I'm on Topamax and it helps me a lot
 

I don't seem to have the mental fog that some people feel with it. We started me on a low dose, and now I'm on the highest dose allowable.

I get a lot of breakthrough pain when it's hot outside. I use anti-inflamatory meds for that...

Today I am home because I am starting to get a lot of "body aches" all over. Like joint pain, not in the bones, but in the muscles around the joints. Can't figure that one out, but the Topamax has helped with the PN pain.

Good Luck!

Daniella, I think maybe you might try being a little more forceful when you tell the doctor not to touch you somewhere because it hurts so much. I know this is not the way you like to be, but you have to speak up for yourself.

I doubt that Nancy looks mean, but there must be something about the way she tells them not to touch her, that tells them she means business...

Cathie

Thank you all for your support and help. Your all wonderful and I'm sorry for all your pain as well. Melody its a lidocaine patch where you can wear it on the area for up to 12 hours and then off so I didn't know if over time it helps the pain overall or only when on. As for Mayo I dent my reports there so waiting to hear. I actually had two cortisone mix of something shot in that area and it made it worse. The doc issue I did call her to let her know what happened and that I knew but have not heard back. I do agree that I should of been more forceful. I fear making them mad or anyone or not doing exactly what they say. That is why I'm so confused and also why I have been sent for random tests and docs. I almost feel some of these doc make a commision on somethings. I don't know. Also I'm 28 but look like 20 or 22 and I feel they talk to me like I'm 12 and feel they can do more what they want. I'm sure it happens to older people too but I wonder if they just think I'm being a baby. Trust me I tell them at one point the pain is like wanting to die and also I don't cmplain usually I have beem in cardiac units and always waited till the last possible. Thank you for your med advice too. I may bring it up or maybe more of a combo of med cause I feel no relief and it make me sick.As for vicadin it is the thing that does take the edge off but I have high liver and have been on this for 3 months on and off which adds to the liver issue. Well thank you again

Daniella some meds can change the
 

#'s for liver function. I also am sensitive to some meds, I ask for a 'sample' pack[s] from the doc along with the 90 day script [for mailing in under my insurance plan] This gives me a few to try out and see if I have any bad reactions to the new med and IF I get a bad reaction, I'm not throwing away a lot of pills.
Docs who are patronising are well, docs I tend to not go to again! At times I have found comparing the PN pain to other types of pains [broken leg, fractured ribs...that kind of thing] helps the doctor assess the degree of your pain. These days I tell them I cannot put a number on my 'pain' as I've had it soo long I can't remember what being pain-free is like....and it's true. I guess you could say I've sort of gotten used to it.
I do use the lidocaine patches and they do help me. I have the ultracet as my back-up pain killer, along with the regular doses of daily anti-seizure meds.
Do take a look at all the meds listed in the 'stickies'. Share the 'list' [not the source] with your neuro, maybe....There mite just be a med on there that he has not considered. Worth a try?
Hang in there - you WILL find the right combination that does help keep that pain in it's place! - j

D
 

If there is a spot on your leg that you do no want the Dr. to touch,
PUT IN BIG PRINT do not touch,or hands off,so on. Dr's do this before
there own Dr. visits or before surgery this leg,this arm. I have seen it for
years and as a nurse helped a annious patients write all over spots
that go in one ear and out the other with careless or hard of hearing drs.
must need new batteries. Honest D it's your body,if you think or if they
ignored and hurt you before ,start writing. They are Drs. not God's,i have
a spot on one of my ancles that hurts, i point at DON"T TOUCH and
say in LOUD VOICE that hurt's remember. It doesn't hurt to do it with a
sweet smile or a big :D Sue Hope you get some help soon.

