And especially if you are paying cash...they are that much more suspicious.

Obviously I am not condoning rude behavior...but just explaining that if they don't know you, they are more apt to be more demanding/thorough with their questions.

Just make sure that your Dr. knows that you had to use another Pharmacy as many PMs have their patients sign contracts that you only use one Pharmacy for your opiate prescriptions. As 42 states now have the Prescription Monitoring Program that tracks you by name to see when/where/what you are doing. So this is another thing that this CVS may have questioned by looking you up to see that you normally go to another Pharmacy.

I certainly don't think your Dr. will have any issue with this as the Costco was out of the meds...but just wanted you to follow through to let them know about this.

And just FYI but most Pharmacies only get shipments of their controlled substances once a week. So I would make sure that you speak to the head Pharmacist at your Costco and find out what day they usually come in. And then the best thing is to always call ahead to make sure they have what you need before you drive there.

I think it's very important to befriend your Pharmacist and get to know them personally as well as they can get to know you. This can really come in handy with these type of situations...

So...I think it's great that you have found a good PM Dr. and really hope that starting in Nov. you can get even better treatments and start using even more modalities to keep your pain at a decent level.

I live with about a 5-7 on the scale depending on the day. With my PM Dr...we try not to up the dosages of medications but end up rotating them every 3-4 years. This way it has kept my tolerance level down to any medications.

But that is just me and as I've said...you have to do what is right for you and what you and your PM think is best for your treatment. There isn't any type of "right or wrong"....it's just about living your best life with chronic pain...

Thanks again for your update

 
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Old 10-16-2012, 11:57 AM   #4
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Re: Question for pm guru's

Quote:
Originally Posted by Ilovemycutedog View Post
Hi Sandy...
**********Thank you Ilovemycutedog for your honest and helpful reply******


Thanks for giving us an update as I was just reading through your previous thread from back in August as you were waiting until November*Yes, my insurance starts Nov 1st! My appointment is scheduled for the 8th to set up Injections and go over other options** to get your insurance. And back then..you weren't able to get any type of med increase...

So I am glad that you have found a PM Dr. and they are helping you.. **Thank you**

I say this next thing with care and support and I promise it's not meant to be snarky.....**Not Snarky at all**I just think that you worry a bit too much about what is "normal" or not based on others experience or thoughts as you asked this same thing back in August..
**I guess I was just looking for advice, over anxious, seeing what others are doing, I don't know exactly what I was looking for but this is my anxiety coming out**

And the reason I say not to worry...is that you just need to work with your Dr. and see what works for you. Trying to compare your medication or treatment to what others do, or even what friends/family think about it should not be a concern at all. I just hate for you to have any unnecessary angst based on this type of worry.**I agree but this is what is so hard for me to do, easier said than done...lol**

We all have different pain issues and treatments according to what our pain generators are, how long we have been in PM, what other health issues we have, and our tolerance to meds and pain.
**Yes, I understand this and again thank you. I just was looking for something, some type of sick justification Mental therapy for me to put it out there and "blog about it" anonymously.

Again...my point is not trying to be mean at all so I hope it comes out the right way..I just don't want you to worry so much. **Thank you**

I know that you were in a lot of pain a few months ago and were hoping to get a medication increase and now it's great that you are getting the MSContin added to your Percocets...It's too bad that you had reactions to the Methadone..**Yes it is I was so happy with the results and my pain levels were down between a 2 and 4 lowest in years, I was walking, cleaning, shopping, over did it a bit but it had been sooo long since I had felt like doing much of anything**.but thankfully the MSContin is helping lower your pain levels. **It is but I still hate the thought of taking Morphine for some reason I have a real mental speed bump on that one. My Father in law was taking Morphine before he died and maybe that is why.. IDK but I do know that it has my pain levels down to a livable rate about a 5 and is allowing me to get back in the game, to reclaim my life I guess you could say. So thank you.**

