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Chronic Pain Support Group
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[02 Jul 2009|07:35pm] |
Am I the only one who is freaked out by the FDA potentially taking Vicodin and Percocet (and some other drugs like them) off the market?
I understand the issues with the tylenol component, but I am afraid that this will make it more difficult for chronic pain patients to get adequate pain relief. It seems like putting better warnings on bottles and getting better education from pharmacies and doctors on the subject would be a step in the right direction. This move that the FDA is contemplating seems drastic. I know that the narcotic component can be prescribed by itself (and then combined with tylenol), but somehow it seems like the tylenol component of things like Vicodin and Percocet help give them more of an air of respectability. If that makes sense. There are already so many doctors who aren't very comfortable prescribing pain medications.
Don't get me wrong--Percocet doesn't agree with me and I would take an abortive over a pain pill any day for my migraines. But my insurance only covers a certain number of abortives a month, and I usually end up with a few absolutely awful migraines that I need to push through with pain meds alone (which really are only minimally effective anyway, but so much better than nothing). I believe that diet and exercise and other lifestyle changes are important, but for some people that's just not nearly enough. (I am working very hard to find a preventative that works for me.)
I currently have a great neurologist, who helps me carefully monitor how much pain medication I use per month, but I will be moving to another city soon and I'm a bit worried about finding another sympathetic neurologist. Particularly considering this news.
Is anyone else feeling nervous about this? I just have a fear of being trapped with my pain. Maybe everything will be ok in the end....
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[26 Jun 2009|11:18am] |
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About two months ago, I sprained my rotator cuff and got painkillers (I think it was Darvocet) in the hospital.
Well, my pain management doctor found out about that and just discharged me from his practice!
I'm in complete shock and can't stop crying. Now I have this huge black mark on my medical record, so no one will ever send me to another pain doctor. And I'm on this really high dose of Avinza (90mg), and it's not the kind of pill that you can split in half to taper off it.
I don't know what to do. Has anyone ever had this happen? How did you deal with it? Were you ever able to get another specialist? I'm so upset and afraid right now.
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| Please help support |
[26 Jun 2009|10:07am] |
I've been lurking here a short time, but haven't posted yet. I'm here today because I need moral support.
My diagnosis is syringomyelia, a spinal cord disease. That's what it says on my chart. It isn't that bad yet, but I have had daily pain for a year and a half. What's getting me down is being shuffled from one medical test to the other, from one medical professional to the other, with nobody willing to tell me out loud what my condition is and what it means. I had some MRI's done at the beginning of this month, was referred to a neurosurgeon, who ordered a battery of more extensive MRI's. I have every scan on CD and know what's there. I have yet to talk to anyone about it, I'm just waiting. All I get from anyone is a big fat "gee, obviously something is wrong but you have to talk to the next guy" when what I really want is an answer from someone, anyone.
I was supposed to see the neurosurgeon on Tuesday and I was trying to hold it together until then. I got a call that he had to cancel. He wants to see me AFTER I talk to a neurologist, and that appointment isn't until July 9th. That's almost two weeks away! I cried on the phone with the secretary. I said that my first MRI was almost a month ago and nobody's been able to tell me anything. I got hysterical. She said she would have me put on the waiting list for cancelled appointments.
I pulled myself together and called my PCP for antidepressants. I've been crying more, it's been harder getting all of this out from under my skin and I've been losing my appetite. I eat small amounts throughout the day when my stomach isn't in my throat. It's not that easy holding it together, and all the love from those around me has helped so much, but it's not enough to keep me from tipping back into sadness. I try to think about all the beauty and support, but I keep slipping down. I need help so bad. Please tell me some kind words.
