numb toes, numb leg, rsd sucks
 

I am on nurenton for rsd brought on by a fall and injury to my knee.

When I went into my "pain management" doc asking about the very similar symptoms in my neck, she looked at my neck sort of, and announced to the wall that " there was no rds there.
So tough for me I guess.
Why do orthopods treat patients like this, it is so frustrating
Where do we get help.
Lynda:confused:

Any part of your body is susceptible to RSD at this point. You must do whatever you can to calm down those potential problems asap. The diagnosis is less important than the outcome IMO.

If you're not comfortable with your doc/s, keep looking--but, do research on what others have tried to forestall spread. Things to try asap=hot baths with Epsom salts, warm water PT, massage, lidocaine cream, a course of steroids, etc.

Use extreme caution regarding suggestions of things to try. Massage and steroids in particular made me much worse as did lidocaine cream. Steroids increased spread for me. Warm water caused severe flares at one point.

It is in our best interest to think, not only about pain relief but treating the cause of the pain, brain dysfunction.

Most symptom treatments do nothing to stop spread of CRPS and in fact may cause spreads.

You can spend your lifetime and money treating flares and spreads.

My suggestion is to become your own CRPS expert. This involves an extensive commitment of time and energy in research. Part of that process is educating yourself about the mechanisms of brain reorganization and CRPS. All treatments involving CRPS and brain reorganization have minimal risks/side effects and target the cause rather than treating pain flares and spreads.

It is valuable to hear what others are trying but very risky to try something "ASAP" without first knowing the possible side effect that could make you worse.

I'm very sorry to hear this. I have RSD in my neck and it is just awful.

In my opinion, you need to do what you can to try to help yourself with this if the doctor won't. My first advice would be to get a new doctor if you can because anyone who feels like they can say RSD is or is not there just with a quick look is not qualified in my opinion to be treating a patient with RSD.

Meanwhile, do you know the things that tend to calm your RSD? Like heat, lidoderm patches, etc? If any of these things help your RSD then I would get on them ASAP for your neck. I made myself go through desensitization so that I could tolerate a scarf on my neck which prevents me from experiencing some of the worst trigger like cold and air movements. When it is bad I also put a lidoderm patch and/or a heating patch on my neck under the scarf. Hot baths with epsom salts are also soothing for me. We're all different, so what works for me may not work for you, but if you continue to let it go unchecked then it will only get worse. I would start with things that you already know help you and do what you can to try to avoid the triggers that make it worse. It was a lot of trial and error for me to find the things that helped. Most stuff only helps a little but when you can get several things that help a little together then it can add up to making things tolerable.

Like James I think it's important to try to treat the root cause...but at the same time we have to do what we need to so we can live our lives in the mean time. It would be much better if you had a doctor willing to help you with this but as it appears you do not I would take matters into your own hands and see what you can find that will help. Hopefully you will be able to find a better doctor to treat your RSD and help you through this so you don't experience spread to more areas.

I have to concur with Catra and James. It sounds like a second opinion might be in order. Unfortunately you need to educate yourself regarding how to select a doctor to treat you. Very, very hard work but it will pay off in the long run. You might consider a team of doctors who are all philosophically on the same page.

Catra is so right about what works for one may not work for the other.

I had a disastrous response to pain patches and in fact just one application caused a spread to my back which was resistant to all forms of treatment for almost two years.

Additionally, there is no scientific research that suggests that patches can prevent spreads, although they can reduce pain and or flares for some.

If you are concerned about preventing or reversing spread you might want to explore Ketamine infusions or tDCS.

Hoping better days are ahead for you!