[mopo]

I was diagnosed with crps five years ago and for the last 2 years, I've been checked out from getting current medical care by having my pcp fill my prescriptions. I just needed to step back from the 12 different doctors that had been involved with my care. Several specialists agreed with the diagnosis. I decided that I should go back to a pain specialist/neurologist to monitor my health and to find out about any new treatments. The new pm has some doubts that I have crps because many of the symptoms I previously showed were not visible at my appointment. When I began taking the 9 different meds that I currently take, most symptoms had some relief. Swelling went down, one could actually touch my legs with out me freaking out, color changes stopped, etc. The doctor wants to take me off 3 pain meds which I know will produce severe pain. He just doesn't think I'm in as much pain as I should be if I have crps. Once you began taking meds (Lyrica, Fentanyl, Percocet, tramadol, etc.), did some of your symptoms stop showing? Of course, I am wondering if I'm crazy because he doesn't believe me since he hasn't read other reports. Any similar experiences?

[Brambledog]

Originally Posted by mopo

I was diagnosed with crps five years ago and for the last 2 years, I've been checked out from getting current medical care by having my pcp fill my prescriptions. I just needed to step back from the 12 different doctors that had been involved with my care. Several specialists agreed with the diagnosis. I decided that I should go back to a pain specialist/neurologist to monitor my health and to find out about any new treatments. The new pm has some doubts that I have crps because many of the symptoms I previously showed were not visible at my appointment. When I began taking the 9 different meds that I currently take, most symptoms had some relief. Swelling went down, one could actually touch my legs with out me freaking out, color changes stopped, etc. The doctor wants to take me off 3 pain meds which I know will produce severe pain. He just doesn't think I'm in as much pain as I should be if I have crps. Once you began taking meds (Lyrica, Fentanyl, Percocet, tramadol, etc.), did some of your symptoms stop showing? Of course, I am wondering if I'm crazy because he doesn't believe me since he hasn't read other reports. Any similar experiences?

Hi mopo and welcome!

What symptoms did you have at the time your CRPS was diagnosed? That's the important thing (IMHO lol). I've into my third year of CRPS, and my symptoms have shown some changes. In my knee (where it started) I am not very skin-sensitive most of the time, even my toes (my worst area at the moment) can have times where they are not that sensitive, then later they can be astoundingly painful and I can't let anyone near them.

One of the characteristics of CRPS is that symptoms vary both from one individual to another, and from one time to another. Just because a symptom is not present at one time, doesn't mean it is not occurring at other times.

My advice would be to catalogue your symptoms daily in a diary, and take photos of any visible symptoms (preferably on your phone for easy access) so that you have a record you can show your docs at any time they seem to show doubt . I take mine everywhere and have shown them to every treating doc - most are interested and are more willing to believe you when you say 'my leg was awful yesterday' when you can prove it... Of course the pain and ache etc are not visible, but if you keep a symptom diary they can see the course of your symptoms and will be more involved in your story. Weird but true

Your doc sounds like he maybe hasn't got that current a knowledge of CRPS. Might be worth taking him a copy of the latest info from a site like rsdhope.org or the main NHS site in the UK. As long as you offer it politely 'for interest' he might be willing to read it!

Good luck

Bram.

[zookester]

Originally Posted by mopo

I was diagnosed with crps five years ago and for the last 2 years, I've been checked out from getting current medical care by having my pcp fill my prescriptions. I just needed to step back from the 12 different doctors that had been involved with my care. Several specialists agreed with the diagnosis. I decided that I should go back to a pain specialist/neurologist to monitor my health and to find out about any new treatments. The new pm has some doubts that I have crps because many of the symptoms I previously showed were not visible at my appointment. When I began taking the 9 different meds that I currently take, most symptoms had some relief. Swelling went down, one could actually touch my legs with out me freaking out, color changes stopped, etc. The doctor wants to take me off 3 pain meds which I know will produce severe pain. He just doesn't think I'm in as much pain as I should be if I have crps. Once you began taking meds (Lyrica, Fentanyl, Percocet, tramadol, etc.), did some of your symptoms stop showing? Of course, I am wondering if I'm crazy because he doesn't believe me since he hasn't read other reports. Any similar experiences?

I think we all feel a bit like we are crazy sometimes!!

Could it be that maybe you are experiencing remission? Did you bring your prior records with you to the appointment so that the new PM had your history and diagnosis available before recommending the reduction in medication? You are lucky in that most PCP's won't write more than a few scripts for pain medications before referring you to a PM especially for chronic pain syndromes. Will he/she continue to do this until your new PM is up to speed or adds additional treatment recommendations or diagnosis?

I don't know.. I would be torn at this point if a doctor told me I might not have CRPS.. I think I would jump up and down for joy that something other than this beast is causing the problem. On the other hand.. I would be stressed and upset just the same, at wondering how pain will be managed while another diagnosis is considered.

You mentioned you were just getting back on track with a new PM to see if new treatments are available since the onset of your CRPS - are you getting more than one opinion? Personally I would strongly suggest doing this in light of the conflicting diagnosis or at least make a follow up after this particular doctor has a chance to review your old charts. Then you could ask directly why he/she thinks you do not have CRPS now and what training/credentials they have above the doctor who originally diagnosed you. I would do the follow up with another person present so that you have an extra set of ears. I would also gather a copy of the chart notes from this new PM to see exactly what is written in case there was a misunderstanding a long the line.. which can happen.

