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: