I am still learning about RSD, since this is the first time I have even heard of it let alone known anyone with it, I understand there is one that is sensitive to cold & the other to heat, my hubby has the one that is sensitive to heat, even a lukewarm shower is enough to trigger an episode. So in part yes sensitivity to anything warm, be is water, or heat in general. He can't drink warm or hot coffee due to it bringing on an episode, spicy food. He does better on cold days & is an excruciating amount of pain on hot days, when the weather is bad so is his pain level. At times his feet & sometimes his hands as so swollen they feel like they are about to burst open, but a great deal of the time since we got the machine his feet don't swell up & look normal, yet the pain persists. He doesn't understand since we have read that there should only be a one to two degrees difference in normal body temperatures but yet for the most part he has little or no pain when the temperatures are 21c-71f or below any higher than that he suffers to the point where he wants to die rather than live like this.
No there is no doctor that is able or willing I don't know which, as I said he was told by someone else on another forum site that as he wasn't a patient of this Dr Rhodes guy he can't be helped.

Obviously the STS machine was designed to be used by Dr Rhodes & his team, the guy who we purchased it from only has limited knowledge of it's use, he told my hubby all he could but it's not the machine we have the problem with it's knowing which protocol he needs to use for his feet as that's where most of his pain is centred, if as we have heard that when a protocol stops working you then have to try another, what we don't understand is what protocols are they, are they in the book that comes with the machine or does this Dr Rhodes guy keep the answers close to his chest. If anyone has used this thing for RSD of the feet & would be willing to help it would be much appreciated. Hubby is at the end of his rope as the pain is not easing any, & I have no way of helping the man who means everything to me. Today he has been in so much pain that he has taken his meds & nothing is working he hasn't used the STS in a few weeks due to the pain he is in right now, his chest is hurting so much, his arms are becoming numb due to the body trying to protect the brain & vital organs so it's the bodies way of keeping the vital organs alive, uncontrolled diabetes due to the RSD & anxiety attacks that he feels there are those who can help but won't or can't is the story he keeps getting told.

As far as I am aware & I only know what I have read when I stumbled across when searching for any information regarding the STS machine but it seems the Dr's lawyers are sending letters to those they feel are saying anything that may adversely effect the opinions of others who may have turned to him for help be it from a bad personal experience or those that see what he is offering as false hope. I don't really know but that's the opinion I got.

If a Dr. is selling a product that is suppose to help people to treat their problem then he must supply written directions for his product so everyone that buys this product know how to use it correctly. If this Dr. does not do this than he has no right to strong arm these people with his lawyer saying that you cannot say anything bad about his product. If it is true as to what you are saying about his machine not working right for you then all he can do is try to sue you but I would doubt that due to how much it would cost him. You read on here where SCS work for some and not for others. Are the SCS companies threatening people that they will sue you because you don't agree that it did not work on you.

Has this been tested by the the right government department to back up what this Dr. is claiming as well as other Drs. testing for several years.

What I can tell from what meekobindi has wrote is this Dr. is selling some type of machine for rsd/crps patients without any instructions on how to use it. If this is the case then he cannot tell anyone not to write how well it really worked for them. Buyers beware when spending $425.00 on something that is not truly tested by other Drs. Just because this Dr. is using this on his patients for treatment does not mean that it works.

Sounds like a modern day snake oil sales person.

This doctor should be sued. For not being ethical. First I have a problem with doctors selling products. Rsd and our pain is not a retail service but a serious medical condition. Is this Dr R a salesman or doctor? Then to sell it to you without taking you on as a patient is not ok. Then to talk about law suits when everyone should be open to giving back feedback both negative and positive is insane. I would think there is some medical board one could file a complaint
With RSD it is important to keep stress down. Which is like impossible but in ways you can anyhow. This just adds stress. Have you looked at other options for pain relief? Ketamine infusions,different meds,some other alternative like HBOT? Has you r husband seen a pain doctor? Is he on meds? Trust me i have times I beg to die from pain too and I know the heart break that has on my family. I know it must be hard for you to watch your husband as well. People do get to a better place with RSD but it takes finding the right treatment. Everyone is different so what impacts one may not anohter. I am very sensitive to weather as well so can relate as I sit hear swelling with high pain from humid/storms.
If I can help in any way I am an email away. Are you in the US?

My daughter would be given different protocols by Dr Rhodes every few weeks. He does not share this information with you but instead he will fax you the newest protocol to try. Have you tried calling his office and tell them that you have the machine? Maybe someone would send you some protocols but I tend to doubt it.

Like I said, my daughter was in agonizing pain. Ketamine infusions have given her great relief and are approved by the FDA for breakthrough pain. Has Dr Rhodes latest machine been approved for pain management? I would start looking into another method of treatment if you can't get ahold of protocols.

