What do I have for options??

I have noticed the last 2 months that my pain levels are higher and that I have been unhappy with pain control. I have been on 50mcg fentanyl and 15 mg oxycodone and a muscle relaxer for about 7 months.

I tried oxycontin before and didnt notice anything special if i recall corectly.

I feel discouraged and like I have no viable options left. I see my pm doc on the 16th. I havent tried many meds but already feel like my options are limited.

I am scared of my pm docs and afraid if I complain they will think i am a drug addict, or looking for drugs and i am afraid they will leave me with nothing at all. THey have always been helpful and nice but you know how it is.

I just want to be comfortable and be able to do things. I went to the grocery store now I feel like I am going to die.

I am just wondering what are some other options? can anyone help me?

thanks
melissa

Merrygirl,

First all of all stop beating yourself up. Its not your fault that you are not responding well to your meds, this happens all the time to people. Don't get discouraged, you have a long way to go.

Why not make a pain diary starting now and let your dr see it on the 16th. This will give him/her an idea as to what is going on. When you see your dr are you questioned about how well your pain is being controlled? If so, then this is when you tell the dr what is going on. If not, then just be upfront and honest and tell your dr things are not working well as well as they were. Ask the dr what she/he thinks is the next step. By doing this you are not asking for anything except for help, thats why they are there. This does not make you look like a drug seeker.

Unless you tell the dr things are not working they have no way of knowing so its up to you. Take care and good luck with the dr on the 16th.

Hi Merry,

I think if your quality of life is suffering then you have a right to complain. The whole idea of pain management is to controll your pain so that you can have a manageable life, surely they will hear that the current plan is not working well enough for you.

The pain diary is a good idea, everyone here always talks about recording everything and I agree writing it all down gets a clear picture in your head about what it is you can and can't do. Then when you go in you feel like you have specific requests, I can't manage the shops on these meds is a clear message that they're not strong enough to give you the independence you need. So start that diary.

I also discovered by accident that complaining to my own local doctor carried more weight. She rang and spoke to my specialist who didn't seem to "hear" me when I'd seen her. Suddenly my specialist was all guns blazing and set me on a new course of treatment.

So don't go in asking for increases, go in asking for help as you can't manage your everyday life activities.

I'd be surprised if they don't respond positively.

Goodluck on the 16th, golitho

Merrygirl, I agree with Whitebeard regarding the relationship with your doctors. I think we are afraid that our doctors will stop treating us or lable us. Being honest with your doctor is the only way to go. That does not releive the fear or stress though. If necessary, take someone to your appointment to give you encouragement as you share how you feel. We all get tired of feeling the way we do. Thats why we come here. A great place to unwind. 

you guys are the best. I really appreciate the help and advice. I started antibotics for my skin infection and It has flared up my Lyme symptoms too. I have been writing in my pain journal. At least i feel like i am being proactive in my care.

thanks again guys.
hugs,
melissa

Melissa,
You have been given great info., but the only thing I'd add is that medication is one of the ways to manage our pain, but most of us need to put a package of things together to manage it as well as possible. Seeing a pain psychologist or therapist could be very helpful. He/she can teach you strategies to use such as relaxation, and Cognitive Behavioral Therapy to help you learn how to manage your thoughts and emotions. While we may not be able to get rid of the pain entirely (maybe some people can, though, but not most of us) how we think about it is also important to our quality of life. We can let it take over, or we can make the choice to get the best medical treatment possible (including meds) and do activities that help us maintain some quality and meaning in our lives despite the pain. I know it's not easy - we all know that, but we do have some choices in the mix of it all, even though our first choice to have no pain is generally not in our control any longer.

Good luck tomorrow!

PaLady

I do see a psychologist about every 2 weeks or so. he has been very helpful. the only thing i dont really do is exercise. I really have issues with it. I know I can so something, but mostly I walk to the bus stop at the end of my street 2 times a day. that has been t he most I can muster. I know I dont have to explain it to you guys, but if it hurts why do it, but I know it would be good for me if I could do warm h2o therapy in the future. With the fatigue and pain and a constant fever ( 3 and a half years now) its hard to get dressed most days.

I have done sleep studies, injections, massage when i can afford it.


I just dont know what to do with myself.

feeling depressed and defeated.


melissa

Merrygirl, I am so very sorry what happened. But, I would suggest that you get in with a new PM dr ASAP. Get your PCP to make a referral to another one, do some shopping for a new one. Look, this happens all the time to us. Now, that you have seen this side of him, its time to move on and get a new PM dr. Don't consider oh well maybe the next time I see him he will be in a better mood, that is not going to happen, this is the time to advocate for yourself and get proper care. Try not to let this bring you down. Gentle Hugs coming your way.

thanks for your support.
I have started to look around. I am not happy. If you are in such pain you wake up at 3-4 am everyday, gee I think I will STOP your pain meds. what part of that makes any sense? And I am mad because if I was a drug addict I would have no problems getting meds. But here I am take my meds EXACTLY as rxd and I get treated like this? no way. I know if this dumb doc wasnt there today I would be feeling a lot better.

grrrrrrrr.


oh I tried lyroca and it made me suicidal. no good for me!

you guys just do not know how healthy you are, at least you have diagose on your self. i have been searching now for 15 yrs. OHUS did alot of testing on me and still no daigose. they even thought at one time that i had two differnt things going on! so i have been around and through so many dr.s at one time i just did not wanna go at all anymore. i do not think i have ever put the amount or name on my pill that i take mag-oxide 400 twice daily/ naproxen 500mg 1tablet 2 time daily gabapentin 400 mg take three capsule by mouth 3 times daily/ diclofenac 50mg twice daily/ amitripyline100mg 2daily,methadone10mg3timesdaily/ and i exercise at a local gym and ride a bike 4 miles. mondays, wendsdays, and fridays. this really works for me keeps the depression down and keeps my body in shape. so i hope you all have a ok day! love packey

prepackey- you said
"you guys just do not know how healthy you are, at least you have diagose on your self. "

I take offense to this. I am not sure if I am understanding this as you intended. I am not healthy and I dont think itis fair to say such things to sick people. I am 31 years old and take 16 meds.
This really isnt a contest and I am not trying to start problems, but this is the kind of thing that really ruffles my feathers. We are all struggling and suffer, so saying you are sicker than me or anyone else is not fair.

