[JoanB]

Well, the compounded topical stuff the pain management doc prescribed hasn’t really helped with pain. Neither has the Cymbalta. But she enrolled me in a PT, OT and group counseling program that she says will really help with my pain. Color me skeptical. I believe that PT and OT can be helpful for some conditions like back injuries for example. But I can’t imagine how degenerated nerves can be helped by any of this stuff. Maybe they could give me some exercises to help with balance, but will the OT teach me levitating techniques so that my feet don’t have to touch the ground when I walk?

Even though I really think this is all really about cha-ching because my insurance pays for 35 sessions, I’m really afraid to refuse to participate because should I ever ask for pain meds, they might label me “drug-seeking”. So, two questions:

1. Has anyone here ever benefitted from one of these programs, or does anyone know anything about them that I’m missing?
2. Am I being paranoid with my fear of being labeled?

[rscowboy2005]

[QUOTE=JoanB;639459] But she enrolled me in a PT, OT and group counseling program that she says will really help with my pain. Color me skeptical.

*** Actually, in my first PT session I learned how far my sense of balance had rotted away along with my nerves. She gave me 3 exercises ("Anymore than 3 and I won't do them and it is a waste of our time"). One involves a simple calf stretch that does help circulation and can knock the pain down a bit. The other 2 are for balance and while simple, are difficult to do successfully. Together they take 6 minutes up to 3 times a day.

Cowboy

[Rrae]

I hear your frustrations
I haven't read thru your older posts so I'm not sure of your exact pain issues.....but just wanted to share with you that, yes, I understand your 'concern' Re: being labeled a seeker...
and this totally sux doesn't it!
If you feel comfortable with your pain doc and you've tried some of his/her initial painfighting tactics....., you shouldn't feel paranoid of wanting to have something on hand that would directly target your pain, especially when flares happen.

So, if several things have NOT worked for you,
One practical way might be to say something along the lines, "I've spoke w/my pharmacist and he mentioned 'such-and-such' has been proven successful w/many people and suggested I ask you about it...."
In my case, I couldn't seem to stay above my pain spikes, so my pharmacist mentioned 'extended release' pain med, so that's how i presented it to my Dr. And from then on, he's worked wonderfully with me in trying different meds.
Course, all Dr's are different and I think the thing they get red flags with is when a patient walks in their office the first visit asking for a particular pain med by name.

My biggest pet peeve are medical professionals with an attitude about pain meds (thanks to all the drug abusers).
Pain meds are here for a REASON. And unless there is some obvious reason for the Dr to feel uncomfortable with it (needle tracks up and down the arms) then they shouldn't hold back when they have a patient paying for all these office visits, trying other things first suggested by the Dr...
You deserve a quality of life and if you establish an open, honest relationship with him, then you should be able to have access to meds that could possibly help you aquire that.

Just my 2 1/2 cents....

PS: I visited your profile page and noticed you like the mandolin.....cool! Are you still able to play? I used to play alot of guitar.....good therapy.

Also wanted to mention I enjoy your wit and humor
I've laughed at several of your humorus posts!
Now THAT's 'good medicine'

Best wishes

Rae

[cyclelops]

I use a low level narcotic for when I have to perform....otherwise I sit around and grouse. In all honesty, all the med does is take the edge off. They make me wax poetic.

I had hand exercises, but, given my thumb has migrated out of position...what good are they?

PN is stinky,
It messed up my pinky,
The thumbs they are bent,
My energy is spent.
My eyes, they are blurry,
I can't eat my McFlurry.
It's all over my shirt,
So is the ketchup, I squirt.
No OT or PT can help my issue,
Please will some one pass me a tissue....
and blow my nose for me...... Please. Thank you.

That is all I have to say....today.

I do hope you feel better....keep trying, even if in vain.
PN is a darn pain.

Feel free to sing to traditional folk song melody or rap, if so inclined.

[JoanB]

Thanks all for your thoughts.

To rscowboy: yes, I do think that maybe the PT might help with the balance, but for the amount of time they want to have me do this (2 4-hour sessions a week for ? weeks) seems excessive for the small or possibly non-existent payoff in pain control. I've been in PT for other things and one thing I've learned is that if insurance pays for 12 sessions, then you need 12 exactly. If it pays for 20, then oops, looks like you need 20, and so on. What happens if I need PT for something later in the year, and they already milked it dry? (Which I assure you they will.)

