Had visit with 2 new doctors neuro/pain
 

Neurologist said to bring him a list of any meds that others have had success with. He said that some times we have to go through several different ones to find one that works for us. Was impressed by that. The recent increase of Neurontin is helping for now but has been increased to 1800mg a day. I have increased it 3 times in 3 months. He also made copies of both articles I have found recently. Gave me his cell number and said if I needed him to call him. Wow supper guy. The pain management doctor also very nice said that it will eventually burn itself out. I have read otherwise somewhere, maybe by one of y'all. He said since I am doing good most days, he is not changing or adding any meds. He did tell me there is a time released Neurontin that you only take once a day at supper. You can also add a regular Neurontin on the days when the symptoms are worse. They both said it was odd to have symptoms on the uninjured arm as well as my face!!! The pain specialist said he could prescribe a combined cream of Neurontin and other things that a local pharmacy makes for the burning pain but it works better on the arms and legs. He said they would mail it to me since I live a hour from it. You have to have a script for it. He gave me samples to try. Any input is very welcomed. Any meds that work for you would be a great help so I can pass it on to my neurologist. Thank you all

Hi Murgir,
That's wonderful that you found a doctor let alone 2 that are so caring, have a great "bedside manor" provided you w/a cell phone number to reach him & actually listen I am so happy for you! I'm not sure how long you have been dealing w/your RSD/CRPS but from my experience over the years (june will be my 10yr mark :eek:) Ive learned to only increase the med's or strength of meds when u have to, example being your getting more flair up's things are progressing, pain has gotten worse etc. Reason I say this is because we build a tolerance to any medication over time so in turn med's stop working as well as we need them to & having RSD/CRPS that's never fun but point is if you get put on something strong now you wont have much to go up to later as the pain gets worse ya know what I mean. I take a muscle relaxer called Robaxin that might be something to ask about its a mild muscle relaxer so your not gonna be knocked out from it. For pain I take ibprophen & Percocet. Another suggestion which you may have already tried is a tens unit. I hope this helps in some way & if you have any ?s feel free to ask, hope your having a pain free or @ least a manageable night :hug: Take care

Sounds like you have a Neurologist, good for you!

Re; the time release Neurontin is called Gralise. I was on it but preferred to be able to take more in the evening so that I wasn't so foggy during the day. They both worked the same for me but, since I take additional medications with similar brain foggy side effects it is nice to be able to vary the timing of at least one med that causes that so not to compound the problem.

The cream he is talking about is a specially formulated compound cream usually with many medications in it - including ketamine, lidocaine, baclofen etc., it does help with sensitivity but I haven't had much luck with it for the burning pain.. but hey, we are all different so I hope it works for you!!

Regarding the PM that said it would "burn itself out" .. personally I would ask him for his number and then politely say you will call him when it does or hell freezes over whichever comes first. Or better yet, ask him if he's confident enough in saying that to let one of his colleagues cut one of his main sensory nerves 3/4 of the way through it to test out his statement. Then give him your number and have him call you when it "burns itself out". Can you tell someone said this to me along my road with CRPS II?? Not only has mine not burnt itself out but it has gotten progressively worse fast. If someone said that to me today - I would likely slap them silly.

My advice with that PM is find another one quickly, he won't likely do you any good in the long run. Clearly he doesn't understand CRPS 1 or 2.

Glad you have a great Neuro!!

Glad you found a good Neuro...and one that gave you his cell number? That is rare!

As far as the PM dr goes...find another one who understands RSD/CRPS. Making a statement like "it will eventually burn itself out" is flat out ignorant and shows he knows nothing about it! I have had this for 23 years and if it is gonna burn itself out, I want to know when??

I am sorry that I cannot advise on medications, there is nothing that I can take to help me. I didn't have much luck with the compounded creams, but I know many on here have. It is a good idea to try one.

I am in the process of looking for a new PM dr & Neurologist. A good one is so hard to find!

I have to admit Zookester I did a lol when I read your comment I think @ some point we all feel like slappin a doctor or 2 because they sit there with out a clue as to what we are dealing with & make some remark or give us a look like the pain we suffer with isn't as bad as we say it is yet we're the ones having to suffer daily. I actually had a doctor look @ me like I was gonna infect him or something when I offered him to sit on the hospital bed & he treated me like **** needless to say didn't have a clue what RSD was & looked @ me like I was nuts after he looked around the room when I asked him if he knew what it was. I couldn't believe the way he treated me I was in tears & to this day will not allow that doctor to set foot near me if he's on @ the hospital. I have learned after being treated like **** too many times by too many doctors & nurses that I have to stand up speak up & be my own advocate my own voice & not be pushed around just cuz they have "dr" in their title. WE as the patient know best what's going on w/our bodies & what works or doesn't work & have to be our own voice.

