Update/Vent (very long)
 

So...the bad news keeps on rolling in. I feel like I am going through the same struggle I went through getting the CRPS diagnosis...except this time it is my whole body that is shutting down on me. And believe me...if I didn't fully recognize how lucky I was to get that diagnosis for CRPS within 6 months of the injury...I do now. Not that it has been 6 months with this new stuff...only 2...but when EVERYTHING starts to go so bad with NO explanations offered you start to go completely nuts.

As you have probably assumed by my posting...I did not get admitted to the hospital. The doctor said that he does not think there is any possibility that my problems are neurological. His brilliant explanation for everything: stress. Now...I have no doubts that this is a very brilliant doctor who has done great work in the field of Parkinsons (which he said is his specialty after I started talking about the pain and he asked why I was there to see HIM)...but I have to be skeptical when someone tells me that my pain, these physical manifestations of my condition on my body (redness, puffyness, etc), the hallucinations, vision problems, etc are all just stress. Some of the later ones...maybe. I mean...over a month into this and my hair starts falling out...that could very well be stress related. But at the time this all started I don't remember BEING in any real stress. Any stress I have had seems to come from the fact that we're going on months with me being in this condition without anything improving or getting any closer to a diagnosis. Going months with zero relief of treatment for my PAIN. Yes...those things are incredibly frustrating and stressful.

The good news is (and it took me a long time to really find any) that the doctor didn't say that my pain wasn't real, that these things weren't happening, he just said that they were caused by stress. I don't buy it...but am willing to check it out on the off chance he is correct. But it seems like a total cop out to me. Anyway...also good news is that IF it is not neurological then that means that my brain is okay and that my nervous system is okay, and the chances are very good that I WILL get better. Of course...I don't know how I am supposed to GET better without any diagnosis...

And...when the doctor told me what he thought at the end of the appointment...I totally broke down into tears. I hate crying in front of people...I'm not that sort of person. But I just couldn't hold it back. I mean, if the doc can't admit me because he doesn't think it's neurological then that's that (and I would never want a doctor to do anything they weren't comfortable with)...my frustration just comes from the complete lack of movement towards getting any sort of answer. And in the back of my head now is that stupid article about how it took this woman 10 years to get a diagnosis. When you're only 27...10 years is just an amount of time you cannot really grasp...though I guess it's a long time no matter who you are and what age you are. I know I can't dwell on that possibility...but before I read the stupid thing my 'worst case scenario' in my head was maybe 6 months. I don't know how all of you did it who had to wait years for the CRPS diagnosis...though I guess I am beginning to understand why you had to wait.

The doc did make a comment about the CRPS diagnosis in my left ankle. He said that he thought it was incorrect because there wasn't massive swelling and it wasn't grossly discolored. I hate to say it...but that has to be the one thing that makes me doubt this doctor's assessment about my other pain being stress related. I know stress can make my ankle flare up worse (which may explain why my ankle is almost constantly at a level 9/10 these days even with the limited walking). But I also know that not every possible symptom of CRPS has to be present for that to be what it is. And since it wasn't the reason for my visit to this neurologist I didn't feel the need to argue with him (really wasn't emotionally equipt for it anyway) but I wanted to sort of yell at him and ask what he thought it WAS if it wasn't CRPS. I'm all for there being differing opinions...but before you start spouting off to me about what you think it isn't when it's not something you deal with...maybe you should have some idea of what it IS if it's not that.

But stress...stress...really? I find myself on the one hand not wanting to dismiss something if it really could be the reason for my pain...but on the other hand I want to run away screaming. I guess he couldn't just say that everything was in my head because the physical manifestations of whatever this is are real and can be observed...but saying that it's stress seems barely one step better than that. And his only reason for saying it is because so far no one has figured out what it is. And while I understand that on the one hand...I feel like there have been so few test done, absolutely no effort by anyone to actually address the pain, and it's just too early to give up on getting a real diagnosis for what's wrong. There is simply just no way that they have ruled out every other possibility. But then...maybe this is a possibility that needs to get ruled out just like all the others...but how do you rule it out if they believe stress CAN cause all this stuff. There's no test they can run to just tell you how much stress you have and prove that it is causing you to have physical manifestations of that stress, is there? So, if that's the case, then are we just giving up on looking for the 'real' cause of these problems if we pursue the 'stress' theory?

