At a loss
 

I have taken a little time away from this forum lately, but decided to do a little catching up yesterday after returning from my PM visit. It's nice to say hi to everyone, and I wanted to make sure to wish you all a Merry Christmas.

Yesterday I saw my PM, I actually saw him this time and not his PA. We are at a point that we are running out of options. He has me on the highest dose of Gabapentin he feels comfortable putting me on, just increased my Amitriptyline to 100mg, left my Fentanyl at 50mcg/hour for now but may increase that in the next couple of months, and just increased my Percocet to 10-325 for breakput pain. I am getting no relief from any of it. He is talking about increasing my Fentanyl one more time and prescribing morphine in place of the Percocet if I still find no relief. Past that, the only suggestion he has is SCS. He knows that I do not want to do that so he is out of ideas other than he jokingly asked if I like whiskey.

Yesterday I asked if he has tried LDN with anyone. He has never heard of that being used before for CRPS, but isn't too thrilled about it for the sole purpose of having me going through detox from all of the opiates.

He spent quite a while talking with me. Of all of his previous experiences with CRPS patients, he has never seen a case as bad as mine outside of the short amount of studies he did at the Cleveland Clinic.

Now, I know he has experience with patients with CRPS but what makes me really nervous about him now is, when I saw him yesterday, he told me I am a stage III CRPS patient that is spreading so aggressively, he wouldn't be surprised if it develops into stage IV. As soon as he started talking about stages, I immediately asked myself Why is he talking about stages if he knows so much about CRPS? I didn't think that knowledgeable doctors still talk about stages. Even those that do, Stage IV? I really doubt it!

Is it time for me to find a new doctor? He seemed fairly knowledgeable when I first met him a few months ago, but if he is talking about stages and pushing an SCS, maybe it's time to start the search again. he told me himself he is running out of ideas and is depending on my research. I'm glad he is open to a patients research, but I just am not sure what to do at this point.

I hope everyone has a wonderful Christmas.

PF,

I hope you get LDN ASAP. I believe it saved me. I sound like the LDN nag, but I cannot help it, because I know it works, is non-invasive, cheap and has no down side compared to other treatments.

The only semi-pain relief I had was hydrocodone, but I did not want to take it because of the Tylenol, plus I was not allowed to take it at work when I needed it the most. No doctors would give me anything else other than neurotin, which lessened the electrical pain, but did nothing for the cold burning pain or the deep bone pain. But it wasn't just the severe pain that motivated me to get LDN anyway I possibly could, but my unruptured brain aneurysm. I felt that I had to attack CRPS so that I could have brain surgery.

Now that I can walk with a cane I have scheduled an appointment for a second opinion with a top neurosurgeon. LOL It was easy peasy to see any number of stellar neurosurgeons, but finding a good CRPS doctor to give me LDN-forget about it!

I don't know what it is like in your part of the country. But around here, there are very few doctors that are knowledgeable about CRPS, and even fewer that are willing to treat the disease. In fact, I had to do some looking for a doctor recently and I found a total of 2 of them within the entire North Side of the Metro area, where I live. If your doctor even knows anything about CRPS and has ideas on how to treat it, you may want to make sure that the one that you may get to replace this one knows at least as much. That way, you won't be going backwards instead of forward.


ERRRRRR I HATE Pain.. Silly Flare up! So frustrating sometimes.. isn't it? ERRRRRR... Ouch! This hurts so flipping badly! MY GOODNESS

Thank you Bio and Spike,

Bio - I would really like to try to see if LDN does work for me. that's the main reason that I brought up with my PM. Both his and my concern is going through the detoxification of the opiates and not having anything to help even ease the pain for the month of detox. I am certainly looking at anything that even might help at this point though.

Spike - I don't actually remember seeing what part of the country that you are in, but here in Metro Detroit, there are so many doctors treating patients with CRPS. I am not entirely sure how many of them actually know anything about it, but 2 of the big hospitals, DMC and Henry Ford, both claim they have several doctors that specialize in pain management with vast knowledge of CRPS. I am not quite sure if it is true or not, but it never hurts to try to set up a consult at the very least. I already have 6 lined up to make calls to come the beginning of the year. 2 of which I know do ketamine infusions as well as many other forms of treatment before they resort to that. I am just concerned that if I switch doctors again, is the next going to give up as quickly as the last 2?

Thank you both.
Have a wonderful Christmas season!

