Dear Wolflarsen,

I know this diagnosis is terrible to come to terms with. It doesn't help when you read some of the terrible circumstances that many of us are in after years of living with this. Please don't let our many stories freak you out, there are many people who don't get RSD spread total body. Also you have to consider that many here who have experienced spread throughout their body are also dealing with multiple complicated health issues as they will tell you.

Ultimately no one here can tell if your rsd is spreading. All we can do is offer you our support and understanding; tell you about our own personal experiences through this journey with RSD.

Please keep in mind we are all totally different, respond differently to the same treatments and medications.

It sound to me like you are still in the early acute phase of your initial diagnosis which is good news in that you do have very good options for treatments.

It might help you if you are able to think of the fact that your body is responding in the fight & flight mode and as such you are most probably very highly sensitive to any type of stimulation whether it is internal or external. This includes things like coffee or caffeine, alcohol, tobacco, refined sugars, spices and Stress too. Your switch or dial has been turned high right now.

I wish I could give you more reassuring words. You sound like someone who is very connected to listening to what your body is telling you. That's a good thing too.

I don't know your circumstances or lifestyle choices. I just can't stress enough how important it is for you to seriously consider all of the factors centered around striving towards a balanced mind & body on a daily basis. I know it's not easy to do but you will do yourself a huge favor if you can eliminate as many of these stimulants as you possibly can.

It might even mean leaving the forum for a while just until you have a better understanding of what your diagnosis means for you, to help keep your stress down. You may not see it initially but each of these things will help you in the long run.

Having RSD is about managing and taming the monster on a daily basis.


My heart goes out to you.

MsL