I've been going through a veritable hell with my insurance lately. It's August and I'm really close to my out of pocket max for the year so I'm trying to cram as much as I can in before December.

I went through a review process for Calmare therapy. It was denied based on the fact that out of the three providers in Utah, the only one that I could reasonably get the therapy from (and therefore is the one who filled out the review papers) is a chiropractor and not an actual doctor. My insurance doesn't want to pay for it because of that. Fortunately they do let me have as many reviews as I want, and said they may approve it based on additional evidence. The office offers a free consult with an initial session to assess whether it's worth perusing or not, so I'm going to do that to show it works, then jam the review full of research info.

But that's not the exciting news. The exciting news is that I just got off the phone and found out my insurance will, without question, pay for ketamine. A doctor up in Salt Lake City does it which is only 45 minutes away. It's 3-5 days, depending so I'm having my husband get FMLA paperwork so he can file for it and get the time off without issues or risk to his job to drive me back and forth for a week. I'm so excited that I have at least one option that isn't letting a doctor cut me open and stuff a zapper in me. And I'm hoping that this will help me need less pain drugs too.

Frustrating though that they'll pay for this, but not the $1500 for Calmare. What the heck is wrong with a company when they'll pay God knows how many thousands of dollars for a dangerous drug infusion but won't pay a fraction of that for a completely non-invasive, non-dangerous therapy. Morons.

I'm not going to reignite the calmare debate because its just not worth it. There are few things on this board in the 6 years I have been reading and posting here which have caused so much argument. I will try and explain why you are likely to have lots of problems getting any insurer to fund this "therapy".

The FDA formal approval (which is the only reason it can be legally used or sold as a medical device in the USA) that was given for this "therapy" is for a simple TENS machine. The FDA approval it has is only granted based on the fact that the manufacturer has stated that it is the same as existing, listed models of TENS machines already on the market. That is how they get round having to do years worth of clinical trials which are necessary if a manufacturer is trying to licence a genuinely novel medical device. There documents are all filed and publicly available so you can go to the FDA database and check them out for yourself if you are interested. People will argue endlessly that it's not a TENS machine but the facts, as filed with the FDA by the inventor/manufacturer themselves, are irrefutable.

There is extremely poor evidence that it works. People who believe in it will point you to all sorts of articles but none of these are the properly conducted, peer reviewed, published clinical trials demonstrating any efficacy. There are also issues of bias or financial interest attached to most if not all of these. Properly conducted, robust, published clinical trials patients are the are the kind of evidence that doctors and medical insurers look for to determine efficacy, safety and value for (their) money. You will see anecdotal stories from people who think Calmare cured or helped them but anecdotal stories are not the same as an objective, reproducible, evidence base.

There are now, however, a number of published, peer reviewed clinical trials which have been carried out using ketamine in CRPS patients. Certain protocols using ketamine are no longer regarded as experimental in mainland Europe where it is now regarded as a standard form of treatment for those CRPS patients who don't sufficiently respond to other treatments. The largest issue with the clinical trials to date is that it's not possible to "blind" a ketamine trial because it is always obvious whether a patient is receiving ketamine or a placebo.

Ketamine has the additional advantage that it is a drug that has been used in humans and animals for decades utilising an intravenous delivery system so its actions and safety profile is already extremely well known. It is a cheap drug and whilst patients need to be monitored whilst it is delivered, it is relatively uncomplicated, especially at lower doses so the potential risks and claims that insurers need to factor in are limited. In the last 6 years US insurers have increasingly been prepared to fund various protocols involving ketamine for CRPS patients so it has shifted from being regarded as purely experimental.

Well ,is real frustrating when we put our expectations in something and night not be what we expected after all.
I tried tens units and works well for me,problem is, I have bone to bone rubbing pain and tens units don't reach bone pain but nerve,muscle or tendons , instead I was suggested because of tens unit worked well on controlling my rsd nerve pains, scs which I'm still on it with after a second surgery to repositioned the device works well,but like I mentioned before,I never knew until his year ,my bone to bone pain will never be control with any electrical block ,sad , I was expecting that and instead had two surgeries for same reason and same result,no bone pain relief .
When I heard about calmare I was thinking that was similar to tens units and won't work in my case,still wondering , could the ketamine cover my kind of pain,anyone here tried for bone pain can give me a hand please.
I'm glad Adelaide you insurance will cover ketamine, I heard is giving great results, in my case I always seems I found out about not controlling bone pain keep questioning others and so far no one had reply me if is a yes or a no.
Does ketamine cover bone pain as well? If anyone know please help .
Adelaide ,I wish your further treatment works well for you and let me know how that goes, we are all different and we can react also different ways,but best wishes in anything that will take the pain away.
Neurochic a question if you don't mind, do you believe any treatment outer really work on rsd or is mostly temporary results? I sense you know a lots about this so you might know some real useful answers for people like me,still struggle with treatments and the eternal battle of bone to bone rubbing on rsd affected limb,no possible surgery to fuse the bones is recommended and what was done ,wasn't what I expected ,helped me to walk again ,my scs I mean but so far the trigger point of pain is always there , any advise,thanks.jesika

I understand what you're saying about Calmare, but frankly I'm also not interested in a debate. My options right now are:
1. drug me up so much that I can't have a normal life.
2. drug me only enough that I can attempt a normal life while living every moment in agonizing pain wondering "what if" about alternative treatments.
3. Calmare
4. ketamine
5. SCS or pain pump (and frankly I'm not interested in a pain pump)

I view SCS as a last alternative. I want to explore every possible other option before I let some doctor slice a hole in me and start implanting things in me. Some people say they have had success with Calmare. Some is more than none. And it's still cheaper for my portion of the payment than the payment than SCS.