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| Too much sometimes? |
[22 Jun 2009|04:33pm] |
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Do you ever feel you are needing too high a dose of pain meds at times? I mean...my condition is only going to worsen and deteriorate as I get older. I'm 38 now and already feel like I have to take a lot just to get through my work day and not feel totally broken when I get home. Currently on Oxycontin 40 mg twice a day and 1 Percocet 10 mg four times a day for breakthrough pain. That is working very well right now, but I worry about when the time comes that it won't. I already know I won't make it still working to retirement age, especially in my current on my feet all day profession, but...I don't know. I guess I fear there will come a time when the debilitating pain can't be controlled very well at all.
Thoughts?
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| Fuck doctors |
[22 Jun 2009|10:14am] |
I called the spine clinic to check in on my referral.
I was told the soonest I could be seen was August.
I burst into tears (poor receptionist) and went off on how at 21 (22 in two days, happy fucking birthday me) I should not be dealing with back spasms that cause me to shit myself. I should not need to quit the dream job I JUST GOT before even signing my contract because the ER doctor told me to bed rest until my MRI and appointment with the spine clinic. I CAN BARELY WALK. Painkillers don't touch the pain, at least Valium lets me sleep. My feet and legs have been cold, numb, and occasionally purple without massage over the last 4 days. I need a fucking doctor before August.
She is trying to get me in tomorrow at noon. The doctor has a meeting but she is asking if it can be rescheduled.
This is ridiculous. I'm so angry.
And this is at Dartmouth-Hitchcock, one of the best hospitals in the region. I was driven 2 hours to be seen there after my local hospital said they didn't know what to do.
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| ER hell story and need advice in NH |
[19 Jun 2009|11:37pm] |
Today I went to the ER after calling my new doctor, worried because with my spasms over the last 24 hours I haven't been able to control my bladder or bowel. My pain level has just been terrible this week in general, but I haven't done anything to aggravate my back or anything. I had a full blood and urine work up that showed nothing earlier this week.
I was in the ER for 7 hours.
After 3 hours, my xrays showed a slipped disk at L5. I already have a sacralization at S1 that causes me problems. (I asked to see them, the doctor never came back) and my blood work was normal. They did a rectal exam and an ultrasound of my bladder; those are both healthy.
After 6 hours I went out and asked to release myself and my xrays to drive to the best hospital in the state (Dartmouth, I'm in NH) and get an MRI because I know that a slipped disk and not having bladder control, heavy, numb, and tingling legs all need attention as soon as possible. I should have left when I saw the doctor on duty but I needed help so I stayed. I hate the ER near me, I shouldn't have bothered.
That was the rant...
My questions now are,
Does anyone know a doctor at Dartmouth who I could see on a Saturday, that would be preferable to going to the ER again (though I have my records from today to bring with me)? Or, another doctor in NH that is good with spines and possible fibromyalgia?
Second, vicodin increases my pain, flexaril has no effect, valium relaxes my spasms but the pain is still there... I was given Ultram tonight, what have your experiences been with it? I know we all are different, I'm just curious.
Thank you all, and be well.
x-posted
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| Three errands |
[15 Jun 2009|07:52pm] |
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Three errands to run after work:
Vet to get medicine for The Dude
Fill car with gas
JoAnn's for fabric to modify new bellydance choli
Right, then.
On way to vet, get bad pain flare. Crap. Can't bail on vet, as The Dude needs medication.
Grit teeth, go to vet and get medication. Want to play with bouncy Jack Russell puppy in waiting room but...uhh...bouncy and might try to climb up legs currently in pain.
OK, glance at gas gage. Maybe I can just get gas tomorrow and forget about JoAnne's until weekend. Drive home. Feel OK enough by the time I pull into driveway that I decide to go fill up car.
Still feel OK enough that I decide to go to JoAnn's. Pain flare while I am waiting in checkout line. Checkout drones are slower than molasses in January in the Upper Peninsula of Michigan. Trying not to whimper.
Drive home. Trash cans need to be put out front, but leaving that for Himself.
Too tired from three little errands.
