[babs74]

Does anyone just get fed up with doctors telling them they cant help them? Or you need to see a specialist? I am getting the run around. Now my neuro wants to have me checked to something else all together. They say cause i dont have ALL the symptoms of crps that i dont have it now after a year. What is up with that.. The only 2 i dont have is.. the red discoloration, and the sensitivity to touch..My bone scan and Mri both showed thats what i have, and now after a year, well now im not sure what is wrong. Then what the hell are you treating me for?? I am just so tired of doctors giving me the run around. These guys are supposed to be professionals here. They are supposed to know more that i know. And its aggravating.. The last pain management dr i went and seen, he was a resident, he used reflex hammer on bad side. missed his thumb. and hit my nerve and i ended up frozen and was off work for 3 days because of it.. Had to go get a shot in the but of toradol.. Now there is obviously a problem here right? They arent supposed to make your pain more severe, but my 15yo son about came out of his chair and punched him in the face. He had appt that day, we had to drive 2 hours there.lol.. he was not happy.. the doc was squeezing my rsd arm so hard i was crying, it was horrible and he didnt care. I decided then that i wasnt going back. I am just so tired of this crap..I havent had ANYTHING for pain throughout this whole year and i am sooo tired of hurting.. I cant get anyone to write me a script for anything. I have a script for lyrica, but its high dollar and my insurance wont pay for it.. and wc isnt footing the bill yet. lawyer is working on it, but they are still fighting it, the jerks. So i suffer, and Im tired of fighting, and crying, SO what am i supposed to do.. cus the pain doc says go to family doc. the family doc says go to specialist.. i get nowhere.pain doc wont write anything stronger than naprosyn. seriously..and well i have taken it for a year. he wont up it.. it just stays the same..my scripts are the same no matter what.. NO NARCOTICS.thats his motto. am i just doomed to suffer through all this for the rest of my life? I am only 35.. i mean really is there some sort of pain relief? i know there isnt full relief, but is there atleast some that i can get at some point? and just when is long enough suffering for me to endure?.. Sorry for ranting.. but its so hard to do this day to day. with no help for pain.. and i dont want to keep going to hubby cuz he gets so upset cuz he cant help me.. and noone else will. He wants so bad to hit those doctors, and hes the one that makes me keep going to find others that may help..Hes always saying we will find one that will help, but i say when, when I am ready to just give up and lay down and just let it consume me? cuz im about there now...

[dealingwithtos]

Hi.

How far into Iowa do you live? I live in Minnesota and have had RSD for 4 years first in my left arm and now also in my right. I had a stimulator implanted a year and a half ago.

I can certainly tell you where I go which are both located in Eagan, MN. I don't know how far away you are from there. One is a pain specialist/spine surgeon (who also implanted my stimulator) and the other is an internal medicine doctor who originally diagnosed me when I was in the hospital for a blood clot in my RSD arm.

If you are interested, I would recommend going to the pain specialist first. Please send me an e-mail if you are interested.

Even with the stimulator, I have needed narcotics on my very bad days. What you need is a doctor that understands the condition and who can give you some options. But, also someone who can get the right "cocktail" of meds that will help with your pain - so you only need narcotics for your breakthrough pain - not every day. It took me about a year to find the right medications that help. Even then, I just changed muscle relaxers because I had such bone pressure.

The key is to find the right doctor and the right combination of meds to help.

I am so sorry that you are suffering.

[ynotretsevlys]

Babs, I'm sorry for what the doc's are doing to you. I have rsd in my knee and lower leg. I had 1 doc come at me with the little hammer to check my reflexes, I told him "please don't touch me with that" , he looked at me funny and quickly hit me in the knee with it !!!? I fell off the table and started yelling at him that he better leave the room because when I'm able to stand up I'm going to check his reflexes . I would keep changing docs if I were you until I found one who would listen to you. Remember it's your health, not thier's. I really believe that most docs don't know that much about rsd/crps and think it's just like any other type of pain, which you know is not true. Just like dealingwithtos said it's a matter of finding the right RX for you. (I haven't found mine yet either. I've been dealing with this for about 3 years now). I too feel fed up and just want to give up and give in, but I refuse to let this thing beat me in the end. Hang in there and don't let any doctor bully you. They aren't Gods even if some think they are. They are just people like you and I . Speak up and if you don't like what they say or do, walk out.
Again hang in there.
Tony

[wswells]

