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Old 07-21-2007, 04:48 AM #31
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I agree about talking to your doc. I jus came from a pain program where the only meds allowed were the anti depressents. We were educated on the why's and I see both sides. I did express cause I have never had the overuse issue that I feel it needs to be on ones needs. There came a point in the amount of physical therapy they had me through that mental coaching and writing about how I feel about the pain didn't cut it. I still have been off all the pain killers like vicadin,tramadol for a few weeks and though my pain is horrible I feel better in certain ways. They are thinking for me doing that epidural where meds are put in all day but I'm waiting to see of progress on my own. I do know the frustration your in but as a person who has high liver enzymes and I know those pain killers add to this I don't want to sub one issue for another so you may want to think of that too. Maybe getting a feel on the why from your doc and then weighing your options. You want to think long term too. Hang in there.
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Old 07-23-2007, 09:15 PM #32
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Originally Posted by Hurty View Post
Word, Dakota.

I am on the Lyrica at a low dose for about 3 months 2x a day and the pain is greatly controlled...don't usually get pain until my day is winding down...7 PM. Sometimes it's not enough on the pain/disruption of life scale for me to take anything but about 60% of the time I take 1 5-500 Vicodin and it does the job. Now, my Dr has indicated that she'd like me off of the narcotics but I don't get any euphoria from this dose, I don't have a dependence on it...I've gone 3+ days without taking one. So why should I switch to, say, tramadol? It's just something new in my regimen that may or may not be fitted in easily...Why upset the apple cart, if you will? I feel like I've had to try so many different things over the past two years that I've been seeking treatment that now that I'm almost on a level plane, I'd like to try and enjoy my life for awhile...keep things status quo..
Tramadol is an opiate type drug. It works well for me. I take it several nights a week at this point. If I'm not mistaken Tramadol has been around for some time. It's prescription name is Ultracet. Oddly enough, I'm sensitive to all the other pain killers out there. They put to me to sleep and one dose can leave me groggy for two days. Tramadol has the opposite effect on me. It wires me. For me this is a *good* side effect! That's one of the things that has kept me off most of the other drugs out there used to treat both RLS and PN. I feel like I have no kind of life on the other drugs. To be fair I've not tried the newer ones and to be honest I'm not sure I want to. I always seem to get the worst of the sides of any drug prescribed for me. So for now I'm sticking with the Tramadol. It works and works well for me with minimal sides.
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Old 07-25-2007, 02:56 PM #33
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I do plan on discussing this w/ my doctor (see her on 7/30), see how she likes the 'more active' role I want to play with my treatment. She doesn't seem to specialize in small fiber PN but since I appear to be on the right path I don't know that I see the point in going to a PN specialist until or unless it really makes sense to begin that process of rebuilding a relationship with a new doctor. Hi, I'm new, give me some vicodin. Don't worry, I don't abuse it. Doesn't work so well...

My PCP recommended a rehab/physiatrist route months ago when I was in bad shape <read: cymbalta and requip and 24/7 pain> and taking 3 vikes a day and I was really agitated with the suggestion. Problem is untreated pain, not the 3 vikes. I have a good relationship with her and I know she was trying to be helpful but it's not like there was anything specific to rehab. I didn't have any surgery, complications, diabetes, comorbid condition, accident, etc. My legs just have always hurt--but it didn't used to be all day and every day. I'm not thinking that 'learning to live with the pain' by writing out my feelings is going to do a damn thing. I'd rather burn my eye balls out with white hot pokers.

Now, I truly don't mean to be harsh.--And daniella, what a crap fest that you've got additional complications that make the no pain meds road an almost forced path--One just tends to read more not-good stories about rehab/pain mgmt places than good ones. I know there's a protocol they must follow because some of the non-pain med things DO work for some people...yada, yada, yada.. But, in this societal environment where prescription meds are close to surpassing illegals as recreational drug of choice (it was on the CNN ticker a few days ago), I understand that everyone will get a higher level of scrutiny.

