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-   -   Please help/need input/appt w/ PM on 11/14/16 (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/241926-please-help-input-appt-pm-11-14-16-a.html)

Sophie0513 11-12-2016 04:11 PM
Please help/need input/appt w/ PM on 11/14/16
 
I am reaching out for much needed information. After spending hours researching anything that closely resembled my situation, I am now more confused and scared!
Over the summer, I developed a mortons neuroma in my left foot (I suspect I have one in my right foot as well). It became somewhat painful and I consulted with a podiatrist in September/mid to end of September and she gave me two cortisone injections. Within a week of the 2nd injection, I started to get a burning sensation. By the end of October, I had severe burning, tingling, foot feeling cold than hot, intermittent numbnesses, skin color changes etc which than spread to the other foot. Podiatrist than said it was pain out of proportion and dxd CRPS. I started seeing a PM doctor who started me on gabapentin 1200 mg per day and he will start sympathetic nerve blocks this Wednesday.
The PM doctor feels confident that this is treatable because the diagnosis was made early. However, these are my concerns:
I am not sure if I have CRPS 1 or CRPS 2? PM didn't say either way but if this involves a nerve in my foot (Podiatrist said it was very small??) wouldn't it be CRPS 2? From what I read in this forum, than no matter what treatment I get for my feet the pain will not go away or lessen unless the mortons neuroma is addressed?
I really am desperate for any input/suggestions about my situation.
I had to go on a leave of absence from work because the burning(Which is only on the bottom of my feet) became so severe and I found it hard to actually put any pressure on my feet. The bottoms of my feet just burn 24/7,

Littlepaw 11-12-2016 05:31 PM
Hi Sophie and Welcome,

I am so sorry for what you're going through. We all know how frightening this can be. But you are not alone and there are definitely reasons for hope. The majority of people with CRPS (80% according to Cleveland Clinic's Dr. Michael Stanton Hicks) improve over time.

Treatment for either CRPS 1 or 2 will be very similar; pain control, exercise, PT, anti-oxidents, stress reduction etc. Though a nerve injury can have its own set of issues and be a complicating factor there is still potential for healing. I had a severe, complicated nerve injury (worst kind possible) and had to have a repair so we know that I have CRPS 2. That said my symptoms are improved and under control with ongoing treatment. Recovery was slow and took a lot of aqua therapy and gradual weightbearing but I am able to walk and do what I need each day.

My best advice is to be cautious about any nerve destroying interventions in your foot. Phenol injections for Morton's neuroma can make things worse. Surgery, if ever pursued would be best done by someone with peripheral nerve training so they know how to handle the nerve properly to prevent a true neuroma from forming. Could you have damage to the nerve from your injections? It is possible but risks for this are lower if your injections were ultrasound guided. That interdigital nerve is small as your podiatrist said but even CRPS 1 appears to have damage to the small fibers in the skin of some CRPS patients according to Dr. Louise Oaklander. I would try not to worry too much about that at this point. If it makes you feel better you could ask for an ultrasound of that nerve which would show swelling or constriction. If your podiatrist hasn't done much of that a Physical Medicine doctor who treats Morton's could take a look. The pain in your other foot could be mirror pain, something I had originally that was not true CRPS but pain jumping across the spinal cord from pain being very intense. Mine resolved as I got better.

Nerves can be really fussy. If you are having even minor swelling in your feet now that could be contributing to aggravation of the nerve which can accumulate fluid and swelling itself. Any recommendation they have for footwear may be helpful and will be conservative treatment for the neuroma. Offloading pressure and also providing adequate support to give a little space between the toes are good strategies. Make sure you have an adequately large toe box. Try toe spreaders for short periods when off your feet. Get in a pool and swim. It will help your circulation and swelling while starting imperative exercise. You might also try a round of oral steroids which are recommended as an early treatment and can break the inflammatory cycle that gets CRPS going.

Hang in there and try not to stress too hard. I know it's easier said than done. But you beat this beast once before and we're all hoping you're going to beat again!

Sending hugs and healing love, :hug:

CRPSbe 11-12-2016 06:28 PM
Quote:
Originally Posted by Sophie0513 (Post 1228653)
I am not sure if I have CRPS 1 or CRPS 2? PM didn't say either way but if this involves a nerve in my foot (Podiatrist said it was very small??) wouldn't it be CRPS 2? From what I read in this forum, than no matter what treatment I get for my feet the pain will not go away or lessen unless the mortons neuroma is addressed?
I really am desperate for any input/suggestions about my situation.
I had to go on a leave of absence from work because the burning(Which is only on the bottom of my feet) became so severe and I found it hard to actually put any pressure on my feet. The bottoms of my feet just burn 24/7,
CRPS 1 is without nerve damage or RSD; CRPS 2 is with nerve damage (causalgia).

