Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 01-07-2008, 06:19 PM #11
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Default Opana ER is my pain control of choice

I can't offer much as my pain levels aren't like some of yours...but opana ER is great for me. It used to make me a little drowsy when i first took it, but it only lasted a short while and now my body is quite accustomed to it. I started on 10mg 2x a day. After surgeries i was taking 4/day for a while there. I added effexor to the mix and now that I am stabilized, i am trying to taper down to 5 mg 2x/day

Cyn, what dose are you on? It comes in 5, 10, and 20mg (possbily more) Having pain without the pain medicine does not mean you are addicted. It just means the medicine is doing what it is supposed to do.

Opana is oxymorphone, and will hit different pain receptors than some of the other opiods. It might just be the right new trick for an old dog...so I'd vote that it is worth a shot. I agree that nightmares are a bad thing, however brief. Remember, though, that opana is a year (or 2?) old, so not everyone is up to speed on it's existence.



feel better

Johanna
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Old 01-07-2008, 07:26 PM #12
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Oh, I just wanted to add a quick thought.

Several years ago, I was prescribed Codeine for a serious ear infection. That stuff caused me to hallucinate too, (although not nearly as intensely as you are experiencing). This reaction was and is considered an allergic reaction. No one will consider prescribing this medication after I told them of this. I do not know if the Methadone response is short term or not, but it is not acceptable.

Also, you mentioned that Kadian was a 'non-worker' when you first tried it. If it did not harm you, it might be worth revisiting in a different dose as obvioulsy you situation has evolved radically in the last few years.

Are you forced to use only 'work comp doctors'? If you have other insurance, I hope you try having a 'regular' pain specialist look at you with a proper anyalysis from the ground up.

If Opana ER works for you, this will only be clear when you try it. Either way, I hope you get off the Methadone...YESTERDAY!!

Anne
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Old 01-07-2008, 11:47 PM #13
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In my w/c situation, I am absolutely tied to these doctors and it took a whole year to get a new pain management doctor. RIDICULOUS! During that time, with help from the pharmacist, I went off of Cymbalta, Lyrica, and quite a few other drugs so as to clean my system up. They weren't working anyways. (I don't need anti-depressants at this time. Believe me, when I need them, I go on them, but now is not one of those times. Sometimes situational sadness just IS, and there is no way to medicate it lighter, when it's a fact that you have to live through. So counseling is better for acceptance.)

During that time, my mother (and family) did not believe me that I could not get a new doc so as to get off of oxy - they were very anti oxy out of pure ignorance - so she began calling the adjuster and she got herself a nice "cease and desist" letter and my attorney begged me not to have her call anymore. I explained to him that I had no control over my mother, but I'd try talking to her.

But the truth is that the oxy worked cleaner, sharper and better for my pain than this Methadone does. Like I said, the Methadone seems to let me have better digestion, but that's about it. I still need more pain coverage so that I can go outside (as I did today) and just be in the sun and see the trees...it was so beautiful today in PS. My aide picked a bunch of lemons and gratefruits that are just billowing off the trees here...and TONS of hummingbirds...heaven...

So I need to get out more, and if more pain meds can do it, I see nothing wrong with the name or the dose.

But you're absolutely right, one medication may make me very allergic one year, and then another year, I give it a "go" and it works. It helps to not engage, include or involve ANY other allergens at the same time, such as I'm allergic to eggs, so then I'd back off of that while re-trying an old drug that caused an allergy. It HAS worked!

God bless all.
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Old 01-08-2008, 01:54 PM #14
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Oh Tshadow I'm so overcome I send you my best wishes for peace I at this time am just trying to keep my meds from going up I know they will as I get used to them and pain increases so I do my meditation as I am sure allot of us do but it hurts me to see you like this I wish for something to help you as I know I will be following down the same path. So if you do mind I will send a prayer for you and wish you a feeling of less pain and freedom from the chains of pain and one by one the chains will break for relief. flippn
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Old 01-08-2008, 06:20 PM #15
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Wink methadone

Hi Tam, i dont know if you remember me or not but you helped me out a few years ago. I had my surgery in March 2005 and am getting along pretty well. I wanted to share with you what I did as far as meds go - I don't like the way oxy makes me feel and have a very low tolerance to that kind of stuff, so I started taking 2 advil liquid gels and a half oxy 3 times a day. Sometimes I take a whole oxy with the advil(depending on the pain level). I have found this does the trick for me. I spoke with a Dr. who runs a pain clinic in San Diego and told her what I was doing and she said that's what she tries to get people to try because the advil is an anti-inflamatory and the oxy kicks in from there. I don't know if this will help you, but you never know what is going to work until you try it. I hope you find the right mixture for your pain and can get back to your old self again.

