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Chronic Pain Support Group

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[22 Oct 2014|01:11am]

OK so here's something interesting that I found out today. Several CVS pharmacies in my area are out of all the different strengths of hydrocodone. They are saying it's back ordered for at least a month, and are recommending that one goes to their competitors, or find a different kind of pain killer... Are you guys having the same problem since it has become a triplicate? Or has any of your doctors taken you off of it since it's become a triplicate? Has anyone's doctor switched them to Tylenol #4, claiming that it is "basically the same thing as hydrocodone"... What's your experience for those of you who have been on both? Have you noticed a difference? Or are they basically the same thing?
Just asking. Because I was switched.... and well. I'm not too entirely pleased. Quite pissed with my doctor when he said it was basically the same thing, and all it felt like was taking two Tylenol #3's. And wanted to know if anyone felt the same way. IMO it feels like the hydrocodone works better... But wanted to know if anyone thought on the same wave length as I do.... As used to take the 2 tylenol #3's every once in a while and they do work. I want something that works in the long run.... and the Tylenol #4 just isn't cutting it for the long run. Now if it were something that I could alternate with the hydrocodone? Sure. But I don't know if my doctor will fly with that idea unless some other people had the same experience as I do... if that makes sense.
So thoughts?

x posted.... sorry if you see this more than once
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[18 Oct 2014|12:26am]

So I just got my letter from my HMO/doctor saying that I need to have a special appt to discuss my benzos and make some kind of 'care plan'. Also there are changes in how the rx will be filled/picked up (I think more frequent and maybe in person instead of mail order?).

I knew this was coming and still it is annoying. I am drafting my 'care plan' in my head and the truth is that even though it is surely motivated by them needing to comply w some stuff I would like to use this to make a reasonable care plan for responsible long term use of drugs I am likely dependent on.

What I've come up with is that I agree to taper off them when I stop having such severe and frequent trauma/anxiety attacks (Ie I expect my trauma/anxiety symptoms to continue to respolve after a major anniversary next fall) and when my menstrual cycle becomes more infrequeny (Ie I expect to NOT have as many migraines as I progress through perimenopause).

I think that will likely satisfy both of my docs, one of who thinks I should use this as a reason to taper off NOW and the other one who I have recently talked to about my concerns about where my substance use was going re my chronic pain.

How are other people handling similar policy changes around benzos and opiates?
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tramadol [19 Aug 2014|11:34am]

[ mood | in pain ]

so...has anyone else (US-centric) been screwed over by the whole tramadol mess?

tramadol has been thrust up a level by the DEA. so, as of monday, pharmacies had to stop selling entirely, CANCEL all existing prescriptions, take an exacting absolutely-counted-by-hand inventory (not sure how they do that with sealed bottles, though), send in forms to the DEA, and change the way the scrips are handled, from being able to be submitted electronically to ONLY submitted on paper with the doctor's DEA number clearly written on them.

my doctor quit prescribing *at all*. did she bother to tell me that this was going to be her new policy when i saw her not a month ago and i ASKED SPECIFICIALLY about this issue? of COURSE not. did she bother to return my call *yesterday*, when i called her in the morning? of COURSE not.

she's good enough at other aspects of my care that i'm not dumping her as a physician.

how, though...how does one go about finding a pain care specialist that is not a) a quack who believes that you can do this without any medication at all, b) someone who basically operates a pill mill and will be raided/shut down in a short amount of time, and most importantly c) will actually LISTEN and take my issues seriously? (fibromyalgia does not exist after all...)

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It's been a difficult day: [05 Apr 2014|07:22pm]


I've been having some physical withdrawal symptoms because I'm still backing down on pain-killers and anti-anxiety medication. Of course this "process" has been going on for months, and I've posted on this new "odyssey" before.

The good news is that my doctor called Stanford Pain Clinic back, told them what I've been doing, and continue to do. Apparently they feel I'm sufficiency dedicated to being at a "safe" opiate level, and a safe anti-anxiety drug level.

I should fucking think so! I've dropped significantly every month! But my pain level, for the most part, has been okay. It's seems that, instead of taking ever-increasing opiates, my body was ready for a "reset."

That's the only thing I can think of. There's no other reasonable possibility. A "reset" is the only thing, (other than the help of the Universe,) that's been allowing me to reduce month after month without being in terrible pain. My partner and my friends have been incredibly supportive, including my online friends, so that's helped on the emotional/spiritual level.

The past few days, and the following few, are going to be a little difficult. (I've become aware of the dynamic, so I know what to expect.)

It's a small price to pay for access to Stanford's cutting-edge technology. They have some truly amazing ideas. The tech is trying to drive the spinal injury field forward, and from what I can gather, it's working at the moment.

I'll see what Stanford says on Tuesday.

