Who to see and why?
 

Hi, everyone! Let me first apologize if I have asked a question similar to this before and possibly gotten an answer - I am having such insanly sever brain fog and memory issues that I'm often not sure what way is up now days.

My question is what type of doctors are you all seeing other than a PM Dr? I'm really thinking I need a bit of an overhaul in my doctors, as I'm not really feeling like I'm being listened to or cared about! I would really like to build a team of Drs, but other than a new PCP and PMD, I'm unsure if I should being seeing anyone else.

My PMD is a wonderful man, and the SNB he is doing are helping some - but he NEVER listens to me! My first block stopped working after 3 days and gave me about 70% relief - I told him this and he somehow hears that as it lasted a week and gave me 75-80% relief. I didnt really see this as a huge deal at the time, but I think it may have sent up a bit of a warning. My second block worked at the same amount of relief 70%, and it lasted 9 days. My pain Dr heard this as it gave me more relief than the first one (85% per him) and it lasted 14 days. (I should note that at the time he noted that it lasted 14 days, it hadnt even been 14 days since he did the block!!!) I can honestly sit in his office and say "No, it only worked the same amount, not more and it only lasted this long - but he just kinda ignores me?! And I dont really know if this is such a big deal, but it is really bothering me! He has also told me that since each one has worked better (NOT!) that he thinks he'll just have to do one more and I'll be all better!??! IDK... kinda strange!

I also wanted to bring my PCP in on my treatment and to also talk to him about some odd issues Im having since being diagnosed with RSD (anyone else have a huge increase of asthma symptoms?) Anyway, I go in for my appointment, he gives me new meds for the asthma, tells me I cant take my zoloft anymore because Im on the amitriptylin, and tells me "Sorry to hear about your foot, good luck with that" WHAT!?!? I left crying and so so confused! This man has been my Dr for 15 years and thats all he has to say! No advice, no opinion, nothing but wishing me luck!

My podiatrist has been very nice, and open, and willing to listen - but he doesnt bring a lot to the table. He just seems to want to bring me in every other week to ask me how I'm doing and no matter what I say he pretty much says "I'll see you in two weeks" I can also admit to having a bit of anger toward him, so that might now help his case! I know that RSD can happen from even a minor injury - or nothing at all, but my RSD started after having a foot surgery that I later found out was unnecessary. Had I been diagnosed correctly, I would have never needed surgery and I would not be dealing with this unimaginable pain now - so yeah, just a little anger towards him!

Anyway, I know I now need to deal with the stress of finding a new PMD, PCP, and podiatrist - but are there any other doctors any of you would recommend I bring into the fold?

I think Im also going to start seeing a therapist too. I have been all over the chart with my emotions. When Im up, Im up - but when Im down Im down loooow and sometimes I'm just weepy for now reason at all! And I have irrational anger toward everyone, for no logical reason! Even total strangers that have done nothing wrong really, I get mad at! I feel like I've lost my ability to laugh. And most scary of all is this gripping panic that seems to own me! My mind is so scared of RSD now that if I so much as bump a finger I'm gripped by overwhelming panic thinking the RSD will now spread there! And this applies to my loved ones as well now - my daughter trips and hits her knee.. I hyperventilate Im so scared! Its insane! Does anyone else experience this? Is it even a tiny bit normal?

Okay - I should atleast go lay in my bed now seeing as its almost midnight, although I wont sleep until total exhaustion takes me around 3ish. (Which is something that no Dr seems to want to help me with! I was told that the Amitrip should help me sleep and that I dont need anything else!) ugh!

Thanks for listening, and thanks in advance for any advice!

<3 Trisha

Trisha - sorry you are going through this difficult time. To answer your first question, my PM dr is a spinal surgeon (I love him :D he is the one who implanted my two SCS) and now I have a new neurologist. I see my PCP regularly because of my vitamin deficiencies, so she keeps tabs on everything the others are doing (I have them send her notes too).

I have not developed asthma, but it seems like I have developed a lot of allergies since getting RSD.

I hit my foot before Christmas and it still hasn't healed. We really don't think it's RSD, but just an inflamed tendon. I was terrified that I would get RSD in my foot, but I tried to let that thought go. I can't worry about something I can't control.