Originally Posted by babs74

Does anyone just get fed up with doctors telling them they cant help them? Or you need to see a specialist? I am getting the run around. Now my neuro wants to have me checked to something else all together. They say cause i dont have ALL the symptoms of crps that i dont have it now after a year. What is up with that.. The only 2 i dont have is.. the red discoloration, and the sensitivity to touch..My bone scan and Mri both showed thats what i have, and now after a year, well now im not sure what is wrong. Then what the hell are you treating me for?? I am just so tired of doctors giving me the run around. These guys are supposed to be professionals here. They are supposed to know more that i know. And its aggravating.. The last pain management dr i went and seen, he was a resident, he used reflex hammer on bad side. missed his thumb. and hit my nerve and i ended up frozen and was off work for 3 days because of it.. Had to go get a shot in the but of toradol.. Now there is obviously a problem here right? They arent supposed to make your pain more severe, but my 15yo son about came out of his chair and punched him in the face. He had appt that day, we had to drive 2 hours there.lol.. he was not happy.. the doc was squeezing my r that you aresd arm so hard i was crying, it was horrible and he didnt care. I decided then that i wasnt going back. I am just so tired of this crap..I havent had ANYTHING for pain throughout this whole year and i am sooo tired of hurting.. I cant get anyone to write me a script for anything. I have a script for lyrica, but its high dollar and my insurance wont pay for it.. and wc isnt footing the bill yet. lawyer is working on it, but they are still fighting it, the jerks. So i suffer, and Im tired of fighting, and crying, SO what am i supposed to do.. cus the pain doc says go to family doc. the family doc says go to specialist.. i get nowhere.pain doc wont write anything stronger than naprosyn. seriously..and well i have taken it for a year. he wont up it.. it just stays the same..my scri t pts are the same no matter what.. NO NARCOTICS.thats his motto. am i just doomed to suffer through all this for the rest of my life? I am only 35.. i mean really is there some sort of pain relief? i know there isnt full relief, but is there atleast some that i can get at some point? and just when is long enough suffering for me to endure?.. Sorry for ranting.. but its so hard to do this day to day. with no help for pain.. and i dont want to keep going to hubby cuz he gets so upset cuz he cant help me.. and noone else will. He wants so bad to hit those doctors, and hes the one that makes me keep going to find others that may help..Hes always saying we will find one that will help, but i say when, when I am ready to just give up and lay down and just let it consume me? cuz im about there now...

Hi Barbara, I'm so sorry that you are going through such a rough time right now. I have been there. You said this was a wc case, you should really get on your attorney and see if they can schedule an emergency medical hearing in front of the Judge. My attorney did this for me many times and boy the insurance company jumped. This is your health they are playing with, shame on them.I would see if you're attorney can help you find a Dr. that understands RSD and all the strange things that go with it.I have had RSD since 1986 and I am still fighting it. They did diagnose my RSD pretty quickly and started giving me nerve blocks but they just didn't hold. My wc insurance company even sent my husband and me to Philadelphia to see the supposedly best Dr. for RSD, at Thomas Jefferson Hosp. They did different kinds of nerve blocks, and I thought I was cured, I came off the plane, back home to Florida almost skipping, but 1 month later this crap came back. I think this is a disease that just keeps taking things away and doesn't give back. I think that once you find the right Dr. and he cooperates with a pain management team and they get an understanding of what you have been thru and are going thru you will feel a little better.Do any of your Dr's and or your attorney's know that stress , what you are going thru is bad for your symptoms and your general health. Please annoy your attorney to get the ball rolling. Your new friend, Wendy

[Debby]

Babs,
How far are you from Iowa City?? Or Davenport even?? I would think you could find a good PM doctor..........And what type of health ins do you have that they won't pay for lyrica??? That is standard med for Fibromyalgia & RSD anymore both. I was born & raised in NW IA.
And yes get a WC lawyer to get WC on the horn to paying for this stuff.

Wendy,
How long ago did you get those blocks in Philly? I would keep getting blocks if they work for you for a month like that, they can be accumulative.....

[babs74]

i was going to Iowa city, believe it or not the pain clinic there really couldnt help me.. there the ones that gave me the naprosyn.. i have other things, but i have complained alot about them not working. the only thing they have done is upped it to 1 more time a day. which didnt help so i said screw it. why take it if it dont help me at all?. I have title 19 right now.. Wc is about to hit depos within a month. They are just taking there time.. about to lose my insurance next month and drs are just finally pushing for me to have lyrica.. after 8 months of me begging them to do something.. so trying to get dhs to let me keep it.. i just have to fight to keep insurance, pay bills. get pain meds. fight for any kind of help these days and im just so tired.. its been over a year now.. it just seems hopeless.my hubby wont let me give up.. so of course for my kids it will never happen.. I WONT give up. will keep fighting. i am just fed up with doctors and there bull. my lawyer is the only one who will tell me what is really going on with my body, no doctors will tell me. they give me the run around.. what kind of crap is that.. i have been very depressed. and its not just that.. people at work, once they found out i had a disability have treated me so badly, i want to just start hitting them. I went to corporate about it. Got no help.. attorney said just keep a journal with every thing thats said to ya.. why do people do that.. and all this started over asking my gp about a pill for my naseau.. she refused.. said my pm needed to do it.. and my pm says gp needs to do it.. so now who is going to do it?

[babs74]

Originally Posted by Debby

Babs,
How far are you from Iowa City?? Or Davenport even?? I would think you could find a good PM doctor..........And what type of health ins do you have that they won't pay for lyrica??? That is standard med for Fibromyalgia & RSD anymore both. I was born & raised in NW IA.
And yes get a WC lawyer to get WC on the horn to paying for this stuff.