I would've wondered about the stages comments too. It never hurts to get a second opinion. You might also consider a visit to U of M Ann Arbor for periodic consultation with their pain department then follow up by your current doctor if you aren't finding the caliber specialist you need.

I am so sorry to read that you are having to take so many meds and still not getting enough relief. That is just heartbreaking. LDN might be great but I too have concerns about the detox. Though I was told by an MS patient on it that she takes LDN and pain meds just twelve hours apart. I can't remember which was in the morning or evening...

I want to raise the spectre of workup and forgive me if I have forgotten what you had done. I know you had ankle fusion but I can't remember if you had NCS or EMG done to tell if there was obvious nerve damage or impingement. I think there was also question of whether you still had a non-union. Did that ever fuse properly? If you don't know for sure it may be time for follow up imaging.

I also want to raise the possibility of a peripheral nerve ultrasound. Nerves do not show well on most imaging but they are highly amenable to ultrasound with the properly trained practitioner. Usually Physical Medicine Rehabilitation. The benefit of having it done is to see scar adhesion or partial transection or entrapment. Sometimes they can do something about the issue, even without surgery (see nerve hydrodissection). MY PMR does this for various nerve entrapments by scar not just in the carpal tunnel as is most common.

The test is not that expensive, is non-invasive and if nothing else gives peace of mind, especially in post-surgical and trauma situations. I personally felt relieved having my nerves looked at and getting the thumbs up on them. I actually had one area show nerve swelling and that was one of my more painful areas. (We hit that with steroid injection and it's better). They do this test at U of M and there may be someone in Detroit who does it. I know another forum member in Detroit had it done and felt the same relief. It's nice just to know nothing is amiss and if it is...it's sure nice to find it!

I am sorry if I am harping and you already had absolutely everything looked at twice already. I just know it's hard to beat CRPS if something is left untreated and I and everyone else wants you healing and feeling better.

Sending extra hugs and healing love, :hug:

I quite often have thought of U of M. After all, I was a student there. I just seem to have a little bit of an issue with family preference there. Not sure if I really want my Aunt having access to all of my procedures. She used to head the anesthesiology department. When she took a leave when my uncle was transferred to Ireland for 2 years, she had to give up that position. We don't get along all that well but I could certainly ask her advice.

I almost forgot, I am still working on the fusion. I did manage to track down a bone stimulator, but am still non-union. Oh I hate wearing that thing every day. It has to strap around the ankle for 20 minutes of pure torture. I have to do what needs to be done to heal. If I need to go through agony for 20 minutes a day for 6 months, I'll just look forward to being rid of the thing when I am done.

Thank you, and Happy Holidays

I am so glad you found a bone stimulator, but I am sure it isn't any fun at all. You keep that up though, non-unions are painful and the CRPS will be easier to beat with that out of the way. It's astounding what weight-bearing does for circulation.

On that thought....is there a hyperbaric oxygen option near you? Certain depths are supposed to work on bone and of course helping the circulation is great.
:hug:

Littlepaw,

If I remember correctly, Henry Ford Hospital, DMC and U of M all have Hyperbaric Oxygen available. I don't believe my insurance will cover even part of it. if Insurance does not cover it, it is not something that I can afford at this time. It is something that I just started looking into yesterday. Hopefully I can convince enough of my doctors to try to help with convincing Blue Cross that it is a necessary procedure. I will be making a lot of phone calls come the beginning of the year.

WOW! I admire you so very much. Your stick to it attitude and hit this disease with all that you have demeanor are such great attributes. Your a very special person. Your family has a lot to be proud of in you and how you carry your disease and fight it with dignity. You brought a smile to my face, even though my pain is way out of control right now. Thanks for the inspiration.

EDIT: GULP.. 20 minutes a day of added torture? Yipe! Can I just have a cup of hot cocoa to go please? Further, Please keep us updated on your progress in the upcoming new year!

Yes, Family ethics are very important. Relatives often decide to see what they can do for us, even without our permission sometimes. I have many medical professionals in my family. They would call it wanting a better life for me. I would call it "Hell on Earth," if they decided to get involved in my care, just because they had access to my medical records. LOLOL... my goodness. The though of that just gets me rolling in laughter. That would not be good, at all! PERIOD. Whoa!

Back when I did HBOT I had to go to a private HBOT facility, hospitals with HBOT wouldn't accept RSD patients. I don't remember why... I've never heard of insurance ever covering HBOT for CRPS alone.

