[IamJenn]

Okay so since being "diagnosed" most of us are being seen by a Pain Management Doc who is obviously seeing you to manage your pain. And some of us (not me) see a bunch of other docs on the regular to help us with this terrible disease. I do have a PCP but I haven't actually seen her yet, I went in to establish care under her but she was on maternity leave and the covering doc (a female) wasn't versed in CRPS and was pretty rude to me and all my issues so I didn't return for a follow up because I wanted to wait for my real PCP to come back from leave blah blah long story short I haven't gotten around to rescheduling another appointment because it's so tiring to have to explain once again what your medical history is to yet another person. I mean c'mon I've had to do that since 2006 and it's just the same thing over and over again. Anywhoot...I went in to see my PM Doc on Friday, a week earlier than my scheduled 28 day appointment (why? Because I have a major B for a boss & she said she wouldn't approve my MEDICAL appointment for three 14th because there was already 2 people out....yeah whatevs I'll save that whole deal for another thread) Anyway, I go in there and mind you he's been great to me since all this happened. I've pretty much seen him since being diagnosed, signed that contract and stuff done the Stellate Ganglion Blocks religiously in the beginning UNTIL it stopped working and I was becoming fearful of doing the damn thing. I have NEVER in my life been afraid of needles, I work in a dang lab for goodness sake but I seriously acquired a major fear of doing the blocks, not to mention I got pregnant with my daughter etc. So it's been almost 3 years since I've done one and I really don't want to anymore. But I go in and give him a rundown of all the things happening to me like how I can feel it spreading to my right foot, my vision problems, my teeth & gum issues, my cognitive issues and on and on. He basically looks at me and he has this student doctor with him and he's just looking at me like I'm just rambling and wasting his time. I asked him to explain if my issues had correlation to the CRPS and for the majority of the issues he says NO outright he tells me my stomach ( which is burning like the CRPS burning) is probably just an ulcer. Says my blurry vision in my left eye is not connected to CRPS and I probably just need a new prescription from my eye doc or my eye is tired and dry, then tells me my dental issues may or may not be related he doesn't know then the kicker is.... " Well Jenn I'm not sure if it's spreading to your right foot, I don't wanna sound like I told so, but if we did the blocks a year ago it probably wouldn't have spread" So my advice is to do another block and we'll see if that eliminates it". My response was okay wait, I WAS doing the blocks and it spread from my upper left extremities down to the lower left extremities, what are you trying to say? That doing the blocks will help it not spread? Uh yeah okay...I've already realized that the blocks don't help me. And it spread regardless of the blocks. The he says well next step is to implant that thingy I forgot what it's called into my spine. I was like ok I already have issues with just doing the blocks and now you want to cut open my spine and put something in there? I haven't done enough research to say yes or no yet. I ask him shouldn't I be also seeing a Neurologist and he says NO. I'm like why not? He says because all my treatment is coming directly from him. Just FYI, he filled out my FMLA Paperwork and said I have no restrictions in doing my work! I was like WHAT? Yeah I do! He won't even agree to say that I am somewhat disabled. I don't know anymore I feel like his only recourse to my treatments is doing the blocks or cutting my damn spine open to implant something. Here's where I'd like to know what y'all would do.....is it time for me to find another PM Doc? Should I see my PCP so I can get it documented in my medical file that I am disabled and have certain restrictions. I NEED HELP PLEASE!!!!! Tell me what y'all would do if you were me or if you went thru the same thing. TIA!

