Ok everyone, here is the latest *edit*, well she took new off of appointment I had with the self proclaimed "RSD" specialist. The last time I posted that she was putting me on neurontin but after a week of it she took me off because my for and ankle doubled in size she explained to me that it is a rawer side effect but that is what she thought was happening. So I saw her on friday and she informed me that there was no other treatments that I could try. Ask I have ever had done was a surgical lumbar sympathectomy, tens unit and this neurontin. I asked about the implant or if she was aware of anything else I can try and she said that I wasn't a good candidate for the implant, with no explanation as to why. Ask she wants to do is put me on more stronger narcotic pain medicine to mask the pain and not try to treat the problem. I'm tired of living life in a drug induced haze that dosnt help with the pain anyway.grrr. Now in on the hunt for a dr who really knows what they are doing. I'm just tired of doctors that say the know something but know far less than I do. Thank you everyone for letting me vent.I hope everyone is well and appreciate all feedback.

This seems to happen all too often. I've seen a number of doctors who claim to know about RSD or that it is one of their "specialties" but they really dont know a gosh darn thing. Once you meet a few I think it becomes easier to see the red flags. You can ask a handful of questions and based on those answers you can usually get the feel for whether they really know what they are talking about.

I completely understand not wanting to live your life on so many medications...I feel the same way. Everyone has to go with the treatment option they feel is best for them and for some people medications are what they are most comfortable with. I am not one of those people. I currently only use clonidine patches to help control the symptoms of dizziness and blurry vision so that I can drive and lidoderm patches for the pain. That's it for meds. I also use the TENS, ultrasound, hot baths, heating patches, physical therapy, and tDCS for the pain.

I would suggest looking into tDCS treatments because it really is one of the only treatment options out there that attempts to treat the root cause of the condition rather than covering up symptoms. It doesn't work for everyone but I have seen some amazing success with it. I got a lot of the function back with physical therapy but tDCS has given me a life where my pain level is not a 9-10 all the time. Dr. Fugedy is the best for this treatment, though I have done all of the work on my own without any consultations with him. And the cost was only $300 for all the equipment for me.

Other things that you could try that I didn't see mentioned in your post: blocks, ketamine, physical therapy, aqua therapy, mirror therapy, and calmare therapy. I don't know a lot about all of these things but they may be worth looking into for you...there are definitely lots of options out there to try. Ketamine has seen some amazing success at putting people into remission but it's expensive and does carry some serious risks. Physical therapy was HUGE for me...but you really do need something that can help control your pain enough so that you can DO the therapy and really commit to it. Aqua therapy is good for a lot of people and can be a great starting point if regular physical therapy is still out of your reach. I don't know much about calmare or mirror therapy...but some have had great success with each. Blocks...they are a pretty standard early treatment but I had a very bad experience when the last one I had caused the RSD to spread to my entire upper body. This is very rare but it happened to me so it serves as a reminder that ANY sort of trauma or invasive procedure CAN cause spread. Doesn't mean that it WILL but decisions about treatment options should consider all the risks and weigh against the possible benefits. No treatment decision should be made lightly or in desperation.

Take care and good luck. I'm so sorry you had to deal with a doctor who clearly wasn't up to the challenge of actually helping a patient with RSD.

Take control.. don't say yes to certain treatments if they don't feel right for you. Find a doctor that has 'your' needs in mind and isn't just lumping you into a generic treatment. Hang in there.. I'm on a similar journey and we have to have faith we will find a great doc and better treatment options!

I appreciate all the advice. Im trying to do as much resurch as i possibly can on my own because ive come to the realization that nobody is gonna try as hard as i am or care about what happens to me more than i do. Its frustrating, sometimes infuriating that there are so many contradictions in treatment/cause. I made a mistake early on when i had the surgicle lumbar sympathectomy. The doctors told me then that it would "cure" my RSD which i now know was incorrect. It actualy made things worse. prior to the sympathectomy i had several blocks done which seemed to help at least in the begining. Not so much in the end. i do use a tens unit. I do aqua theropy on my own but that is the extent of the treatment ive had. I cant tollerate hot or cold only luke warm and mildly cool anything else is intolerable. im going to contact a doctor i found in richmond va at the medical college of virginia. He is supposed to be very good and knowledgable about RSD. Im hoping i can get an appointment with him sometime in the near future. Again i want to thank everyone. Your comments and sugestions are always welcome and appreciated,

Fattieratties, if you can bring a family member or close friend to act as an advocate this could help also. Not just to help you iron things out but it sends a message to the doctor that others are involved. There is strength in numbers.

That is so true. I notice a difference in my doctors when my husband is in the room. Now they are trying to explain a little more; also another person might have a question or two not prevously thought to ask. Just seems docs are more attentive.


Gerry