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Old 01-09-2008, 06:23 PM #16
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Tam It sounds like you are having a really difficult time. Back in 2001 I was admitted to Columbia Presbetyrian Hospital in NYC to get me off of ALL Meds. I don't even remember what I was taking. At the time my pain had decreased significantly but I could not stop the meds. When I tried, I had major. While in NYC, they slowly took my regular meds away and replaced with methadone, then slowly off of that. I don't mean for you to be taken off meds but maybe you can do some kind of a program where they can monitor you until you find the right meds at the ribght doses. I don't know about insurance. Mine was not paid and it cost alot. I wouldn't know how to go about something like that but anything to get rid of your pain and find the right meds so you don't have those nightmares. Linda
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Old 01-12-2008, 08:47 PM #17
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I wanted to update on the Methadone.

I think my body has gotten used to it - it's been a month.

It seems to give a more even pain relief than the oxy did - I feel I had more pain spikes with oxy than I do with this med. The nightmares have pretty much stopped...

The pain relief is just not enough, though. Lately, I've lost the use of my arms, and even my legs - but my arms for whole days now. This is new. So I'll see this new pain doc soon, and shortly so I'll be bringing this up. My RSD is now flaring also.

Thanks to everyone who responded, I do appreciate the kindness.
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Old 01-17-2008, 02:55 AM #18
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Here's the latest.

With the Methadone (as opposed to oxy contin) I am having more even pain relief. Less high ups and downs.

Better digestion. This is definitely a PLUS.

The pain control is just not enough yet, though, but my pain mgt. doc is working with me to get it at the right level. Also, we use:

Tizanidine (Zanaflex), Xanax, Ambien and I am back try Motrin on a very limited basis. (After 4 years of constant Motrin use, it was blowing out my liver!)

You know, I don't like being on meds at all. But, without it, my pain is so high, and when I have high pain, my arms and legs literally stop working. And the newer symptom of difficulty in breathing - hard muscles in the chest - that symptom is very scary. (I calm down and really meditate until it passes, usually about an hour.)

I share this info. only because when I first had TOS I had no idea what kind of meds to ask for, or even if I was appropriate in asking for help. (I'd had some docs telling me that TOS was not that painful. Boy, were they stupid and wrong.) So I share this to give others maybe the support they need to speak up for pain relief help. I don't know ANY TOSer who is a med-seeking fake - every single one doesn't want to be on meds, but is trying just to find the right level so that one can exist.

My goal is to get out of bed more often, and to get more general movement for the betterment of my overall health. I do worry that being bedridden will cause other health issues.

Don't forget that with any of these pain meds, that we need to maintain a "bathroom schedule" as well as push fluids, as my bladder / kidneys got really bad one summer, because I was just laying in bed too long...just a reminder.
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Old 01-21-2008, 01:21 AM #19
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Tam, I am so glad you have finally gotten to a place with your w/c that you have a pain management Dr who is really interested in helping you. You were out there on your own for way too long!

You know I've had a stimulator for my arms for about 14 months now, and it's been a HUGE blessing. Most days my pain is 4-5 now, not 8-9, and you can have a life worth living at that level, even if you are limited in what you can do. When the RSD flares I still go down for a day or two, but other than my feet burning it is pretty calm lately, at least since the holidays are over.

I haven't had good luck with Neurontin or Lyrica, my kidneys don't tolerate them, but I do take Cymbalta. I had taken Effexor but concluded it wasn't working effectively for me anymore for depression, and Cymbalta works not just for depression but also helps with pain as well. It has been a good addition as there are so few really effective options for nerve pain. I also take Zonegran, a nerve pain med rx'd by Dr Machanic in Denver, it has given me no problems whatsoever. And this week I added another med, Trazedone, which is an older antidepressant. I take it only at bedtime to help me get to sleep. It increases seretonin, and also has some pain-relieving properties as well. My main med is Oxycontin twice a day, I also have Zanaflex which I am now only taking when my muscle spasms are really bad, and Valium, which I take as needed at bedtime for muscle pain.

The Zanaflex I find really adds to my fatigue during the day, after getting up and taking my a.m. meds, an hour later I wd be so tired I'd have to go back to bed! Now the Trazedone is working, I am getting to bed at a much more reasonable time, but my body wants to sleep 12-14 hours - that's the next challenge to solve.

I know I don't drink enough water and clear liquids - live on coffee and soda. And as a result I am SO dry all the time. Need to do better with that! Oh, but I wanted to say I haven't gained any weight on Cymbalta alone, definitely did on both Neurontin and Lyrica, but I'm 105 lbs at present, only 7 lbs more than when I graduated high school! (I was 115 when I got injured, and was up to 139 at my highest on Neurontin, low 130's with Lyrica. I have sweat pants in 4 different sizes!)

Sure hope you see more and more good days sweetie. You've had more than your share of crummy ones.

hugs, beth

(May be some good forward movement on my case this week - let me know when is a good time to call!)
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Old 01-21-2008, 05:19 PM #20
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I'm glad the worst of the spiders sees to be over Tam.

How long does your PM doc want you to be on the Methadone before he will consider going up on the dose ? Do you still have a short acting ed for breakthrough pain ?

Take Care !
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