I'm trying to stay hopeful as I want to practice what I preach to you and others but I feel so lost and depressed. I went to the reg doc yesterday and again because she played with my inner ankle/foot I had a backslide in pain and have been crying since and taking vicadin. Any progress I see is ruined by a doc or a test. I tell them this every time and they still stretch the area. I'm loosing my mind. I will respond on this post to the other I wrote. The pm clinic here doesn't deal with meds and I have already had the shots which made me worse. At this point when ever a doc does a treatment I end up worse and this is every time along with pt or any tests. I can't go through that anymore. Its not just that day but even a week later. So onto the med issue. I talked to the neuro about the neurontin and feeling sick so she said maybe try the elavil again at higher. I heard though neurontin is better for this pain so may try to stay and see if I can adjust. Also prescribed lidocaine patch. Has anyone had any relief with this? I'm going to be in the poor house those cost 200 a month and my insurance doesn't cover. OY! I wanted her to come up with a med that has very little side effect but I have tried cymbalta,lyrica,neurontin,elavil. Does anyone know of any and that work that I could ask about? I'm waiting for the places like Mayo and Chicago but at this point I don't know how willing I am to go to more docs as they never listen when I say don't do anything to that area and I pay for days.Even through the vicadin again and I'm suppose to be off of that and I was until this. She prescribed naperson and motrin something too cause tramadol does nothing. Sorry for my vent but I feel the docs are confused with me and what to do. I'm a hard case like many of you I know but with my crappy past and still young age, I feel they see very few with my issues.Thanks.

Daniella,

Have you ever stated what your diagnosis is and if not, then have you filled out Liza Jane's charts located at www.lizajane.org? I've tried to go back and look at posts about what is going on with you, but what I'm finding is lost relationships, pain, using a cane and this type of post. Did you ever give us any info as to what your diagnosis is, how it was arrived at and what the treatment plan is?

I feel quite frustrated because I'm not able to find it and I want to be able to help. I'm sorry you are in pain again.

Billye

I have a list of about 75 meds for PN, that I've been keeping
and add to - anytime I see a new one.
If you want.....I'll PM it to you

Thanks. Yes actually many tests and different docs I have been dx with pn that was from the last ssep/nc. They are thinking there may be another dx for my other come and go symptoms but the bed rest pain is my left inner ankle/foot/calf. Really I feel like I'm back to suqare 1 from that doc. We thought it had started from an overuse injury but then with my other issues like feeling like a shot in the neck sometime,other leg issue,but the major and unfunctionable is the left.So finally the neuro dx with pn. I do have a long past of anorexia and that could of contributed to that but the eating disorder is still well now. I can't stand it the pain and not being able to function. The plan now is pain managment with meds but I'm so sensitive. So that is why I'm wondering if anyone knows of a med that seems to work with very little side effects?The patch I just got is as needed but was wondering if it just works when on or does it also help and build in the system?

Daniella, I couldn't handle any of the other drugs that zombied me out until they give me 200 mg Tramadol Slow Release x 2 per day, actually it was 300 mg x2 tramadol but the normal limit in OZ & the US is 200mg x 2 per day, apparently i was lucky to get the extra 100 mg, but anyway it worked with no side affects to me.
Also 150 mg Endep at night and 25 mg in the morning done the trick for me.
I must add that this worked good for me, it may or may not work as good for someone else, its only a suggestion that helped me.
I really do hope you find something that helps considerably for you.
good luck
Brian

What do you mean the patch is as needed? Are you talking about the fentanyl pain patch?. Have they changed the way they prescribed it??

You can use this only when you need it???. I never knew this. Alan wore it for 3 days and then changed the patch. When the pain got really bad (breakthrough pain), he needed vicodin.

Then the doctor prescribed it every two days. You should have seen the fight we had with the pharmacist who argued with us saying "no one would ever prescribe this for every two days". "It's a 3 day patch". Alan simply said "call up the doctor" (he was a pain management specialist out of Coney Island Hospital). Guess who got it for two days???

brother!!!

I do hope you get some relief.

Melody

Thanks. I actually just called my reg doc who put me back in this pain. I wasn't going to but my encouraged me to. I'm not good with confrontation but I finally got off the vicadin before the apt and asked her not to play with my leg and she did. I don't know what it will achieve but will see. Anyhow I was on tramadol and it did nothing. I was wondering if anyone has been on topomax? I saw something about how it helps with pain when I was researching the head pressure/stuffy feeling I get sometimes and someone said they were on it for nerve pain. I have never heard of endep. I will check that out. Do you guys ask your docs about the meds you hear? I just go on what they say but now I feel like there really not working hard enough for the pain I'm in. I'm glad you found something to help you.

Elavil is the same as Endep [Amitriptyline], my dosage was changed a few times before i got the right amount that worked for me.

Yes, I was on Topamax for a short time and found that it did help with pain. I have been on so many different things, it is hard to keep these straight. I am fairly sure I recall that Topamax made me feel somewhat confused, and somewhat out of it, but it did dull the pain.

It is perfectly alright for you to ask your doctor about various medications that you hear about. Don't be afraid to ask, you may come across a winner that will help.

Also, I don't know what the rest of you think about this, but if I told a doctor not to touch my leg, I would be pi**ed if they went ahead and did it anyway. This happens every time she goes to the doctor and she comes home worse than when she went.

Wonder if an epidural or trigger point injections would help? I am not sure you could even tolerate the injections in that area, but if some of the pain is from inflammation, perhaps this would help overall. Has she mentioned either of these to you? Trigger point injections are tiny injections given in the area of pain and I know those areas hurt, but they have lidocaine and a little cortisone in them, which helps if there is inflammation.

She has repeatedly complained of having problems with flulike symptoms. I wonder if seeing a Rheumatologist, even if rheumatological testing is normal, might be a good idea. I don't remember you mentioning this in emails Daniella.

Cathie

Hi Daniella;

You mentioned the lidocaine patch. This is much different than pain patches, a method of delivering pain meds. I use the lidocaine patches and they do help, although nothing I take completely ever takes the pain away. You may want to talk to your doc about the pain patches. Also, if the vicodin isn't working, have you tried percocet, (which is oxycodone with acetaminophen)? I take that for breakthrough because my pain doc says it's best for nerve pain. They all have different opinions and that can drive a person nuts when they see 5+ doctors for their condition.

Unfortunately, it takes a very long time to find an answer for pain control. You may have to find a new doc. Mayo in MN has a program for pain. I think it is a week long and others have had their insurance cover it. Something to look into. I'm so sorry you are in pain and that exams hurt you. I have the same problem but I must look mean because when I tell them not to touch me, they don't! lol

Wish I had more to tell you. Hang in there.

NancyH