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-   -   CRPS - Is Pain Doctor able to DX? (http://www.healthboards.com/boards/reflex-sympathetic-dystrophy-rsd-crps/289648-crps-pain-doctor-able-dx.html)

Budko 05-31-2005 07:07 AM

CRPS - Is Pain Doctor able to DX?
 
Can/is/Normally a Pain Doctor able to DX CRPS?

Why is my Doctor so dead set on calling it Complex Regional Pain Syndrome?

I am having trouble finding a Doc for a 2nd opinion. Should I forget the 2nd opionion and move forward? I am scheduled for a Nerve Block on the 6th and I feel like I am running out of time and that I am going to be forced to do the block due to pain. The pain has been out of control.

Once the SNS is under control and you are pain free, does the other symptoms go away? or is this the time to figure out what will afflict me the rest of my life?


I have been suffering for 3 years, is it normal for me to be breaking down with this DX? I was hopeing to have a better reaction. All I want to do is sleep. I know! Depression!

Thank you for reading.
Kim

RSD_Angel 05-31-2005 08:14 AM

Re: CRPS - Is Pain Doctor able to DX?
 
Kim,

Sry to hear that you are having such a hard time with this.. adn you have come to the right place to find help!!

First Complex Regional Pain Syndrom is the same as RSD or Reflex Sympathic Dystophy. Not sure if you knew that or? What kind of symptoms are you having?? and what started the CRPS/RSD? (a surgery or fracture or?)

If you dont feel good about your pain mangagment doc and want a second opinion , go for it.. thats why there is more then one in your area adn your insurnace will cover it also. And yes a Pain Mang. doc is usually the one that diagnoses RSD/CRPS. They are trained better then the rest of the docs, like ortho's or primary care doc's or even neuro's. and PM doc's are the ones that treat RSD/CRPS and know how to treat it right (usually) there are some PM docs that arnt really up to par about the new treatments and everything.

Where do you live, maybe one of us on here can help you find a nother doc to see. we can post names and addys of the docs but not the phone numbers so hopefully we can help ya.

Is the block on the 6th your first block? and did it take doc's 3 years to finnaly diagnosis your pain as RSD/CRPS or have they just delayed treatment? Because the sooner the diagnosis adn treatment, like with blocks, the sooner it goes in to remission and easier to get into remission.

I have had RSD now for 3 years in my foot and leg and lower back and have 2 stims implnated and have had MANY MANY blocks and they only helped for a couple hours, but would kill for one now.

If you get into remision, your pain and all the symptoms will go away yes.. ad you will be back to your self again, but because RSD/CRPS is always gonna be there, it can come back at any time, like if you hit your knee on sometihng or stub your toe.. its that easy but there are many people that have gone into remision and have stayed there for years now.. its all unpredictiable and thats the other bad part of being diagnosed with this.

And yes it is very normal to be hit with depression when being diagnosed with this. and get treatment for this now before it gets worse. Because it will only make the RSD/CRPS worst. Stress and food and depression all make the disease flare up and we need to get help with that so it doesnt send us into more pain then we already are in!!!

If you dont want to do the block yet, and wnat to get a 2nd opinion, call around to pain mang. docs and see when the soonest you can get in and tell them its for a sec. opinion and that he wants to do blocks asap and see if they can get u in with in a couple days to a week , just so you know that your doc is on the right track and so it will make you feel better also. Blocks arnt that bad of a procedure to have, adn ask for sedation it will be MUCH better and you wont konw whats going on, and hopefully it will put you into remision for good!!

Hope i have helped, and keep in touch and =nice to met ya!!
:angel:
Amber

Budko 06-01-2005 06:25 PM

Re: CRPS - Is Pain Doctor able to DX?
 
[QUOTE=Ambrusky]Kim,

Sry to hear that you are having such a hard time with this.. adn you have come to the right place to find help!!