I think it would be a good idea for you to see a therapist/counselor. I go talk to one every once in a while - like when I get overwhelmed with this RSD monster. My husband is great and very supportive, but sometimes I need to talk to someone else who can offer something else.

It sounds to me like you need to re-evaluate your dr selection. You need them to help you, not fabricate your chart for them to look better. You also need drs who will listen to you...after all, you are paying them!! They are hard to find, but they are out there.

Wishing you the best of luck with this.
Nanc
:hug:

I am very sorry to hear all that you are going through. So many of us have been there, done that, when it comes to the doctors. It appears as though the group you have now may not be the right fit for what you need in your situation. I am say this because you don't really seem to be getting the feeling of support and compassion that you obviously need to see from them.

I am very happy to hear that you are getting relief from the blocks...not everyone does so that is at least good news. But I too would be worried about the doctor recording inaccurate information in your medical records. Because it seems like he is setting you up to (at least according to HIS records) be a successful case that he can claim he "cured" your RSD or whatever. THAT would make me very nervous. I don't know if you have any legal stuff going on with your case where his notes may need to be looked at by lawyers or submitted as any sort of evidence...but the inaccuracies could make it look in court like you are exaggerating your pain (that you got better but still say its awful) or that you are being dishonest in some way. Your doctor may think that he is "protecting" the other doctor by recording that your pain is less or that the blocks are working more/longer. I have to say...this would all make ME incredibly nervous. Don't know what his real motives are...but any way you slice it this is not right and it looks/feels shady.

Your PCP...well...it may just be that he does not feel qualified to handle treatment of your RSD or that he doesn't know much about it. Don't get me wrong...I would still want compassionate care from a doc that didn't know much about it (especially if I had been seeing him that long). However...it just may be a case of him not wanting to complicate things by getting involved or giving advice on something he is not qualified to treat. On the other hand...what I personally expect my PCP doc to do is to coordinate things if I am seeing multiple specialists and keep up to date on my care. I left my PCP of 27 years (he literally DELIVERED me and was my PCP my entire life) because he was so incompetent, uncompassionate, and tried to pawn off the coordination duties on specialists who certainly felt it was not THEIR job to serve that function. Hard decision for me and led to some family arguments...but I am with a wonderful PCP now who is actually handling all my RSD care at this point. I always FEEL better when I leave her office and that is such a relief after I spent so many months getting bounced around from one doc to the next with no answers and no hope at the end of it. She has literally saved my life so one should not underestimate how important it is to find the "right" doctor for you as an individual.

Now...as to your question...I think adding in a neurologist is fairly common to have in the mix when treating RSD. I had bad experiences with the ones I met but many people find them incredibly helpful. There are more components to RSD than just the pain and from what I have seen...many PM docs either don't know or don't care about these other things. And they can have some major effects on our lives.

And I think adding a therapist would be a wonderful idea. It sounds like with everything that you are going through (all the stress and worries) that a therapist might be able to help you cope with things better and give you the peace of mind that you need. Remember that stress can flare RSD so if you have a lot of it right now it could be making your pain worse. Some people are able to do these things on their own but many many people need the help of a therapist.

Take care of yourself and good luck in the search for a new team of doctors that can give you the help you need. I wouldn't stop seeing any of yours (except maybe the podiatrist since it seems like he is not offering you anything at the moment) until you find new ones because if the blocks are helping then for your own health you should continue them. But maybe bring a witness with you who can verify when you tell him how much relief you got from the blocks and for how long. If they could take notes at your appointment that would be great. I had family and friends do this for me for a while. And take notes yourself at the very least...especially if you are having issues with your memory and all that.

Good luck.

I agree , I would definitely stop seeing the podiatrist, seems he is just racking up visits and $$.