I know that I had a lot of people who could not explain my pain when I hurt my ankle. It could not be explained by xrays or MRIs. It could not be fixed with cortisone shots or immobilization. Everyone just dismissed me telling them about the 'coldness' that I was getting as just some circulation problem probably due to me not using the leg as much. Narcotic pain meds didn't help the pain. I'm sure at that point a lot of people thought that the pain was just 'in my head'...until I got to a doctor who said no, it's not...and he diagnosed the CRPS. I had never head of CRPS before...but when I went online to check it out it was like the A Ha moment. Suddenly all these things that made no sense to me actually made sense. It's not like it is something I was happy to have...but once I knew what it was I was able to move forward with treatment and deal with it emotionally. I knew what I needed to do to get my life back, I finally had medications that helped the pain, and while it wasn't ideal or perfect...it was SOMETHING.

So now flash forward to today, dealing with this new stuff. I can't help but feel like I just haven't gotten to the right doctor yet. I'm not ready to throw in the towel yet and give up on a medical reason for these things that are happening to me (other than 'stress')...it's too early for that. My boyfriend, why has been absolutely wonderful in everything, thinks the doctor may be on to something and that maybe stress IS what is causing all this because the brain's a powerful thing blah, blah, blah. And here I am in the middle feeling torn between what I feel (which is that I don't buy it) and what others have to say...which at this point is the only thing we have to go on. If my hair weren't falling out I would probably be pulling it out by now.

So after all this, we ask the neurologist what the next step is...and he say that we should follow up with my local neurologist once he gets his report...in about 2 weeks. 2 weeks...meanwhile I just sit here in pain, suffering, and try to relax. I had to wait 3 weeks for this appointment and have to wait 2 weeks after the appointment before I can do anything...this may be the process that one has to go through but I'm here to say that it SUCKS! I mean...the whole point of all of this going to a university center was to get admitted to the hospital because they don't know what's wrong with me...only to come to find that they can't admit me unless they know what's wrong with me. WTF is that? Does that make any sense to anyone? Can anyone explain it to me in any way better than they just dont want the hospitals filled up with fakers? I mean...every doctor SEES that there is something seriously wrong with me...all three of the specialists that I have seen have said that I need to be admitted to the hospital to have a team of specialists try to figure out what is wrong with me...so why isn't that happening?

So where do I go from here? Well...I am going to be making a lot of phone calls next week to see my primary care doctor, my PM doctor, and my neurologist. I'm not sure if it's worth seeing the neurologist until he gets the report from the other doctor or not...but the simple fact that I have not been admitted should serve as sufficient proof that I am not getting the treatment that he himself said I needed. So, do I need to go to Mayo, or is that going to be the same story there? Are they not going to be able to admit me until there is a diagnosis either? Do I need to be admitted to a local hospital first so they can run some more tests to try to diagnose the problem? If that's the way things work, then why did they waste my time with sending me to this guy if he wasn't going to be able to do anything for me? On the off chance that he say something that you guys didn't...with nothing but the most basic tests run? My frustrations with the entire process keep building and building and if this is all 'stess' related then I guess I'm lucky I'm not in a coma or dead. At what point is my elevated HR going to actually end up being a stroke or a heart attack? Will it concern someone then? Will someone finally CARE about that symptom when that happens? How about my low grade fevers even with massive amount of Tylenol being taken every day? At what point is someone going to get concerned enough about that to do anything? And speaking of Tylenol...how long are these so called specialist going to let me take 3000mg of Tylenol a day? Until my liver shuts down? I could go on forever with this list of questions...