❤️,
Jenn

[CRPSsongbird]

Originally Posted by IamJenn

Okay so since being "diagnosed" most of us are being seen by a Pain Management Doc who is obviously seeing you to manage your pain. And some of us (not me) see a bunch of other docs on the regular to help us with this terrible disease. I do have a PCP but I haven't actually seen her yet, I went in to establish care under her but she was on maternity leave and the covering doc (a female) wasn't versed in CRPS and was pretty rude to me and all my issues so I didn't return for a follow up because I wanted to wait for my real PCP to come back from leave blah blah long story short I haven't gotten around to rescheduling another appointment because it's so tiring to have to explain once again what your medical history is to yet another person. I mean c'mon I've had to do that since 2006 and it's just the same thing over and over again. Anywhoot...I went in to see my PM Doc on Friday, a week earlier than my scheduled 28 day appointment (why? Because I have a major B for a boss & she said she wouldn't approve my MEDICAL appointment for three 14th because there was already 2 people out....yeah whatevs I'll save that whole deal for another thread) Anyway, I go in there and mind you he's been great to me since all this happened. I've pretty much seen him since being diagnosed, signed that contract and stuff done the Stellate Ganglion Blocks religiously in the beginning UNTIL it stopped working and I was becoming fearful of doing the damn thing. I have NEVER in my life been afraid of needles, I work in a dang lab for goodness sake but I seriously acquired a major fear of doing the blocks, not to mention I got pregnant with my daughter etc. So it's been almost 3 years since I've done one and I really don't want to anymore. But I go in and give him a rundown of all the things happening to me like how I can feel it spreading to my right foot, my vision problems, my teeth & gum issues, my cognitive issues and on and on. He basically looks at me and he has this student doctor with him and he's just looking at me like I'm just rambling and wasting his time. I asked him to explain if my issues had correlation to the CRPS and for the majority of the issues he says NO outright he tells me my stomach ( which is burning like the CRPS burning) is probably just an ulcer. Says my blurry vision in my left eye is not connected to CRPS and I probably just need a new prescription from my eye doc or my eye is tired and dry, then tells me my dental issues may or may not be related he doesn't know then the kicker is.... " Well Jenn I'm not sure if it's spreading to your right foot, I don't wanna sound like I told so, but if we did the blocks a year ago it probably wouldn't have spread" So my advice is to do another block and we'll see if that eliminates it". My response was okay wait, I WAS doing the blocks and it spread from my upper left extremities down to the lower left extremities, what are you trying to say? That doing the blocks will help it not spread? Uh yeah okay...I've already realized that the blocks don't help me. And it spread regardless of the blocks. The he says well next step is to implant that thingy I forgot what it's called into my spine. I was like ok I already have issues with just doing the blocks and now you want to cut open my spine and put something in there? I haven't done enough research to say yes or no yet. I ask him shouldn't I be also seeing a Neurologist and he says NO. I'm like why not? He says because all my treatment is coming directly from him. Just FYI, he filled out my FMLA Paperwork and said I have no restrictions in doing my work! I was like WHAT? Yeah I do! He won't even agree to say that I am somewhat disabled. I don't know anymore I feel like his only recourse to my treatments is doing the blocks or cutting my damn spine open to implant something. Here's where I'd like to know what y'all would do.....is it time for me to find another PM Doc? Should I see my PCP so I can get it documented in my medical file that I am disabled and have certain restrictions. I NEED HELP PLEASE!!!!! Tell me what y'all would do if you were me or if you went thru the same thing. TIA!

❤️,
Jenn

Personally.......you need a different doctor. No if ands or buts.... at the very least a second opinion would be the best route. I'm not a doctor so I can't say for sure especially since I don't know your full history, but ALL of your new symptom can be related to crps....
I would try and research the docs in or around your area and try to get some more educated help! When I was fairly newly diagnosed I also had a Stallite Ganglion Block down.....the worst procedure I have EVER experienced btw... and their "most knowledgeable" doctors in crps tried to tell me that my crps couldn't spread from my left arm to my left knee.......
Like my old, and best by far, PM doc told me...there are a lot of stupid people out there, including doctors!!
I hope you can find the care and help you need soon! But personally I would seek a second opinion!!

[Littlepaw]

Jenn,

I'm so sorry. It's really disheartening when the doctors we go to for care and compassion don't provide any. A little validation please...