Yes we have tried but again we were told that without him being an existing patients it's against the law for him to help. We would have even been willing to see someone locally if he didn't want to share the information outside medical circles. So that was why he wondered if anyone who has used the machine & has RSD/CRPS particularly in their feet would be willing to share information regardless of whether or not it works. Since it seems so many doctors out there either refuse to believe, don't want to help or unless it comes down to the almighty dollar, no one but other patients & their families know the extent of the heartache it causes. Now it seems that there are those who are being gagged not to say anything especially those that have had a bad experience. But how can others make an informed choice without ALL the relevant information, that would be like going on a roller-coaster ride that isn't safe, how can one make that call when there are vital parts that are not allowed to be discussed openly. My partner & myself are not interested in why this kind of action came about all we would like is someone ANYONE who may be able to help me help the man I love. I have no idea whether or not this latest machine has approval yet or not. I guess that information is not privy to those who are either dissatisfied customers or not patients.

I've never heard of this before you mentioned this treatment, and I thought I had read everything. I have a tens unit that seems to be based on the same theory, of a small electronic pulse to help relieve the stress on the muscles. I just couldn't imagine the pain it would cause me to put this on an area with RSD. I am able to use it on unaffected areas, that get muscle pain from overcompensation, etc. As my RSD is spreading I am not able to use it much at all.
The articles I've been reading on the machine say it's very much based on acupuncture and reflexology points. These are very exact points on our body that take years of training for people to learn. I think it would be a little scary just hoping you get the right points and then allowing an electrical current to flow.
Also I had a spinal cord stimulator implanted about six months ago. I can not use it at all now. The electrical stimulation went to the wrong nerves and caused my RSD to spread to those areas quickly and intensely. And this was under the supervision of a neurosurgeon and a pain management doctor.
Is it possible to have your local pain doctor contact Dr. Rhodes about working out a protocol through him? I worry for your husband if electric currents are being sent through the wrong acupressure points. Have you tried contacting any physical therapists in your area that may have experience with this machine in the past? Also have you tried finding a used copy of the book on e-bay or a similar used site?
I wish you all the luck. You've peaked my interest as I've never heard of this before. I will write back if I find any information that may help you.

Take care.

As Dr Rhodes is a podiatrist he would well know & understand the use of both acupuncture & reflexology, there are two sides to this machine, the one I speak of here & the other side is a T.E.N.S unit. No we haven't contacted a physical therapist to see if anyone has had anything to do with the STS machine, you bring up a good point thank you. We did eventually gain a copy of the book & from my opinion it's more of a outline of the capabilities of the machine & a kinda thank you from the author to Dr Rhodes. There are those that this machine has undoubtedly helped, but without the kinda money that would be needed & I have no doubt it could send someone to the wall, very few people have that kinda money just laying about, by the time many hear of this or some other form of treatment they more than likely have drained whatever savings they may have had. Thank you for your kind words & thoughts they are appreciated

Meekobindi

Not sure if this is the book you are looking for but perhaps will help you find some answers. Best of luck to you.

http://www.rmrsd.org/Bookstore.html

Hi is your husband on SSDI and there are Doctors that take it in Tennessee i had to pay $100 each visit but got Avinza (best Time relief Morphine)if a good doc would help I know of good ones in many states and Imagine other people here know many more I have had RSD for 43 years if I can help write me I think my addy is on here or if not just answert me and I will give it to you your husband is very lucky to have you
Gentle Hug rsdno

Please let me stress one thing here this Dr Rhodes guy was NOT the one who we got the machine from, we purchased it with from the company who makes or at least retails them. To have seen this Dr Rhodes guy it was goin' to cost us well over $10,000.00US & we just didn't have that kind of money we used every dime we had just to purchase the machine at $4,000.00US & the pads alone are not cheap & I know of nowhere else that sells them apart from the company who makes them, & if they did they would more than likely cost a whole bunch more.
My significant other has tried virtually everything available to him, bar the Ketamine Infusions, & pain infusion pump, & of course the Ketamine Coma procedure which is out of reach financially, or he would even take that risk even though the stakes are high, the pain infusion trail he had he had a bad reaction to where once it wore off unlike the slow release morphine he takes now, left no residue so when the pain kicked back in it did so very swiftly & violently. He was having a lot of nightmares too of things that are better left buried, it made him feel like something was eating his flesh alive, & gave him intense anxiety attacks, the sweats & the shakes.

He has seen many pain doctors & this last one told him that liquid morphine is NOT addictive if that's the case then why is it NOT available to just anyone.Why are there so many addicts the world over if it is so harmless. All in all we are getting nowhere fast.