I know I had mentioned previously that you are on such a low dosage of the Gabapentin at only 600mg....The therapeutic dosages for that particular medication is from 1600mg to 3600mg. So that is where you can speak with this PM about raising the dosages if needed to help more with the nerve pain as opiates do not really work well for that type of pain.
** The Gaba really sends me for a loop it makes me groogy and takes away any motivation that I have I really would like to remove it from my "cocktail" and plan on talking to PM doctor about that after my injections I don't know if this is something that goes away with time or not but I haven't seen it go away with me and that is my fault I don't take it consistently like I should.**
Also....chronic pain management is so much more than just the medication you take. Does this PM have you doing other things daily/weekly/monthly to help with your pain?
**Right now no, but I do have an appt on the 8th to get the ball rolling. It seems that this past 6months my whole life has been on hold and in pain and I am jumping out of my skin just waiting for some type of relief. I was told that I will need additional surgeries and of course the injections and PT. I plan to fully take advantage of this starting next month. You say you live around a 7 that must be horrible I don't know how you do that month after month. I have been such a pain in the dairyaire the past few months live around 7-10 unable to move and just watching life pass me by. I feel for you and I am sorry that you have to endure such pain on a daily basis.**

The more we can use other modalities, the less we have to rely on our meds and keep raising the dosages over time.

There is daily exercise (at least 30-45 min. a day), physical therapy (going a few times and then learning what to do at home), yoga/stretching, aqua therapy, injections, steroids, acupuncture, massage (regular and ultrasound), TENS unit, biofeedback, counseling, ice, heat, etc.
**Currently I do stretches when I can, Heat/Ice, TENSE unit, acupuncture, massage, and of course diet and meditation but will defiantly ask about the others the "Biofeedback" and I know I need counseling I just have this overwhelming sense of being such a let down since this started and I know it is all in my head and not helping my situation at all to feel sorry for my self. I am yet able to come up with an answer to family and friends when they ask about my pain, my meds, and my situation, I always feels as if I am being judges. Personal issue I know I have to work on**

As well as hopefully you do not smoke as this is now proven to cause disc dehydration in the spine (let alone all the obvious health issues), and then eating well and maintaining a healthy weight.
**My weight has gone up but not to bad since I am currently about 15lbs over weight which I am sure doesn't help. Smoking I smoked for years but stopped recently and hope that helps as well**

Are you still on track to get insurance in November? That will be great so that you can start using some of the other modalities that insurance will cover like the PT, injections, etc.
**Yes, November 1st... I have my appointment set up for the 8th to get the ball rolling on injections and what ever else my doctor will suggest, would love to start some PT and Biofeedback sessions.**

And sorry that you had a bad experience at the Pharmacy....but they are under great scrutiny/pressure, along with the Drs. with any controlled substance. So if you were coming in there for the first time filling your opiate prescriptions...then they are going to double check everything....And especially if you are paying cash...they are that much more suspicious.

Obviously I am not condoning rude behavior...but just explaining that if they don't know you, they are more apt to be more demanding/thorough with their questions.
**I get that. I just thought it was awful rude and I have gone to that CVS since moving here and my children, that have insurance, still go (my son gets 8 scripts per month from them) they are just to expensive for private pay so I know the Pharmacist and staff on a first name basis I think that is why it hit me so hard. I was so embarrassed. **

Just make sure that your Dr. knows that you had to use another Pharmacy as many PMs have their patients sign contracts that you only use one Pharmacy for your opiate prescriptions. As 42 states now have the Prescription Monitoring Program that tracks you by name to see when/where/what you are doing. So this is another thing that this CVS may have questioned by looking you up to see that you normally go to another Pharmacy.

**I have not signed a contract with this new doctor but I am sure it will come with time. and thank you I would have never thought to speak with him and let him know I went to another pharmacy. In AZ the PM had there own pharmacy and I had a contract to use them. It was in the same building and I never thought twice about it.**

I certainly don't think your Dr. will have any issue with this as the Costco was out of the meds...but just wanted you to follow through to let them know about this.

