CRPS

Hi Jimmy, and welcome to Healing Well. How are you feeling today? Are you making any progress since you posted here in March?

It took me quite some time to reach your website and then read
about your condition. I had never heard of Chronic Regional Pain
Syndrome [ CRPS ] until I read the first pages of your blog, but I
did a net search for CRPS and learned a bit about it.

I typed the full name of your condition into the search box at the
top of every page or thread in Healing Well and found that some
members of HW ( Healing Well ) have CRPS too. I think you may
possibly benefit from HW if you respond to this reply by explaining
to other members of the Chronic Pain section of HW about your
condition. I would advise you to read the rules of participation at
HW and then start telling us members about your situation.

Your post takes people to a site where all dialog takes place outside of Healing Well, and as such it does not engage the normal
give and take of advise and experience that is shared here at HW.

In short, I ask that you take a few moments and introduce yourself to Healing Well members and give all of us some insight
into your life with CRPS. You may very well be surprised at how helpful the Healing Well system works, and you will stand a good
chance of creating a dialog with others at HW who have CRPS. You
may learn quite a bit of helpful information while at the same time
that you are possibly helping others.

Joining Healing Well was a very good decision for me. Why don't
you give it a try?

Sending best regards,
Derwood.

Hi Jim, I am glad to read that you have found something that helps you distract yourself from your situation. Any time someone has a chronic condition distraction can go a long ways. CRPS is a difficult condition for sure.

Whenever you feel like updating your post here, all you have to do is type in your username & it will bring you to this post. That way you can keep everything in one thread.

Take care.

Jim, I am much older than you. I remember when drs here in my state or anywhere for that matter & they were trying to find treatments to help. At that time & for many years it was not considered by the AMA & insurance would not pay for any treatment. Back then it was called RSD & this was the early 80's. Our clients would end up with it after surgery to a limb, sustain an injury or trauma to a limb or a crush type injury. I worked in the legal field & saw first hand from our clients, drs & insurance.

How is your CRPS being treated? Treatment has come a long way since those days & it must be tailored to the individual. Take care.

One of our members here called Skeye is doing Ketamine infusions for CRPS & she has found it to be beneficial compared to everything else she has tried. It would certainly be worth giving it a try if your insurance will cover it. Perhaps your dr can push for it. What body part is afflicted?

Take care.

Hi Jimmy,

Like Susie said, I also have CRPS and I have been doing ketamine infusions for going on 2 years now. It took me almost 10 years to get diagnosed, as I have an atypical presentation (my eye and face are affected, not one of my limbs), but the ketamine infusions, along with low dose naltrexone, and intranasal ketamine for breakthrough pain, has been life changing for me.

I was on so many medications before, including massive doses of opioids, but nothing helped, and the side effects only made things worse. I had to take multiple medical leaves from school because of the severe pain, depression, and fatigue. And I was on my second year-long leave, and pretty much non-functional, with little to no quality of life when I was finally referred to my current doctor, a CRPS specialist, and was finally diagnosed. Now I have been back in school full-time for the last year and a half (with the exception of the couple weeks I have to take off for my infusions every few months), my depression has completely resolved, my fatigue is thousands of times better, and my pain is decently controlled most days. Now, most days I can actually function like a semi-normal human being!

Insurance coverage definitely can be an issue, though, and may be something that you want to look into beforehand. Ketamine is being used off-label for the treatment of CRPS/pain, so it is considered experimental, which means that insurances don't want to cover it. My own insurance sometimes covers my treatments and sometimes doesn't (it seems entirely random), and I just lost an external appeal over several infusions that they denied due to them being "experimental." It is very frustrating, because all of the external reviewers basically said "this person is an excellent candidate for ketamine infusions, and we have no doubt that the infusions are helping her greatly, but because there is a lack of data on the efficacy of these infusions in people in general, we're still siding with the insurance company and saying that they don't have to cover them." But apparently not everyone has issues with insurance coverage -- just us "lucky" few.

Anyways, definitely something to look into. And I'm happy to answer any questions you might have about the infusions, etc. Ketamine certainly isn't the answer for everyone, and it's not without it's own problems and risks, but it definitely has made a big difference in the lives of many CRPS patients, including myself.

Skeye

Post Edited (skeye) : 3/29/2017 5:42:05 PM (GMT-6)

Yeah, I also have a neurostimulator (although my leads are in my face, not my spinal cord). It was implanted 7 years ago. It helped me somewhat for a while (at the time, more than any medication did), but over time it's efficacy has faded, and now I hardly use it any more because it just doesn't help. I don't know how common it is for the stimulators to lose efficacy, but for me, I think it is a combination of 1) my battery is nearing the end of it's lifespan, and so it isn't as strong as it used to be, and 2) I think my body has just gotten used to the stimulation over time, and learned to overcome it.

I also had issues with insurance coverage with the stimulator (although my case is a bit unique, since it is in my face, and so it was also considered experimental). I finally won my appeal and got insurance to pay for the implant. However, what no one told me prior to having the implant put in, was that every time I would have my stimulator checked or adjusted (which you are supposed to have done every 6 - 12 months, and even more frequently at first), I'd be charged several thousand dollars, and I'd had to fight for insurance coverage every time (hence why I haven't had my stimulator checked in a year or two now, I just got tired of dealing with it). So if you do go the stimulator route, you may want to talk to the reps from whatever company your doctor uses about additional costs like that ahead of time. I have heard of some companies that don't charge anything for maintenance (which seems like the right thing to do to me), but unfortunately, my company, Medtronics, charges big bucks every time. So just beware of that!

I have CRPS that started in my left foot, 9 months later it is in my right foot. Have had LSB and they give me some short term relief. Take gabapentin, tizanidine and occasional ibuprofen. Pain has increased and now using a cane. I was a pain management nurse, so I know what's coming.