Nothing seems to be working, frustrated

[mellie4]

I've posted before about this.  I just can't seem to find the right combination of medications to help me deal with my pain.  (Bad pain in my hand.  Some nerve pain and other pain.)  Initially it was only arthritis, and it was very bad.  Debilitating.  Since my surgeries, they've added the diagnosis of RSD.

I've been going to the pain clinic for a while now, maybe about a year.  Since we started, we've gone up on my dosages a lot and tried a lot of different things.  Right now I'm on .1 mg. clonidine for nerve pain, 60 mg. 2 x day Cymbalta for nerve pain, 10 mg Ambien at night as needed, 30 mg. oxycontin 3 x day for pain, 15 mg. 4 x a day as needed for pain.  This group of meds started on 5/25.

All along I've been very concerned about upping dosages and I never wanted any long-acting meds.  After many visits and discussions and a lot of research on my part, I finally agreed to the oxycontin.  Before that I was taking about 45 mg. of oxycodone every 4 hours as needed.  Initially that worked okay but within a short while it was only holding me off a couple of hours.  I had hoped the oxycontin and 15 mg. would be okay.

At the same time I added the oxycontin, I had another stellate ganglion block.  I got 2 or 3 days of really good relief and I wasn't sure if it was from the block or adding the oxycontin.  But after a few days, we're right back to where we are.  I called the nurse practitioner I deal with and told her in great detail what was going on.  I thought she might increase the dose of the oxycontin or increase the dose of the BT.  But after all this time of me not wanting to up doses or add the oxycontin, now she sounds reluctant.  She thinks we've increased the meds so much without much relief that she really doesn't think upping anything will make much difference.

This sort of frustrates me since it's now that I'm starting to feel okay about the narcotics.  In fact, this forum made me realize that it's okay to be on all this, that it's necessary and I have to function.  She said if I needed to take an extra 5 mg. of the BT that would be okay but that she wants to talk to the anesthesiologist about me and figure out what to do.

I'm starting to feel like she's giving up hope on me.  My surgeon gave up hope.  He never came out and said it, but I could tell he was frustrated that my surgeries didn't go the way he anticipated.  I understand there are bad outcomes and everything and I don't blame anyone but I really am frustrated.  I'd like nothing more than to go into the pain clinic and say "Things are going great," at every appointment but that's not where I am.  How long did it take people to get to where there pain was semi under control when you first started dealing with a pain clinic?  I don't think I need a new pain management team.  I think I've got a good one.  But I'm just so tired of dealing with the pain that at this point I'm okay with going up a bit on the meds and now it seems they're not.

Just venting, I guess, but if anyone has any suggestion, let me know :)  Thanks.

[mellie4]

Thanks to all.  I am so grateful for finding this forum.  Everyone needs an outlet and unfortunately no matter how much the people in your life love you, they just don't understand.  I know how I'm feeling now will end and I'll have a better day soon.  I need to learn to sort of stay in the day and stop projecting into the future.  I tend to be a "What if" type of person, and that kind of thinking really leads to nowhere.  And I have to keep reminding myself that there are so many worse things to be afflicted with.  

[jamlws]

I am sorry your still in so much pain. i would be upset too if I wanted to up the doses and the nurse didn't. They don't feel this pain we do they don't know what it is like to live like this we do.
I have been thru many drs and alot of them have giving up on me and that is the worse thing to go thru. Or you go to another dr and they tell you that your to young for treatmetn or its all in your head. I am so sick of trying to find a dr that will help me.
The best thing I can say is sit down with your dr/nurse and tell them out you feel and see what else can be done.
Hang in there,
Jamie

[namnam46]

You know that's so true. Everyone in today's world does have a lot on their plate. I haven't ever heard ANYONE come on this Forum and say that they DON'T have any problem of any kind except their pain. Everyone has multiple obligations, whether it is family, work, school, trying to work out a Pain Medication Combination that is right for them, etc.  No, EVERYONE'S got a very busy schedule and complicated life.

It's no wonder that everyone's pain is increasing sometimes VERY quickly. I think that maybe it would benefit ALL of us to see a Pain Psychiatrist. I've never even had any Dr. suggest that to me. I wonder why?