It worked well for me on spread that was maybe a year old? Unfortunately, I think I waited too long for my original site and/or the reconstructive surgery I had is also a continuing factor.

hi purplefoot. i'm so sorry you are having so much trouble managing your rsd pain. i'm not a dr but if i were you i would search for another dr who knows more about rsd and didn't just read about it and it's stages online. even onine i've read that because the rsd symptoms vary so much from day to day that the stages vary too so it's really hard to say IMO what stage you're in. you can be in one stage on one day and another stage another day. either way i think you may want to find another dr.

also from what i remember my pm dr telling me, a person with rsd can go as high as 3600 mg of gabapentin (neurontin) (i take 2400 mg daily right now). and it concerns me that your dr had you cut back on your percocet. imo you don't need to detox from an opiod when you have a chronic illness that you grow a tolerance too. detoxing imo is for people who are taking these opiods to get high and are addicted to them for that reason.

it's hard to find pm drs who prescribe the proper amount of opiods needed for rsd because of all the rules and regulations used for people who are addicts. if i were you i would try to find a pm dr who can maybe prescribe something like 5/325 percocet on a daily basis as needed for pain (not just break thru pain). because rsd causes constant pain maybe taking more percocets along with more gabapentin (if you're not at the 3600mg a day limit) may help.

i have a pm dr who has prescribed gabapentin and low doses of a strong pain med for my rsd and the combination has helped manage my rsd pain a little better for almost five years now.i was taking advil too but had to stop because of my stomach problems. i hope that whatever you decide to do that you find some pain relief soon. sending warm thoughts and soft hugs your way.

p.s. there are also other things you could try before the scs like ketamine, hbot, calmare and some say accupuncture helps. but make sure you find a licensed accupuncturist who really knows what rsd is so that can be extra careful when doing the accupuncture so that your rsd doesn't spread.

imo the scs is a last resort and from what i've read it is can cause risks too like infections, leads moving, batteries dying and sometimes stops working after a few years. it is a major surgery and recovering from it is also painful at times from what i've read. but everyone is different and it ultimately has to be your decision. i would research all your options as much as you can before going for the scs. take care my friend.

Thank RSD ME,
The whole reason that I am taking Percocet for breakout pain is because I am on a Fentanyl patch 50 mcg/hour for around the clock pain. I can't quite remember if I mentioned that earlier. I think you may have misread my earlier post, my Percocet was increased to 10-325 from 7.5-325, not the other way around. If that still does not provide enough relief, he is planning on taking me off the Percocet to put me on morphine instead. I do plan on searching for another doctor come the 1st of the year.

Thank you so much for the advice.

I hope you are able to enjoy yourself on this beautiful Christmas day.

maybe increasing the percocet and/or taking it on a daily basis along with the gabapentin may help you more then the fentanly patch. i've never tried the fentanyl patch because the gabapentin along with daily pain meds help me manage my pain enough to be able to function a little each day. i'm just trying to think of ways to help but i'm not a dr so maybe i'm wrong. just because it helps me doesn't mean it will help you. either way if i were you i would find another dr for advice on what to do. a second and sometimes third opinion never hurts. i hope that whatever you do you can find relief from your pain soon. sending healing thoughts you way.

My experience with LDN
 

I just wanted to chime in and give you some insight on the LDN. I started taking it in October. I saw a post that Biobased wrote and I started to research it. One of my PM drs wouldn't prescribe it, so I asked another who did some research and then let me do it. I was not on any opiates but took the max of Tramadol each day, which I thought was pointless as i was still in significant pain. I had also stopped taking Cymbalta and Lyrica over the summer because of the horrible side effects.

The Month of November was HELL. It turns out that Tramadol was helping somewhat. I cried a lot. I missed any activity outside of work and sleep and fell into a hopeless feeling I would never get better. I emailed my dr at the beginning of the 5th week saying I couldn't take the pain anymore and couldn't wait for the LDN to work. I ended the email saying I would try to make it a few more days because I had fought for so many weeks waiting for it to work.

And it finally did. Days after I emailed the Dr I began to feel better in the morning. At first I didn't get my hopes up but after a week of feeling good in the am, I was convinced. I have now been on it about 10 weeks and continue to feel better. I take 3.0mg at night and next month would like to go up to 4.5mg and take 1/2 in the am and 1/2 at night since I feel really great in the am and then get worse after 1pm.