And just FYI but most Pharmacies only get shipments of their controlled substances once a week. So I would make sure that you speak to the head Pharmacist at your Costco and find out what day they usually come in. And then the best thing is to always call ahead to make sure they have what you need before you drive there.

I think it's very important to befriend your Pharmacist and get to know them personally as well as they can get to know you. This can really come in handy with these type of situations...

So...I think it's great that you have found a good PM Dr. and really hope that starting in Nov. you can get even better treatments and start using even more modalities to keep your pain at a decent level.

I live with about a 5-7 on the scale depending on the day. With my PM Dr...we try not to up the dosages of medications but end up rotating them every 3-4 years. This way it has kept my tolerance level down to any medications.**Good suggestion I will talk to doctor about that I hate to keep going up at this rate in a few years I will have no other options and I don't want to get to that place that is one of the reasons for the post I just wanted to compare where/when type of information. At times the pain is just to much and I want/need an escape. i don't know how you do it and feel for you. I am sorry you have to live in such pain and do not wish this on anyone. After living this it gives a new understanding to something i was never able to comprehend before.**

But that is just me and as I've said...you have to do what is right for you and what you and your PM think is best for your treatment. There isn't any type of "right or wrong"....it's just about living your best life with chronic pain...

Thanks again for your update

Thank you for your reply a lot to take in. I hope my quotes don't sound to defensive. I have a tendency to ask a question and then not like the answer. I really wasn't trying to compare notes but to see who/what else was goingon out there I guess. I am not sure what I was looking for in my post mostly just to update and vent....


Thanks
__________________
Sandy


C5-C6 tear/buldge
C6-C7 ACDF
T1 - T5 neuroforaminal, lesions, facet arthropathy
Disectomy L5/S1
Anxiety
PTSD
Chronic Pain

 
Old 10-16-2012, 12:25 PM   #5
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Re: Question for pm guru's

Thanks for sharing more and I appreciate that you understood I'm truly trying to help. It is hard sometimes with the written word on a computer...LOL And you don't sound defensive at all! No worries there..

I completely empathize with taking "Morphine" as I would never have thought I would be where I am today just 15 years ago. Morphine was something only taken in the hospital for really sick people!!

And I think that once you get to a place where you are comfortable with the dosing of your meds and being able to add in as many of the other modalities...you will probably level off with having to change/tweak the dosages for awhile. So it's perfectly ok to be working with your PM to find a good mixture right now. As I mentioned for me, I would rather have some more pain and keep my opiate dosage low so that there is room in the future for more surgeries or just managing my chronic pain in general.

If the Gabapentin is too much for you...there is either Lyrica, Cymbalta or even Savella that people have had success with for nerve pain. I was on Cymbalta for quite a few years and it worked very well for that type of pain. I was blessed in that my last (3rd) fusion took care of most of my nerve pain so I was able to go off of it.

So maybe something else would work better for you...But I will say that those type of meds do need to be taken consistently to work well.

Thanks for your kind words....I feel for all of us here who have to live with chronic pain. It is a difficult adjustment that is for sure! This is one of the reasons that I went to counseling for some time to help find healthy ways to deal with my pain levels. Things like prayer, meditation, yoga, going for my nightly walk with my dog, spending time with friends/family, watching favorite tv shows/movies, and then using the computer. All of these things help take my mind off my pain.

I'm so glad that you will be getting your insurance soon!

And please feel free to vent and share here anytime...I truly don't want to discourage you at all from doing this. I just wanted you to feel confident and comfortable that you are on the right path for yourself with regards to your pain management. One of the things I have learned as well is to not tell anyone besides my mom about any of the medications or PM stuff. It's just too hard for most people to understand if they have never been there.

So we definitely understand you here!!

Sending you some hugs (( ))

 
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Old 10-16-2012, 03:16 PM   #6
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Re: Question for pm guru's

S-

30mg of Morphine a day is considered fairly low. I'm at the equivalent of 200mg/d and many tell me that is about average.

Iso

Don't beat yourself up, get relief.

 
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