I am so sorry to hear this. It is something many of us have dealt with...docs who don't know what to do or who don't care (or both). It is incredibly frustrating when you go in to discuss one thing and the doctor takes you off track, won't answer your questions, has no answers, etc. One suggestion would be to take someone with you to the appointment who will be in the room with you. I have found that even the worst doctors will generally be on their best behavior when they have an audience.

I was put on Lyrica in the beginning and it did help with the pain. Not a lot but it was one of the meds that was the most helpful in the beginning. I was switched to neurontin and that didn't help me at all but for some people it helps a lot. I think for me it was mostly that I was on the right combination of meds at the time I was taking the lyrica that made it as effective as it was.

But the meds were only part of the picture. Physical therapy is also important because the less you move, the more it hurts. It can get you into a terrible cycle of pain if you don't get enough pain relief to DO the physical therapy because the situation just gets worse and worse. Seeing a pain management doctor is probably a really good idea to help you juggle the different meds and treatments.

Unfortunately with RSD there is no set program for what works in every case. We all seem to respond to different treatments and meds. The important thing is to find what works best for you. You need to find a way to deal with the daily pain and then also have plans in place for flares and how you will cope with the pain in those moments.

I no longer take any pain meds and only use lidoderm patches and clonidine patches as far as medications go. This was after some severe interactions among the meds I was taking last year. I am very concerned now about the long term affects of medications and if I can find alternative treatments for my pain (TENS, ultrasound, tDCS, hot baths with epsom salts, etc) then those are what I want to go with. It means I have to push through a lot of pain on a regular basis but I am much happier with my treatment program now than I was when I was on all those meds. So as much as we are here to offer suggestions and share our own experiences, remember that it is up to you to decide what route is best for YOU.

Sandy,

I am sorry for the way you were treated by your dr. Did you ask the pm if he is knowledgeable in rsd? If not keep looking. I don't know where you live but therre is a list of dr.'s on the rsdsa web site.

I know my ortho dr. didn't believe me either and it took 6 months for him to finally say I don't know what is wrong with you. That was my last contact with him.

Hi Sandy and welcome.

Very sorry to hear about your experience. Unfortunately, many of us have had experience with clueless doctors.

Considering the problems with your knee, have you tried aquatherapy? That would help keep mobility while putting less pressure on your knee joints. I am swimming at my local YMCA on the recommendation of my MD to spend at least 6 out of 7 days in the water for a minimum of an hour/day. (That's one of my many therapies.)

Thank you! This is a great suggestion!

You need to find a new doc asap. If you take your meds as prescribed, then you've done nothing wrong. Is he concerned that your taking a dangerous level or is he only concerned about being the one prescribing them? If you have a pharmacist you trust, speak to him or her, asap.

I am on opiates. I spent several years refusing them because the idea of them scared me due to a family history of drug abuse. I am dependent, but not addicted, and have been on the same dosages for years. I dislike meds that make me feel intoxicated, and luckily, with the help of my doc, We've figured out a combo that decreases my pain substantially. Pretty much ANY activity causes me to flare, so I do tasks for short bursts of time, and then wait till my pain returns to a baseline level in the 3-5 range, before starting again.

You shouldn't be ashamed that you need strong medications in order to have relief. But, you do need to be careful about finding an experienced RSD doc, and then developing a trusting relationship with him or her. It takes time for that to happen, and there are lots of non-narcotic option that will also, hopefully give you some relief. (You should only introduce one new drug at a time, don't allow them to try more than that.)

I'm personally not a fan of pain clinic docs. As a general rule, ALL of their patients are super needy, so they can become overwhelmed with their needs. Their practices are scrutinized for the meds they prescribe, and so some under prescribe. Find a doc that will spend as much time with you as needed. If you can find someone that performs Ketamine infusions, it's certainly an option to consider.

I had a dr tell me that only drug addicts seek out ketamine treatments.. ignorant people with medical degree.. I have noticed that a lot of dr,s feel they can do no wrong after they get their license.. they seem to forget that the are here to service us and with out us they are poor and useless.. thats y I believe we don't have cures for a lot of these diseases. to much attention to the symptoms not the cause because there is more money in treating the symptom... I know there are good docs out there. the ones who said I want to do something good...for others not my pocket.. since when is medicine all about the business.. sorry to hear of your issues. I was put on lyrics and still take it.(it does NOTHING for the pain) the reason they r keeping me on it is because it knocks me out after a cple of hours and keeps me ko,d for 3-5 hrs a day...all the drugs carry serious side affects just learn them and AS LONG AS U KNOW YOUR BODY WELL you can avoid most complications...

Thank you for the information on the patches. It's really good to hear some one is able to manage this without taking oral medications. I was curious if you have ever tried Acupuncture. I did once years ago for a shoulder injury. It provided complete relief from my pain for about a day. I was thinking this might be another alternative, but have some reservations about it's use with RSD since I haven't once seen it mentioned in any of my research....

I don't know where you live, but I live in Virginia. My Pain Management Doctor and my Foot Specialist both work with the University of Virginia. I don't think I've ever had doctors so understanding that when I go there, and they touch it or pull on it, I will cry. And I will no longer be able to function the rest of the day. I mean, they have to work with it in some ways, but they're never really too hard on me. They also try to understand as much as they can when they consider what surgery or therapy option would be best. They take the time to make sure it's right.

Well, I hope that you can get better help in the future! I wish you the best!