Hi murgir! I’m so happy for you that you have found new docs that you like. That is so important and such a difficult task. I guess what I don’t understand is the PM saying “it will eventually burn itself out”. I don’t get that at all!! What does he/she mean by that? I’m in my 10th year… I have never heard of such a thing, nor have I experienced that. So I guess I'm still waiting? lol

I take issue with the statement of ”They both said it was odd to have symptoms on the uninjured arm as well as my face!!!” Um… I have symptoms EVERYWHERE. It’s not odd, it’s called spread. For years I had symptoms only in my original site (right foot/ankle/leg), then it mirrored and then it went everywhere, even my face, my tongue, scalp, etc. So yes, it’s possible and not odd.

Anywho, I’m on 3600mg p/day of Neurontin (max dose), you’ve got a little room to adjust (increase dose) still, so that’s good. I think it’s great that they are looking into Rx creams for you. Gosh it’s all such an ordeal.. isn’t it? You’re new Neuro doc sounds awesome though! Gave you his cell number?! Wow, doctors do that? Lol That’s great Murgir! :hug:

I am glad you found some doctors you feel hopeful in. I am going to agree though with others about the pain specialist saying this will burn itself out. Did he maybe mean as you continue on the meds the burning will lesson but it came out odd? I have no idea but I would get that clarified.
Also like others said it is not odd to have problems/pain in other areas. It is very common with RSD. I know I have though the initial area is the worse. I also spread later then some.

Murgir, I'm really happy that your doctors have made you feel better about things - that's worth a LOT!

But....as others have said, the 'it'll burn itself out' hocum is sooooo dark ages, along with contrast bath therapy and 'your cheque is in the post' :winky: I had a pain doc who thought she had experience of working with cros tell me that one.....found another lol.

And CRPS symptoms in another part of the body should never ever EVER EVER be dismissed as 'a bit odd'....they should be noted down in case they become recurring and a sign of spread. It should be taken seriously. It always cracks me up (ironically, obviously :rolleyes:) when a doc says these numpty things and expects you to look admiringly into his eyes and thank him for his shining wisdom. What a prize plonker more like.

If you feel any easier than before murgir, then I'm :) for you. Let's hope you can get this thing under control and be able to draw breath...

Bram.

I guess what we ALL need to do all we can to get awareness out there!!

I still have to see my original Ortho. Dr. for all of my work & LTD forms
because he was the originating Dr.
He's young & looked like a "deer in headlights" when I came back several times after surgery with ALL the symptoms. Of course I had never heard of CRPS/RSD
at that time. He finally called in a consultant who Dx'd it.
Well, more than a yr. later he still comes into the exam room saying "wow, look
how much better you are!" (Think he's covering his @#*?)
Several nerve blocks & 60 P.T. visits later the swelling has stayed down & I've regained about 30% motion.
He looked at me like I was bonkers when I said it's spreading to my foot now.

I wonder if he tells me over & over how much "better" I am that it will magically come true?

Thanks everybody. No I do not feel better about this Bram. Like most of you I do not believe "IT WILL BURN ITSELF OUT". I also know it can spread. Just thought like most of y'all all know, there a few doctors that really know about this disease!!!!! I understand though because I am probably the only one he has ever seen for this, so he has had no reason to look into it. I can tell that he is caring and is open to the research I have done. After seeing them, I know what articles to take to each on my next visit. I ran into the neurologist one day before he saw me as a patient and told him I have this and he said you need to come see me " Jan, I heard that hurts like hell" So he does get some of it. Oh well I feel like a teacher now!!!! Gotta do my research before the visits I have to pay for. They are both really nice and I am going to give the PM doctor another visit. I am from a small town and there are very few doctors around here. The next close town is an hour away and there are none familiar with this there either. A friend lives in a large city 4 hours away and she is yet to find one who deals with this there. So meanwhile I will just do my homework

This is the truth! I feel like, and my husband jokes that, I am studying to be a neurologist. :rolleyes: In our situation we have to know as much as we can just to protect ourselves.

I guess we all sound a bit aggressive and hard on the new PM doc. :o I think we are all just being protective of you. I also think most of us have a fairly short fuse when it comes to doctors and their lack of knowledge of CRPS. Good care is hard to find when you don't have a rare condition. With CRPS at times it can feel impossible. I've lived in a small town before and you're right, it can be super tough with limited options. And yes, I agree, it can be just as tough in a city with millions of people.

It is so hard to navigate the CRPS waters. I truly hope that they will listen to you and read all the research you provide, and offer options that work well for you. So much of it is trial and error because we are all so different in our response to medication, therapies, and treatments.

Please know that I think (imo) that we all meant well and didn't mean to cause any additional stress. :hug: Wishing you the best! VR

Az-di - I had the same experience. Surgeon didn't call it CRPS u ntil I specifically asked him questions based on my research. Now every time I see him he tells
Me how GREAT I'm doing. My husband doesn't even want to be in the exam room because the doc's attempts to minimize what happened to me (translation: cover his butt) makes my husband so angry. I didn't lose hair on my toes, so "its not that bad". REALLY?! So selfish and discompassionate

Hi murgir - sounds like a very reasonable plan. The PM doc deserves a second chance. Yes, the researching is a lot of work . We are here to help! And there is no better investment of your energy than in improving your health and well being. Let us know how it goes ~lottie

Ditto what Vrae said,

I certainly am happy you have what sounds like a very understanding and intrigued Neurologist - even if he isn't familiar having someone who shows you compassion with an equal amount of interest in your care will be of great benefit for you in the long run.

