Scared, I might have RSD
 

Please help. I am 15 weeks post op acdf and recovery has been terrible. Neurosurgeon cannot figure out why I'm still n so much pain. When I woke up from surgery, my left rm was dead weight and I had xtreme pain the the back of my neck....15 weeks later, pain s better in the back of my neck, but my arm hurts bad to move it up or out, pain is like a spasm. It also burns in the upper rm and forearm, worse at night. I got a cortisone shot in my shoulder today and the ortho asked if I had been diagnosed with RSD, I said no, and that was the end of the conversation. After reading about it, I am scared. I've had the Nerve test which revealed mild CTS in both wrist, I'm having more nerve test Tuesday. My hair and nails have grown somewhat faster but I haven't had a hair cut since theday before surgery, so, maybe not. I have no changes to skin tone or color and I don't have visible swelling in m arm. Any comments, suggestions, advice please......:(

Hi
 

I was diagnosed with a 3 phase bone scan, Make sure you doc understands rsd,if u tell us where u r from, someone maybe able to recommend a doc


Deb

I agree with what Debbie said.

I would also say that you are very early in if it is RSD. The good thing is that if it is RSD and your doctor treats it as such then you have a good chance of successful treatment. The hard part is that at this early stage you might not have as many visible symptoms. I know the longer I have had RSD, the more symptoms and certain things have shown up. You also don't have to have ALL the symptoms to have RSD.

My suggestion would be to try and find a doctor familiar with RSD and get their opinion. It's a clinical diagnosis so it needs to be observed over time to really be sure. Unfortunately there are also usually a bunch of things to rule out as well...which often lengthens the process of diagnosis and treatment. If you can get to a doctor familiar with RSD that will be your best bet because they will know what they are looking for and how to treat it. And I guess "familiar" is not the right word...you want someone who has TREATED a number of people with RSD. But if you see a doctor who claims to have "cured" a bunch of people with RSD...that's not a good sign either because it tells me that they don't really have much experience with it as there is no "cure" for RSD...just the possibility of remission which you would have a good chance for if you have RSD and it is caught early enough.

I will say that intense burning pain is something that all of us with RSD are very familiar with. There are also a lot of other medical conditions that could have that as a symptoms. It took over a year for me to begin to see hair and nail changes. Not saying it's that way for everyone but just be careful not to convince yourself you have the symptoms just because you are so desperate for an answer. Try to make a list of your actual symptoms...all of them...and then (if you must) look at the list and see if it fits with RSD. Really...you want to make that list (making it as complete as possible) and also a list of questions and bring that into your doctor.

If one doctor suspects RSD...then that says to me it's something to follow up on for sure. Bring it up with your doctor or find one who specializes in RSD and see what they think. Whatever it is...RSD or something else...you deserve to have your pain taken seriously. I hope you find answers (and relief) soon.

Thank you. My biggest complaint is when I move my arm up or out. It hurts like a spasm or sometimes like something is being stretched or torn. I read where ppl with RSD are in constant pain, but I don't understand if it is from moving thir limbs, etc. can you explain?

Thanks. I live in Alabama, close to Birmingham

For me...it is all the time non stop no second of total relief...that's MY RSD...other may be different. There's no moment when I am not in pain and I would say most days at my best I am at a 5-6 on the pain scale and most days that gets to a 7-8 by the end of the day. Bad days and flares reach that 9-10 level. This is a significant improvement over where I was two years ago...and is the best I have been since I got RSD almost 4 years ago.

The pain itself for me doesn't come from any particular movement but can sometimes get worse with certain things (like holding things or full weight bearing on my left ankle)...but the pain is always there.

I also have three very distinct types of pain that are caused by my RSD.

1. The all the time every second of every day pain is an intense burning pain. I usually describe this as a feeling like my bones are made of hot pokers and the heat radiates OUT from them.

2. With sensitivity to touch and temperature...when things touch me that is more like a hot poker or blow torch being dragged along the outside of my skin and the burning pain being on the outside like I am physically being burned (as opposed to the radiating OUT like the regular burning...if that makes any sort of sense). Sometimes if the thing causing the pain is in a small area (say...caused by a rain drop hitting me as opposed to a cold breeze which covers a larger area) then I describe it as feeling like I was shot or stabbed with a hot poker.

3. There is this intense bone crushing pain that typically comes with flares. This I can only describe as what I would imagine it would feel like if you put your bones in a vice and squeezed until they were completely crushed. This is by far the most severe pain but it doesn't come as often as it used too...only with flares.

Some people describe the burning sensations differently...we all have our own way of thinking about it. For me...these are the three very distinct kinds of pain some of which are triggered by very specific things. It took me a long time of living with this sort of pain all the time to really be able to clearly define the different types of pain and to know what things trigger what sorts of pain. In the beginning I will be honest that it was just so much pain all the time that I could not sort out the differences because all I knew was it was PAIN and it was BAD. The longer I have had RSD...the more I have grown accustomed to the monster and learned to cope with it. Many times it's a balancing act between what provides what amount of relief vs pain and weighing the benefits over the negatives.

Other than movement are there certain things that trigger your pain?

I'm recovering from acdf, so my neck still hurts. Other than a burning sensation my biggest pain is when lifting my arm. I'm scheduled for more nerve test and MRI Wednesday on my arm and neck. Hopefully we can determine what is going on. I'm so sorry you have gone through so much! Prayers are sent up for you! I'm not sure my symptoms are in line with RSD, hopefully not. I will keep in touch if that's ok. My burning feels more like my skin has been sunburned, not my bones....BTW, did your ain start out like it s now? Do you know what triggered it in the beginning? Has it spread?

I hope it's NOT RSD...I wouldn't wish it on anyone. Hopefully you get to the bottom of this soon and get some relief. Take care.

Thank you! My biggest pain right now is from moving my arm up or away. My pain level will go from a 2 to a 10 very quickly. It's like a very painful spasm. I can squeeze it and move it closer to my body and it will ease up. It burns most of the time like a sunburn. Does this sound familiar, like symptoms of RSD? I'm having an MRI and more nerve test Wednesday. Will that give my dr an indication of RSD? Wht should I look for? I had one nerve test which revealed CTS in both wrist...my neurosurgeon thins I have som nerve sage nd just takes time to heal. The ortho ht gave me the cortisone shot thinks I need surgery to 'clean it out' . Any type of surgery is the very very last thing I will do. He is the one hat asked if I ha been diagnosed with RSD. ??

This may be silly but I have to ask....my left ear is burning somewhat and is red. My left check is a little. My ear feels a little warmer to touch than my right one. ? Also I'm having an emg Wednesday and I've read where that can be bad for rsd. Have you heard that?