Jarrett, the last thing I want is being wired since I'm taking it at wind down time! I'm not saying I won't try the ultram either..I'd just prefer it to be on my own timetable if I can make it so!
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Old 07-26-2007, 06:20 AM #34
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Hurty, first if I'm confused about your statements I'm sorry. I think for me finding the right combo. I think the program I was in and though couldn't complete cause of how bad my pain was was helpful. In the way that it pushed me to do more through the pain and work through the mental and physical ups and downs. I think the part of writing my feelings has helped in some ways but like I said there was a time where doing that was not acceptable form of humane treatment in my case there. I had went from basically bedrest to being on my feet full days and in pt with swimming so on. There needs to be a combo and maybe if you keep an open mind and work with meds but also rehab it may work so you can have less meds. I know the mental part does not take away from the pain but working on coping can make it easier to deal with and to take the next steps. There was a post about coping here and I was confronted on my past thread how my coping was not good and still may times is not. I'm not sure what a pcp is but maybe it is time if you feel not being helped to go to the specialist. I know my last doc I saw really helped me realise how important though so painful to be on my legs and rehabilitate them. I still fear making them worse cause often feel it is but hopefully in the long run will make it better. I'm also in a different issue then some here to so get different advice I feel sometimes based on my age and also this is my only dx and is supposed to be treated similar to rsd. Ok take care and use your voice.
Jarrett I understand with you and I have the worst issues with meds. Its like switching one issue for another. Jarrett I was on tramadol which didn't help but my doc wanted that rather then the vicadin. Are you on slow release cause I heard that is better for long term. I was just put on doxipin has anyone used this and its in addition to cymbalta. I hate new meds and also why I fear the catheter.
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Old 07-26-2007, 01:47 PM #35
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daniella, just to clarify, I wasn't trying to indicate that pain clinics aren't good options and that they don't work for anyone (just in case my previous post was jumbly).

I'm glad it helped you out some <yay> but I'm also not clear on your story, if you will,...spinal impingement, degeneration, diabetes, surgery, car accident, etc.. I was just trying to relate that since I personally had no precipitating factor/disease that resulted in the pain, physical therapy and other standard injury recovery (and related) programs probably wouldn't fit in well.

pcp = primary care physician

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Old 07-26-2007, 02:03 PM #36
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Actually the pain clinic was not good for me in the way intended but did show me I have to push more through the pain and I need to cope mentally better. I'm not sure how my pn started. It may have been because I overused it in exercise with the result of this or from years of eating disorder though healthy now with that. There is no real answer. I do know for me they have stressed since my treatment needs to be like rsd treatment though not it I need to do a lot of physical therapy. I fear that but have really been pushing and the program showed me that I have to. I didn't mean to offend you if I did. I really think everyone is different. I think for me I have such issues with meds and I am young which is a big factor with already high liver enzymes the meds are not the greatest for me. So for yourself are you worried about the long term issues with meds like vicadin? I know you said you were on Lyrica low dose but have they thought of increasing so maybe you would need vicadin less? I have no clue and am sorry not much more to offer. Up till this year I had never heard of this issue or these meds. I learned more about them at the clinic but really don't know how long a person should be able to stay on vicadin or similar without bad side effects. Take care.
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Old 07-26-2007, 02:39 PM #37
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There are some people who simply can not take any SSRIs, tricyclics or tetracyclics, so their options are limited.

Besides small fiber neuropathy, I also have herniated discs in my t spine that are inoperable and I had 3 spinal nerve root blocks I wish I had not had. To get to those discs they have to do open chest surgery and move over my internal organs and deflate my lungs and cut ribs, hardly a recipe to relive chronic pain. Besides that, I had spinal anesthesia for 3 c-sections back in the 70's, due to an episode of anesthesia awareness for an emergency c-section for my first child. Can you imagine waking up during that open chest surgery?? My current neuro feels my spine has had too many intrusions, so he isn't keen on any more pokes in the spine for me.

It is obvious that I have some polymorphism that makes me not tolerate drugs the way normal or average people do.