I'm a fighter...a stubborn, determined fighter...but I feel the fight slipping away from me. My emotional breakdown today...it scares me. I know we're all entitled to lose it from time to time...but as clear headed and logical as I try to stay...I feel it slipping away. I just don't know what to do from here. I have a plan and everything...but I'm starting to feel the fight go out of me and that scares me as much as anything because I know I need the fight if I'm going to get through this. Everything that I went through before with my ankle...I never lost the fight...and that was a very stressful situation dealing with just some awful people at work after the work injury and work comp along with unexplained excruciating pain. But this...the only stress comes from the pain/symptoms and the process. The pain/symptoms are worse because they are everywhere and affect every thing and they are a lot more scary (though last time I would not have thought that possible). But they didn't start out that way...they have gotten much worse over time. The onset of the symptoms was during a much less stressful time (which is one of the reasons I don't buy the stress theory). So...while everything has gotten worse...I would say that my stress has increased as things have gotten worse...not that things have gotten worse as I have gotten more stressed. Does that make sense?

Anyway...I could probably beat this to death and write a fricking book about it all...but I will try to spare you at least that much. I mostly just needed to vent out all of these thoughts that are bouncing in my head. Talk it out, so to speak. Thanks for listening...this is the one place where I really feel like people can understand what I am going through (even if this new stuff isn't CRPS). The process seems to be very similar...and while I keep hoping for another quick diagnosis...well...not gonna get into that again. Just know that I am truly grateful for a place filled with people who are understanding and who get it. Can't tell you how much that is worth (though...you probably already know). Thank you.

I'm so sorry to hear that the appointment at the university did not give you the answers that you have been looking for. It took 2 years before I was diagnosed with CRPS and the waiting period was absolutely one of the hardest times of my life. It took the CRPS spreading throughout the whole lower body and but what finally made Dr's pay attention was at the 2 year mark my legs changed colors and became ice cold...absolutely boggles my mind as to how easy it was for alot of the Dr's to just blow me off in which in their minds I know they thought everything was in my head even though they left it unspoken, just the fact they blew me of was enough said...
Our intuition is usually spot on, and I too am having a hard time believing the cause of your new symptoms are stress related..
What tests have been run in the last 2 months? Is it possible that the CRPS is flared or has spread from the nerve blocks entering the spine? Has that been ruled out?
I would recommend trying to follow up with the pm dr that said you should be admitted ASAP. Sounded like that dr was on your side and was able to see that you are in need of medical care. I would definitly put that appointment ahead of your neurologist since he is at the end of his rope with answers. Is it possible that the nerve block has caused a small leak of spinal fluid? I have had a spinal tap procedure done and that caused a leak in spinal fluids which gave me the worse headache that I have ever had. Have the Dr's ruled that out?
Dont stop taking charge of your medical needs as now is the time that you have to fight your hardest. Please let me know if there is anything I can do to help.
Sarah

Dear Catra

this was certainly not the post i had hoped to read from you. it took me 5 years and 25 doctors before i got diagnosed...and i diagnosed myself by watching a tv show and then went to my doctor and said i think i have this...and he said yes you do! my rsd has had bad flare ups every month and my internist has given up on me and wont even return my calls. i was hospitalized 2 weeks ago after i was in the ER shaking in pain and having internal problems ( i have internal rsd) and my doctor came to see me in the hospital twice and now he wont even call me back and i have no idea what his problem is. but i think i have too many problems for him to deal with and he doesnt want me as a patient any more. so i am saying to heck with him and i will find a new doctor. as you will do as well. by many posts that i ahve read here...many people are jerked around by their doctors and i think the reason is that our illness doesnt fit neatly in their little boxes. it is an ever changing disease with more twists and turns around the corner.

so just know you are not alone, we are all fighting a daily battle of our disease and our doctors. some here are forunate to have the best doctor on the planet, but we all live far away from himi think dr Schwartzman is his name in pennsylvania and i hear there is a two year 2wait list to get in to see him! so we have to keep searching in our own area for more help.
peace and blessings
Lori

So sorry
 

Jim Broatch of the RSDSA has a list of ketamine docs. An older version of the list is also available on FB at "ketamine klub." It may be a good idea to find the one that is in your area and make an appt. I think that anyone who has advanced to providing ketamine for RSDers has treated a lot of us and is likely a good bet...

as far as being hospitalized goes, those places are full of germs. and some of those germs are lethal. yuk. and things move at a snail's pace. You may think it's a better place for yourself, but ultimately, maybe it isn't. Testing can probably be far more effectively done on an outpatient basis with YOU in charge. You just need to find the right doc to help you.

wishing you the best...hang in there....