Honestly I hope that you don't have CRPS - that would be better than winning the lottery in my opinion. But.. I like tend to hold onto any thread of hope and statistically more doctors are ignorant when it comes to CRPS than aren't so the odds unfortunately are against a more favorable diagnosis. Remission however does happen so that can explain the reduction in symptoms and be a great thing for you no matter how long it lasts.

Take good care - hoping you get this sorted out soon.
Tessa

[AZ-Di]

Originally Posted by mopo

I was diagnosed with crps five years ago and for the last 2 years, I've been checked out from getting current medical care by having my pcp fill my prescriptions. I just needed to step back from the 12 different doctors that had been involved with my care. Several specialists agreed with the diagnosis. I decided that I should go back to a pain specialist/neurologist to monitor my health and to find out about any new treatments. The new pm has some doubts that I have crps because many of the symptoms I previously showed were not visible at my appointment. When I began taking the 9 different meds that I currently take, most symptoms had some relief. Swelling went down, one could actually touch my legs with out me freaking out, color changes stopped, etc. The doctor wants to take me off 3 pain meds which I know will produce severe pain. He just doesn't think I'm in as much pain as I should be if I have crps. Once you began taking meds (Lyrica, Fentanyl, Percocet, tramadol, etc.), did some of your symptoms stop showing? Of course, I am wondering if I'm crazy because he doesn't believe me since he hasn't read other reports. Any similar experiences?

Welcome! Sorry you have to be in this situation though!
Could you ask to keep RX in place while you try to wean off and see what happens? Then you could go right back on them if need be?
Well, yes my symptoms improved somewhat with meds. Mine are Lyrica, Cymbalta, Ketamine cream and Nucynta (substitute for Oxycodone). I have had the most relief from nerve blocks, but after 13 of those now the effects are not as significant. The nerve blocks made a huge difference in the appearance of the skin and tissues, so in that respect the CRPS is not nearly as obvious as in the beginning. I'm still left a contracted hand and disfunctional wrist but with extensive P.T. that is much improved because I had NO movement at all in the beginning.
But like the others have said, I have yet to find a real pattern to the pain. The burning is now intermittent thru out the day. But all the other types of pain still break thru in a total random manner.

[Nanc]

I do not take any of those meds, so I can't comment on them changing things. But yes, symptoms definitely can change over time! I have had RSD/CRPS for over 22 years now. I first developed it in my face and had all the classic symptoms. I was treated aggressively and went into remission. When I came out of remission I did not have all of those symptoms, but I did have the pain and swelling! I hurt my right hand in 2009 and developed it there; I now have it throughout most of my body. I do not have as much discoloring and sensitivity as I used to. I have two spinal cord stimulators implanted for pain, I think them and time is what changed things for me.

So sorry you are dealing with this!
Nanc

[LIT LOVE]

If your sysmptoms are reduced than the meds/drugs are helping!

You never want to reduce more than one at a time!!! How else will you know what's doing what? Research all before suddenly stopping to avoid withdrawals and side effects.

It's a good idea to reduce meds (even temporarily) a few times a year and check where you're at. You can also increase activity and try new environments as well. Just don't push so hard you cause a flare and potentially start new spread.

[Vrae]

Hi mopo!

I woke from surgery (back surgery) with CRPS II symptoms raging! I could not even tolerate a sheet on my foot, had to learn to walk again, etc. It was really bad. After a couple of years I was able to step down from pain meds, leaving only Gabapentin and my drug of choice ibuprofen. Later, maybe three or four years in, I quit taking the gaba, and got by on only ibu. I managed okay but occasionally had breakthrough pain that would require bigger gun pain meds for a short period of time. I guess it was two or three years ago that the pain came back with a vengeance. Not just crazy high neuropathic pain levels but new symptoms like crushing bone pain, tremors and jerks, etc. I’m back on gaba, and muscle relaxers, pain meds PRN, and the list goes on. I'm now at year 10 with this.


My point is that Lit Love might be right that the meds you’ve been on have had your symptoms under good control and that’s a beautiful thing. Or.. it could be too that your symptoms have lessened somewhat, or what Nanc said that your symptoms can change and certainly fluctuate.


To echo AZ-Di; If you back off the meds your body will tell you if you need them or not. So if you’re willing to humor this doc or just want to find out for yourself, then perhaps follow his advice while you still have backup meds incase he’s wrong; to ramp back up while you seek a new physician or work another option.


Zookester is right on (among other things stated) with all of us feeling a bit crazy from time to time! I am beginning to believe that I am certifiable! lol


And Bram, well I just hired her as my personal counselor (see my recent post “I’m getting too told for this"). So I would listen to any advice she offers. (please laugh with me Bram). Seriously though, she's a great gal with some great advice.


Okay I’ll quit, just trying to be on a lighter note today. I know what you’re dealing with mopo are some tough choices about how to proceed. I really hope that everything pans out well for you hon! Hang in there! You’ve found a terrific group of folks here! You’re in good company.

[Allanira]

If your new pcm isn't well versed in CRPS then you either need to educate them ( unless one of those old sticks that won't bend and learn) or find one that is well educated in it. It has taken me almost 10 yrs just to be believed that I hurt. Even after many rounds of pt, showing up at appts with my knee and lower leg swollen so big I couldn't get any clothing except underwear and a skirt (or hubbies shorts don't tell him lol) over it. I have even worn his pants. Huge in the waist and other leg and tight on my bad leg. I had them almost ALL tell me its all in my head, and you can't be in that much pain you just want drugs. I hate taking meds. I don't even like taking vitamins. I don't like feeling fuzzy headed so why would I just want meds? Don't let them treat you like a nonentity. Please don't let them do to you what they have done to me.