PM update...unsure how I feel

Are you trying other forms of pain management ? Pain psychologist, biofeed back, etc ? Going to higher doses of pain meds is not something drs are usually willing to do now days when it comes to someone as young as you are. And having your insurance doesn't help any.

It seems a guess on the PM's part that you're suffering from Hyperalgesia, something I don't think can be known until you're off meds for quite some time.

In my own case, I was on 50mg of oxycodone for more than a year (30mg of oxycontin + 20mg of oxycodone). I think that, indirectly, I ended up with some Hyperalgesia due to the oxycodone making me more lethargic & more depressed. I don't think I had more pain, but just found it harder to deal with emotionally.


Now (in addition to Tramadol ER), I'm taking just a few BT pills per day and using lidoderm patches with greater frequency -- which helps one particular area that bothers me at night.

While I still have too much pain to be completely without meds, I feel much better with this lowered dose: more energy, less depressed, more active.

If your PM is right about the Hyperalgesia, only time will tell, but if he is right, you may be very happy with the outcome. Expect, however, that the first few weeks or month will be difficult.

what do the "4 credits a year" mean? If able i can earn a certain amount while on SSI, but I would just loose the amount of my check, but be able to keep the insurance. I don't think i claify for medicare at 29, on SSI...
But I'm all for being educated.
I do look to go back to school soon, even if its one class at a time.

I really really wish these Dr's who claim to understand dependence versus addiction really did!! When you have spent any amount of time on narcotics and any amount of time in horrible pain to have someone to expect you to just cut your dose in half because they tell you to is absurd. Do they not think if we could we would? When you have built such fear of the next episode coming and you have meds you know can prevent that your not likely to think about next week or even tomorrow your going to only think about stopping this here and now. Tapering is a wonderful concept except it seldom works due to uneducated or uncaring Dr's who set the taper to fast. You can't stop something you have took 2 years in 2 weeks,your already dealing with pain and depression add to that with the pain and depression of withdrawl and the best made plans just went out the door!

Dr's that have a issue with our meds shouldn't be writing them in the first place and certainly should at least be well versed in getting us off of them.

How much did he cut you to start?

If you can't do this get back in there and make them do it right. There's too many meds that can be substituted for what your on and tapered at a much faster and comfortable speed. If they want me off they are going to help me off without nearly killing me because I didn't get there on my own and they shouldn't expect me to get off on my own.

I have now used butrans twice as a take down med and although it does little if anything for pain it doesn't leave me a sick suicidal mess either. I'm actually ususing it now since Walgreens decided I didn't need any morphine this month. I also have a clonidine patch on and all in all I'm not doing bad at all other then looking like a patchwork quilt with butrans, clonidine and hrt patch on.

I realize on medicaid your not going to have the same options some of us do as far as alternative treatment and that's a crime as well as another rant but there's some things we can help you with once you get through this part.

Good luck

AngMichelle said...
What frustrates me is, it wasn't until my insurance didn't cover the "easy to write" scripts that they suddenly had a concern for me being 29 and on these meds. I guaruntee if I could have afforded to stay on or in insurance had covered the oxycontin that helped SO much, I would still be on it...

It'a the truth. A while ago I posted my experience with switching to hospice, who suddendly wanted to get me off a medicine that was working well for me, for no reason I could figure out.

Fortunately, I didn't stay with them long enough to make the change (no other problems, just not a good fit for my prognosis). When I switched again to a palliative care doctor, he explained it was probably because that medicine was more expensive and hospice would have to pay out of their pocket rather than go through my insurance, which had covered it previously.

So I think there is some behind-the-scenes pressure to get a patient on an "equal but cheaper" choice of medicine (and I don't just mean name-brand vs. generic), when whoever foots the bill changes.

Easy for the paying company to say, not so easy for the patient, who has to go through the anxiety and pain of changing.

Maybe you can convince them that you need to titrate down at your own schedule and pace, based on real life, rather than what they think you "ought" to do? Regardless, I hope things turn out well. Good luck and much hope for the future--what a tough position you're in!