Thanks I talked to the reg doc today but put in a call to the neuro to talk about meds because this is not working and I should get a call tomorrow. I told the doc today who touched me that I knew this was going to happen and it was not out of fear like she thought but reality cause it happens every time. I take a little step forward off vicadin and then back when they touch me. She said I have to let people touch me. Why? What does it prove? She said my pain is complex and wasnts me to go to the pain clinic there. I said at this point I'm not willing but will think about it and talk to the neuro and she already made the apt. I have done everything for 4 months they have told. This has accomplished making me worse then when I started no joke. Not only is the issue worse but I feel ill from the meds and like run over by a bus. I go in and out of dizzy and feel nausea,out of body,ache now more all over and the leg now is worse. All the things they say won't make it worse like the pt,tests, so on do.I want to be better and would do anything. I'm not afraid of needles or surgery but to be put in more pain with this issue I can't handle anymore. I have hit my physical and mental limit. I want to try a new med and will talk to the neuro again tomorrow as now wants back on elvil which did nothing. Up till today was taking neurontin but I think I would rather if have to go back to current try cymbalta again at the lower as I was and fine side effect way but not relief but then the higher made me sick. See no clue. I agree these docs have been comparing mine to an injury. She even gave me a stretching info for heel spurs or the neuro said something like shin splints. Yeah that is bed rest pain for 4 months in tears.Also the pain system they want a rating or checking to see if it hurts proves what? Do they want to make us in more pain and they do nothing even when you say a high pain. Well I'll update more tomorrow if or when the neuro calls me back if she doesn't that will make me po and I think will go back to the original that I disliked at least he calls. Thank you for your support.

Daniella
 

Please, please see a pain clinic. And I'm wondering: Has anyone looked at you to see if you have RSD? Let me see if I can find a link......http://www.ninds.nih.gov/disorders/r..._dystrophy.htm You keep talking about your leg, was there an injury to your leg or your foot?

Billye

Thanks. Well at first I thought it was an injury from exercise overuse but it turned out to be nerve damage. They did bring up the rsd but none of the tests indicate that. I have other come and go issues but the left inner ankle/foot/calf is the bed rest pain issue. I really like the licodine patch and it helps I think.Does that only help though when on or does it build up like other meds? I was able to do a couple things today which is such a pleasure and now am taking their pain med tramadol instead of vicadin well today is the first day back and were going back to cymbalta as I talked to the neuro today and off elavil. I'm so drained and right now the neuro said to wait for the pc because of how I can't be touched at all without being sent back and having to take vicadin every few hours so to try this first. I'm having random panic attacks cause I feel I will never be "normal", I can't sleep,the pain. You guys know but thank goodness the horrible pain from the past few days has lessened and able to do a few things. The small pleasures like going to the grocery. Who would of thought. Well thank you again.Also thank you because you encouraged me all to use my voice to the docs and speak up. I asked about the cymbalta and told the one doc how she really hurt me when I specifically asked her not to touch me and I knew that would happen and I told the neuro who refered me to her. Its hard for me to speak up so thanks for the encouragment.

Daniella:

Oh, Lidocaine Patches. I have them in my closet. They save my life when my frozen shoulder acts up.

And they last a long time.

I had a double heel spur in my left foot, years ago. I got the orthotics. I really couldn't walk without them. The pain in my heel drove me crazy.I got a shot in my heel. And they did ultrasound also. So what happened??? I have no idea. The pain just stopped. Don't know why, don't care why!! And I haven't used the orthotics in a long time. They are still in my sneakers but because it's hot outside, I wear my sandles. I'm very careful with my feet but I like to show my toes. Women are so vain!!!!

Take care Hon.

Melody

Hi Daniella:

Try not to focus on thinking you will never be normal again and take one day at a time. If today was better, maybe tomorrow will be even better. If you can bring yourself to do this, try to find something you can focus on to help get your mind off of this. I know this is terribly hard, but just give it a try. Read, watch TV and if you can, get out of the house a bit each day. Anything that will help give you a mental break from this.

I was also wondering if the fact that your medications are being changed around quite a bit, might aggravate your pain.

And NO, you do not have to let anyone touch you.

Hang in there and let us know if we can help you.

Cathie