There isn't a lot of "scientific" evidence for essential oils and how they can help either. And I thought that the idea they could help was a lot of wacky hippie nonsense. Until to get a friend off my back about it I let her give it a shot and they actually helped. It wasn't some placebo effect because for that to happen you have to believe in it, and I honestly thought it was stupid.

Maybe Calmare won't work. Maybe it would. I don't know. What I do know is that it is noninvasive and not particularly expensive compared to other treatments. The only reason my insurance is denying it is because of who would be administering the treatment, not because of what the treatment is, and they said that I may be able to still get it approved with enough supporting evidence. I'm not interested in some FDA paperwork that says it's a bunch of BS, I'm interested in whatever keeps me from going under the knife. At any rate, since the ketamine is approved, if it works it could be a very long time until I need to explore Calmare again and push for approval.

Wow. I didn't expect you to have a real go at me. I'm sorry I wasted my limited time and energy responding to your post when you are clearly so keen to vent your frustrations with your healthcare situations on someone who isn't responsible for your CRPS or your insurers position.

I won't bother to post again since I also suffer every day with CRPS and have done for 7 years. I don't need your frustration directed at me when I'm not responsible for your insurers position.

I'm sorry you feel I was venting my frustration with my insurance company or this disease on you. I wasn't. After today and finally finding out I can do something that doesn't involve slicing me open I'm not even the slightest bit frustrated with my insurance company, merely confused about why they're so keen to spend a ton of money and so reluctant to spend so little.

My frustration, if that's what you want to call it (I'm not sure what else to call it really, although I don't feel that's really the right word) is with the idea that someone would tell me that pursuing the therapy is pointless because of how it got FDA approval. You said you didn't want to reignite the debate, then went ahead and stated all the reasons you felt were valid for reigniting the debate. We're all free to pursue the treatments we desire, and while I appreciate feedback from people who have undergone this therapy (whether positive or negative), I don't really see how your feedback was helpful. I don't want to debate it. I intend to pursue it before being sliced open because every time we undergo any type of surgery it risks a spread of our disease. No matter how quacky it may be, it's a better alternative than surgery imo.

A quick intervention here to remind members that where we understand differing opinions on things, and are fine with open discussion and even disagreement, that must always follow our guidelines which direct members to always post respectfully to one another and never in ways that could be "flaming" and so ignite personal negative disputes.

So I am going to request this thread please not become a back and forth posting *at* each other, but return to the purpose for which the OP started it.

Members here are free to discuss *any* treatment they may be interested in, just as others are free to mention their own opinions about those treatments. Neither view should elicit a personal negative commentary about the other member.

Thanks

Personally I believe that the "placebo effect" contributes to the overall outcome of any procedure/treatment/drug etc.,

My advice has always been to go forward with treatment if: You believe it will work for you. You fully understand the risks vs. benefits. You and your doctor agree that it will help you achieve your goals, whatever they might be. You understand that even if it improves your function now, that over time, it may not be as effective as it was in the beginning.

Remember this is likely a life long battle, one that is ever changing - sometimes it will be one step ahead of you and sometimes you will be one step ahead of it.

If you don't believe in a treatment protocol or recommendation it won't likely work.

Much gets lost in communication on these boards.

As on outside observer, I think Neurochic has a highly analytical mind and a wealth of experience, plus many years experience here, and was trying to help. So she took the time to make some thoughtful comments, but feels blindsided by the negative reaction and wonders why she made the effort at all.

I also get where Adalaide is coming from. She's excited about making some headway and shared it in a post, and because the first response (however well-intentioned) was highly cautionary towards one of the modalities mentioned, it automatically feels like a parade being crapped on.

I learn a lot from both of you so please don't stop posting your experiences and sharing your views. I was here for a long time before I joined and this place is a treasure trove of information.

We never know who is reading. Several people who are no longer incarnate passed away before I had ever even heard of RSD, but their sharing literally saved me years later. On a quantum level - the posts we make here echo in time... expanding ripples making impacts that we aren't even aware of.

Adelaide , I truly understand your frustration, you are dealing with insurance and trap in budget instead on benefits for a relief.
My wc battle is almost same way as you are battling ,not approving treatments like ketamine and I feel ketamine is my last chance.
Honestly scs is so hard to handle and real frustrating when you expect one result and discover after two surgeries ,want actually cover my bone pain,now I'm relief in some part of nerve pain but rsd spreading and scs not covering all the areas a second unit is been recommended ,I wish I can have the freedom of choose what I want to try like the way you want as well, I got lay off and have no insurance ,depends only on wc, so only thing I can tell you try what you feel is good for you, sure you will feel you are trying the best way to get better.
I know many of our options are only medications ,nerve block, pt ,I felt all that ,tens units worked that's why i was thinking calmare was similar and might be better ,my dr never mentioned calmare or ketamine, went directly to scs, it was the right treatment but I wish I had something else before and try all the less invasive treatment before scs, scs is been so hard for me,not many people react same way to all the treatments, go ahead and try the best you can get,is your battle and we all battle pain in different ways.
Wish you the best ,please let me know about ketamine ,I'm wiling to even ask for loan and try it , I also want to go back to at least a little bit normal days and be able to work.
Best wishes and gentle hugs, Jesika .