I agree that you need a new PM. Saying that if you had blocks it wouldn't have spread is both callous and incorrect. Blocks have caused spread in some individuals and don't have the best evidenced based outcomes. At any rate, you didn't have them and there's no going back or reliably saying what they would or would not have done.

An SCS is a highly individualized decision and should be undertaken with the utmost research and caution. It IS a surgical procedure after all and has a fairly high complication rate.

Neurology may be an option. Some neurologists do treat CRPS if you are wanting to go that direction. For any specialty, I would call the office and speak with a nurse or medical assistant who can tell you if they treat much CRPS.

As for your foot...if you think you need to get it looked at then do. Do you need an x-ray or ortho consult to be sure there's nothing that needs to be addressed?

Let us know what happens. Sending hugs for the week,

[PurpleFoot721]

Jenn,

I agree with the others. Go find another PM or Neurologist to manage your CRPS.

I originally joined this forum to look for opinions on whether or not having a Sympathetic Block done was worth the risk. I personally decided that it was not so I can not say what they are like to go through. I kind of regret my decision because I think it might have helped manage the spread, but there is no telling if it would have. I based my decision on what others here have said. Most have told me that they either did not help, or they think that they caused more spread. Yes they can cause spread as can any trauma, surgery, needle prick, etc.

It sounds as if your doctor was recommending a Spinal Cord Stimulator, (SCS). That is something that a lot of doctors try to push on patients that are not responding to other treatments. Does it work for patients with CRPS? From what I have read, there are a very small few that it does for a short time, but for most of us, it doesn't seem to. That is a personal choice to decide to go through with the trial.

You don't sound like you agree or get along too much with your current doctor, so it may be a good idea to try to find someone else, someone you can trust and give you the compassion that a good doctor should give to their patients. We all seem to struggle so much with this damn syndrome that for many of us it takes away our ability to work, our hobbies, our relationships and families, and well, our whole life. A little compassion and understanding from our doctor shouldn't be too much to ask for.

[RSD ME]

i am not a dr but if i were you i would find another pm dr and get a second opinion from a neurologist. my pm dr is my main dr because he prescribes my pain meds to help manage my rsd pain. some drs don't know alot about rsd so they either tell you to see someone else or give you the wrong info about rsd like by saying rsd can't spread and that more nerve blocks would have helped and that getting a scs (spinal cord stimulator) is the next option for you. from my experience with rsd (going on five years this february and from what my pm dr has told me and from learning from others on this great forum, i do know that rsd can spread, that nerveblocks don't always help and that a spinal cord stimulator is not the only option left. there are pain medications and meds like gabapentin that can help manage rsd pain that a good pm dr can prescribe to you.

i was offered the scs but after researching it, talking to mulitiple drs and listening to peoples experiences on this forum, i decided not to get it (at least for now). i also have scoliosis so messing with my spine because of that scares me too. i prefer the meds instead. if there comes a time that the meds don't help anymore i may consider the scs in the future (at least the five day trial one). but the thought of having major surgery near my spine scares the heck out of me, plus the chance of infection scare me and the other risks involved like more rsd spread, batteries dying, twisted leads and the pain it causes to have this surgery. but it is a very personal decision. you have to decide on your own and make the best informed decision you can. also rsd is a recognized disability under SSDI and if i were you i would research that, print out info about it and also about rsd which you can find on this forum and online and give it to all of you drs, family and friends. then i would find a new pm dr and give them that info too and see if they can write you a letter (if you feel you can't work because of your constant rsd pain and spread and then maybe try applying for SSDI if you want to.