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dealing with the cold [20 Nov 2013|07:36pm]

i feel a little silly even making this post, but any of you with arthritis like issues, how do you deal with the cold? at the moment there seems there's nothing i can do to get my right shoulder in particular not to be bothered by the cold. i've got the heating on, i can place as many jumpers on it, in addition to wearing a jumper... i don't understand it at all really. it just won't get warm. granted, it's not a sauna in my flat, even with the heating on, but it's not going to get better than what it is currently, because it's an old house full of drafts (which I can't block up, they are there on purpose, as this kind of house requires to be drafty for it not to rot or something).

i'm not entirely sure what's going on, as it just seems so ridiculous. does anyone else have this kind of problem and have any insight into what might help? I just want to keep the shoulder warm, not the rest of me. right now while typing this even if feels like the rest of my body is very cosy and warm, but that iv'e got a massive, painful iceblock for a shoulder.
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New Blog Entry [03 Mar 2013|11:31pm]

One Room. One Day.

Please comment here or there, as you prefer.
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New Blog Post [16 Feb 2013|11:59pm]

Pain, But No Gain

Please feel free to leave a comment either here or there, as you wish!
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New Blog Entry [31 Jan 2013|11:50pm]

When Honey Works Better Than Vinegar

Please feel free to comment here or there!
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More questions... [22 Dec 2012|09:27pm]


I know I've been asking a lot of questions lately, and I'm sorry about that... I'm just kinda lost. So if you can put up with me again here we go....
Ok so lately my migraines have been a hell of a lot worse, not like the Beatle bit my arm hurts its the I've got second to third degree burns hurts. The searing pain that won't let you focus on anything except that. There are new symptoms that have come up just in the last two weeks that I am scared to seek medical help for just because of how the hospitals are around here. Part of my left arm has gone completely numb, but I still have function. And my face will randomly start twitching, kinda like chipmunk cheaks or something moving super rapidly, my eyes will twitch with this as well. I know that it's going on, I just can't physically call for help when that happens. Then there are the nose bleeds that are now starting to throw (sorry tmi here) clots while bleeding, and that will last for a good solid fifteen minutes. The damn nose bleeds were already lasting a decent amount of time, but nothing like where a light tampon (which I don't even need for my periods because they are so heavy) is a good nose bleed plug. Yes I got that out of a movie, but it works really well.
Anyone here, can ya toss me a bone or something. I don't have decent insurance to get halfway decent help. The ER sucks. I'm basically stuck in this hiatus mode where nothing changes, and I need to get out of this. I don't know what to do with all these symptoms that are now showing themselves up to be a pain in the ass.... Errrr head........ But any thoughts on how to cure them cheaply? Maybe? So yea I still to my first plea, toss me a bone or something?

PS- sorry if you see this more than once

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New Blog Post [04 Dec 2012|03:23pm]

On Infiltration of the Other

Please share and feel free to comment here or there, as you please.
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Help? [28 Nov 2012|06:33pm]

[ mood | sore ]

I've been experiencing bone and joint pain and weakness for over 10 years.  It all started when I was 12 and broke my left foot.  The same day my cast was off, I broke my right ankle.  I never received any check-ups or physical therapy after these consecutive breaks and I suspect that may have led to my current and worsening problems.

Until this past year, the pain and weakness have been limited to my hips and ankles and only occurred 55-56% of the time.  However, recently, I've had new pain and weakness in other areas and it's all occurring about 90% of the time.  The pain is very sharp and by weakness, I mean that whatever joint is experiencing pain won't hold my weight at all.  It's not that it hurts too much, it just physically buckles and won't work.

The new pain and weakness happens in my left collarbone and just on the right side of my spine where my tailbone begins.  When my collarbone acts up, it will pop in and out of place for up to days at a time and I can't lift anything with that arm.  With the new back problems, the pain and weakness are extremely bad whether I'm walking, sitting, or laying down.  I have found that I can kinda shuffle sideways and that alleviates the back problems, though it makes the ankle pain worse.

Also, I've needed to use a cane and wear a compression bandage on my left ankle to even be able to walk.  Without both of those, I either have to crawl or lean heavily on the walls of my apartment to get from room to room.

I've seen two GPs dozens of times and one orthopedic surgeon twice about this.  They've poked and prodded me; watched me walk, run, and try to balance; taken more x-rays than I can count; done blood tests for lupus [which my mother has]; and done blood tests for arthritis.  Nothing they've done has come up with anything and they've just shrugged it off as a mystery.  My psychiatrist pisses me off because he thinks it's all in my head and isn't real.

OTC medications and prescription arthritis meds [which were given to me despite the negative arthritis tests...] do absolutely nothing for the pain.  I don't want to be put onto heavy narcotics.

Under the cut are illustrations of where the pain occurs.

Basic human forms, one has a butt. You've been warned.Collapse )

This recent back pain is absolutely debilitating me.  I need to see my doctor about it, but I want to be taken seriously and need to know what to ask for or even have some suggestions to lead him to what it could be.

WTF could this be?  What should I ask my doctor?

ETA: I just made an appointment with my GP for December 5th. I'll ask for an MRI and a referral to a rheumatologist.

ETA2: I just remembered another symptom that's eluded my doctors.  Whenever I'm touched [by myself, another person, or an object] gently or with moderate force, it feels like I've been punched hard.  The pain can linger for hours and I never bruise from it.