My comments (and I'm guessing some from others) about the PM came because it brought back the "sting of reality" when those words were said to me and for a bit.. I believed... only to be filled with anger as the disease progressed and more knowledgeable doctors confirmed the ignorance of the one who said it. The biggest problem with that thought is that often a doctor who thinks that will not aggressively treat the disease because they "think" it will eventually burn out.. so many suffer needlessly and sadly by the time it is realized that it will not burn out, the benefit of early/aggressive treatment is lost.

We all want the best for each other!

Here is a link you might find helpful that provides a ton of info on medications for treating CRPS as well as ones to stay away from. Even though it is a little dated the meds mentioned are often what is used today by versed doctors as a starting place.

Wishing you the best,
Tessa

Murgir - I think a doctor who doesn't know the disease but is willing to learn...is worth a dozen docs who have experience of CRPS, but don't keep up to date with research and won't listen :winky:

I think it sounds a very hopeful situation if he is interested and willing to listen. I know I'd love to be a teacher to my own GP if only he was interested!!!!

Fingers crossed murgir. Think of the good work you're doing if you can educate this doc about CRPS so that he can help more of us suffering with this thing...:)

Take care, and have a good day where you can.

Bram.

Bram you are so right about a doctor willing to listen and wanting copies of the info I took with me. Between my son and I we have had some rare things happen to us. When my son was about 10,he took off his sock and his foot was purple up past his ankle, I then took off the other one and it was too. We took him to the ER, scared to death. I first thought heart or vascular blockage. He was diagnosed with a rare disease cant remember the name and the doctor said "don't worry, it can cause kidney damage but that wont happen for another 5-6 years" !!! then went with pictures to dermatologist and he said it looked like Purpuric gloves and socks syndrome. Went to the other doctor again with the lab results to proved PG&SS and she said no he has (whatever wrong disease she said before) even with lab proof she would not admit she was wrong!!! Then I spent 30 days without leaving the hospital with my son after a accident causing gangrene inside the bone. that was 4 years ago. Though I would also add the PM said the reason RSD patients got so bad was because instead of doing the things they use to do, because of fear of pain they do less and that causes it to get worse due to inactivity!!!!!! I so wanted to say no you have that so wrong. We are in pain, that is what keeps us from doing the things we use to do!!!
O'Boy I know that statement will cause most to tare and feather him haha. Vrea, you caused me no stress and I know telling all of you about the inactivity reason for all our pain will cause you all stress. He also said "you do know this disease usually causes marital problems don't you" !!!! What a visit... what a stack of papers I will have for him highlighted in RED

Well ..... he sort of got a glimmer of truth in there. Inactivity will definitely make you worse. You must keep moving! However, the type of activity and learning how to pace your activity is the key. Before this happened I was working two part time jobs and opened a small business and taking care of my family. The hardest thing to overcome was moving at a slower pace and choosing selectively what I would spend my precious energy on.

Yes, Lottie, we all have to learn to measure what we can handle each day and limit it reasonably.

I doesn't burn itself out but you may be able to douse the fire. I remember going in to the docs with highlighted pages of info too! :winky:

That's my goal !

Sounds like your new neuro is a real keeper, Muguir. I'm not as confident about the sounds of the PM, but you're the one who has to like him. :winky:

So true! And I suspect that finding compassionate and open physicians and investing in their education with our own research might have a lasting payoff for each of us personally and all who follow.

I think you're in a great situation being as remote as you are and finding concerned and devoted (-sounding) docs.

I thought I had a sprain/strain that wouldn't heal and I was self treating in my hardheaded way until I couldn't function or think as it worsened and started taking over my life. The first orthopedic doc I saw heard my story, looked at the xray and said he thought I had mild arthritis in my left thumb. and offered me a shot of cortisone. He was pretty irritated when I emotionally declined that offer and then continued to surmise the silliest and most ridiculous explanations for my symptoms. I honestly came away thinking I could have gotten more insight at the bar talking to an earnest and well-meaning drunk.

But after that I was lucky enough (of a fashion) that the next doctor suspected CRPS. I went to see my awesome internal med doc and she also suspected CRPS. They both recommended the same rehab/pm doc that I saw earlier this week and liked (who confirmed the dx). I remember thinking how lucky I was that in my midwest location I didn't run into more podunk docs just phonin' in their paperwork. Whew, I was lucky. I remember the horror and rage after the "mild arthritis" incident and I've heard enough in my short time here from many of you to REALLY feel lucky and I think that you, murgir, are lucky like me. ;)