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!

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!

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 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,

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