Rrae: yep, everything you said made sense. And I think I've treaded very gingerly with the doctor so far, so I don't think I've raised any red flags yet. I just am not sure that this program is such a great thing--there's also a group counseling session (oh joy!). I've never done a group anything where there isn't at least one person who thinks this thing is all about her/him and wastes enormous amounts of everyone else's time. And besides, I think I'm handling this all pretty well and don't need counseling. What would help my head is getting a job--I was downsized last June, right before my hip replacement, and still haven't found anything.

As for the mandolin, yes I still can play. I have a tiny bit of PN in two fingers, but not enough yet to really hinder me. That's one of the things that really worries me though. I play in a mandolin orchestra http://www.pittsburghmandolinsociety.org/index.html, which has really kept my spirits up during this period of unemployment. And thanks for liking my humor. You're in the minority, but I agree with you, I think I'm hillarious.

And cy: thanks for the poem! perhaps I should put it to music! Sorry you've been feeling pretty bad lately. I hope you get some relief soon. And that you find the cheese cutter for your soap. If you are going to use it to cut the cheese though, I might want to avoid you for a while.

[daniella]

6 months into this I went to a program at Cleveland Clinic. It was 5 days a week 8 hours a day. It consisted of PT,OT,group and individual therapy. At the time I went I was in bed ful days because of the pain so when I got there I only lasted 4 days cause my pain was so high. Then I was going to get a implant to help with my pain so i was able to do PT. They felt though I would do individually instead of program. Many there did have issues with taking too many meds which I did not. I don't regret going to the program for even the days I was there though I would not want to go through the pain again. Anyhow I do feel it helped to see that I could do more, got me out of bed, and helped me mentally as well. Now for you and everyone with similar conditions I feel PT is a very personal thing what may help a person. For me I can't tolerate PT so have been trying to do more activity on my own. FOr you it may really help. Your ? about it helping. From what I have been told the importance of staying atcive is to keep from atrophy. I recall at CC them saying to me that yes this pain I am in is horrible but if I start to atrophy I am really going to have problems. I know you feel therapy won't help but for me that part the group therapy did and individual. It helped getting the feelings and fears out. I got to biofeedback which really helped with my anxiety. I am still seeing a psychiatrist now. It has not made my pain better but has helped me mentally deal with it. My pain doc now put it in a good way that one can't be in pain for as long as I have and had it not have an impact mentally. I liked how he said it cause it made it seem different then it is in your head so to speak. The OT part was learning the proper way to do activites you do in your life cause often times one compensates which creates other problems. Also finding the joys you had and maybe being able to do them again. Ok I am sorry this is a novel I hope you find what works for you

[dahlek]

PT, since I'd had it before [for an injury] I knew that w/good therapists it can and does help. Why? Because when your HURT your body is telling you to keep still and it won't hurt as much.....But, in being still? You lose lots of muscle tone and w/injured or dead nerves as well, you can and must re-learn how to use your body properly again, w/no compensations [compensation is good at times? But you pick up bad habits in the process-they are hard to un-learn.
OT is all about safety? Scatter rugs and walkers or canes plus dead feet are a no-no. Cooking when you can't truly feel HOT! is also a problem.... Having grab bars where you mite need them WHEN you mite need them is also essentiial. Even walker or cane height, if properly adjusted, can truly make a difference! OT has limited uses, but can at times, plug you into good resources when and if you need them. Depends on how extensive your PN is.
Talking to others, in a counseling setting? Gee I wish I had that when I came down w/this awful pain thing! You'd be surprised to learn how well or not others cope, and that they are nearby and real! Some of them mite just have coping tricks up their sleeves that could be useful. Just don't let this type of thing go on 'forever' as sometimes the counselors want you to do? Most insurances don't allow that 'forever' part and it can get rich for you. Save some 'visits' for later in case they are needed even more then.
The most important aspects to keep in mind [especially to keep labeling at bay?] is to keep asking questions about WHAT IS REALLY GOING ON? And, This works, but That doesn't and try and articulate why in a very clear and concise manner -no emotion...,just the facts!
Last clue to keep things in control? Pick ONE doc to prescribe all of your pain meds, and that THAT doc KNOWS all other meds you are on! It'd be OK to, say take, a 5 day script for pain meds from the ER if you've damaged yourself...but be sure the prescribing doc knows what's happened and can either call in [usually these days for a fee] or mail you a script to be filled by you and your plan.
Then? Save the pain meds - use them sparingly, to be used for when you REALLY need them! IF you use them all the time? They become less effective, IF you use them WHEN you really and truly need them? Then, and only then do so. My own pain prescriber knows this of me, and has never denied me pain meds when I really truly needed them! I also know? IF I took them regularly? I would be a mental zombie ...that is me tho. Not you.
's and keep on track, you are getting closer and better in getting all the help you need! -j

[JoanB]

Thanks all for your comments. I have an appointment today to be evaluated for the OT and counselling parts (had PT eval last Thursday). I'm still feeling very doubtful about all of this but I'll at least see what they have to offer.

[JoanB]

Well, having gone to the three required evaluations, I just got a letter from the pain management doctor announcing (big surprise here) that their team of experts has determined that I would benefit from their program. When I went to their evaluations, I asked a lot of questions, and nobody answered any of them to my satisfaction. None. The closest to a cogent response I got was “we have lots of experience with people in pain.”

If they want to suck up all of my insurance-paid sessions plus my co-payments, they should explain to me exactly how they propose to make me better. If they really know what they’re doing, it shouldn’t be hard to explain.

I think what’s gonna happen is that I will spend two half-days for six weeks in a group, learning in OT how to perform tasks without straining my back, wrist, shoulder, etc. In PT I will learn how to strengthen the aforementioned body parts. And in the group counseling, there will not be one other person with PN, but it will be good for me because all the back, wrist, shoulder, etc. pain is the same as mine.

In short, I’ll do lots of things that don’t apply to my problem. There is nothing that PN prevents me from doing. It just hurts like hell but I do the laundry, shopping, vacuuming, yard work, and so on because I have to. I don’t need to learn another way to do those things because there is no way to do them without my feet hurting. I don’t need to learn how to suck it up because I’m already doing it. If they can’t reduce my pain, they’re wasting my time.

So what am I going to do? Whatever they say, in the faint hope that just maybe this isn’t all just BS like I think it is, and maybe this doctor can help me. If my predictions are wrong, I promise I will tell you I was wrong. But I don’t think I am.

If you hung in with me this far, thanks. I’ll try to be in a better mood next time.

[jannaw]

I don't think you are wrong in your skepticism of OT and PT, it has(had) a place in my life when I injured my low back and kept re-injuring it. They fixed me up for the next time and sent me on my way, as far as PN I have two wonderful therapists and we tried anodyne therapy for eight weeks, it didn't work. I ended my last PT about two years ago, and it was pool therapy, loved it so much I now have a swim spa right outside my bedroom door. I spend 30 minutes almost everyday in it doing the exercises I was taught at therapy, for those 30 minutes I am without pain! Best 17 grand we ever went in debt for. Yes the heat bugs my feet, but just a little and I can stretch and work the old muscles and joints.
Now my pain doc has become The Montana Center, an all inclusive one stop pain shop if you will, had a caudil spine shot last week and even though there is total blockage in my left S1 I think its working, the last two didn't. I'm also going to their chiro and he's going to teach me some more new tricks, I like him..also have head docs on staff. I am told only one other clinic like this exists in the whole US in little old Kalispell, MT.
I had a surpise urinalysis last visit, saw the 360.00 bill and called the billing folks up right away, guess what no mistake. It seems they are looking to make sure you aren't adding street stuff to the mix, or if you are taking too much, and worst of all if it doesn't show up in your urine that might indicate you are turning your meds for $$$. Insurance companies don't mind she told me....I want my old body back, the one that worked for the most part, I promise I'll take better care of it this time. I'm just feeling like they are upselling the whole tomato and I'm not sure I need it all, the other part of me is saying they are taking pain seriously enough to commit an entire practice to it. I hope that you are able to take away from those sessions even just a little bit that helps you, thats all we can ask for I suppose.