I am sorry for your struggles and pain. A few thoughts and I tried to go through some of your past posts but am still confused so I am sorry if I am off a little in my response. I have a dx of RSD and PN but a lot of symptoms I have like my severe eye pain etc are still questionable dx. I am basically all dx tested out and have had so many opinions. For you though have you seen another neurologist for an opinion? Have you had dx tests repeated? For ex my first set of emg/nc did not dx me but my 2nd dx PN. I know you had a block but was that by a pain doc/anestesologist? If so is he/she knowledgable of rsd?
I am sorry about the doctor and stress. I think many of us of heard similar comments. I know I have often come home crying from an apt because of a comment by a doc. If I were you I would try to get another opinion. Also it is ok to cry and in front of people. Sometimes to heal you have to let the emotions out. There are so many times that I feel the fight is out of me. Like how can I face this but that is when I try to use the support I have and take 1 day at a time. The more I worry about the future the more stressed and anxious I become. I try to focus on today and do the best I can. This is my best statement which I have said many times on here from my pain doc. On the bad days do the best you can and on the good days do the most you can. Also that being in chronic pain for so long has to impact one mentally and why he encouraged me to see someone for that side of things. I think so much is how a doc states something. Sending warm thoughts

I had a doctor tell me if I was hungry enough I could work! Then he put me on complete rest for four weeks an massage therapy. I don,'t know maybe he was just testing me.

Stress is a lot. Do you just have time when you and all around you are quiet? I don't know if you are still working, but just going to work is too much stress sometimes. It is amazing how much we don't think is stress but it is. Pain is one thing, but expecting unreasonable things
from your body and mind complicates everything. Cut everything out of you life, ok except breathing, and then list the priority with which you
would add them back. Try only adding relationships, no activities. So
much we accept as necessary when you are struggling like you are now
need to be put on the 'not necessary' list, even if temporarily. My Doc
says if it causes pain, don't do it. Now that is a hard statement. It has taken me 6 Months almost to get what he is saying. I'm not sleeping in bed, I'm not wearing socks, I'm limiting the number of steps I take in a day. If I go over the limit I am willing to pay the price.

Plus remember one of the most wonderful pain killer's in our tool box is distraction. A long conversation with a friend, a great movie, a game of scrabble, fighting with some 'angry birds', showing my granddaughters how to make jewelry or greeting cards, sending a note and a card to someone who has lost a close friend or family member.

Keep up your search, but take some time to quiet yourself, those neurons want to keep you going.

And don't be too stubborn to at least consider what they say, but wait until you are home and can think clearly. I try to not agree to anything in the office.

To a quiet day od mercy and grace,
GramE

Yesterday I had my boyfriend help me upstairs to the bedroom and I just spent the day in the bedroom by myself, lights off, watched some tv, was able to take my shirt off with no one there and that felt wonderful to not have anything on my back/neck/arms. I really needed that...just some time to really decompress and let everything go. I feel a lot better today and feel committed to moving forward again now. My plan is more solid and I have been running lots of internet searches to see what things might be causing my symptoms. So now I have a list of things that I can bring to my primary care doctor that I can ask to be tested for (even if it just ends up being ruling those things out). I know that I just need to get to the right doctor. I get to the right doctor and I WILL get better.

I am off work now. I can't drive with the vision problems, hallucinations, and pain...and I can't hardly walk at all these days. I wish I had the distraction of work...but I can't even handle doing my cross stitch these days so working is out of the question. I wish I could stitch...that has always been a great stress reliever for me and a godsend when dealing with the CRPS pain in my left ankle. But this all over pain has robbed me of the stitching. I run an online cross stitch board though and I try to live vicariously through those girls. I also spend a lot of time planning a Disney vacation that I am going to take when I get better...it gives me a goal to shoot for and something to look forward to. I do try to call friends...that helps a lot.