I am also on Oral Ketamine for breakthrough pain. I take 25 mg every 4-6 hours. This Ketamine helped save me in those moments of intense pain but it only worked for an hour at most after taking it. (I also just had a 7 day inpatient infusion that worked well)

The LDN is worth it for me. but just have a plan in place to help get you through those first dreadful weeks. Goodluck and keep us posted. hugs. :)

i think ldn is still in its trial stages for rsd but not sure. if i were you i would do your research on it before trying something new that is new. maybe it will help but the thought of going through such pain for so long waiting for it to work sounds like more then i could bear. and i would think that could aggravate the rsd more. but everyone is different and i am not a dr so i would check with several drs about this new drug. hope things get better for you soon purplefoot.

I have been working on a list of treatments that I have tried as well as many that I have not. I plan on handing this to my PM next time I see him to give him more options before completely giving up on him and moving on to yet another doctor. A lot of this list has come from all of you here, Thank You! I am still working on this, but would like to ask all of you if you know of anything more that you would add.

Here is what I have so far:

Things that I have tried that have not provided enough relief.

Prior to surgery:

Started with Tramadol
Tried a Cortizone injection – caused more pain
Moved up to Norco 5-325 then up to 10-325

Had a fusion of subtalar and tibiotalur joints, rod extends 6-8” into tibia, as well as DIP arthrodesis.

Post Surgical:

Extreme discoloration of skin – purple and blotchy
Temperature differences started, usually much colder, occasionally warmer.
Had 3 MRIs - no dye, Multiple X-Rays, and a Venous Doppler to rule out DVT
Had thermal scan showing as much as 10˚ F difference between L and R foot/ankle
Had sensory test showing intensified sensation in R foot/ankle
Toe nails and hair stopped growing on R foot/ankle
Compression Stockings 20-30 mmHg – Caused severe pain to put on, wear, and take off
Was started on Gabapentin, eases electrical sensation some, titrated up from 300 mg a day to now 600 mg T.I.D.
Was started on Amitriptyline, eases muscle spasms and works as an antidepressant, started at 25 mg, now at 100mg.
Was offered Lumbar Sympathetic Block – declined for three reasons:
• already experiencing spread to multiple areas, primarily left hand,
• Its best chance of success is within the first 3 months. I have been suffering severely with this for 8 months by the time it was offered. I believe I have been dealing with this for 4 years, (broken toe in 2011), but may be as much as 12 years, (original break in 2003)
• also, lack of success from others with the same condition by researching online
Was asked to try SCS by 2 separate doctors. Declined for two reasons: although I am considering the trial since I am running out of options
• Lack of success from others with same condition by researching online
• Surgical procedures are known to intensify the pain, and cause a potential for spread
Tried Methadone, Started out ok but faded out and gave me heart murmurs
Moved onto Fentanyl patch, started at 25 mcg/hour now up to 50 mcg/hour
Moved from Norco to Percocet 7.5-325, now at 10-325

Most of the above, not all, have provided many other individuals relief.

Things that I have read have offered relief that I have not yet tried aside from what is mentioned above, some of these I will not consider but thought I would mention anyway:

Increasing Fentanyl to as much as 100 mcg/hour
Trying morphine instead of Percocet
Increasing Gabapentin, do not know actual mximum limits, I have heard limits from 3600mg to as high as 5000 mg for short term use
Fentanyl sublingual or nasal spray
ActIq – I believe that is solely for cancer and HIV + patients so that may not be an option
Butrans in place of Fentanyl
Bisphosphonates, ie. Neridronate
Oral Zoledronate – AXS-02
Aqua Therapy
HBOT
Calmare Scrambler Therapy
Ketamine infusions inpatient or outpatient
Oral Ketamine for breakthrough pain ie. 25 mg every 4-6 hours
LDN sometimes compounded with other meds that have helped that are mentioned here
TENS unit or Quell
Mirror Therapy
Acupuncture
Kineso Tape
Baclofen
Cannabidiol oil, lotion or through ingesting/inhalation
Change in diet – Paleolithic or 4 F diet
Vit C 500-1000mg
Pain pump


These have all provided others relief by applying topically:

topical of ketoprofen, gabapentin and ketamine
I am surprised with how well topical Soma has worked.

Compounded Ketamine cream

The commercial compounding usually uses a PLO gel which is supposed to help to transport the medication more deeply.

bupivicaine/ketoprofen topical.

Some prescribe a topical mix with a high percentage of ketamine or a high percentage of DSMO – most doctors will not discuss DSMO as it can be dangerous if accidentally used incorrectly.

Lidocaine 4%

Topical clonidine 1%. Not only are you increasing circulation but as an alpha blocker it is damping down the adrenoreceptors on your inflamed nerves.