Ask your PM doctor for more information. A podriatist can only do so much. Ask for referrals to pain management. In my country pain clinics know the most about CRPS (treat it all round, not just the pain).

I wish you all the best for your upcoming appointment. Keep us posted.

It is a journey, has been for all of us. Good luck!

Sophie0513 11-12-2016 10:53 PM
THank you Littlepaw for your words of encouragement! I am in such a bad place right now and it happened so quickly...I don't even recognize myself right now...I look in the mirror and I look hollow and empty. I know this will pass at some point though!

Sophie0513 11-12-2016 10:55 PM
Thank you Marleen for your post! I don't feel so alone now! Not a good time for me right now and your response meant a lot.

CRPSbe 11-13-2016 06:14 AM
Quote:
Originally Posted by Sophie0513 (Post 1228669)
Thank you Marleen for your post! I don't feel so alone now! Not a good time for me right now and your response meant a lot.
We're all in this together. So many RSD patients out there. I hope you get the best care.

Good luck for your appointment tomorrow. :)

Sophie0513 11-13-2016 07:42 AM
Thank you Marleen
 
Quote:
Originally Posted by CRPSbe (Post 1228677)
We're all in this together. So many RSD patients out there. I hope you get the best care.

Good luck for your appointment tomorrow. :)
thank you Marleen

Sophie0513 11-13-2016 07:52 AM
Additional questions (sorry)
 
Quote:
Originally Posted by Littlepaw (Post 1228656)
Hi Sophie and Welcome,

I am so sorry for what you're going through. We all know how frightening this can be. But you are not alone and there are definitely reasons for hope. The majority of people with CRPS (80% according to Cleveland Clinic's Dr. Michael Stanton Hicks) improve over time.

Treatment for either CRPS 1 or 2 will be very similar; pain control, exercise, PT, anti-oxidents, stress reduction etc. Though a nerve injury can have its own set of issues and be a complicating factor there is still potential for healing. I had a severe, complicated nerve injury (worst kind possible) and had to have a repair so we know that I have CRPS 2. That said my symptoms are improved and under control with ongoing treatment. Recovery was slow and took a lot of aqua therapy and gradual weightbearing but I am able to walk and do what I need each day.




My best advice is to be cautious about any nerve destroying interventions in your foot. Phenol injections for Morton's neuroma can make things worse. Surgery, if ever pursued would be best done by someone with peripheral nerve training so they know how to handle the nerve properly to prevent a true neuroma from forming. Could you have damage to the nerve from your injections? It is possible but risks for this are lower if your injections were ultrasound guided. That interdigital nerve is small as your podiatrist said but even CRPS 1 appears to have damage to the small fibers in the skin of some CRPS patients according to Dr. Louise Oaklander. I would try not to worry too much about that at this point. If it makes you feel better you could ask for an ultrasound of that nerve which would show swelling or constriction. If your podiatrist hasn't done much of that a Physical Medicine doctor who treats Morton's could take a look. The pain in your other foot could be mirror pain, something I had originally that was not true CRPS but pain jumping across the spinal cord from pain being very intense. Mine resolved as I got better.

Nerves can be really fussy. If you are having even minor swelling in your feet now that could be contributing to aggravation of the nerve which can accumulate fluid and swelling itself. Any recommendation they have for footwear may be helpful and will be conservative treatment for the neuroma. Offloading pressure and also providing adequate support to give a little space between the toes are good strategies. Make sure you have an adequately large toe box. Try toe spreaders for short periods when off your feet. Get in a pool and swim. It will help your circulation and swelling while starting imperative exercise. You might also try a round of oral steroids which are recommended as an early treatment and can break the inflammatory cycle that gets CRPS going.

Hang in there and try not to stress too hard. I know it's easier said than done. But you beat this beast once before and we're all hoping you're going to beat again!

