[Abbie]

I am seeing a lot on here lately posts saying that CRPS--Type 2 is worse than Type 1...

Can anyone provide me with a link or links that show this ????

Every thing that I have found shows the symptoms are the same... the only differences are the diadnostic criteria.

From Patient UK:
http://www.patient.co.uk/doctor/Comp...ome-(CRPS).htm

• CRPS I - formerly known as reflex sympathetic dystrophy (RSD), this is pain which develops in the absence of identifiable nerve injury.
• CRPS II - formerly known as causalgia (literally meaning 'hot pain') develops after injury to a major peripheral nerve.

However, the difference may be academic for patients who experience the same pain in both conditions and for whom treatment options are the same.

Similar information also found at:
RSD HOPE
http://www.rsdhope.org/Showpage.asp?...=3&PGCT_ID=545

RSDSA
http://www.rsdsa.org/2/what_is_rsd_crps/index.html

Just looking for clarification information so that I can better understand for myself and be able to have the information in hand to discuss with my doctors....

Abbie

[Wilbyfree]

I can only share my personal experience with you. I had bilateral calcaneal fractures, my right foot was all but a thread attached to my lower leg. It was a crush injury, I severed the tendons, artreries, and nerves along with many other smaller implications as well as compartment syndrome in my right foot. My left foot had the same crush injury but was not an open fracture. So, I have CRPS type 1 in my left foot and late stage causalgia in my right foot. Both of my feet and lower legs are very painful, however, there is a major intensity in my right foot that is really indescribable compared to the left. But the injury to my right foot was also much worse than the left. I also deal with alot of postraumatic pain and deformities on the right that I do not have on the left.

So in my personal experience, the CRPS type 11 is a more intense pain due to the nerve damage. For instance, normally I can control the pain in my left foot with medication, TENS Unit, etc. But the right one, I have no control of the pain, ever. I don't know if this was the insight you are looking for, but by having both, I can only tell you the difference I feel between both feet. They can call it whatever they want, or list it in stages, but pain is pain. Hope this helps. Best wishes.

Jeanie

[love2laugh]

I have both types (in different parts of my body--- which have gone full body) and I would not choose to classify one as easier or more difficult to deal with than the other, there are some unique differences in both treatment options and symptoms.....

Now, to better explain--- I developed type 2 in my pelvis/abdomen due to complications from pelvic/abdominal surgery. The "positive" it was diagnosed relatively quickly and there are some experimental treatments (that can't be done with type 1) that seem to help. The "negative" it caused my autonomic nervous system to completely go haywire, resulting in internal spreading.... Also, due to the location it tends to effect everything and some conventional treatments don't work (ei blocks). Symptom wise, due to nerve entrapement I have intense itching at the initial site and my body thinks everything is foreign (especially adhesives...)

I developed type 1 in my legs/feet, many years ago due to multiple broken bones. The "positive", often times type 1 can be contained to the original site of injury, and there seem to be a lot more treatment options to help limit spread.... The negative--- in my case, my legs took much longer to be diagnosed, and by that time my immune system and sense of tempature regulation were already effected.

In my particular case, the type 2 has been the most bothersome because it kicked off a chain reaction and effects everything. Its a "spikey-er" type pain, very spastic, and the only thing that helps the spasticity is an experimental treatment that I am constantly fighting my insurance to pay for.

For both types, and since it's gone internal/full body, I use a combination of treatments--- physical therapy, injections, various meds, relaxation techniques, etc. My doctors and I also have to figure out ways to manage the other issues CRPS has caused (ei cardiac problems, weakened immune system, etc)..... The upside, being full body, I don't have the worry that its going to progress--so the fear of having sugery, injections, etc is minimized.

Ultimately though, we only understand the types we deal with and how it effects us personally--- we are all different.