Look around for some RSD specialists or at least drs that will learn about it.
Many drs tend to not keep updated and coast by on old knowledge.:(

Hi Neko
 

Good luck is not a thing you want to hear, when you have a major problem. Also to have your doctor not listen and put into your records better results than you actually had, is not appropriate. If your records would be passed on to some other psysician, he would get that same opinion. You are not being listened to, and it would be good to move on to someone who will "hear" what you are saying. We take the time and energy to go to the doctors, he should treat you better. Your anger and worry over RSD is valid. Until you find the proper treatment with an specialist;I would feel the same way. Depression does happen when you are not validated in what you are experiencing. Council is a good idea too. I have a councelor to help me cope with the pain of my conditions, and I am very glad I do. Also coming back to NT helps alot:. I don't have RSD, but I am a pain patient and I have empathy for you. I hope that you can get the help you need. I really do wish you all the best. ginnie:hug:

Trisha,

Some of what you say is true; doctors (on average) only hear about 25% of what their patients tell them, and patients (again, on average) only hear about 50% of what their doctors say. With as much as they have on their minds, and how those minds work as they're trying to help us, this is understandable and forgivable. But for a doctor to write something in his notes that is blatantly false (such as a treatment lasting 14 days when it hasn't been 14 days) is not IMO, acceptable. The best way I know of to improve this situation is to bring someone (advocate/caregiver/witness) with you to all appointments to take notes, reinforce your questions/positions, and in general, witness what's said & done. If that's impossible, be sure to take your own notes, and get copies of all of your records (the latter should be done anyway). When you see something in those records that is not correct, you do have a right and obligation to send a letter correcting any errors.

I agree with Jo*mar about the podiatrist.

Your PCP's behavior may be explained by this doctor's blog post:
http://distractible.org/?p=3912

FWIW, I've had 2 neurologists and 1 gastroenterologist "wash their hands" of me because they did their tests, felt there was nothing else/more they could do for me (except tell me I could come back in a year to tell them "how I was getting along") and send me on my way. It was after the first one (the gastroenterologist) that I became my own advocate and took responsibility for my own care & treatment. As Dr. Rob says in his post above, it's not unusual for patients to learn/know more about their conditions than their doctors do, and that's exactly what I did, and got better on my own than they were getting me. That (IMO) is what we patients with difficult chronic intractable conditions must all do. This is one of the best things about support groups. We can share experience & knowledge, do our own research and become our own experts, and use all that to help our team of professionals help us. I've gotten better on my own in both cases (IBS & PN), but I keep the doctors who care in the loop, both for my own safety and to help them become better doctors. The good ones appreciate that; the bad ones shrug it off and make excuses.

Seeing a therapist may help. Just be aware that they can vary as much as other doctors, so if the fit is not exactly right for you, keep looking and find another. Also, see them for as long as you feel you need to; most good ones should be willing to reduce scheduling to an "as-needed" basis once you feel you've got a better handle on things. You don't want one like the podiatrist that will keep you coming just to collect fees.

Here's a post in which I attached one schematic of what a support network might look like (click on the thumbnail to see it better).
http://neurotalk.psychcentral.com/post839895-51.html
It can take some time to build an effective team, but you're on the right track.

Here are some other techniques I've found helpful in coping with the vicious cycle of pain/depression/insomnia:
http://tinyurl.com/2c642oa
(written/posted before developing peripheral neuropathy)

Best wishes,

Doc

Thank you all so much for the information/support. Its been a very hard few days - I had an extreme emotional reaction Sunday (due to my daughter choking and me having to give her the hymlich manuver) and also had a dog step on my RSD foot shortly after that. My foot swelled badly and the red/purple color spread further up my leg than it ever has before. The color has slowly returned to a somewhat more normal shade, but there pain in my foot is back up near a 10 and now I have burning in my ankle which I didnt have before. I've called my doctor but still havent heard back from him - if I dont hear from him soon Im most likely going to have to go to the ER. I just cant take this.

So anyway, I've read all of your posts and I really do appreciate all of your input. I will be sticking with the SNB for now (with the Dr that gets all of my info wrong), but I have also made an appointment with a new pain Dr. I agree that I shouldnt drop one without having another! ekk! The new Dr I made an appointment with is both a pain dr and a neurologist - so that covers two Dr's in one and he also does outpatient Ketamine (not sure if I want that, but it is an option)! Im still searching for a new PCP, and I will be dropping my foot dr for a new one as soon as my '90 post-op' period is up.

The Musing of a Distractable Mind was fantastic to read! Thank you for that, Dr!

{{gentle hugs}} and if I missed any ?'s I promise to read through again later an answer (when my brain is a bit more able to focus)

Again, Thank you!!!

Most of us will eventually need psychiatric help.

There are meds that help smoothe out the ups and downs and make things easier to deal with. Some are even analgesics as well.