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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   The Call (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/230628-call.html)

-Spike- 01-05-2016 01:44 AM
Quote:
Originally Posted by Always_Believe (Post 1191524)
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. :D

Always_Believe 01-05-2016 02:09 AM
Quote:
Originally Posted by -Spike- (Post 1191528)
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. :D
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.

-Spike- 01-05-2016 06:15 AM
Quote:
Originally Posted by Always_Believe (Post 1191529)
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.

Always_Believe 01-05-2016 09:50 AM
Quote:
Originally Posted by -Spike- (Post 1191536)
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.

-Spike- 01-05-2016 10:16 AM
Quote:
Originally Posted by Always_Believe (Post 1191544)
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!

Always_Believe 01-05-2016 10:22 AM
Quote:
Originally Posted by -Spike- (Post 1191549)
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.

Fiery1 01-05-2016 11:12 AM
Are you hoping they customize therapy based on RSD?
 
ARE YOU HOPING that RIC customizes your therapy based specifically on RSD?


Quote:
Originally Posted by Always_Believe (Post 1191364)
As I figure the last session of the pain program through RIC (Rehab Institute of Chicago) has recently completed, I placed a call to see where I am on the wait list and when the next session starts.

Please cross your fingers, say a prayer, throw salt, send good thoughts...whatever you do for luck/miracles/etc. The answer will guide my next steps and the direction I will take for the future.

Thank you

Always_Believe 01-05-2016 02:35 PM
Quote:
Originally Posted by Fiery1 (Post 1191558)
ARE YOU HOPING that RIC customizes your therapy based specifically on RSD?
To be honest...at this point I have given up on RIC. In my train of thinking, no doctor/company/program that concentrates on pain management allows a patient to be in 6-9 pain 24/7 for 6 months.

Working with insurance to find another PM and most likely another PCP. I'm not looking for miracles or ultra specialization, I'm looking for someone to look at my functional decrease directly related to pain and attempt something more than "here's a new pill, try it for a few months" and when it doesn't work that's all they try. My function has gone from 60% 15 months ago to about 10-15% today.

Willing to go through whatever motions the insurance/doctor requires but I will not accept my healthcare team throwing their hands in the air and walking away when there are still options to try.

Littlepaw 01-05-2016 04:22 PM
There you go! You keep that fighting spirit. :mf_swordfight:

I know it gets tedious looking for a doctor but if the ones you have aren't helping then move on. The degree of function loss should be setting off alarms not apathy. And pain should be treated not accepted if possible. Definitely demand more from your doctors.

It may be worth looking at a rehab outpatient or inpatient program. The admissions people could let you know. It's their job to determine if patients are a good fit for their program. I am really surprised your wait has been so long on the other program you were on the list for. Ugh.

I think checking into the NS at Northwestern is a good idea too. It's just information and the Peripheral Nerve specialists like mine have a different approach and even different diagnostics.

Remember my mantra to 'start low, go slow'. If you start at two minutes on the bike and build to five that's just fine.

I :heartthrob: you too.

Always_Believe 01-05-2016 05:45 PM
Quote:
Originally Posted by Littlepaw (Post 1191603)
There you go! You keep that fighting spirit. :mf_swordfight:

I know it gets tedious looking for a doctor but if the ones you have aren't helping then move on. The degree of function loss should be setting off alarms not apathy. And pain should be treated not accepted if possible. Definitely demand more from your doctors.

It may be worth looking at a rehab outpatient or inpatient program. The admissions people could let you know. It's their job to determine if patients are a good fit for their program. I am really surprised your wait has been so long on the other program you were on the list for. Ugh.

I think checking into the NS at Northwestern is a good idea too. It's just information and the Peripheral Nerve specialists like mine have a different approach and even different diagnostics.

Remember my mantra to 'start low, go slow'. If you start at two minutes on the bike and build to five that's just fine.

I :heartthrob: you too.
To be honest, if my daughter wasn't willing/able to help me financially over this hurdle, selling/moving would be my only option and I wouldn't bother wasting time finding new docs.

As luck would (maybe) have it, one of the very local pain clinics I contacted a year ago, is now accepting my insurance and new patients. I spoke with staff there at length this afternoon. The problem (or solution) is that I need a referral from a PCP in their health system (my current PCP is not).

Conversation with my case manager got me to re-examine the role of the PCP with chronic illness. I guess I never pieced it together for myself but reflecting back on my son, it makes absolute sense. I don't care that my PCP doesn't prescribe pain medication in the big picture but, in the small print she is only the referral queen. She has not handled any real issue for me at all. In fact, what she attempted failed miserably (round 3 of gaba...wouldn't listen when I was telling her it wasn't helping, back tracked on what she proposed at the office visits, etc).

I'm angry. I'm angry that my lifelong dream is now not a possibility because of delays in my treatment. I'm angry that I am dependent on someone else for nearly everything now. I'm angry that my daughter has to use some of her trust fund to support me because my function has decreased to the point of not even being able to work as a receptionist. I'm angry that I have not been heard or listened to. I'm angry that I blindly doled out faith/trust only to have that not reciprocated and smashed.

With that anger, I am trying to find strength. I'm trying to think outside the box. I'm holding on for dear life.

Thank you for being here for me :heartthrob:


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