Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-05-2016, 01:44 AM #1
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Originally Posted by Always_Believe View Post
True enough. My docs can't even decide if it's CRPS or PN or axonopathy. Bottom line is I have 2 permanently damaged nerves and this ongoing knee thing. While I understand the general basis of CRPS, there are relatively few studies that I can find on amputation in CRPS type 2. My logical thought tells me that while my pain/symptoms align with CRPS, it is a direct result of nerve damage. Removing the nerve that is damaged (misfiring) seems then to be a viable solution. I am ok with functioning at a 4-5. I have very limited function at a 6-7 and am toast at an 8 or higher. I wake at a 3-4. Return from the potty palace a 6 on a good day. I haven't had enough good days lately to remember the 6. I am willing to explore the amputation option simply because I believe it is an option still out there to improve my function, my ability to walk/work/cook/clean/shower
Ahhhh, so you are not really convinced as to the complete picture of what all you have going on. I so totally get that! My whole pain battle began with Morton's Neuroma which was masking my CRPS beneath it. So, I actually had two separate things going on at the same time in both of my feet. I don't know if you are familiar with Morton's Neuroma or not. It is a matter of a single nerve being crushed by two bones in the foot. They cure the Neuroma by simply removing the nerve from the foot surgically. The only problem with mine was, regardless of the fact that the nerve was removed, the CRPS stayed and has been with me ever since.

So, that leads me to a question. When you say Amputation, do you mean, amputate the nerve and leave the limb? Please educate me.
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Old 01-05-2016, 02:09 AM #2
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Ahhhh, so you are not really convinced as to the complete picture of what all you have going on. I so totally get that! My whole pain battle began with Morton's Neuroma which was masking my CRPS beneath it. So, I actually had two separate things going on at the same time in both of my feet. I don't know if you are familiar with Morton's Neuroma or not. It is a matter of a single nerve being crushed by two bones in the foot. They cure the Neuroma by simply removing the nerve from the foot surgically. The only problem with mine was, regardless of the fact that the nerve was removed, the CRPS stayed and has been with me ever since.

So, that leads me to a question. When you say Amputation, do you mean, amputate the nerve and leave the limb? Please educate me.
The only thing I know for certain is the 1st emg/ncs showed damage to my peroneal nerve; the 2nd showed damage to my peroneal and tibial nerves.

I know that I have the temperature/color changes, swelling, burning cold, shooting knife pain. As well as muscle spasms from my knee down. I've had my PCP term it RSD, my ortho call it "this RSD you speak of", neuro term it CRPS, PM tell me it's not CRPS because I can wear a sock and see peripheral neuropathy listed as a diagnosis at my latest pain clinic.

So do I feel 100% confident it is CRPS, no. Do I feel confident that there is no neurosurgical option, no. I have lost faith in the medical field I previously dedicated my life to. I have had 8 specialists in the past year and I have only gained 3 more diagnoses and 5 more meds that I can't tolerate/did nothing and 1 medication I will permanently have to take. Cutting off a leg seems like a (pardon the pun) walk in the park. If removing the nerve would be an option, I would probably opt for that route but I don't believe there is a doctor out there any more that has an interest in patient care and therefore neither above/below knee amputation or nerve excision are going to happen. I fear I may need to move out of the country to find adequate care. I will however, attempt the few leads I have gotten first.

Tomorrow I am heading to the basement to go through the boxes still left unpacked from Aug 2014 to sell/donate/re-pack. I will probably try to get my son to put the recumbent bike together when he comes this weekend so I can theraputize myself - regardless of whether or not I can get up off the floor afterwards.
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Old 01-05-2016, 06:15 AM #3
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Originally Posted by Always_Believe View Post
The only thing I know for certain is the 1st emg/ncs showed damage to my peroneal nerve; the 2nd showed damage to my peroneal and tibial nerves.