I just tried a second trial of Cymbalta and failed miserably getting so sick I was bedbound. I have reacted like this to almost every SSRI, and feel that I should be probed for a possible Carcinoid, or at least typed for a Cytochrome P450 polymorphism.

I have a very limited repetoire of tolerable drugs and unfortunately if I really want pain relief it has to be an opiate, and I seldom get a script, or have to ration it so judiciously that I still rate a 4 or 5 on the scale. Plus, opiates do not sedate me, they cause paradoxical excitation. Benadryl, chloral hydrate and other drugs that knock most people out, cause me to be up for days, not to mention the restless leg, arm and back I get.

Every intrusion into the spinal canal has potential for scarring and other issues as well. As far as exercise goes, yes it is good and it needs to be adapted to your condition...however, I was a sprint triathlete, and I hurt as bad when in shape as when out of shape....Movement is important to keep our bodies in working order. We were not meant to be sedentary. Moderation is key, but it still hurts to do.

I think every person needs to find their own balance, take as few meds as possible, keep their stress level manageable, exercise as tolerable, work to resolve emotional issues that come with disease and trauma, eat as healthy as possible. It is difficult to live with a condition, especially if idiopathic, that causes pain and disability, and doesn't have a treatment or cure, or predictable prognosis.

I am not fond of pain clinics, as you said, they only permit antidepressants, and that is very simplistic. Before antidepressants are administered, I believe the patient should be genotyped. That is just my opinion.

Antidepressants are the most prescribed drug. I just do not see them as the panacea they are made out to be. On the otherhand, narcotics need to be reserved for cases that have demonstrated clinical pathology, have not responded to other treatments, have no reasonable possibility of recovery via other modalities. No matter how sick or injured you are, narcotics are stigmatizing, and will affect how many medical providers view your case. It is the world we live in.
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Old 07-26-2007, 03:55 PM #38
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I'm using the regular generic Tramadol. I only take it when I need it. Which is usually a few nights a week.
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Old 07-26-2007, 04:05 PM #39
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Quote:
Originally Posted by daniella View Post
I had bad reactions to neurontin too. I'm having such a hard time with meds. When I was on cymbalta 30 I was fine and took it at dinner. The first few days of the 60 I was fine but then I was so nausea last night I was on the floor in the bathroom. I didn't throw up though. I wonder if I could split it up and it would be easier on the systom. I will try though again though tonight before I ask.Jarrett what meds are you on now?
I thought I'd answered this already. Guess not! Sorry about that. Other than my vitamins and supplements I take Tramadol and Atarax. Only when needed which is usually a few nights a week. In order to sleep when taking Tramadol I take 1 Atarax per every Tramadol. So I took two of the 37.5 Tramadols I take two 10 mg Atarax. That's pretty much it for my meds at this point. I've been off the Effexor XR for over a month now and about 4 months off the Gabapentin.
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Old 07-27-2007, 12:05 PM #40
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cyclelops -- I'm the same way with benadryl, nyquil, tylenol PM, etc. I get wired immediately! My hubby, OTOH, nyquil knocks him right out. It's not fair! I also didn't tolerate any SSRI's--and they didn't do anything for the pain either so it wasn't a hard choice when it was time to stop..and I've tried a few. As I've said before, I'd like to find one person who isn't depressed and is using cymbalta successfully just for nerve pain. I haven't really been able to find any. They must be so successful in their treatment that they aren't actively posting on PN boards!

daniella, you didn't offend at all, no worries. I think maybe I just don't know enough about pain clinics and their approach to treating folks with pain who aren't a) addicted b) drug seeking c) recovering from surgery or accident...

If that sounds confusing, I guess I mean I understand rehabbing from stroke, broken leg, etc. And I also understand that people sometimes have adverse recovery from these things where the pain level doesn't die down (is that the RSD? not sure). I completely understand the aspect of getting someone with an intolerable pain level to find and learn alternate ways to cope so that they may ultimately be able to live with less hard core pain meds and still have a life. I'll just go kicking and screaming down that path if and when I end up on it.
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