Sending hugs and healing love, :hug:

SHould I talk to my PM doctor about the MN? I told him about it at our first meeting but he didn't see to concerned about it. Or should I wait and see how I respond to the sympathetic nerve block on Wednesday and the gabapentin? I will search the threads again about blocks but I did watch (forget his name-Dr chop raps video) and he said nerve blocks really don't help. I just have this nagging feeling that my left foot/mortons neuroma is coming into play in all of this or it could have been the cortisone shots. All I know is that it is creating a lot of painful burning

Shay08 11-13-2016 11:13 AM
Quote:
Originally Posted by Sophie0513 (Post 1228668)
THank you Littlepaw for your words of encouragement! I am in such a bad place right now and it happened so quickly...I don't even recognize myself right now...I look in the mirror and I look hollow and empty. I know this will pass at some point though!
Sophie, I really feel your emotional pain right now. I have a tendency to worry and stress out over the decisions that need to be made regarding treatments. Stress overload tends to worsen our pain. I try to deal with it using mindfulness exercises and by preparing in writing every question or comment I have to address with my doctor(s).


"SHould I talk to my PM doctor about the MN? I told him about it at our first meeting but he didn't see to concerned about it. Or should I wait and see how I respond to the sympathetic nerve block on Wednesday and the gabapentin? I will search the threads again about blocks but I did watch (forget his name-Dr chop raps video) and he said nerve blocks really don't help. I just have this nagging feeling that my left foot/mortons neuroma is coming into play in all of this or it could have been the cortisone shots. All I know is that it is creating a lot of painful burning"

I believe you should address all of these issues with your doctor. Whether you do that before or after your nerve block is up to you. If I am not mistaken, you had nerve blocks with your first encounter with CRPS and you eventually went into remission. Be prepared with a written list and listen closely to the doctor's responses. Leaving issues unspoken will only add to your stress.

Try to think positively. You went into remission before and you can do it again!

I will keep you in my thoughts and prayers. Remember we are here for you and care.

Shay :hug:

Sophie0513 11-13-2016 02:40 PM
Thank you
 
Quote:
Originally Posted by Shay08 (Post 1228693)
Sophie, I really feel your emotional pain right now. I have a tendency to worry and stress out over the decisions that need to be made regarding treatments. Stress overload tends to worsen our pain. I try to deal with it using mindfulness exercises and by preparing in writing every question or comment I have to address with my doctor(s).


"SHould I talk to my PM doctor about the MN? I told him about it at our first meeting but he didn't see to concerned about it. Or should I wait and see how I respond to the sympathetic nerve block on Wednesday and the gabapentin? I will search the threads again about blocks but I did watch (forget his name-Dr chop raps video) and he said nerve blocks really don't help. I just have this nagging feeling that my left foot/mortons neuroma is coming into play in all of this or it could have been the cortisone shots. All I know is that it is creating a lot of painful burning"

I believe you should address all of these issues with your doctor. Whether you do that before or after your nerve block is up to you. If I am not mistaken, you had nerve blocks with your first encounter with CRPS and you eventually went into remission. Be prepared with a written list and listen closely to the doctor's responses. Leaving issues unspoken will only add to your stress.

Try to think positively. You went into remission before and you can do it again!

I will keep you in my thoughts and prayers. Remember we are here for you and care.

Shay :hug:
THank you Shay ! I am trying to stay positive however my fear gets the worst of me! I know I went into remission once. I had basically forgotten what that whole experience felt like but wow it's pretty much the same thing with the exception thAt I could at least walk! I think that not being able to walk, stand for more than 5 mins or wear any kind of shoe has kind of sent me over the edge! I'm holding on and glad that I found this site!!!!
These kind of sites were not around when I first got RSD! Thank you again

Littlepaw 11-13-2016 04:04 PM
Hi Sophie,

I would certainly bring up the MN but you may be accurate that your PM may not be too concerned about it. Mine wasn't especially interested in my pain contributors since he wouldn't really be treating them. He was more concerned about treating the pain and leaving the other kinds of treatment to other specialists. It is worth mentioning though as your doctor may have other ideas or info for you. Intuitively it seems that treating a pain contributor would make a difference but also remember that plenty of people have MN but don't have CRPS.

I hope the sympathetic block helps. If it doesn't then it may mean your pain isn't sympathetically maintained. The evidence on blocks is mixed. They aren't a sure bet but they do work for some people.

I agree with Shay on the mindfulness approach. It does help and reducing stress though challenging is possible. Remind yourself that you are going to be okay. I tended to catastrophize in the beginning which wasn't helpful and wasn't reflective of mine or the majority of outcomes.

:hug:

Sophie0513 11-13-2016 08:14 PM
Thank you Littlepaw
 
Thank you again Littlepaw. I appreciate your input into all of this! Also, thank you again for the encouraging words. I know This is my 2nd go around with crps but i still am adjusting to finding out that it has returned!

