So much pain!!
 

Desi,

Hi,
My name is Sue and I am new to this site. Iam sorry for the pain. The bad days can be so long when you have RSD. It angers me when a Dr. has no compassion for us. Just a few kind words, a little time, anything would help. I've seen so many of the Dr.'s at the pain clinic, they don't even know who I am or how I feel. Thank god there are people here that understand and its sad but we all have our bad days. Talking to someone who knows and just venting can be the best medicne. I hope you have a better day.

God Bless
Sue

Desi,

I am so sorry to hear that you are having such a bad day... I hope that the steroid kicks in soon and your pain levels go down quickly...

Many Gentle Hugs to you..:hug: :hug: :hug:
Dawn

hey desi. it sucks not being understood. i just posted about getting thrush from my shots so i didn't get to have my 3rd today. try and find comfort here in this forum. i know that none of my friends or family members understand me and it's hard to find compassion. i mean TRUE compassion. sympathy is one thing but empathy is quite another. at least here, people actually KNOW firsthand how you feel.

shalom,
ang
:hug:

hi desi,
sorry the shots are not working as well as hoped for. i think you should push for something for breakthrough pain. have you tried ibuprofen? it works very well for me. i take 800mg. also to apply heat and elecate the areas when you can.
joan

desi, the ideal amount of neurontin for rsd is 400mg three times a day. ask the doc to up that for you it might help. joan

Hi Desi, Make Sure You Tell The Doctor That His Staff Is Interfering With Your Communicating With Him. If He Sides With The Staff, Dump Him, And If He Sides With You, I Betyou Will Not Have Trouble Getting Through To Him Again. Many Of These People Are Just Secretaries Or Medical Assistance And Don't Have A Clue What They Are Talking About. It Is Hard Enough To Get A Doctor Who Understands Rsd Never Mind An Aide! Hang In There And Demand What You Need. You Are Your Own Best Advocate. Joan

Just wanted to add (about Neurontin):

I am on 2700 mg of Neurontin a day (900 mg per day). I *think* that the highest dose Drs. will put you on is 3600 mg, as far as I know. My PM Dr. is willing to go up to that amount. So from what you are saying, it can be increased quite a bit.

Different Doses help different people. Us RSDers are different- some meds. help us that don't help others, the same with doses of meds..

HTH.


Sending you ((hugs)), Desi. I am having a rough time at the moment as well. RSD is very hard!

Hi,

We're going round in circles here. Desi, your dosage of neurontin is extremely low. As I've already posted to you about this I won't repeat myself, but why don't you print out the paper I cited in one of your other threads, at:
http://neurotalk.psychcentral.com/sh...7351#post97351
and take it to your doctor.

Do you have the Pfizer Neurontin Patient Information sheet - comes with the box? The dosage is in there. It says to start on day 1 at 900mgs and increase day 2 to 1800 mgs (900 x 2), increase day 3 (900 x 3) to 2700 mgs and it can be taken up to 3600mgs.

Or download the PDF PI sheet from Pfizer:
http://www.pfizer.com/pfizer/downloa..._neurontin.pdf

And you can find other reputable papers about the recommended dosage for neurontin, either by searching this forum or googling, saying the same thing. Just make sure that the papers you bring your doctor are from reputable sources - don't take forum messages, that's a sure way to get disrespected and thrown out by your doctor.

Show the doc your printed info, but if the doc still won't listen, throw him/her out.