First Complex Regional Pain Syndrom is the same as RSD or Reflex Sympathic Dystophy. Not sure if you knew that or? What kind of symptoms are you having?? and what started the CRPS/RSD? (a surgery or fracture or?)
[COLOR=RoyalBlue]It started with Ptosis, left arm & leg numbness and tingling, Lots of Arm and leg pain - like it was between the muscle and bone, Temp. intolerence, Teeth hurt for days on end and bone loss and teeth shifting, Chronic Headaches , ear pain and hearing impairment, skin changes, visual changes with retinal holes and double vision, blurred and lose partial sight in left eye and many others I forgot[/COLOR]

[COLOR=Blue]Onset - I don't know, I went in for a gallbladder removal 3 years ago and I have never been the same. In Jan. I saw a Craniofacial Doctor (DDS) and Said I had TMJ, he fitted me for a splint, then off to PT I go and she found a Instability in my Neck said it was caused by an accident I had 18 years ago (I saw a Chrio for 2 years, but I don't remember anything about it), So back to the DDS and He says Blah Blah, you have CRPS and it is causeing the instability, so you need a Block. And Here I am. I have every test known to man. They were considering that I had possible MS, I have some odd ANA's, and Thyroid Disorder (which is under control), Here is an odd thing My Endocrinologist says that I am perimenapausal, but HEY! I am Lactating HUH??????????? I just had Bone Density and I have bone loss in Spine and Dental area.COLOR]
If you dont feel good about your pain mangagment doc and want a second opinion , go for it.. thats why there is more then one in your area adn your insurnace will cover it also. And yes a Pain Mang. doc is usually the one that diagnoses RSD/CRPS. They are trained better then the rest of the docs, like ortho's or primary care doc's or even neuro's. and PM doc's are the ones that treat RSD/CRPS and know how to treat it right (usually) there are some PM docs that arnt really up to par about the new treatments and everything.

Where do you live, maybe one of us on here can help you find a nother doc to see. we can post names and addys of the docs but not the phone numbers so hopefully we can help ya.
[COLOR=Blue]I live in New Mexico. This DDS says that there is NO ONE here. That he and his Son are the ONLY ones here that deal with the pain of CRPS[/COLOR]
Is the block on the 6th your first block?[COLOR=Blue]Yes and No - I have the option to change the Appt. to Block or Consultation! But Right Now it is just a Consultation[/COLOR] and did it take doc's 3 years to finnaly diagnosis your pain as RSD/CRPS or have they just delayed treatment?[COLOR=Blue]No, I just was DX'd 2 weeks ago, but have been on my journey since 2002[/COLOR] Because the sooner the diagnosis adn treatment, like with blocks, the sooner it goes in to remission and easier to get into remission. [COLOR=Blue]When do you know it is too late? after you get the block, when it does not work? are thier Physical signs it is too late?[/COLOR]

I have had RSD now for 3 years in my foot and leg and lower back and have 2 stims implnated and have had MANY MANY blocks and they only helped for a couple hours, but would kill for one now. [COLOR=Blue]So, the blocks don't work after a while? like you get immuned? How many have you had in the last 3 years? and of those how many worked?[/COLOR]

If you get into remision, your pain and all the symptoms will go away yes.. ad you will be back to your self again, but because RSD/CRPS is always gonna be there, it can come back at any time, like if you hit your knee on sometihng or stub your toe.. its that easy but there are many people that have gone into remision and have stayed there for years now.. its all unpredictiable and thats the other bad part of being diagnosed with this.[COLOR=Blue]I have read and heard that with CRPS that many people have had many Operations, why? Is it part of CRPS or Injury. I heard that some are having hands and feet removed due to CRPS, true? Does CRPS damage any type of tissue? and if yes, How? [/COLOR]

And yes it is very normal to be hit with depression when being diagnosed with this. and get treatment for this now before it gets worse. Because it will only make the RSD/CRPS worst. Stress and food and depression all make the disease flare up and we need to get help with that so it doesnt send us into more pain then we already are in!!!
[COLOR=Blue]Amber, thank you so much for your kindness. I really need to talk to Someone. THe whole family is falling apart. My husband is.....not himself and I am hiding from the kids. This is hard. I have to make a decision, soon, with not much answers. My DDS is not very helpful, all he says is "Go Research and I encourage a 2nd Opinion" Oh hell, I am lost. Thank you and I look forward to your response.
Kim[/COLOR]
If you dont want to do the block yet, and wnat to get a 2nd opinion, call around to pain mang. docs and see when the soonest you can get in and tell them its for a sec. opinion and that he wants to do blocks asap and see if they can get u in with in a couple days to a week , just so you know that your doc is on the right track and so it will make you feel better also. Blocks arnt that bad of a procedure to have, adn ask for sedation it will be MUCH better and you wont konw whats going on, and hopefully it will put you into remision for good!!

Hope i have helped, and keep in touch and =nice to met ya!!
:angel:
Amber[/QUOTE]

Gaollan 06-01-2005 09:03 PM

Re: CRPS - Is Pain Doctor able to DX?
 
As far as doctor go, here is a list I found tonight. These are Pain Management doctors.

Robin N Hermes MD, Albuquerque

Irwin John Isaacs MD , Albuquerque

Michael Francis Malizzo MD, Albuquerque

Marc Slonimski MD, Albuquerque
Carmelita B Agodon MD, CHRISTIAN HOSPITAL
1901 REDROCK DR
Gallup

Joan Patricia Lewis MD, STE 200E
4273 MONTGOMERY BLVD NE
Albuquerque

Christian R Schlicht DO, Albuquerque

Saud Ikram Siddiqui MD, Clovis, NM

Arpad Zolyomi MD, Albuquerque

RSD_Angel 06-02-2005 06:38 AM

Re: CRPS - Is Pain Doctor able to DX?
 
Kim,

Im am soo glad that i can help you or at least be there for you!!

Sounds from what you wrote that you have been through H@%$ and back and thats soo like what i have been through. And you need to find another doc at least for a second opionion. Your doc isnt the only one in the State that deals with RSD, adn that right there should raise some major flags. Here are a few names from a site that only puts execlent docs onthere and these docs also do stim implants if you need to go that far, like i have had to. And this way if you do need a stim or try one out , you wont have to change doc's .. here are their names... please call them!!

[COLOR=Indigo]Robert Zuniga, MD
Osuna Medical Associates
Address: 5740 Osuna NE
Albuquerque, NM 87109

Craig S. Naim, MD
Pain Solutions
Address: 715 Martin Luther King
Suite 201
Alburg, NM 87102

Raul Rivet, MD
Address: 555 S. Schwartz
Farmington, NM 87401

Cesar Velarde, MD
Mountainview Regional Medical Center
Address: 4311 E. Lohman Avenue
Las Cruces, NM 88011

Philip T. Shields, MD
Neurosurgery New Mexico
Address: 531 Harkle Road
#1D
Santa Fe, NM 87505[/COLOR]

We cant post the phone numbers for the docs but this should get you enough info so you can look them up.

You asked about the blocks and if they stopped working for me. Well, they really never worked for me. i went in the hosp to have them done every week and i had to stay there for 2 hours after the block so they can watch my bloood pressure and when i got the blocks and by the time i was released form the hosp.. the block stopped working and i was in pain again. And my doc at the time kept on having me have them because he thought after a few, my body would kick in and make them last longer, and they didnt. I have had 8 blocks total and all of them lasted 2 hours or less.

I have also had epidural infusions that i am in the hosp for a week at a time hooked up to the epidural and it would make my legs numb and warm and no pain for the week, and i loved them.. actually would kill to have one now. but as soon as the epidural came out and the numbing meds wore off,, the pain was back ten fold. I also have 2 stims implanted trying to save my foot. and yes, there ahve been people that have had their RSD limb cut off bc of it, but it is highly suggested not to becasue it will only spread the RSD and make fresh new sites for the RSD to set in.... only as a last measure really and thats even if your doc would consider it. My doc said no way, but also in the same sentence said that if i broke my foot or ankle right now, that there would be no way of saving it , because of the severity of the osteoporosis and there would be nothing to pin and screw or even if a cast would do it, it soo dead there, it wouldnt fix itself...sooo..???

Like i said ihave had RSD for 3 years now and was delayed diagnosis for 4 mos and by then it was too late and it was full blown and progressing fast. And not to sugar coat it for you and not lie to you , if you have had it for 3 years now, its not good chances about geting in to remission, at least easily. And thats why you have to find a new doc!! yours sounds evil and when he siad to you that his son and him are the only ones in NM... i mean ????? get out while you can!! I had 3 docs' before i found the one i have today and have had for 2 1/2 years and know what that feeling is when you know you need to get another opinion and dont know how... dont feel like that.. and your doc should be really open to you seeing someone else for a second opinion.. if isnt open to it, then thats a definate flag to get out!

And also, the skin and bone and muscle are all effected by RSD. I have bad atrophy, which means muscle/tissure death, in my leg its almost 2 inches smaller then my other leg. and i also have bad swelling in my foot and ankle and it looks like i have a cankle.. (no define seperation of the ankle and calf...lol) and its 2 times its normal size.

Have they sent you to PT for the RSD??

And also isnt a DDS a dentist?? I really dont thnk they are qualified to # 1 diagnosis RSD, but also to treat it!! PM docs can deal with RSD no matter where it is and what caused it, and are the only ones to really treat it other then maybe neuro's or orthos but not dentists...!!!

I know how you adn you husband feel... i alway hide and avoid people too. its easier to do that then try and hide the pain you are in and also when they ask how you are. Get help though.. i would go and talk to someone also. i have a counclor that i see adn he has helped me so much.. its easy to just talk to someone that doesnt know you or your family and is out side of what you are going through and it feels soo good to have it off your chest nad not holding it all in bottled up!! there are psych's that specialize in PM patients, thats where i found mine. and if i found one in the little town i live in, in Upstate NY.. then i think you prob can also.!!

Again, call these other docs nad get in to see one of them and i would put off your block with your other doc for alitle while.. it wont hurt and maybe you dont relaly need it either!! Has he given you meds to help with the RSD, like neuronitin or elavil or evn pain meds???

Hope to hear from you soon!!! ;)

:angel:
Amber

Budko 06-02-2005 08:53 AM

Re: CRPS - Is Pain Doctor able to DX?
 
Hi Amber,

Thank you for responding so quickly.

Ok, this DDS is really a Craniofacial Doctor, treating facial pain, but he is a DDS. I agree with you, I am leary of him. Have you heard of a Craniofacial Doctor?

I have the list of Doctors and I am going to call. On this list, Are these Docs all aware of CRPS? or should that be something I ask when I call?
This DDS swears that I have to be careful with what I say to our Medical Docs here because they do not believe that CRPS exsists. So, what is he up to?

As far as treatment goes, I have been on Neurontin, Amitripit? (antidepressent), Topomax, All Migraine meds, Steroids - oral and injection, and Now my MD's treatment is a trip to ER for the ole' Morphine Injection. I have seen 5 Neuro's, Rheumy, Endocrin, ENT and 4 Primary's, searching for an answer. I am a firm believer that New Mexico has a problem with our Medical System. Do you know how many times these Docs told me I was nuts! So I even went and saw 3 not 1, but 3 Shrinks, 2 said it was physical and the other was hungry and said I had Childhood issues. Stuff your childhood issues right up your comfy couch.

Ok, the destroying part of CRPS - My injury is in my Neck, and since they contained the HEadaches (but not for long- my teeth hurt, first sign of Headaches is on the way) I have relentless pain in Neck and Shoulders. What is in store for me? It is in my Neck, how much and what type of damage can happen to my Neck? I think it has already spread to my left leg and left and right arm. I feel awful pain in these parts. I have some odd things happening to me and I can't get a Doc to take me seriously.

Thank you so much for all your advice and Help. Write soon!

Kim

RSD_Angel 06-02-2005 10:44 AM

Re: CRPS - Is Pain Doctor able to DX?
 
Kim,

I have heard of a Crainofacial doc, but not to treat and diagnosis RSD??? And for him to say watch out what you say about RSD to other doctors is not cool.. and it sounds like he is almost covering up something he did wrong or that he doesnt want to treat.

And like you have been told its all in my head by other docs, and i just say, listen.. how in the H%$* do I make my foot and leg turn blue and red and go blotchy? I must be really magical and should be making millions then..lol and when they just say its a fluke or say it could be Raynauds dz then i tell them how come i have the severe pain and the sensitivity to touch and the uncontrolled swelling? and they just put me off and say see ya in a couple weeks.. well the pain got so bad and my foot started to freeze up and invert so that i could only walk on the outside of my foot and the rest was stuck up in the air, i went to a university town that had the BEST PM doc i konw of and he is the only one in Upstate NY that does invasive and advanced prodcedures for RSD. So i felt soo lucky when i found him bc when i saw him the first time he said that if i waited anther month or 2 to see him that i would have lost my leg due to bone death and muscle and tissue death. Soo its been a fighting battle since then but my doc is willing to try any and everyting to help me. I have been through most of it and only have 2 options left for me. One is Botox injections in my leg to see if it will flatten my foot and relax my tendons in my foot and the second is a pain pump implanted. soooo.. i would get treatment with a good doc and fast and you have soo many options to start and treat yours. I dont want anyone ending up like me and all because of some duh of a doc that is trying to cover up stuff..