L2L

[RNcrps2]

Hi Mike- I posted a question as to if CRPS 1 & CRPS 2 origins are different but treatment is the same why dont the topics just say CRPS patients. Dr. S last paper did just refer to CRPS not 1 or 2. His was the 1st i have found. I am not comparing whos is worse or spreads faster i just am wondering why the majority refer only to CRPS1 if they are to be treated the same. Have you found articles/trials that just say CRPS or CRPS1/CRPS 2? Please let me know. I have researched everywhere I can think of. I wonder only because i have CRPS2 and it worries me why topics/trials are directed towards CRPS1. momof4

[bobber]

RNCRPS
One of my dr's seemed to think[which I agree] that causalgia should be dealt with by means of finding the entraped nerve or severed nerve,compressed,ect should be dealt with before a SCS or ketamine,or painpump installation was done,,I also was told my one podiatrist , that they were going to [when it comes to different phases ] includeing SIP and SMP ,to just keep it under the head name CRPS without further complications,,,I personally dont know if that will happen,it was only the opion of one man, and alot of DR's are not well educated about CRPS,,,I do believe that it is in the best interest of us[the patient] to not only stay well educated ourselves but to find a DR who is meticulus enough with empathy to want to know what stage we are presently in ,to better treat us to lessen our pain and also enables us towards a possible remmission,,,I think it is very inperitive to know what stage we are in and how much damage has occured and what is savageable or reverseable if treated propererly ,. Insight on reconizing where we are at in and at what stage of CRPS we are in is important to recovery...The severity of being in RSDII Causalgia is frightening,,,Im Praying that someone will come along who will identify the cause[nerve entrapment,severered,impinged.compression,ect] to address this issue to allow a possible retreat of this disease,, I do believe that if my nerve entrapent was dealt with,,my condition would calm down,, In my opion,,,to find the culprit[nerve that is damaged for which is causeing the problem,] and treat that issue,,then I believe that other conservative treatments such as oral nerve meds or ketamine would have a better and tremendous success rate....but as long as we have a untreated nerve condition,,I believe the short circuit will continue,along with the deterioration of the body,,,

[bobber]

RNcrps2
I just wanted to add,,that it common knowledge to us all to give us an understanding of our condition and road to recovery that when we have a flare,,it is commonly caused by many things,,food we eat,,liquid we drink,especially caffeine and sugar ect,,,,or stress,or exercise or a certain movement or hitting the affected area ,,,All of these triggers in one way or another have one thing in common,,,,Traumatizing the nerve,,either by eating ,drinking,stress,or [hitting ,movement ,excerise,,,in which you are longateing the nerve,,,resulting into a flare or spread,anytime the nerve is traumaitized,that is the outcome,,,,I personally am trying to protect the nerve with discipline of diet,theropy,stimuli[lite] and supplements to enhance nerve health,,,,,I was given some good advice lately that i incorperated in my regimen,,is a magnesium cream ,rubbed on the entrapped area and poor circulated area several times a day and in less than one week,,there is a big difference,,,,,,The bottom line is freeing up the nerve from entrapment or impingment or supplementing for the shealth and nerve damage and mild massage sometimes helps,,,My opion is that if we are in a flare or spread,it is the cause of a nerve that is being traumatized,,,and the more severe the trauma,equals,the more severe the spread and the speed of that spread

[Wilbyfree]

Originally Posted by bobber

RNcrps2
I just wanted to add,,that it common knowledge to us all to give us an understanding of our condition and road to recovery that when we have a flare,,it is commonly caused by many things,,food we eat,,liquid we drink,especially caffeine and sugar ect,,,,or stress,or exercise or a certain movement or hitting the affected area ,,,All of these triggers in one way or another have one thing in common,,,,Traumatizing the nerve,,either by eating ,drinking,stress,or [hitting ,movement ,excerise,,,in which you are longateing the nerve,,,resulting into a flare or spread,anytime the nerve is traumaitized,that is the outcome,,,,I personally am trying to protect the nerve with discipline of diet,theropy,stimuli[lite] and supplements to enhance nerve health,,,,,I was given some good advice lately that i incorperated in my regimen,,is a magnesium cream ,rubbed on the entrapped area and poor circulated area several times a day and in less than one week,,there is a big difference,,,,,,The bottom line is freeing up the nerve from entrapment or impingment or supplementing for the shealth and nerve damage and mild massage sometimes helps,,,My opion is that if we are in a flare or spread,it is the cause of a nerve that is being traumatized,,,and the more severe the trauma,equals,the more severe the spread and the speed of that spread

Hi Bobber,

Have you had an EMG to show exactly which nerve has been damaged? Also, I had surgery last year, I had a dislocated tendon, an impinged tendon, spurs, etc. But, I begged my doctor to please try and fix the nerve entrapment, he was against it, but as I told him, what do I have to lose. So he did attempt. However, he told me that the nerve was severely corrupted and when they get to that point, there really is not much that can be done.