I am sorry that you have no diagnosis, but beleive me it doesnt always make thing easier. good luck to you and sorry if I misunderstood you.


Dagger- The np said that new research shows that exercise may not be as good when you have fibro. thats all she said. they have always pushed me to exercise and still want me to move about, but maybe too much isnt as good as they thought. I also realize that the antibiotics flared my lyme up so I too think that antibiotics are likely in order. I have "only" treated lyme for 2 years and I had been off abx for 6 months up to the skin infection and the current meds.

I have not exhausted all options yet. I was hoping that I was going to be off for a while. I think I was/still am in denial about still being sick with Lyme. As you know its very frustrating, debilitating and a very long road.

what helped you most with your Lyme?

thanks for your input, I really appreciate it.

melissa

Melissa,

I agree with what has been said: sounds like it is time for a new doctor. I as I just wrote on Donna's thread, it often takes going through many bad doctors before you find that one good one. I know exactly how you feel, feeling as if you are at the end of your rope. I've been through essentially every medication and injection used for pain with no relief. I've even been through a whole bunch of alternative medicine like homeopathy, acupuncture, and osteopathic manipulation, again with no luck. All of my doctors are scratching their heads. They, as well as several outside consults, all agree that there isn't anything left to try except this peripheral nerve stimulator that my insurance just denied. Other than that all that is left is to remove or kill the eye & there is a fairly strong possibility that even that won't help the pain. So for now this stimulator (assuming the insurance accepts one of my appeals) is my "last resort." Yes, medicine is advancing every day, and doubtless new treatments will come along in my lifetime & perhaps then I will find relief. But that could be 10, 20 years from now, or maybe even more. It is really scary to think about the prospect of living each day in excruciating pain with no relief whatsoever for years!

I'd suggest you get as many opinions as possible. Go see a PM at a big well-known teaching hospital for a consult. Speak with other Lyme doctors. Just don't give up! Even though I mentioned that I "only" have "one" option left, I haven't given up fighting. I'm constantly searching for new doctors or therapies which might be able to help me.

Are you or have you considered taking anti-depressants? I know you mentioned that you see a psychologist, and that is great. CP related depression effects so many of us (me included). The depression tends to make not only our outlook worse, but our pain worse as well. And in turn, our pain makes our depression worse. If you can't break the pain cycle, maybe you can at least break or prevent the depression. It's not always the easiest thing to do (I'm unfortunately just as resistant to anti-depressants as I am pain medications -- I'm currently taking 3 antidepressants and they make only a slight difference). But if you find a great psychiatrist who is knowledgeable about CP, they can do wonders for some.

One other thing: have you tried any alternative therapies? They don't work for everyone, but the make all the difference for others. It is amazing how differently our bodies function. Alternative therapies can be good stand-alone therapies for some, or supplemental therapies for others. You might want to look into things like homeopathy (I'd suggest seeing an MD-homeopath over a non-doctor homeopath), naturopathy, acupuncture, osteopathy/cranial-sacral therapy, chinese herbology, structured mediation. I'm a big believer in alternative medicines (although they didn't help me much. lucky me. I think I have the most stubborn, resistant body in the world). I have seen them do wonders for several people. These treatments can be somewhat expensive, since many don't take insurance, but they are definitely worth trying if you haven't already. MD-homeopaths, especially are very Lyme-literate. I think you'll find that many of these alternative practitioners (at least the MD-homeopaths, ND's, and OD's) are much more Lyme-literate than most physicians. It might be interesting just to have a consultation with one of these guys & kind of pick their brain.

I know that this isn't exactly the same, and I don't want you to feel like I am pushing you into anything, but I just want to share a story with you in the hopes that it might give you some hope or at least brighten your mood a little.
Several years ago, one of my dogs became very sick with Lyme disease. It is unfortunately very prevalent here (I live in the state where it was first discovered). It manifested itself mostly in her eyes. Over the course of several months she saw several regular vets as well as 2 veterinary ophthalmologists & was essentially told by every one that she was going to go blind & there was nothing we could do. Traditional treatments for Lyme did not help. It then spread into one of her hock joints. She's a golden retriever, and her hock was about the size of a baseball++. She could barely walk on the leg & was in so much pain. Well long story short, we took her to a homeopathic vet & after working with this vet for several months, she went into complete regression. She still has permanent damage to her eyes and her hock & has her occasional flares, but for the most part we've been able to stop the progression of the disease & even reverse some of the damage. Conventional medicine failed her. Without the homeopathy, she could have lost both her eye sight and her leg, but now she is a happy, "healthy," 5 yr old dog!

Forgive me if any of what I said was mentioned before. I really can't read through all the posts anymore with the state of my eyes.

Hang in there girl! You're tough! You're going to make it through this!

big hugs,
Skeye

Post Edited (skeye) : 1/6/2010 10:12:21 PM (GMT-7)