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What life is this?? [17 Oct 2012|11:04am]

I have an autoimmune disease that results in chronic pain and exhaustion. My movements are limited, and out of every month I get about 2 good days. 2 days where I'm not too tired to move, or in so much pain I can't speak.
That's 24 days a year.
This disease is an invisible illness for which there is no cure, no real effective treatment, but is not fatal.
I will live this torture for the rest of my life, every year getting worse.
My friends are abandoning me, my family is forgetting me, and I am disappearing into this.
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a pain update [16 Oct 2012|01:06am]

Here is an update on things that I think some of you will be able to relate to. And even if it takes me forever to get back to you, please share your experiences with me. I'm listening, even if I can't get the stiff fingers to respond right away.

My entry at my journal
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[07 Aug 2012|07:52am]

Just an update over on my journal that isn't too depressing to share:


The road is still bumpy and difficult, but I'm still trying my best.

I was thinking lately how difficult it has been to truly accept the fact that this is actually happening to me. Me. This isn't someone else, I'm not watching a loved one go through this; it's happening to me. In the back of my mind, it's like I always expected it, considering my family's genes and watching them all become diagnosed with RA and other varying auto-immune diseases, but it still shocks me some days.

Does anyone else have a similar experience?
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New blog post [18 Jul 2012|06:58pm]

Stewed, Blued, and Tattoo'd

Please comment here or there, as you wish!
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A Question to those of you who take/n Trazodone? [20 Jun 2012|05:59pm]


First things first, sorry about coming out of the shadows, for I really don't post much outside my LJ. So here goes my ramble and I hope you can keep up.

The thing that I'm on it for is mainly to sleep, and am allowed to take anywhere from 100-200 mgs. I've having some freakish side effects, and I'd like to know if you've dealt with & they went away or something of the like.
Muscle Stiffness that leave me ridged for most the day. Can't Bend down and Wish I didn't have to turn my Neck or Back.
(yet it says it's good for chronic pain, of which my body is guilty of putting me through for the past forever)
It Makes my bones feel *raw*
When I get up there is very little time when it comes to me feeling like I've got to go back to bed.
Muscle relaxer doesn't work
Nothing helps the random chronic pain flare up move something and opps, on top of the normal kill you daily for the next 3 lifetimes flare ups.
So pain pills out.

There some more... But brain has signed out for the day. Have any of you dealt with something like what I listed above? Worse? What'd you do? And should I just tell my Doc to stop giving me said Trazodone?
Thanks for you're Help. I've pretzeled myself in with this in a way. Just don't know how to handle it.
Cuz yea I'm smart like that. ^-^v
Thanks again.

PS-- Sorry if you see this more than once

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New Blog Post [17 Jun 2012|10:05pm]

Lost in Translation

Feel free to comment here or there, as you wish!
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Help spread awareness! [16 Jun 2012|03:31pm]

[ mood | hopeful ]

I created an online petition back in April, urging President Obama to devote more funding toward lupus awareness and research -- you can still add your signature here!

I personally chose to address lupus, since that is my primary chronic pain issue right now, and one that I have discovered, sadly, to be woefully underrepresented in today's world, especially considering the large (and constantly growing) number of people living with autoimmune and other issues today. But I urge everyone to create their own online petition on The Petition Site -- it's totally free, and only takes a few moments of your time. You can spread the word by emailing your friends and family, posting a link on LJ, FB, Twitter, or whatever social site you're on, and take it from there!

Even if you're in a lot of pain and it's hard for you to do a lot of things, this is one thing that just about all of us can still manage. I really have no idea if online activism truly makes a difference, but I like think it does -- I find that optimism and these kinds of efforts not only make a difference in the world, but also in our own attitude and outlook, which in turn affects how we feel.

Please join the fight!

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[04 Jun 2012|12:16am]

I just posted this in my own journal, and thought I'd also put it here, in case anyone else has suffered from this same kind of thing:

One thing about chronic pain is that it’s hard to see. Many times, people don’t exhibit it on the outside. If you look close enough, you may see it etched in the lines of their face, or see it in the way they walk, hold themselves, move around. It’s there but it’s not something that shows a physical scar.

I can still sit here and click a mouse and type a few sentences at a time. I don’t have to completely stop my life and live in the despair of my pain. So when someone says, “Well, you can sit on the computer all day and laugh and joke around, so you seem fine to me. Why can’t you do [enter physical activity here]?”, it is always a challenge to try and explain in a way they’ll understand.

I can joke and smile and still love my friends, family, and life, despite the 24 hour pain. I can play on the computer. I can watch my favorite shows. I can help out someone if my body permits it at a certain time.

It’s no use trying to explain it sometimes, though. Because some people will just never understand. But I don’t blame them. They don’t feel that pain; they don’t understand it because they’ve never felt it, and I just hope they find the patience and understanding some day to look past the outside.

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New Blog Post [23 May 2012|10:57pm]

Not Your Social Experiment

Please feel free to comment (here or there) as you wish.
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