Shay08 11-14-2016 12:15 AM
Quote:
Originally Posted by Sophie0513 (Post 1228704)
THank you Shay ! I am trying to stay positive however my fear gets the worst of me! I know I went into remission once. I had basically forgotten what that whole experience felt like but wow it's pretty much the same thing with the exception thAt I could at least walk! I think that not being able to walk, stand for more than 5 mins or wear any kind of shoe has kind of sent me over the edge! I'm holding on and glad that I found this site!!!!
These kind of sites were not around when I first got RSD! Thank you again
Good luck with your appointment today. Keep hanging on and believing that things will improve. If you can, please keep us updated.

Shay:hug:

Sophie0513 11-14-2016 07:32 AM
Thank you
 
Quote:
Originally Posted by Shay08 (Post 1228735)
Good luck with your appointment today. Keep hanging on and believing that things will improve. If you can, please keep us updated.

Shay:hug:
Thank you Shay
I will!!!! Thank you again for all your kind and supportive words

Sophie0513 11-18-2016 01:01 PM
Nerve block
 
Well I got my first lumbar sympathetic nerve block this past Wednesday. I don't think I noticed much improvement with my pain. I have another one coming up this Wednesday for the right side.
If I don't notice any improvements with the 2nd block, I will have to decide if I should try another round just in the event that the blocks may work or just not get anymore blocks.

Littlepaw 11-18-2016 03:35 PM
Hi Sophie,

Maybe your pain isn't sympathetically maintained. Your doctor may have some insight on this and what that indicates for trying any more of them. Did you have any response to the block at all? A sympathetic block will warm the limb even in a completely healthy person...

Sophie0513 11-18-2016 05:21 PM
Quote:
Originally Posted by Littlepaw (Post 1229099)
Hi Sophie,

Maybe your pain isn't sympathetically maintained. Your doctor may have some insight on this and what that indicates for trying any more of them. Did you have any response to the block at all? A sympathetic block will warm the limb even in a completely healthy person...
Littlepaw. I'm not sure if my limb was warm after the block. When this doctor treated me years ago, he would come to the recovery room and he would feel my knees and talk to me. On the day of my block, I noticed that he had a lot of patients scheduled for procedures and I didn't see him after the block.
I may have had a very slight decrease in pain in my left foot, however it only lasted a day or two. I did notice today that I tolerated shoes better today, however I have been rubbing DSMO cream on my feet every few hours.
Could my pain be sympathetically independent already?? Symptoms started mid September. As much as feet burn, I can feel pain coming from the neuromas too! (I see my PM in a 1.5 weeks, so I will bring this up as well.) Well it will be interesting to see how this next block goes. Thanks littlepaw

Littlepaw 11-18-2016 06:49 PM
Sophie,

Sorry if I alarmed you. I should've clarified. CRPS is not always sympathetically maintained which is part of why the name was changed to CRPS. I didn't mean that you'd advanced to sympathetically independent pain, just that it may have a different mechanism.

Sophie0513 11-18-2016 08:07 PM
Quote:
Originally Posted by Littlepaw (Post 1229122)
Sophie,

Sorry if I alarmed you. I should've clarified. CRPS is not always sympathetically maintained which is part of why the name was changed to CRPS. I didn't mean that you'd advanced to sympathetically independent pain, just that it may have a different mechanism.
No Littlepaw. It's not you it's me...everything is alarming me right now! WIth the pain in the bottom of both feet, my activities of daily living have been greatly effected...so I am trying to learn and read up on CRPS as much as I can!!! Thanks again have a nice weekend

Sophie0513 11-18-2016 10:12 PM
I may be overthinking this and definitely stressing out about this especially since I had to leave work! And I need to stop this until I get more answers or pain relief
But I was instructed to ice and I applied ice at least 4x a day so maybe this somehow pushed it from sympathetically maintained pain to sympathetically independent pain? Something else I should mention at my next PM visit.

I may possibly be he most anxious person to ever post on this message board:

Sophie0513 11-18-2016 10:21 PM
More anxious thoughts!
 
Now wondering if I should get my feet checked out by a neurologist?? Not sure at this point. OKay I am now full blown anxiety attack! Done for the night and hoping tomorrow is a better day

CRPSbe 11-19-2016 07:17 AM
Quote:
Originally Posted by Sophie0513 (Post 1229141)
Now wondering if I should get my feet checked out by a neurologist?? Not sure at this point. OKay I am now full blown anxiety attack! Done for the night and hoping tomorrow is a better day
Calm down. :) Panicking is not going to get you anywhere.