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| Personality |
[15 Jun 2009|06:18pm] |
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I've been thinking a lot lately about how chronic pain (15yrs in my case) has changed my personality. I've filled out memes with questions where I don't know how to answer. The "real" me trapped inside this pain-riddled body would act one way. But the me I'm stuck with must, out of necessity, do the opposite. I like to see friends, get out often, make firm plans. Pain keeps me home, alone, with almost everything penciled in then erased :'( I hate it, yet it's my reality and I can't change things. It's just another crappy side effect I guess.
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| Hi, again. |
[07 Jun 2009|05:46pm] |
Posted here awhile ago about having horrible back pain in my neck and shoulder blades. It still hasnt stopped. Tried ANOTHER chiropractor (5th one), and another massage therapist, to no avail.
Tylenol no longer works AT ALL. I'm taking my boyfriends' Hydrocodone. Half a pill used to get me through, now it takes a whole pill but that makes me high (not a good thing).
ANYWAY -- This is probably a dumb question, but can someone tell me what I would expect if I went to a general pain specialist (if these people exist)? I have been to neurologists and a doctor that deals with shoulder and back pains and nothing has helped. Also any other suggestions would be great.
Its at a point where I can't function without the Hydrocodone and I'm sure that its killing my liver/stomach, judging by the blood I've been puking up recently.
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| Pain tolerance out the window |
[07 Jun 2009|03:48am] |
I'm in such a pain fog. I can't sleep, I can barely get up to walk. The demand on my already burning muscles is just too much. Its 3am on my second to last night before camp. I can't be getting these spasms now, I can't be in this much pain. I need to work. I need to function. I thought I had finally found a way to keep the pain minimal, yes, many nights I would still be in tears, but I could get through the day, I could walk, laugh, breathe, without pain. If I had insurance I am at the point of giving in and seeing a doctor, but I don't know who to see anyhow.
"Hi, my entire body feels like it is on fire and my muscles feel like they are ripping away from my bones and tying themselves in knots. But I look like a healthy young adult. Help?"
It would be useless anyway. I can't take conventional pain meds and still keep my job. My entire livelihood is based on my ability to function.
I am just so worn down, I feel like a crotchedy old lady. I can deal with the level of pain I am usually at. I'm used to pushing past it to function. I can't push past this, I can't even get my brain to work at a normal level. I have to pause after every second so the cramping in my fingers starts to subside.
As usual things are centered in my shoulders, neck, and lower back on the left side. But that is my baseline pain, just magnified. My arms have that ripping muscle feeling and my fingers are so stiff and cramped that I couldn't hold a pen. My leg muscles feel like they disconnected and lumped into a big ball that is now trying to bring my bones in as well. If that makes any sense to anyone else.
I'm drained. I need something that lets me sleep at night. I'm half hysterical from pain and lack of sleep all at once.
List of things I've tried:
5 HTP
Hyaluronic Acid and MSM
Sam-e
Passionflower
I do yoga daily, even if just for a few moments to try to stretch my aching muscles
Liver support and detox as recommended by a naturopathic doctor I was seeing for possible over production of cortisol.
Fish oil
Bromelin
I've had vicodin once and it left my body feeling like a limp noodle aside from the one spot at my L5, S1 (I have a lumbarization in my back that I saw a chiropracter and physical therapist for but nothing helped. NOTHING. It shouldn't cause pain they say.) where my pain is centralized, that was throbbing and spasming like no other. Terrible experience.
Acai and other super foods
No refined sugars, flours, soy, and no dairy
I also meditate at least once a week, I try for more frequently.
And more, this is all I can think of now.
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| California Coast Classic |
[05 Jun 2009|11:17pm] |
*waves* Hey everybody, my name is Whitney Delk, new to this community. I come here today for several reasons, #1 being I do not suffer from arthritis, but expect to have it sometime in my lifetime because both of my parents are crippled from it, and #2 I just recently registered for the California Coast Classic, a 525-mile bicycle ride leaving San Francisco on Saturday, October 3 and ending in Los Angeles on Saturday, October 10. Sorry if this kind of thing isn't allowed, I will most certainly delete my post and refrain from promoting this event. If you're still curious, please read on
( cut for my pardon )
Once again, thanks for reading and I hope you are all having a good day.