RX for a compound cream with capsaisin, marcaine, lidocaine or bupivocaine and ketamine. Sometimes the doctor will put in topical amitryptyline too in place of one of the other things or in addition to it.

magnesium lotion

Inspire,

Thank you for sharing your positive LDN experience, it is similar to mine. :D

Recently I reduced my LDN dose, because of severe stomach distress,shortly afterward agonizing pain started to return, but my stomach problems did not abate. Within 2 days of increasing LDN from 3 to 3.5 I am back on track.

Dear Alaina,

It just breaks my heart reading everything you have tried to get relief and knowing how much you have endured this past year. Your list will be a big help to your doctors. I used many of the things on it and had a lot of success with aqua therapy, mirror therapy and acupuncture but everyone's situation is different.

Thinking about you I am most struck by the challenge of finding relief from CRPS with a non-union ankle fusion or of getting a non-union to heal with CRPS.

I don't know at what point it is decided to try to do something or if that would remotely be recommended. I do know that I have read various studies saying surgery during CRPS may be indicated if it is necessary to treat the cause. Sometimes such steps are needed if an injury cannot heal as I understand may occur with some cases of non-unions.

Is the gap on the non-union getting any smaller? Is orthopedics following you closely and collaborating with PM and physical medicine? Do they think you need bone grafting/debridement? Or just time with the stimulator?

Or God forbid have they given up?

My personal opinion is that you should consider an academic medical center where a team of specialists will coordinate how best to help you. Sometimes these places can do amazing things that others don't offer or are afraid to try. You're not finished healing yet and I would avoid treatments that are end-stage when you have a legitimate, ongoing, identifiable condition which is known to cause a lot of pain and could be causing your CRPS. Don't let PM treat you like a hopeless case. They've got to get you healed first. If that means you drive to Ann Arbor do so. You can always request that your aunt not be given access to records unless you want her input. (Hospital electronic systems flag when unauthorized users access these). If it means you find a way to get to Mayo's ortho program then do that.


Aim high, search far. Don't give up. I drove three hours in two different directions to find the specialists I needed. It was and is still worth it. You are worth it. It sucks going to more doctors and telling your story for the umpteenth time but sometimes fresh eyes make all the difference.

Sending hugs and much healing love, :hug:

you're list looks great alaina. if i were you i might add that there is also a chance of infection when getting an scs. i also was told by one of my drs that the scs works best during the first two years of having rsd and is not as effective after that. as for the nerveblocks, i've had eight in the beginning but only helped a little but still may help you. everyone is different. i have been told by my pm dr that 3600mg of gabapentin is the max for rsd. never heard of 5000mg being the max. and maybe you could try a lower dose of presdnisone 5/325mg like for example several times daily as needed for pain instead of 10/325 only for breakthru pain. maybe there is a time release version that may help you more. there is also voltaren gel that my dr prescribes to me for my joint pain from my rsd. it helps me on those cold winter days but you need a prescription for it. also when i was first diagnosed i was given prednisone at (something like 10mg pills that i started at and took like 7 of those 10mg pills the first day and then slowly reduced the amount and slowly weaned off of after a few months that helped my rsd swelling go down and numbed the pain at least while i was on it. my neurologist prescribed it to me. but since it can't be taken for long term use because of side effects, i had to stop it after a few months. i can't remember the exact dosage i took but will look back at my files and see if i can find it. and there are alot of trial meds and procedures for rsd that you can look up on this forum and online that you may want to check out. i am curious about neridronate too, but my pm dr has not heard of it being used yet for rsd (i think its still in trial stage and i don't think is fda approved yet.) i know it's hard switching drs too. i loved my neurologist and she helped me in the beginning stages of rsd, but as i learned more about rsd i realized that she didn't know enough about it to help me anymore. she did'nt seem to think it spread unless all the symptoms at the initial site were there (which i have learned since then is not correct) and she thought that when physical external symptoms like swelling subside a bit that the pain also subsides. that is also not correct. and lastly she thought that maybe the meds like gabapentin and pain killers should be reduced if external symptoms were reduced which is also incorrect. my pm dr knows rsd the best and he knows that these suggestions are not correct because he has had the most experience with rsd. i also know that just because the external symptoms may subside a little does not mean the pain is going away. its actually gotten worse and has also spread without all the same symptoms i initially had. so i don't see her anymore. i stick with my pm dr and am grateful i have him to help me manage my rsd pain. i hope that you can find someone to help you too. just remember to be calm but firm about your symptoms and don't let anyone say its all in your head. some drs still try that one and it's just sad to me. and maybe show them the info you know about rsd and treatments for it so they know you know what you are talking about. (living with rsd should be enough proof that we know what we are talking about, but unfortunately some drs i've come across think that unless its written somewhere then it must be all in our head. that couldn't be farther from the truth. well i'll stop rambling now. i hope you have success with your dr and i hope i'm not annoying you with my suggestions. i am not a dr so please make sure to check with them before you try anything and know that i am praying for you to feel better soon.:hug:

