Looking for advice

Sean,

It's not easy. We all go though those times where we're just tired of hurting. We just want to lay down and die or else curl up in a ball and never speak to the world again since it's left us with this pain. I wish I had more answers for you as to things to try. My personal biggest help has been to try and reduce my stress. For me all the tension adds to the issues that are already there. I know it's not easy, you're probably thinking....Relax?! I can't even sleep right?!

From the looks of some of the meds that you've tried already the only thing in that AD class that I didn't see is Cymbalta. If it's not something you've tried, it might be something.

Knees are not a strong point for me to try and give any advice on. The only thing that I've ever been able to do for mine is just RICE method. I'm immobilized right now and they want me on crutches cause of a fracture. Not that I've been good about using the crutches....Sigh. But I'm sure that there will be others with better/more advice.

As for the day to day stuff, having to re-evaluate who you are and what limitations you now have is a very hard thing. All of us here have had to go through - or are going through - having to redefine who we are and finding our value despite the things that cause us our pain. It's not an easy task. If you take a look at some of the other posts here just in the last couple of days you'll see that sometimes the only thing that we can do is come here and vent. But it helps.

People here are willing to try and brainstorm, offers suggestions, and offer lots of support. This has been one of the best online communities that I have ever belonged to. People here genuinely care and will listen, even if the only thing you need is a shoulder to cry on. So people keep checking back and posting more cause we'll be here to hear and to try and help as best as possible.

    NH welcometo the CP forum! I also did not see some of the other comon pain meds. Have you tried Percocet's or Oxycontin. Have you been to a Pain management clinic, or are you seeing your PCD or your surgeon? Are you still doing PT? Could you please give us a little more information? What has your surgeon said about it. There will be other along here, so please check back often, and in between that time tell us more about the pain meds and the amount s you have tried.

     Michael

NH,
I really feel for you. I had something similar after I had surgery on my head & neck. The NS kept telling me to wait -- weeks, then months went by & the pain wouldn't let up. It ruined my ability to work, friendships, pretty much everything. After 8 months, I finally went to see a pain specialist & got some relief. Eventually, I needed to have radio frequency nerve ablation. It turns out that the scar tissue from the surgery grew around the nerve in the back of my head/neck & it was basically strangling the nerve. There wasn't any permanent treatment for it, but the ablation helped for a long time & now I have a Spinal Cord Stimulator that has helped me get back many parts of my life. I'm not running half marathons anymore, but at least I can work, do housework, and keep up friendships plus do some walking around. I have slowly been able to build up to more active things like walking up a flight or two of stairs and such. I'm told that if I keep up, I will make progress -- slow & not always steady -- and may eventually be able to hike again (though distance running is probably not going to be a possibility) and play some sports for fun (not with competitive people).

I want to encourage you to keep trying. I didn't have much luck with a lot of the meds I first tried. The only thing that helped at first was steriod injections (& those only would last for several days, if that). Then we found one pain med that helped a little bit. We added anti-convulsants, sleeping pills, muscle relaxers, sleeping pills, etc., etc., plus accupuncture, behavioral modification, rest, relaxation, and so on. It took all of those things working together. Truly, I was so miserable for the first 4-5 months. I was on like 8-9 medications. I hated it. But as we got the pain under control, I was able to start cutting some of the meds & now I can manage the pain with mainly the SCS & Lyrica. Sometimes I also use a topical gel -- was using Voltaren gel, but that made my hair fall out (long story, not a common side effect -- plus the pain was my head so I was putting the gel in my hair), so now I am back to the compounded prescription gel made with Ketamine. It's not covered by my insurance, but it does work quite well. If you haven't tried Voltaren, maybe look into that first; but if it didn't work for you, maybe ask about compounded topical treatments.

All I can say is to hang in there. Nerves do heal, but they need to rest to do so (as I understand it) & if they are constantly in pain, that often doesn't happen. Breaking the cycle of pain can be very, very hard, but once you break through the pain, it will be so much easier to manage it.

hang in there!!!
frances

I would seek the opinion from a new orthopedic surgeon. Find one that is not in practice with, in any way, the doctor who did your knee surgery. As you said something may have been screwed up during your surgery and perhaps it could be fixed if it is found.

Sean, welcome to the forum and I'm sorry to hear of your pain issues.

A pain management doctor is just that, they are experts at managing pain. Not all PM doctors are good doctors though just like any doctor so you may have to try more than one to find the perfect match for you. Also, not all pm doctors prescribe meds for pain some only do procedures so make sure before making an appt that the doctor also prescribes pain meds.

There are alot of different pain meds out there besides oxycodone that may work for you better. Like Screaming said a extended release med will stay in your system for 8-12 hours so you don't keep having breakthrough pain. We are all different and we all take alot of different meds as you can see from past posts on the forum. Definately sounds like it is time to try a new doctor for some fresh ideas on how to help you.

I hope you find some relief and remember we will listen when you need help of you just need to vent. Good Luck!!!

   NH, I'm a little short here on this one....but Straydog or PaLady will know...keep checking here. also please ignore the comment by Cheify...he has been reported and they will soon remove the sorry comment he made here. hang in there...help is on the way!  also give Koffee clatch a try...its a fun thing for all of us here...but what ever you do don't mention anything about pain...it's a no no there. Have fun!

    Michael

Post Edited (Screaming Eagle) : 12/3/2009 10:21:42 AM (GMT-7)

Leisa and everyone else- again thanks for the input. Still looking for some input on the nerve block. If anyone knows about them and has experience with them and can tell me what they are like it would be greatly appreciated!