Allen has a favourite saying: the squeaky wheel gets the grease. In other words, speak up, make them listen, bug them till they deal properly with you.
all the best :)

Thanks for your reply Rogue. I called my PD and again the woman there (sec) took charge!! I told her, Gosh lady, I wish you could feel this pain for 1 minute. I said I want to ask my Dr. if I can up my neurotin.. she then said, hold on.. 5 min. latter she said "The Dr's not in" and when you see him on Tues. for your 3rd nerve block tell him what your going through!!! I then sais, "oh so, Im suppossed to suffer until Tues?? get him to call me!!! NOW!! she then called me back and said Dr. Donatelli said he's still waiting for my 3rd. and last nerve block(I hope) and see how that go's. I said.. oh, so he had you call me back?? he can't??!!! I'm sick of all this!! I will try that liquid mineral bath. sounds relaxing. thank you! P.S. "GOOD for your husband, Michael telling your Dr. off!"!! way to go Michael!! LOL Love, Desi

Thanks Artist! Im sick and tired of all this. I told the sec. that the neurotin is so low of a drug!! I may shop around for another pain management Dr. Love, Desi

Thank you Vanessa!! my pD is so young (Doogie houser) LOL I just don't think I am going to go with him anymore if this third and supposedly last neck (ganglion) block doesn''t help! Love, Desi P.S. I am sorry your having to deal with a lot too. seems like you have a lot on your plate as well! Love, Desi

Hi Desi,

Yea, pain does suck. I just suffer with mine. I can't find a doctor. Haven't found one for a long time who will sit down and just talk. It's all get em in, get em out fast so they can see the next patient. I am beyond discouraged myself. :o I don't know how old you are but the older I get there seems to be new pains popping up all the time. :( Young doctors don't understand and the older ones have heard it a million times and are immune. I just don't know what to do about it.

For awhile I could email my doctor from a website.
I don't remember the one that I used in 03.
Kaiser Permanente has it I think.
but i found a few others-
http://www.everymd.com/every_md/web_view/webview.html
https://www.relayhealth.com/rh/speci...whatCanDo.aspx
http://www.medem.com/pat/pat_startoc.cfm

neurontin dose
 

Just for comparison-
My daughter (age 13) and is a whole 84 pounds is currently on 2400 mgs everyday and has at times been up to 3600. My understanding with neurontin is that you need to gradually increase and gradually decrease the dose when going on and off of it. We have always started with 100mg, for three days, then increased it 100mg every three days until we hit the intended dose and we come off of it the same way.

I don't know why you would have the dose you have, but if my tiny girl has such a high dose compared, it might be worth asking why your dr doesn't feel you should increase. Be strong and ask for his rationale. Good luck

Thought this would be a great link to post:

http://www.aapainmanage.org/

Stand up for yourself
 

Your doin a great job!
Dont back down from them, the worst that can happen is that they wont see and you will still be in pain.

I had run in a fter run in with my doctors staff. They would on purpose not call in the refill for 2 weeks, or schedule my appointments 2 to 3 weeks past the time frame for a refill. Never call me back!

Finally I started asking the doctor questions about it, and she didnt have a clue it was happening. She even called one certain @@##!! into the room and grilled her. All it got me was more trouble with the staff, but I felt better.

I should have fired the doctor because the doctor finally wouldnt take my insurance anymore. She said it wasnt personal, and another doctor that worked for her confirmed it was a money issue, and that they were working on replacing some of the staff because of what I had told her.

Like wiix I am now doctorless, and have to go to the ER if I need anything. So far I get treated better at the ER than my doctors ever treated me. At least they take time to understand what is goin on in the ER for me. Well except for Doc C, I wish he was still around here. The only doctor that I really trust.

I am having the roughest time of my RSD life so far. The monster has spread throughout my body, even into my upper torso. The pain is ruthless, as it is non stop! I feel like one foot is in a campfire, and the other one has a car parked on it. With a couple of spears through my right hip, and a general feeling of being hit by a truck.

Keep after those doctors, and try to bypass the staff as much as possible. When you do see that Young Doogie Howser tell him about your frustration with his office. You might be surprised by his response :winky:

Desi
 

Desi,

I sent you a message... hope you see it !!!!!!

Thanks
Jules

I second this: doctors usually have no idea what their staff say to their patients, and 90% of the time, the docs appreciate learning from their patients what is really going on out there in the front office. And they are usually furious with the staff!