Something to think about...Sherry

[mellie4]

Sara, they have such a number of staff that it's like they have other opinions.  I work primarily with one anesthesiologist and one nurse practitioner.  It's the nurse I work with the most.  But they have run things by other doctors there and on occasion my surgeon.  I think Sherry has a good point in that maybe I need to be clear about being more open to medication.  I thought I was clear on it, but maybe I was a little wishy-washy.

RunningMom, I read a little about your neck injury.  It sounds exactly like my boyfriend (or ex at the moment) has.  They are pushing him to have surgery and he's afraid of ending up like you.  I've tried nerve medications in the past, Neurontin and Lyrica, and cannot take them for various reasons.  I do take Cymbalta, which is supposed to help nerve pain but it doesn't do much for me.  I have a compounding cream and that helps a little and, of course, loads of ibuprofen in addition to the rest.  I've done a few cortisone injections that never help and also about 5 stellate ganglion blocks, which have had varying results, but they don't last.  Good luck at Mayo Clinic.  I hope they can do something for you.

I think on Monday I'll call the pain clinic and set up an appointment for next week.  They're very good at getting me in really fast.  At least we may come up with another plan or figure something out.  I'm awaiting worker's comp approval to see a pain psychiatrist.  She suggested him when I said I'd like to try acupuncture.  She also thinks (I think) that it would be helpful to talk things out.  She's always talking about how much I have on my plate, and I do, but really, who doesn't in the society we live in now?

[Sarajmt]

Where'd my post go???  Anyway, I'll repeat myself.  I am so sorry.  If only I could ship you a magic pill.  Have you considered asking your pmp to send you to another pmp for a 2nd opinion?  Some do this to get you in front of a fresh pair of eyes.  And like everyone else,  my pain goes up and down and new troubles are common with more waiting around the bend.  All I do is send you:  (((((((((MEGAHUGS)))))))))))

Sara

I'll pm you in a while.

[RunningMom]

I'm so sorry you are feeling this way.  I have to say that I feel exacly how you feel.  I'm on the same dose of oxycontin, however I take 10mg of oxycodone hcl 5 times a day for BT.  The meds barely takes the edge off of the pain.  I've had so many injections(12-14 ESI/Nerve Blocks) and gone through PT twice and tried the tens unit.  I'm allergic to nerve medicine and the meds I take now make me very ill.  I need a muscle relaxer for the muscle spasms, but all the muscle relaxers make me so sick.  I also take alternative supplements(all natural) to help as well.  I have two herniated discs with a damaged spinal cord.  I'm stuck on the couch or bed all day long.  I'm unable to do anything physical or I will have unbearable pain for weeks.

I'm going to go to the Mayo clinic to see if their neurosurgeon has anything else for me to do.  Hopefully they will fix the other two discs.  However, I will not get my hopes up due to the nerve damage with the spinal cord.

I wish I could help you, I just wanted to let you know that I'm in the same boat as you are.  I've had this injury for 2 years now.

[namnam46]

Hi Mellie, (again  :) )

Gosh, I'm so sorry that this is happening to you!! It may be that you need to go in and reassure them that you aren't afraid of the meds anymore and that you realize that you are going to be needing them possibly for the rest of your life and that youa re willing to try any combination of meds that they think will be beneficial to you including the long-term meds. Tell them if they have any better long-term meds that they think will help that you would like to give them a try.

I think that you are right about your team, they seem to really be wanting to help you and you are VERY lucky to have them. That's the way I feel about my team also. Unfortunately, not everyone is as lucky as we are., as you very well know. I've only been going to PM since January of this year so I'm brand new and was EXTREMELY fortunate to have hit the JACKPOT with my team the VERY first time out!! But I know that there are people on here that it has taken thme YEARS to come up with the right combination of meds. You should talk to Tucamore. She had the worst time for about the first 10 years or so (if I'm not mistaken ). If you ask her she will tell you her story.

Or talk to Jamie, bless her heart she is STILL struggling after over 1 1/2 years!!! Her struggle will make you cry. Acutally both of their struggles will bring you to tears.

It might have put them off at the start because of the fear about the meds that you had. I think that they have been doing their best while trying to abide by your wishes. I think that is why you need to have a good old HEART TO HEART with them.

Good Luck dear Friend, I wish you the best....Sherry