Let me know, about the nerve. It was a terribly painful test that I would never do again. But the truth was in that test, it showed no motor units running with that nerve, permanent damage and the severity of it. But I still feel that it was worth a shot to repair, he had to go in and fix the tendons anyhow.

Jeanie

[bobber]

Hi Jeanie
The calcaneal nerve is one of the nerves that i have that is entraped,,I had 2 eeg's done and 2 emg 's done,,Both Drs who performed them both told me that since the entrapment is near the end of the nerve[ bottom backside of heel] where it ends,,that the test will come back normal,,both drs' Both said this before administrating the test.They implied that the entrapment had to be before the nerve ended to show up,,,,And sadly , they were right,,both tests were normal,,but both Dr's and the podiatrist DR proved the entrapment by the signature signs which included tapping on the back of the heel where the cut had healed up, and it sent tingling,shocking sensations and pain thru the foot and radiating up the leg,,Another symptom was when i would soak in a hot bath,,the back of the heel would have an electric sensation , like a 9v battery was on it,,I too ,as yourself would welcome the surgery,

[Dubious]

Originally Posted by Abasaki

I am seeing a lot on here lately posts saying that CRPS--Type 2 is worse than Type 1...

Can anyone provide me with a link or links that show this ????

Every thing that I have found shows the symptoms are the same... the only differences are the diadnostic criteria.

From Patient UK:
http://www.patient.co.uk/doctor/Comp...ome-(CRPS).htm

• CRPS I - formerly known as reflex sympathetic dystrophy (RSD), this is pain which develops in the absence of identifiable nerve injury.
• CRPS II - formerly known as causalgia (literally meaning 'hot pain') develops after injury to a major peripheral nerve.

However, the difference may be academic for patients who experience the same pain in both conditions and for whom treatment options are the same.

Similar information also found at:
RSD HOPE
http://www.rsdhope.org/Showpage.asp?...=3&PGCT_ID=545

RSDSA
http://www.rsdsa.org/2/what_is_rsd_crps/index.html

Just looking for clarification information so that I can better understand for myself and be able to have the information in hand to discuss with my doctors....

Abbie

Going from straight memory here, but that is my recollection too. Symptoms are the same, just no history of nerve injury with type I. I think I recall reading that CRPS II has a tendancy towards SMP where CRPS I has a tendancy more for SIP.

BTW, for the history buffs, you can can find on Google books an online read of the book that the civil war surgeon who discovered causalgia, can't recall his name, which is very interesting!

[Wilbyfree]

Originally Posted by bobber

Hi Jeanie
The calcaneal nerve is one of the nerves that i have that is entraped,,I had 2 eeg's done and 2 emg 's done,,Both Drs who performed them both told me that since the entrapment is near the end of the nerve[ bottom backside of heel] where it ends,,that the test will come back normal,,both drs' Both said this before administrating the test.They implied that the entrapment had to be before the nerve ended to show up,,,,And sadly , they were right,,both tests were normal,,but both Dr's and the podiatrist DR proved the entrapment by the signature signs which included tapping on the back of the heel where the cut had healed up, and it sent tingling,shocking sensations and pain thru the foot and radiating up the leg,,Another symptom was when i would soak in a hot bath,,the back of the heel would have an electric sensation , like a 9v battery was on it,,I too ,as yourself would welcome the surgery,

Okay, to me that sounds like the sural nerve. That is somewhat like the sciatic nerve, it is one that you do not want to mess with. Just a guess. Do you have any pain on the inside of your knee, and what about your calf?

Keep in mind, my doctor would have never attempted to go in and fix the tibial nerve, only by chance that I had all of these other problems did he concede that I had nothing to lose.