You asked how much damage RSD can do.. well.. alot. I havent been able to wiggle my toes or move my foot up or down or side to side in 2 1/2 years bc of the RSD attacking my nerves and tendons in my foot. My doc said that i wouldnt get them back bc they have been aten up by the RSD. And if the Botox does work and flattens out my foot, then i will have to have a surgery to fuse my ankle in that posititon so i have some stability in it....although they say that i have bones of an 82 year old in my foot and leg, i dont know what they would do to fuse it together , but they siad it could be done if i have lost the other motions , it just needs to be done so i wont fall down....

Your doc should take you seriously , even if it feels like a stupid question or pain , no question or pain should go with out looking into. I really think your doc is up to something and the more you delay seeing a good doc, the worst the pain is gonina get and also spread. I dont know how you are dealing with it in your arm and neck area.. i can just bearly stand it in my foot and leg nad back..

Get calling around to docs and the ones i posted know about RSD and are up to date about all the treatments, but if they arent around you, see if there is one in the phone book. I travel 2 hours to see mine and thats what i needed to get out of the area bc all the docs in my area were covering for one an other and dint want to step in and help. Sooo i would even say look for the ones that are a way's away, but not far that you hve to drive for evr.. and if you say that NM doc's are nuts or something.. go out of state if your insur. allows.. or call them and say i have tried all in my area and want to go out of state to see a quailifed doc and they will do it. my grandma did that with her cancer doc's.. she went to maryland from NY an dthey covered it!!!

GOOD luck and keep in touch!!!

:angel:
Amber

Budko 06-02-2005 02:37 PM

Re: CRPS - Is Pain Doctor able to DX?
 
Awww! What a Relief. I have been going nuts for 2 weeks. All I wanted was a list of some Doctors that treat CRPS. I have searched for 2 weeks and have really came up empty handed. I called everyone I knew and no one could help. I even called a Support Group here in NM and the guy I talked to was.....well lets just say, bitter. I didnt even know what kind of Doc to see and the DDS was encouraging but not helpful.

When you mention he is hiding something, well something clicked in my head. When I was in Physical Theraphy for Tight Neck Muscles, Everything was going fine for about 2 weeks and then WHAM! My Neck and Shoulders starting popping and getting stuck and in order to get them unstuck I had to suck it up and move and holy moly, there was some pain, but it was better then being stuck. So I tell the PT this and before I know it my Theraphy went from "lets Build Neck Muscle" to "We need to do stablized excersises" She states that my Ligaments are weak and that could be due to damage or something else. I see the DDS the following week, after he talked to my PT and I get pulled out of PT and I get DX'd with CRPS and they want to stick a needle in my head. So, here I am 2 weeks, later. When I think back to how I was treated, it was all so very odd. Even the PT called me at home to make sure I was ok! HUH? I never had anyone in the Medical Profession care about my little ole feelings. I was lucky to have a Doc make eye contact, but I think that Doc had a lazy eye. LOL

Dr. Craig Narin was on my Ins. list, so I made an Appt. with him for July 6. I feel like I am not going to make it. 3 days ago my teeth starting hurting and now I feel like razor blades are rubbing up against my skin. My Left leg and Arm are tingling bad, too the point it is painful. Left ear is on the fritz. I think I have asked "WHAT?" 482 times, so far. Then my kids respond like I am mentally challenged, It is not that I don't understand that someone needs their butt wiped, I just can't to hear. My daughter actually was talking to me in Sign Language. Ah! My kids are funny.

Cross your fingers that I don't spiral out of control. I feel it coming.

Have a great day,
Kim

RSD_Angel 06-02-2005 05:35 PM

Re: CRPS - Is Pain Doctor able to DX?
 
Yea it definetly sounds like your doc is trying to cover somthing up or that the PT made something really worse!!

Did the doc that you are seeing in july put you on a cancelation list? I would see if they have one and be put on it so you could get in sooner if someone cancels with the doc..

I have those days where i cant stand it and feel like i am gonna loose it and the pain is soo bad. Have you tried soaking in a warm bath with epson salt in it.? The salt calms the nerves adn sooths the muscles and helps the pain sooo much. i live on them every day or at least 4 times aweek i soak my foot and leg in it and it lessens the pain alot.

