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.

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,

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.

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.

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.