Just sort it all out in your head, and make an appointment if you're worried. There's nothing more to it. :)

Sophie0513 11-19-2016 11:26 AM
Thank you
 
Thank you Marleen. Yes I agree that I need to calm down..I'm trying..may see if I can get a script for an anxiety med at this point.
I appreciate your input. Thank you again Marleen!!!

Shay08 11-19-2016 01:34 PM
Quote:
Originally Posted by Sophie0513 (Post 1229140)
I may be overthinking this and definitely stressing out about this especially since I had to leave work! And I need to stop this until I get more answers or pain relief
But I was instructed to ice and I applied ice at least 4x a day so maybe this somehow pushed it from sympathetically maintained pain to sympathetically independent pain? Something else I should mention at my next PM visit.

I may possibly be he most anxious person to ever post on this message board:
No, you are probably not the most anxious person to ever post here. I am right up there with you when it comes to anxiety. I try to deal with it by using mindfulness.

You are really in a predicament because you are trying to research everything about CRPS, but that only keeps your mind on the negatives in your life. Aim for balance. Set a period of time for the research and then spend time researching something that you would find very pleasant. I know it is not easy to tune out all that pain, but keep bringing your thoughts back to the pleasant. It is not easy, but it can help reduce your anxiety levels.

Please keep in mind that CRPS is a very complicated syndrome. If doctors have not completely figured out how to help all of us, you are not going to find all the answers yourself. We are all different and we respond to treatments differently. All you can do is be aware of the different treatments available and when one fails, you try another. It is a journey that most of us know only too well.

Keep us updated and don't worry about being the most stressed person posting here. At least you are venting!

So now that you have finished reading this, take two minutes to think of something you find very pleasant, and hopefully you can bring down those stress levels.

:hug:
Shay

Sophie0513 11-20-2016 03:11 AM
THank you Shay
 
I really appreciate that you took the time to reply to my concerns. Your suggestions are solid ones and I will do my best to put them into practice!!!!!
thank you again

CRPSbe 11-20-2016 05:10 AM
Quote:
Originally Posted by Sophie0513 (Post 1229225)
I really appreciate that you took the time to reply to my concerns. Your suggestions are solid ones and I will do my best to put them into practice!!!!!
thank you again
I know it's really hard to "switch off" when there is this constant pain... Try though, try your damndest.

I was in pain for almost 3 years before I was diagnosed and apart from anti-inflammatories once in a while, I had 0 pain relief. It wasn't even addressed until I got diagnosed, just never talked about. My doctors (all specialists, orthopedists) were clueless. There is no better word to describe it, unfortunately. They all stood there and saw the symptoms, but just... I don't know had a black out, I guess, when they were looking for a diagnosis.

Sophie0513 11-20-2016 08:15 AM
Thank you Marleen
 
I have been combing thru these threads and I have seen some of your earlier posts. You have been through a lot yourself and I appreciate your encouragement. YOu understand!

CRPSbe 11-20-2016 08:44 AM
Quote:
Originally Posted by Sophie0513 (Post 1229230)
I have been combing thru these threads and I have seen some of your earlier posts. You have been through a lot yourself and I appreciate your encouragement. YOu understand!
I do understand. A lot of us here understand. I do know what it's like to suffer for a long time before getting some pain relief. I find this hard, because they don't even let an animal suffer. It shouldn't be this way for humans either. :(

Becca71 11-21-2016 12:13 PM
One thing my dr. said when he did my nerve block was that it would tell him if the CRPS was sympathetic or not. Mine responded (he checked temps of my feet before and after procedure) so we knew we had a yes for that.

I'm surprised you were told to ice, as my understanding is that ice is not a good idea for CRPS? Or is it the injection site you are icing?

Sophie0513 11-23-2016 02:02 PM
HI Becca
 
Quote:
Originally Posted by Becca71 (Post 1229316)
One thing my dr. said when he did my nerve block was that it would tell him if the CRPS was sympathetic or not. Mine responded (he checked temps of my feet before and after procedure) so we knew we had a yes for that.

I'm surprised you were told to ice, as my understanding is that ice is not a good idea for CRPS? Or is it the injection site you are icing?
Prior to crps diagnosis, my podiatrist told me to ice. Big mistake I Know!
I am glad you responded to your sympathetic block. Do you plan to get more of them or did your doctor use it as a diagnostic tool?


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