You also mentioned something about your hearing and that its all messed up. Is it ringing and buzzing or have you just lost the hearing? I only ask because last Sept i began having persistant and constant ringing, buzzing and hissing in my ear and i hve lost 70% of my hearing due to that and i have been seeing specialist for it and a couple weeks ago, i was diagnosed with Auto Immune Ear disease. It means that my immune system thinks my ear is a foreign object or an infection and is constantly attacking it and thats what is killin my hearing. The doc said that it is all due to the RSD and it flaring up my system and throughing it haywire. I would also ask about that!! ALot of RSD'ers have ringing and buzzing in there ears but really never linked it together and this is just comming to the docs that this is all conected and its not all in our heads. I also always say Huh to someone that is talking to me, and i read lips alot and alot of the times if the TV is on and someone try's talking to me , i honestly dont hear them and they yell at me to get my attention or they think i am mad at them and ignoring them but im not.. .just cant hear worth crap now..??? And with RSD being in your neck i would be suspisious of it being that also. Have you had bld work done??

Dont feel liek you are gonna loose it. I am here if you need to talk or anything!! thats why we are hear.. people on here have helped me through what you went through and i can talk about it now and now help you!!! there is better times in site.. just think.. a new doc and treatment that could help you and a doc that knows what he is doing too!!

Go and soak and I hope to talk to you soon!!

:angel:
Amber

Budko 06-03-2005 08:15 AM

Re: CRPS - Is Pain Doctor able to DX?
 
Good Morning Amber,

I have been having trouble with my hearing ever since I had hemiparesis (2003 left side paralysis) It will ring and buzz for days (sometimes so loud, I can't stand it) and then all of the sudden, all I can hear is mumbles, like I have a cotton ball in my ear. I had a test done on the Brain waves going to this ear, but it showed nothing. Then every once and a while the Volume will be turned up in that Ear and I have to tell everyone to shut up LOL. Kind of funny! Shut UP, no wait.......Speak Up

I can't read lips, yet, being as my sight is odd. It never works, either I have blind spots, double vision, blurry, or the Ptosis is so bad, I can't keep my lid up, so I am one eyed.

I was wondering to myself, If I am in denial or just hopeful. This appt with Dr. Nairn, I am hopeing he tells that this DDS is wrong and that I don't have CRPS. Does that sound like denial? But then I have to wonder about all those times I went to a Dr and they would tell me nothing is wrong. I even went to Denver and did'nt get any answer. I will never forget the time I saw a Shrink and I was sicker than a dog, I had ptosis and my left side was weak and I was in awful pain. So, this Doc tells me, Kim, i want you to take this pill, and you know when your sick you are out of it, so I take this pill and he stares at me forever and finally I ask him, what are looking at? and he says I am waiting for you to improve. Of course, I did'nt and I never found out what he gave me. But see how that really can break your faith in Docs? I had one Doctor tell me, referring to lump I have, "I am not a Bumpologist" What kind of response is that? So in order to get my anger out, I alway paid with a Credit Card and instead of signing my Name, I would write little messages like "Dr. Barrett has a little man complex" the other was "Dr. Carlow wished he had hair" I am horrible LOL. I wonder what my Credit Card Company thinks? LMAO Ok here is my Confession "I Kim...am a Doctor Hater" <sob> <sob> Here is my thing about it, They think they are above me and listen up hunny just cause you went to College for 8 years does not make you smarter or better. I would love to get these Doctors in the Field and lets do some Construction and lets see who is dumber. I am a Building Contractor, Oh! let me repharse that "I WAS a Building Contractor, until pain entered my World" UGH! I hate looking back!

Amber, I have been going on and on about me, me ,me. I feel selfish. How are you feeling these days? What are you faced with 3 years later?

Have a Great Weekend,
Kim

RSD_Angel 06-03-2005 01:35 PM

Re: CRPS - Is Pain Doctor able to DX?
 
I know what you mean about being in Denial.. I was in that too and often asked my doc if this is really what we need to do, but i trusted my doc so that helped alot!!!

Well you ask about me.. i am 27 and have had RSD now for 3 years. I was in the medical field, (we cant post what we do) i was in that job for 6 years before i had the surgery for my foot. I had that for a neuroma and the doc did the surg in 9 , yes 9 mins from the start of anesthisia to being wheeled into the recov room. and then delayed diagnosis for 3-4 mos saying it was a vaso spastic disorder.. yea right.. sooi got sick of the pain and found a doc about 2 hours away from me that is wonderfull.. wish you were in NY so i could send him to you!! I dont know where i would be if i didnt see him, or what i would be left with if i dint meet him.