RSD ME,

Thank you! I appreciate any advice I can get from everybody, especially those who have been dealing with CRPS for the length of time that you have. There is no way that you are annoying me.

I have completely forgot the use of steroids such as prednisone for CRPS. Thank you! I will certainly add that to the list.

LittlePaw,

I was in a bit of a hurry last night when I read through the replies here, as I was celebrating our anniversary. I wanted to give my husband all of my attention and love that he very much deserves. I wasn't able to do much for him this year, but I wanted to make sure to make him feel special and appreciated. As a result, I missed your message.

I am still seeing my Orthopedic surgeon. He is a caring doctor and does not want to release me from his care until the bones have completely healed. The non-union is showing a small gap in the posterior section of one of the joints, I can't recall which one to be honest, but that does not concern my orthopedic surgeon. Most of the non-union is only visible through the MRI, and does not show up on the X-rays. It is the MRI that shows that the bone has fused only about 50%. That is what concerns him. He has discussed the possibility of having to perform surgery again if the bone stimulator does not take care of things. I am not sure what his plan was, but we are all hopeful that it will not come to the point of having to do another surgery.

I am open to the idea of getting some fresh eyes to help me. I just really hate the idea of switching doctors again. It is so hard to figure out if the next one is going to be any more knowledgeable than the last. I did not know that I could request that certain doctors be restricted from accessing my records.

As always, thank you for your help and advice. It is always appreciated.

Enjoying your life in the world and focusing on those you love are the best reasons to miss a message! Congratulations on your anniversary.

I am glad your ortho is sticking with you.

I had another thought on your fusion... Has any consideration been given to biphosphinates? You mentioned them and I was thinking about the difficulty of laying new bone both with CRPS and non-weightbearing. These medications inhibit osteoclasts (bone eaters) and encourage osteoblasts (bone layers). I have no idea if something like that might help but since they do with osteopenia and osteporosis it might be an idea to try. Oral alendronate has shown some promise with CRPS in studies and should be fairly reasonable cost wise.

You can certainly ask medical records at U of M about restricted access. At the hospital system I worked in this was not a problem.

:hug:

Hey Alaina,

I thought of you last night as I was looking at info about metatarsal fractures. One of the ortho pages I looked at (sorry I don't know which one) said that in cases of non-union, 66% of patients had low levels of Vit D.

Have you had your D checked? Do you supplement? I don't remember if you ever mentioned this. D is so commonly low. Even mine was despite taking a multivitamin and living in sunny Texas.

:hug:

That has been a lifelong struggle for me. My Vit D levels have been low since I was young. I do supplement along with calcium supplements as well. Thank you for the thought.

Alaina,
Just read on Zinna's wonderful thread about how much you continue to suffer. I am so sorry that you are hurting so badly. I feel so sad for you. I respect your courage to keep fighting even when all that you have tried is not working. It is a roller coaster ride between hope and despair with each new treatment.
My injury is quite different from yours (not as severe) and my Crps is not as severe either, but I thought I'd share what is working for me. I had a 3 day ketamine/steroid/magnesium infusion at the first of October. This made a difference but I don't think this is the best ketamine protocol (it was all that was available near my area). The swelling has stayed down throughout most of my foot since this and I have fewer flares. Started LDN at the end of October and this has helped greatly with the burning. PT of couse has helped. To begin a bisphosphonate this week. Neridronate is not yet available in this country. There are several trials going on now. I figure any bisphosphonate is better than none though. I also have oral ketamine for pain. I dissolve it under my tongue and it does help short term (an hour or two.) I use it sparingly. I also take vit. D,C, Fish Oil and magnesium.
You have a great list going. Just thought I would chime in on whats working for me. I'm by no means back to normal, but I am at least more functional and in less pain. I know this is a blessing many would give anything for. I still so miss the old me though.
You are in my thoughts~mac