AngMichelle,
Awhile back I decided that I wanted to see how low I could go with the meds that I was on. I've been on pain medications since 2005, this time around, and prior to that, was on them on a regular basis for RSD for over 7 years......at the time that I wanted to reduce my meds this last time, I was on 150 mcg of fentanyl, and up to 6 -15 mg per day oxycodone along with the two muscle relaxers and anti inflammatory medications.
A taper done correctly is not all that bad, and minimizes the withdrawal......it is easier for larger percentages to be reduced in the beginning of a tapering plan simply because your body is getting most of the dosages you were getting......a standard reduction is about 15-25% of your current dose, although some times, depending on the medication and doses available, the reduction percentage may be a bit higher.
When I reduced the dosages, I had my doctor cut out 1/3 of my fentanyl dose at each visit, so I was reducing the fentanyl by 50 mcg (33% reduction).....I honestly didn't notice it nearly as much as I thought that I would......but I did notice that I felt a bit better......then we reduced the fentanyl another 50 mcg ( 50% reduction), and again, I honestly didn't really notice any withdrawal or stomach upset or any of that stuff that goes with withdrawal. The important thing that I did notice is that my pain was just as controlled at 50 mcg as it was at 150 mcg......and I felt better overall.....I also had her reduce my breakthrough medication amount during this........
I have always kind of viewed these medications as less in milligrams and doses is more.....at least for me. I know that as much as I may want to be off them completely, that really isn't an option for me, as it isn't for most of us, but at the same time, I have learned to cope with a certain level of pain, which I can manage most of my activities and things that I need to do.
Once we got to the 50 mcg of fentanyl, I asked to change over to an oral medication ( extended release) and we converted it but again reduced the conversion by 50%......I am holding my own, meaning that the pain is fairly well controlled, I am not needing to rely on the breakthrough medications, and I am overall able to be more involved and active...
Did I have hyperalgesia, no, but in talking with my doctor, I have learned to manage the every day pain levels pretty well, know my limits and know when to stop, and my body has learned to adjust somewhat to living with the pain......so for me, reducing the medications was the right thing to do.....
I know that doing this seems unfair and overwhelming, but if you perhaps look at this as a chance to see how things really are for you, both chronic pain wise and acute pain wise, you may find , like I did that sometimes less is more when it comes to these medications in some situations.
In the midst of all of this, my spine has taken a significant turn for the worse, and it is looking like that third surgery is coming faster than I ever hoped.........my MRI and CT scan last week are looking more like a train rail wreck than a spine, with the canal not even visible at this point..so give it a shot........keep an open mind and go into this viewing it as an opportunity to assess where you are after a month or so being off the medications or being at reduced dosages and then re-evaluate your pain treatment from there.
Sandi

It'll get worse before getting better but this may be the best thing that ever happened to you.  Yes it sucks that he's just yanking meds to get you off of them without a real diagnosis.  Nothing you can do at this point because if try to change Dr's you'll be flagged and screw things up even more.  Your only hope is to believe you can get through this but at least there's light at the end so it's time to fight this thing.  I've kicked Xodol (Hydrocodone) and Exalgo (Hydromorphone) cold turkey and it sure did suck but I made it and probably better for it.

i just want to say thanks.
Thanks for letting me write these incredibly long post, and thank you even more to those who reply. I feel so alone in this here at home. I feel like i don't have anyone that can actually help me in my corner. So just being able to type the things that are in my brain and heart helps more than you know.

i agree it may be needed now, again.

thanks, MRSM123 I do use a TENS unit on my shoulder, and when my neck/ muscles hurt.
I am not a candidate for the spinal stim.(am I told) because i don't have any time of back/spinal pain or issues related to the spine. (i've asked, also asked about the pain pump and was given the same answer). my pain is more injury related, or muscle/joint issues.

I will be doing massage(get one today!), Energy medicine and energy psychology, using essential oils, work on my mindfulness stuff, maybe some CBT and deep breathing exercises, try to stay distracted and out of this bed/house, and maybe I can do this and come out even better than ever!

Hey girl,
I know how you feel in regards to being young and looking for bigger issue that is causing all these problems.

As you know, I've also been in pain as far back as I can remember. I remember in early elementary school I climbed up and sat on top of the monkey bars with my friends. One time, when the teacher blew the whistle, I just started to cry because I was afraid of how much it would hurt when I would jump down and land

I'm now 38, but I remember the looks I would get when getting scripts with my parents as a teen. If I had something visible, like a cane or a bandage from surgery, it wasn't too bad. Luckily, most of the causes of my pain are easily seen in test results so I haven't had many problems. I definitely feel for those that have "invisible" causes. I 100% believe that Lyme disease can become a chronic condition resulting in lifelong pain, but I know many Drs do not. I've spent way to much time sitting in waiting rooms at research hospitals talking to Lyme patients to believe otherwise.

With the jaw pain, after the TMJ replacements, trigeminal nerve blocks have been helpful. Prior to the replacements, iontophoresis with lidocane(sp?) helped also. Also, dry needling has helped to release some of the locked muscles as the base of the skull. If the muscles are like rocks, my PT will attach e-stim to the needles while still in the muscles. This service is covered under physical therapy, but it can be difficult to find a licensed therapist.

Your body is like mine. I told my Dr that it was time to trade it in for a new model. Cars have a lemon law if it take to many times to repair a problem-shouldn't we have one? I do hope this med switch up is helpful. I've found before that I've attributed improvement to one med, when in fact it's another. I've just been on too much to know what's been the most helpful at the time. The timing with the shoulder surgery does seem rotten, but it might provide insight as to if it was beneficial.

Keep us posted-you got a lot of support :)

How exactly do the oils work/help you out? I'm always up for something that's not medicinal. I was pretty skeptical about the dry needling, but it has really helped.