A little backstory on my left leg injuries; When I was 19 I had arthroscopic ankle surgery for osteochodritis dissicans (chipped bone in ankle joint). I tore my left ACL 4 years ago. Both of these injuries healed well. My most recent and surgeries are what have caused the pain that I experience. While 'mountain' biking with a couple friends I took a tumble directly onto a bed of rocks. I broke my kneecap. It was put back together with screws and pins and what not...

One thing I have realized throughout this whole thing is that I am happy that I have good insurance. On the other hand I have been completely frustrated with the amount and extent of bureaucracy involved in the medical field. I had to learn very quickly that I have to be my own advocate. If you want something done right or done quicker when dealing with doctors you have to get involved and do it yourself. I can't tell you how many doctors, surgeons and neurologists have told me that the next available appointment is 3 months away.

Hi Sean,

I too would like to welcome you to Healing Well. I am so very sorry to read what has been going on with you. I think by now you can tell this is an awesome group of people on this forum. I do not believe you will find a forum out there that can compare to this group. I have been hanging out out here for a few years in different forums, I am lucky enough to have enough wrong I can jump around to different rooms, lol. But all kidding aside, when I first came to Healing Well, my world had been completely turned upside down, inside out and I did not know what in the hail I was going to do. I no clue how to cope, how to accept what was going on in my life. This forum became my safety net.

One of the first things that sort of jumped out at me was what Mrs. picked up on and spoke of, a conditions called RSD. I do hope you will google this condition and find a reputable website and read up on it. See if any of your symptomns fit or not. I truly hope I am way off base in my thoughts,  I have seen what this condition will do to a person first hand.

I have had 5 knee surgeries and understand the pain from that stand point. I lived with knee pain for many, many years. My last two surgeries were done 3 weeks apart and that was one of the stupidest stunts I believe I have ever pulled. I fell and twisted a freshly operated tear of the ACL and spent one year in a Don Joy brace, a week in the hospital trying to get the pain under control.  It took my knees 18 months to heal due to medications I was on to manage my crohns disease. Because the meds were relatively new no one knew if it would affect the healing process, well it did. I was ready to shoot me, the drs and anyone else that crossed my path.

I have a couple of things I would like to throw out that I would consider doing if I were in your shoes. The first thing I would do is get a second opinion with a ortho that is board certified preferably in sport medicine. I would take my op records and go see what  he/she thinks. Then, I would have my ortho or even my PCP ref me to a PM dr. Most PM drs want a ref from another dr so be sure this is done. I would call one of the local hospitals in my area and I would get some names of drs from their referral line for a PM dr. Keep in mind sometimes we have to go to a few of them before we find the right fit. Not all PM drs are created equal just like our other drs.. Sometimes we have to kiss a few toads before we find our prince/princess. There are two types of PM drs out there. One does nothing but prcodures and injections and will not write a script for pain meds, you don't want to go there. Then, there is the other kind that will write scripts and does the procedures too. Before ever seeing one call and just ask up front if he does procedures only or if he does procedures and gives scripts for meds. Pain mgt drs have more knowledge under their belt to handle someone with CP over say a PCP or an ortho. Sometimes it takes a combination of meds to get relief, different kinds of modalities, its a mixed bag, but you want someone with experience pulling things out of that bag.

Another thing, is I would talk to my PCP about getting put on something for depression and being referred to a pyschologist that also deals with CP patients or someone with experience with patients that have medical issues in their life.  Personally, I prefer a psychologist over a psychiastrist, I wouldn't give two cents for one of those guys, lol. but again that is my opinion only. lol. I was referred to one and let me tell you, she was a lifesaver for me. By the time I got to her I was a complete mess and truly had no idea how to cope on a daily basis, deal with any kind of an issue, talk about a fish out of water, let me tell you, I was there. I wasn't crazy or anything like that, I just had come completely undone with my life and I did not know how to put the puzzle back together. It was really hard taking that step because I am one of those people that has to be in control of her life and I was totally out of control.

Depression and CP for some reason go hand in hand. Sometimes we have to try several types of medications to find the one that works the best for us. It is like any other medication we take, it is not a one size fits all. For me being on an antidepressant helps me smooth out the rough edges. Makes my life a little less hectic and I am not so scrambled inside. I think if you have read many posts here you will see that people that have CP are the strongest people walking this earth. Not just anyone could deal with the issues we do on a daily. It is definetly not for the weak.

Our lives get so turned upside down, we lose our friends in many instances because we are not able to get out and run with them, our finances go down the toilet, our familes don't understand what is wrong with us because after all we appear to look ok, we spend a lot ot time seeing drs and sometimes they don't know what to do with us, we get angry with everyone including ourselves, it just seems to be never ending. Many times we think there is no light at the end of tunnel, but there is, its just real dim some days. The important thing is to never give up or give in, keep fighting and keep looking for answers.

I hope you can get some answers and help soon. Hang in there, it will get better.

 

Sean
I had RSD in my shoulder at one time so I can explain the nerve block thing a bit to you. They inject an anesthetic into the sympathetic ganglion to your leg/shoulder, wherever the pain is. The reason behind it is that if they can interrupt the pain signals coming from your brain and spinal cord to the painful area, it is sometimes truly helpful in reducing or even eliminating the pain that you are feeling. There are times that it needs to be repeated, especially if you are dealing with sympathetically maintained pain such as RSD or CRPS.
You said you had a regional block when you had the surgery, so it is very similar to that, except it lasts for a few hours or hopefully days.