Wendy,
How long ago did you get those blocks in Philly? I would keep getting blocks if they work for you for a month like that, they can be accumulative.....

I live in Ottumwa, btw.. forgot to add that.. sorry.. just frustrated..

[Debby]

I had problems with UCD (a teaching hosp like Iowa City) in Sacramento, long story, but that did get cleared up & I might try to go back there, as I am tired of driving to Sausalito to my PM Doc. mostly cause mine left the clinic after 5 yrs there & I don't have the rapport with him like I did with the doc who left. And also I am tired of the drive, actually my hubby is......as he does the driving over there.

Anyway, look I know the frustrations you are going thru, all of us do. Heck I went without prescription coverage at one point for 9 months. BUT I didn't let that get me down & I didn't go with out my meds either. I don't remember how I found out about the website needymeds.com, but it is a Godsend. I got everyone of my meds, but one, for free thru the pharmaceutical companies the whole 9 months until Medicare Part D started. It was work to get them free, paperwork etc, but it was so worth it. BTW, Lyrica is listed on the site. Check it out.

Now about your pain control, I went for over 2 years without enough pain meds to make a difference. My GP would only give me 3 Norco a day while I was trying to find a PM doctor, might as well have been sugar pills. One doc I found was like Hooshmond, he doesn't believe in giving pain meds to people who have RSD because you have to keep increasing the dose. He does do my procedures(SGB's etc) to this day tho. I had to keep looking then a friend referred me to one over in Mill Valley (now in Sausilito, both next door to San Fran) so I called & I had to wait 6 months to get into him, but it was so worth it. Then it took almost a year to reach the dose (which I am still on since '05) that made me comfortable enough I could function again. He started me out at 30mg & I now take 200mg of the pain medication every 8 hrs. The only thing that has changed is the amount of BT pain meds I take when a flare starts up or when one hits me over the head like what has been happening lately. SOOOOooooooo a good PM doctor will start you out on a low dose so he can work you up to one that helps you. They try to keep you on the lowest dose possible & that is the only way to do it. Those 2 yrs are like blur in my mind now.........I was conscious, but in so much pain it is hard to remember anything else. So when working with PM docs, clinics etc you have to have patience until they reach the dosage of meds that will work for you. Am I in pain? Yes, but at a level that I can manage. I have gotten so use to the pain in both of my feet now, that I can pretty much ingnore it unless it is flaring, or they cool to cold. So if you only stuck with the docs a few monhts you didn't give them a chance to work up your dosage & maybe you should try them out again. When we are in 'this' kind of pain we want it gone NOW. I wanted to die during those 2 yrs, but my darling grandchildren kept me from doing anything drastic, but if I had died during that time frame, it would have been a blessing to me at that time. Now that I have a better pain control & a better grasp on my pain I am sooooooooooooooooooo greatful that I didn't die.

Debby
ps: I remembered how I found out about needymeds.com. I was dx'ed in 1989 with Fibromyalgia. Before there were forums like this, there were & still are news groups. There is probably even one or more on RSD. Well anyway I use to belong to a Fibro news group & someone there recommended the web site to someone else & I have just always remembered the web site. It literally saved my life those 9 months I had no prescription coverage. After having the type of pain control I still have, I don't know if I would have been able to go back to NO pain control during that time frame & not do something really stupid. I lost my health ins after my employer (I worked for the county I live in at the time) let me go finally after a year out on disability. And there was no Medicare Part D yet. My hubby is on disabilty also, he was when we married. The plan was I work he stay home take care of his 2 grandson's we raised, while brought home the bacon. Was a good plan cause I loved to work. Well, life decided that that was not the plan it wanted for us.

[babs74]

the problem is they just wont give me anything.. now they want me to see another doc.. i finally faxed records today to another doc.. said would take about a week or 2 to maybe get into see him if he accepts me.. and he specializes in crps.. my attorney agrees with him.. my problem is been dealing with no meds for over a year.. they just wont give them.. No narcos at all. and i understand they are addictive, but i hurt everyday.. and i have kids that need me everyday.. I have to function..so if not narcos then something.. just try. thats all i am asking for. someone to try.. went to first pt and they actually tried today.. going to start that at home tomorrow.. its a long drive and he wants to see me biweekly.. which is ok.. willing to do it at home.. going to do aquatherapy at the Y! here though..i just want someone to help me. someone who cares enough to try.. i am not giving up.. its just frustrating ya know..

[bubbleshea]

My daughter has been sick with RSD for over 10 years. It started in her wrist when she was ten after a slight break. After nerve blocks it subsided. then at 15, and a knee surgery she started having extreme pain inside and out, burn like blisters (now over her whole body) interna pain in her stomach, inability to swallow, internal bleeding of kidneys....I could go on. For 10 years doctors have accused her of self mutilation and being crazy. Until just this year when we found a doctor who took the time to refer us to someone who knewabout it in Philadelphia. We live in DE and believe me, none of the doctors have a clue what RSD can be. Every time she had a surgery or an injury she goes into one of these flares and this time, a tooth pull started the whole think. This time it is very bad. Good Luck