Thanks everyone for your suggestions and support. It helps a lot to be able to just let it all out. Between that and my day alone...I feel a lot better. Also helped to have some long talks with my boyfriend about it. We don't talk about my health issues a lot, but he is being really supportive (as is his family) and people keep giving me suggestions about 'similar symptoms that a friend had that ended up being...' It's such a good feeling to know that people care and want to help.

Boyfriend also brought up a good point about the stress thing. I, of course, jumped immediately to the idea of mental stress...but he was saying that maybe it's the physical stress on my body that is more the problem. I never really thought about it like that, so that just gives me something else to work from. I feel like since the doctors don't seem to be offering up suggestions on what might be wrong with me...I might as well start getting those suggestions myself. But...I have to say...if it ends up being one of the things I mentioned at the beginning that was just shrugged off and never tested for...I'm gonna be REALLY annoyed...

Thanks again everyone!

It's crazy...but I don't feel like the doctors have ruled hardly anything out. So far the only things that have been ruled out by anything other than an "I don't think so" statement are MS, brain tumor, lupus, and rheumatoid arthritis. After 2 months...that ALL they have ruled out. I have asked about all those other things like infection, CRPS spread, spinal fluid leak, menengitis, bone infection, any other sort of infection...and all I get are shugs or shakes of the heads saying "I don't think so." Sometimes they explain why they don't think so...but they have not run any tests and it is frustrating because a lot of those things could be causing some, if not all, of my symptoms.

But I am going back to my primary care this week to go over all these things again and to tell him that I NEED them to run these tests just to make sure. I have also added mild sepsis to the list because I have the symptoms for that (including confirmed MRSA and urinary tract infections) and it can cause hypoglycemia which would explain the rest of the symptoms including why my glucose level was so low when they ran the boodwork.

It is so frustrating. I appreciate all your suggestions and I am definitely going to be strong and pushy if that's what I need to be to make things happen. It helps that I am royaly POed at my primary care doctor right now. Don't think I will have the least bit of trouble standing up to him when at the moment what I really want to do is punch the man in the face for what he has done...holding his medical care hostage unless I go to the NUCCA chiropractor next door (who...btw...works for my doctor even though they have seperate offices). That's just extortion...ridiculous. So it's gonna cost me $460 to do something I think is a waste of time and money just so my doctor will see me again and actually treat me. But that's a seperate issue and once I am physically well enough I will defintely enjoy getting my medical records and walking out that door for the last time. The frigging doctor delivered me for crying out loud...I cannot believe that he would treat a patient like he has treated me during this situation...taking the opportunity to force me into a treatment that I do not want to do that he has wanted me to do since I was a child. Yeah...not going to have a problem speaking my mind to this man anymore.

Will keep you all posted on what happens next. Who knows...maybe this crazy NUCCA thing will be a miracle treatment. Not holding my breath on that...but anything is possible. I mean...if you believe everything they claim on the internet...this treatment can cure everything from MS to bed wetting to infertility...CRPS should fall in there somewhere, right? :p

I didn't have a lot of time to read all the responses, but can I ask why you have not gone to a Pain Mgmt Doctor? Especiallly when recommended by RSDSA.org? You can be wasting your time and money on neurologists whose subspecialty might have nothing to do with pain. I have found that the best PM doctors are board certificed in Anesthesiology.

My daughter has had RSD for over 2 years. We have tried pretty much everything including Dr Rhodes and Calmare. What has worked for her so far is ketamine. She has had both inpatient and out. The inpatient has left her pain free for now. RSDSA has a list of doctors although it is getting hard to update as more and more doctors are using it. FDA has approved it for breakthrough pain so insurance should cover it; even if you have to appeal. Mine paid for all of it.

Good luck to you.
liz

It is both. The physical and the mental together. Stop doing, and stop wanting to do more than you can right now. A hard thing, I myself had to do it. But in 6 months I'm pretty much able to take care of myself, which I wasn't in Oct. Brushing my teeth, making a pot of tea and fixing my breakfast, getting dressed, reading the paper, maybe fixing supper and putting the dishes in the dish washer, reading or surfing for answers, praying and reading my Bible. That is a great day. Wouldn't have said that 8 months ago, now I do.

the best to you Catra
grame