I know that I have the temperature/color changes, swelling, burning cold, shooting knife pain. As well as muscle spasms from my knee down. I've had my PCP term it RSD, my ortho call it "this RSD you speak of", neuro term it CRPS, PM tell me it's not CRPS because I can wear a sock and see peripheral neuropathy listed as a diagnosis at my latest pain clinic.

So do I feel 100% confident it is CRPS, no. Do I feel confident that there is no neurosurgical option, no. I have lost faith in the medical field I previously dedicated my life to. I have had 8 specialists in the past year and I have only gained 3 more diagnoses and 5 more meds that I can't tolerate/did nothing and 1 medication I will permanently have to take. Cutting off a leg seems like a (pardon the pun) walk in the park. If removing the nerve would be an option, I would probably opt for that route but I don't believe there is a doctor out there any more that has an interest in patient care and therefore neither above/below knee amputation or nerve excision are going to happen. I fear I may need to move out of the country to find adequate care. I will however, attempt the few leads I have gotten first.

Tomorrow I am heading to the basement to go through the boxes still left unpacked from Aug 2014 to sell/donate/re-pack. I will probably try to get my son to put the recumbent bike together when he comes this weekend so I can theraputize myself - regardless of whether or not I can get up off the floor afterwards.
Wow, that must be so hard to not be able to take any meds, due to a lack of tolerance. I can definitely relate to that to a degree. There is a whole list of medications that helped me, yet the side effects were so harsh that I simply could not take them. It took me a very long time to sort through all of the meds that we tried in order to find the few that I can take without too many harsh side effects.

Question: Have you ever tried Voltaren Gel? It is a topical gel and is very good at reducing pain for me. There is also a Ketamine gel mix that works wonders for many people too. Maybe those would work, since they are not ingested.
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Old 01-05-2016, 09:50 AM #4
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Wow, that must be so hard to not be able to take any meds, due to a lack of tolerance. I can definitely relate to that to a degree. There is a whole list of medications that helped me, yet the side effects were so harsh that I simply could not take them. It took me a very long time to sort through all of the meds that we tried in order to find the few that I can take without too many harsh side effects.

Question: Have you ever tried Voltaren Gel? It is a topical gel and is very good at reducing pain for me. There is also a Ketamine gel mix that works wonders for many people too. Maybe those would work, since they are not ingested.
Most of the meds are due to ineffectiveness. I've asked my docs for compounding creams, muscle relaxers, anything. Gaba didn't work & caused 40 pound weight gain; Lyrica is not covered; meloxicam caused mouth sores; amitriptyline/cymbalta not effective; ibuprofen ate my esophagus. What has worked even on a moderate level, they won't prescribe. I've had arthroscopy, steroid injections (knee), euflexxa injections (knee). I don't really want to do the LSB's more because I have a problem with how that was all handled but I am willing to try anything. Just can't get any docs to play along with the insurance.
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Old 01-05-2016, 10:16 AM #5
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Originally Posted by Always_Believe View Post
Most of the meds are due to ineffectiveness. I've asked my docs for compounding creams, muscle relaxers, anything. Gaba didn't work & caused 40 pound weight gain; Lyrica is not covered; meloxicam caused mouth sores; amitriptyline/cymbalta not effective; ibuprofen ate my esophagus. What has worked even on a moderate level, they won't prescribe. I've had arthroscopy, steroid injections (knee), euflexxa injections (knee). I don't really want to do the LSB's more because I have a problem with how that was all handled but I am willing to try anything. Just can't get any docs to play along with the insurance.
Errrrrr, Insurance!
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Old 01-05-2016, 10:22 AM #6
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Errrrrr, Insurance!
At the risk of sounding like a bigger whinner, I'm not sure I am wanting to attempt another medication with "weight gain" as a common side effect. Seeing as this is a weight bearing joint/limb I cannot see another 10 pounds (or more) being a good thing. I gained 18 pounds in 2 weeks on my last gaba run.
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