as for the eyes and blurry vision and dryness, rsd can be the reason for that as well as meds like gabapentin. rsd also affects the teeth by attacking the bones making them more brittle and causing frequent infections. rsd can spread to any part of the body externally and internally too (like the organs and heart). it can also go into remission sometimes when caught early on and with younger people. but everyone who has may have different symptoms and needs different ways to help manage the pain. there are many other treatments for rsd like ketamine, accupunture (thought that cause spread for me), hbot, calmare and there are also trail tests being done like for neridrondate (sp?). i know it's difficult to have to keep looking for new drs to help you. being in constant pain with rsd is hard enough to deal with, but unfortunately we have to be our own advocate and do our research and find the right drs. i have some drs who didn't understand rsd, but there are alot of good drs out there who do understand rsd and can help you. just keep trying and know that you are not alone. the people on this forum offer great support and kindness. sending comforting thoughts your way.

p.s. and don't ever let a dr tell you its all in your head because that isn't true either. rsd has external as well as internal symptoms i.e. shiny skin, sweating, excessive hair growth, muscle atrophy, bone thinning, swelling, burning pain, cold rsd, rapid heartbeat, and a weakened immune system which causes more infections and health problems because of rsd. also constant horrible pain that is listed on the mcgill pain index as one of the most painful chronic illnesses next to terminal cancer.

[RSD ME]

Originally Posted by PurpleFoot721

Jenn,

I agree with the others. Go find another PM or Neurologist to manage your CRPS.

I originally joined this forum to look for opinions on whether or not having a Sympathetic Block done was worth the risk. I personally decided that it was not so I can not say what they are like to go through. I kind of regret my decision because I think it might have helped manage the spread, but there is no telling if it would have. I based my decision on what others here have said. Most have told me that they either did not help, or they think that they caused more spread. Yes they can cause spread as can any trauma, surgery, needle prick, etc.

It sounds as if your doctor was recommending a Spinal Cord Stimulator, (SCS). That is something that a lot of doctors try to push on patients that are not responding to other treatments. Does it work for patients with CRPS? From what I have read, there are a very small few that it does for a short time, but for most of us, it doesn't seem to. That is a personal choice to decide to go through with the trial.

You don't sound like you agree or get along too much with your current doctor, so it may be a good idea to try to find someone else, someone you can trust and give you the compassion that a good doctor should give to their patients. We all seem to struggle so much with this damn syndrome that for many of us it takes away our ability to work, our hobbies, our relationships and families, and well, our whole life. A little compassion and understanding from our doctor shouldn't be too much to ask for.

hi purple. i just wanted to let you know that my pm dr said that though the scs might be most effective the first two years of being diagnosed with rsd, that it could still help after that. i am still not ready to consider it because it is major surgery but if you feel you might want to try it, there is a trial scs that is for five days. it's still pretty invasive surgery that i am not ready to consider but maybe you should talk to you dr about it if you feel regretful for not doing it sooner. its a very difficult and personal decision to make and only you and your dr can know for sure if it's the right choice for you. i hope whatever you decide, you feel some relief from the rsd pain soon. soft hugs coming your way.

[-Spike-]

Originally Posted by RSD ME

hi purple. i just wanted to let you know that my pm dr said that though the scs might be most effective the first two years of being diagnosed with rsd, that it could still help after that. i am still not ready to consider it because it is major surgery but if you feel you might want to try it, there is a trial scs that is for five days. it's still pretty invasive surgery that i am not ready to consider but maybe you should talk to you dr about it if you feel regretful for not doing it sooner. its a very difficult and personal decision to make and only you and your dr can know for sure if it's the right choice for you. i hope whatever you decide, you feel some relief from the rsd pain soon. soft hugs coming your way.

I think there is at least one person that posts here occasionally that just had her spinal cord stimulator surgery completed. Maybe that person can chime in, if they happen to read this thread.

[PurpleFoot721]

Originally Posted by RSD ME

hi purple. i just wanted to let you know that my pm dr said that though the scs might be most effective the first two years of being diagnosed with rsd, that it could still help after that. i am still not ready to consider it because it is major surgery but if you feel you might want to try it, there is a trial scs that is for five days. it's still pretty invasive surgery that i am not ready to consider but maybe you should talk to you dr about it if you feel regretful for not doing it sooner. its a very difficult and personal decision to make and only you and your dr can know for sure if it's the right choice for you. i hope whatever you decide, you feel some relief from the rsd pain soon. soft hugs coming your way.

