Long term pain management - HELP

[rohrer01]

Well, I have good news to report. I slept through the night last night for the first time without "clock watching" as to when I could take my next percocet. I woke up around 8AM and WASN'T drenched with sweat for the first time! Today is day 10 of no fentanyl. I did take my percocet this morning but am hurting pretty badly, but this is nothing compared with getting rid of that detox feeling. Now I can address my pain and hopefully treat it in a more productive way with shots or something. I'm very happy!

[mbeckoff]

What great news!
Hope you have a wonderful day

Melissa

[Back-out]

Super great!!

And figure you've done this for many more, who/ve been inspired and informed - also warned. Just look at the viewings this thread has gotten!

[lizmar]

Having a lot of head pain

I have curviture of the spine. I am having to take codeine, paracetomol and nurofen during the day due to the pain I am having which includes the back of the head. I have been to various specialists about my back, nothing more can be done as I also have respiratory failure. I am fed up with taking so many painkillers especialy when they don't work that well.

What can be the cause of my problem and what can be done? I even have been given a support by the pain clinic but it doesn't help the head pain only stops my rib hump rubbing.

I previously had an injection many years ago which helped the back pain, however when I last went to Stanmore I was told that they couldn't do it, which I can't understand.

I look forward to your comments.

Many thanks

[Back-out]

So very sorry, Liz!!

To get proper attention to your important query, suggest you start a new thread, and at that time explain more about your pain sources and history,

No one here is a doctor, mind you, and it sounds as if your questions require a lot of specialized knowledge, What has caused the respiratory failure (for intance) and what is your age? What angles and other measurements have you been given for your curvature? I wonder too what docs you've seen and whether they ruled out surgery. Or have you already had surgery?

Sounds just awful!

[jrnyc]

hey rohr
i just got back from 2 days in NYC and read your post about sleeping thru the nite...good to hear that! i hope it gets better and easier to do that as the days pass...

i saw pain doctor in NYC and got an epidural for the sciatica on my left side...so far, it is actually helping...and i am shocked...my expectations for this were very low!

i am so sorry that you are still in pain...am wondering whether you expect to get to zero percocet..and how that will go if you are still in pain...

hope you feel better soon...
jess

[rohrer01]

hey rohr
i just got back from 2 days in NYC and read your post about sleeping thru the nite...good to hear that! i hope it gets better and easier to do that as the days pass...

i saw pain doctor in NYC and got an epidural for the sciatica on my left side...so far, it is actually helping...and i am shocked...my expectations for this were very low!

i am so sorry that you are still in pain...am wondering whether you expect to get to zero percocet..and how that will go if you are still in pain...

hope you feel better soon...
jess

I would "like" to get to zero percocet. But realisitcally it probably won't ever happen. I have had it by my side, whether I need it or not, for the last decade or so. I'm hoping to get where I don't need the percocet daily. I'm not there, yet. I think I've had enough feeling sick for a while. I'm giving myself a month to get off of it if I can. I'm down to about 3 a day, so I'm doing pretty good considering that I was taking that much plus 50mcg of fentanyl at some point. The fentanyl worked for a short while, but eventually just lowered my pain thresh-hold. Soooo, thank you for the encouragement. I hope I have been an inspiration to others out there in my shoes!

[jrnyc]

i think you're doing great

jess

[mbeckoff]

I think that you are doing wonderful as well

Melissa

[rohrer01]

Okay, it's after midnight and today is a new day! I'm going to try a percocet free day and see how it goes. I'll let you all know if I succeed. You are a great bunch of supportive people. I appreciate you all very much!

[rohrer01]

Well I caved in just after 2:00pm. I went over 16 hours with no pain meds, though. So I'm still doing well. The pain just got to be too much and I DON'T want to end up in the ER struggling to get it under control. I'm having neck/upper back pain and muscle spasm in my lower back. Oddly enough my legs hurt SOOOO BAD on my upper thighs (on the tops). I don't know what that is from, unless it is residual muscle pain from my walking regimen that I never felt due to pain meds. Although, I haven't been walking that much since I've been detoxing. I don't want to add insult to injury just yet. I was up to about 2 to 2 1/2 miles a day (3 times a week at the very least). I took tylenol just before noon and it didn't do a thing. I am also watching my acetaminophen intake. They recommend not going over 3g per day. I'm only up to 825mg so I'm okay there. I also tried soaking in the tub. I tried going for a walk, and just a short walk hurt my legs so badly AND I got rained on. I'm going to suppliment with tylenol throughout the day. I don't know if I'll need any percocet tonight. We'll see what tonight brings. It's now been about 20 minutes since my cave-in and I'm already starting to feel better, although the pain isn't "gone". I can handle tolerable.
Thanks for "listening"!

[jrnyc]

i would expect you will feel everything without pain meds...walking that many miles a day should register on the pain scale without pain meds to cushion it...you probably didnt notice it before!
what could an ER do for pain....besides administer pain meds? better to take them at home by yourself!

jess

[rohrer01]

what could an ER do for pain....besides administer pain meds?
jess

Exactly why I "caved".

[rohrer01]

Well I thought I would give you all an update. I am unable to get off of the percocet. The pain just gets out of hand. I was down to 3 sometimes 2 a day and have had another pain flare-up. This time the percocet isn't touching it unless I take it every 3 or 4 hours. It's discouraging to say the least. It's not that the pain is way up there on the pain scale, but it is really wearing me down. I broke down and am scheduling an appointment to see Dr. Hey in North Carolina, as he seems to be the only one who has shown me a lick of compassion as far as SRS doctors are concerned. My neurosurgeon and my general practitioner, who has seen me struggle for the last 12 years both agree that I should have the surgery. The only ones that don't think I should are my pain doc and the surgeon that I saw back in May. I'm so afraid that if I have surgery it will end up worse. Dr. Hey thinks that because of how high my curvature is, it is putting a very heavy load on my neck and that is probably the cause of all this neck pain. I sure hope he's right because I'm ready to take the leap over to the surgical side. They need a "fear" emoticon. I really don't know what to do. Conservative therapies have failed me and I'm sick (literally) of being on narcotics. NSAIDS are out of the question as my stomach hurts so badly most of the time. Just another thing I need to go back to the doctor for. Is it just me, or is anyone else out there sick and tired of living at the doctor's office?

[foofer]

Rohrer,

I'm glad to hear you made the appointment with Dr Hey. I have the feeling this will be very encouraging. Will you have to fly to get there? Take the train? When is your appointment?

I still think you are doing great with your meds. You have downscaled considerably, so don't let perfectionism talk you out of feeling your success. It doesn't have to be all or nothing. Perhaps when your pain episode subsides you can cut back again. Bear in mind that I am speaking from logic which may not apply to what you are dealing with. (What I'm trying to say is that I don't really know what I'm talking about.) It's just that I feel supportive of you, your truth and honesty and efforts, and I really hope you make it with your goals.

Also I wanted to say previously when I read another of your posts...what the heck are you doing lifting your grandchild out of his carseat? I have a new grandchild and the other day I just moved in and started to unbuckle him and lift him out of his stroller. My stepdaughter was astute enough to say, "Hey let me do that" and I did it anyway insisting I was okay. What the heck was I doing? I have no business treating my back and neck that way and neither do you. I have noticed that the minute I overdo any efforts, my neck feels it first. Today my shoulders are strained and I have a neck headache. It happens so easily. So stop it, okay? And I will too. Deal?

Hang in there, please.