I live with my parents , because i dont make enough money to pay rent along with the other bills, soooo...lol I also have 3 brotheres and one sister and they all still live at home also.. they are all over the age of 19 and i am the oldest.. my parents said they are the ones that are going to move out because we wont..lmao.

my ex left me while i was in the hosp for a week with the epidural, which i still have trouble with, but?? soo .. thats my life in a nuts shell..

Hope to hear form you soon!! and hope you are doing better

:angel:
Amber

Budko 06-03-2005 03:38 PM

Re: CRPS - Is Pain Doctor able to DX?
 
Amber,

I am so sorry for your loss of Companionship. I feel very lucky to have a Husband that is willing to stick by me, but he is only Human and one day he may not be able to cope. Over the past 3 years I have given him every way out of this Marriage and he has declined every time. I think about what my future holds for me as a functioning Human. Will there be a day I won't be able to hold my kids? or make love to my Husband? I can only imagine how you must feel.

I was a young Contractor in my Prime, willing to take on anything life had to give me. After I lost my job, I took on a New and Exciting job of Home Maker. I am home allllllll day with my kids. I have a Girl 9 and Boy 5. My baby will be starting school this year. I can't believe how fast he has grown. I have tried to get little jobs here and there, but I just can't do it Physically. I was doing a tile job about a Year ago and it sent me into bad pain and much to my surprise my whole left side would not work well. So, since then I have not done anything big.

I read a previous post you submitted about your hearing loss. You made a reference to Auto Immune Disease and I am curious about this......When I was 16 was DX's with Grave's Disease (Autoimmune of the Thyroid). They killed my Thyroid and now I am on Synthroid. Through this 3 years the only thing that showed up on my Lab work was High Colesteral and Slighty Positive ANA with Speckled Pattern. Is RSD Autoimmune in origin? I have been to a Rhuemetologist and She was perplexed by my case (they all say that), but She could be of no help and that the ANA maybe due to the history of Grave's Disease and that I could be carrying my Monther's ANA. That made no sense to me. Doctors will never give straight answers. I am telling you that New Mexico has issues. I love my State. The Perfect seasons, great things to do and great food, but we need good Doctors here. Maybe they know what to do when it comes to Positive Test Results, but if it is out of the norm, you are in big trouble in the Land Of Dr. Entrapment.

My Mother is a walking Medical Mystery. She has had everything from Cancer to Chron's Disease (autoimmune of her Large Colon). So, if RSD is Autoimmune, I am not surprised. Did they say your RSD is hereditary? and does your Mom have any aliments? How is your Mom handleing it? My Mom blames herself and she keeps making deals with the Devil LOL, so she says. We are a comical family! Is your family supportive?

My Sister in law is a Nurse and she found a Counselor that has RSD here. So I called him and he really discouraged the Blocks. He said that I am in the late stages and the Blocks will not help. Have you heard of this? And if the Blocks won't work then what is there? Holy Moly! What is happening?
I am getting so much different info (Julie warned me about this).

In the words of Joe Dirt "Keep on...Keepin On"

Amber, I am home all day, so I check the boards a lot and if I have time I will respond 200 times if I want to, so If I am buggin you, just let me know :O)

Thank you for being a part of my support and I hope I can do the same for you!

Kim

sharon1030 06-03-2005 04:38 PM

Re: CRPS - Is Pain Doctor able to DX?
 
[COLOR=RoyalBlue]Hi Kim,

I've been keeping up with all your trials and tribulations :). I'm glad you have an appointment with another doc. Hopefully, he'll be able to help you.

You asked Amber about auto-immune disease. I've been told that they think RSD might be one, but they're not positive. That was a few years ago, so maybe they know more by now. I also have two other auto-immune diseases (Type 1 Diabetes and hypothyroidism). I also have the ear ringing thing Amber has and hearing loss so reading what they're telling her, it makes me think. You're not alone in the fact that you feel if it's not cut and dry, the docs don't know what to do to help you. We have it here too. You just have to keep searching until you find the right doc for you. I also live in NY and I went to tons of docs before I finally got a diagnosis. I had to travel into Manhattan (two hours away) in order to get that. It was definitely worth it. I hope this is the doc that will help you. Good luck.

Sharon :)[/COLOR]


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