Oh no!!! I only thought for a short moment about the idea of SCS. Not a chance. Too many issues, chance of even further spread, leads coming undone or twisted, infections... I was only regretting not taking the chance at trying blocks earlier on. I know blocks are still an option, but with the other issues I am having, I don't want to take that risk.

[RSD ME]

i had 8 nerveblocks early on with my rsd, but it only helped a little and then stopped. i really didn't like the way it made me feel either. but everyone is different and has different reactions and opinions to rsd procedures so its just my experience. i hope that we all can find a cure someday or at least go into remission. we deserve to be and feel normal again without constant burning and shooting pain (as well as so many other painful symptoms that we get from rsd) every day. i wish you all a peaceful and pain free as possible nights sleep tonight.

[IamJenn]

Thank you everyone for responding, I've taken everyone's response to search for another PM doc and I'm researching for a Neurologist as well. I really want someone who is compassionate to what I endure on a daily basis and actually look at me like I'm a fricken human instead of just another medical ID #. My current PM doc WAS good to me in the beginning but started to get distant as the years went on and I kept refusing to continue doing the blocks or the SCS thingy. And just to let everyone know I AM NO WAY GETTING THAT THING INPLANTED INTO MY BODY. It freaks me out and I've had some time to do some research here on the forum as well as other sites regarding it and I've come to the decision that I do not want to go down that route. I am also sticking to my guns and not gonna get any more blocks. It's my body, I haven't done one in 3 years and I'm not gonna get bullied into doing something just because a "Doctor" said I should get it, especially when that dr treated me with disrespect the other day. So I think I found another PM down a couple towns away from me and checked out her reviews and everyone had amazing things to say about her. I got her info from someone on FB who sees her and I called today to make an appointment but she's on vacation till the 19th! Arghhhh! Oh well, I guess I have to wait but I was really hoping she could have seen me while I'm in this crazy flare and see how weak I am. But I know everything happens for a reason so Imma just hold off until the 19th. I did find a neurologist but from what the receptionist said her specialty is with movement disorders so idk what that means but the gal took my info and is supposed to set up an appointment sometime in a couple of weeks or so. I called EVERY neurologist in Hawaii to question if they were knowledgeable in CRPS/RSD but haven't gotten any solid answers yet. All that calling around really made me tired but before I went down to take a nap I just wanted to thank each of you for your responses and encouraging words. Y'all really do not know how much I love y'all!!!! I know we haven't personally met, and y'all barely know me, but I've gotten so much support from y'all in the last few weeks than I've gotten in the 10+ years of dealing with this disease. SO THANK YOU ALL FOR WHAT YOUVE DONE FOR ME I AM DEEPLY TOUCHED AND BLESSED TO BE RUNNING (or hobbling or sometimes crawling lol) THRU LIFE WITH YOU ALL!!!!!!!!!!!

Oh before I nod off, I just wanted to ask a question and wanted some feedback....I posted a response in my other thread about knowing that the clock is ticking for me in regards to working a full time job and if I should really think about going down the SSDI road. I currently work for the gov't as a Medical Laboratory Technician so that means I do phlebotomy, processing and testing samples, shipping out samples, tons of paperwork etc. my job is quite demanding and I'm either constantly on my feet or sitting on my butt. It's hard for me to do my job because I have no feeling in my left hand then of course there's my walking/standing and not being able to fully put pressure on my left leg/foot and with it spreading to my other foot it's truly miserable. I also have bouts where I can't focus and my short term memory is fading quickly and there's much more but I'm really tired, so I'll end here but any advice y'all could give me regarding SSDI and if I should definitely look deeper into it would be appreciated!!!!!! Thank you all again!!!!!! ❤️❤️❤️❤️❤️❤️