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| Women needed for Online Survey about Arthritis and Physical Activity |
[05 Jun 2009|03:34pm] |
Hello, I am a research coordinator in the College of Kinesiology at the University of Saskatchewan. I am working for Dr. Nancy Gyurcsik, who was given a multi-study research grant by the federal granting agency the Social Sciences and Humanities Research Council of Canada (SSHRC). The purpose of the grant is to study what may or may not keep women with arthritis from doing physical activity. We are currently recruiting North American women, at least 21 years of age, who have been told by their doctor that they have any type of arthritis. To participate in this study, these women only need to fill out 2 short online surveys, which can be done from any computer. The first survey takes about 25 minutes, and the second is a 5-minute follow-up survey 2 weeks later. All participants and their answers will be anonymous. (The University of Saskatchewan Research Ethics Board has approved this study: Beh # 05-230.) Women can do the survey online by typing in, or copying and pasting, the following web address: https://survey.usask.ca/survey.php?sid=14109 We would greatly appreciate your time and help with this important research! Please feel free to share this link with friends or relatives who are affected by any form of arthritis. The more participants we can get for this study the better our information will be. If you have any questions, please feel free to email me (arthritis.study@usask.ca) or contact the lead researcher, Dr. Nancy Gyurcsik, by telephone (1-306-966-1075) or email (nancy.gyurcsik@usask.ca). Thank you very much! Karen G, M.Sc. Research Coordinator College of Kinesiology, University of Saskatchewan arthritis.study@usask.ca |
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| How does it feel for you? |
[03 Jun 2009|01:33pm] |
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My sister in a moment of bitchiness or just general thoughtlessness, said that there was nothing stopping me from doing anything. I was stunned into silence.
At a basic level, she is right, there is nothing stopping me, nothing that is, except my body. The constant, relentless pain that is seeping into every area of my life. That it is a struggle to get dressed in the mornings, that four hours sleep is a luxury and even when I do sleep, it is never restful and I often wake up with bloody scratches on my back where I have tried to rip the skin off because of the incessant creepy crawly feelings.
Let's not forget the medication, the stupid balancing act of pain vs side effects and the constant temptation to give up and just live in a medicated cloud for the rest of my life.
How about the humiliation that the only way to cope is to concentrate on the small successes which have been few and far between, knowing all that I could do before.
I wish that I could have the ability to touch someone and they could feel my pain and the desperation and see how they would cope.
I wish I could show her what it is like, but if I ever did, it would be classed as torture.
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[22 May 2009|09:09pm] |
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I'm pissed. I went to see my pain doc on Monday and got my meds refilled and headed to CVS like I always do. He gives me 60 Vicodin per month, like he has for a long time.
So I get it filled and am told that my insurance will only pay for 30 pills a month, so they could only give me half of my script. I offered to pay for the rest out-of-pocket, but they said that they can't give it to me at all unless insurance will pay for it.
I've never had this happen before and it sounds like a load of BS to me. Wouldn't this mean that people without insurance couldn't get meds at all? Something just sounds very...wrong with this.
Can the insurance companies do this? I can pay for the rest. It's not much more than my co-pay. I just don't know how to approach this and get my meds without looking like a pill junkie.
Goddamn insurance companies. Why do they make things so hard for us???
Edit: The problem seemed to be the particular CVS I had it filled out. I went to my "regular" CVS, explained the situation, and they gave me the rest of my meds no problem.
And so I'm not just bitching, does anyone else have Sjogren's Syndrome? I was diagnosed with that a few weeks ago and am still researching it. What I'm reading isn't too positive, but is anyone else dealing with it relatively well?
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