[RUReady]

Not to be a worry wart , but does it concern anyone that you may be masking other pains not associated with the RSDS ? My RSD effects my entire left side from head to toes and when the pain is intolerable (pain is always present) the only relief is Hydrocodone or Dilaudid . The reason I ask is I have an ongoing cardiac issue that is going to require surgery in the future and it concerns me at times that what if my body is trying to tell me something else is going on but I keep covering up those signs with meds ? Once again not being paranoid but just wondering if anyone else has this issue and any ideas??? Take care!

[loretta]

Originally Posted by RUReady

Not to be a worry wart , but does it concern anyone that you may be masking other pains not associated with the RSDS ? My RSD effects my entire left side from head to toes and when the pain is intolerable (pain is always present) the only relief is Hydrocodone or Dilaudid . The reason I ask is I have an ongoing cardiac issue that is going to require surgery in the future and it concerns me at times that what if my body is trying to tell me something else is going on but I keep covering up those signs with meds ? Once again not being paranoid but just wondering if anyone else has this issue and any ideas??? Take care!

Hi RUReady, That is a very valid point. Most of us, I hope, have a thorough check up to rule out other conditions. I know I went thru a complete cardiac exam with cardiologist. One reasons it's so important, RSD, affects our immune system, affects our circulation and body temperature. Internal organs are affected. As RSD progresses, our skin develops conditions, RSD can and does go internal, effecting lungs, heart, kidneys, bladder, colon etc. Some have eye issues, ear lssues, nose , etc. I have had this 15 years and have been affected in so many ways. high blood pressure, low blood pressure, causing passing out. RSD is an autonomic condition, meaning it controls involuntary organs. It affects the Limbic Part of Brain. causing depression, short term memory loss, while talking, can forget a word, group for words, loose a thought about what we are talking about.
It's good to have a neurologist, psychiatrist, to help us deal with our losses. Hope you have found a good physician that you trust and understands RSD. Your friend, loretta

[keep smilin]

Originally Posted by loretta

Hi RUReady, That is a very valid point. Most of us, I hope, have a thorough check up to rule out other conditions. I know I went thru a complete cardiac exam with cardiologist. One reasons it's so important, RSD, affects our immune system, affects our circulation and body temperature. Internal organs are affected. As RSD progresses, our skin develops conditions, RSD can and does go internal, effecting lungs, heart, kidneys, bladder, colon etc. Some have eye issues, ear lssues, nose , etc. I have had this 15 years and have been affected in so many ways. high blood pressure, low blood pressure, causing passing out. RSD is an autonomic condition, meaning it controls involuntary organs. It affects the Limbic Part of Brain. causing depression, short term memory loss, while talking, can forget a word, group for words, loose a thought about what we are talking about.
It's good to have a neurologist, psychiatrist, to help us deal with our losses. Hope you have found a good physician that you trust and understands RSD. Your friend, loretta

RU Ready... Hello.. Loretta has many great points..I say if we all think back we may find some symptoms that have gone unanswered until now.. rSD lurking before realizing it..On the flip slide we must not push everything we feel into our RSD.. that is why we must pay close attention to our bodies and changes and follow up with our physicians often...

Hugz to all..have a restful night...Kathy

[daniella]

I often fear with a new pain or symptom brushing it off as rsd and it not be. Part of the reason why I went to over 40 eye apts and have had so many diagnostic tests for my legs. It is a hard call to know what to do.For some new symptoms I try to wait a few days but again that can be risky if it were not RSD. I am not on pain meds other then like neurontin type but i have heard people mention that their meds mask a pain of condition that was not RSD. It really shows how painful this condition is. For me I seem extra senstivie even on non rsd areas. I think cause I am so protective of my body that all my body parts are not used to certain movements. Are you monitored regularly for this? Have you discussed your fears with your doctor and does he know about rsd? I know you would think he would but not always have I found that the case. Hang in there and I am sorry for your other health conditions on top of this

[bassman]

That is a very good point. When I was first diagnosed, one of the first doctors wanted to perform a sympathectomy (essentially destroying part of the central nervous system). Fortunately, my primary care physician explained that while it would get rid of the pain, it would also prevent me from feeling any other pain which is a good thing. He talked me out of it – thank God!

When our pain system works the way it should, it acts as a warning system to tell us that something is wrong and that we should do something about it. When we as children stick our hands in fire and it hurts, we quickly learn to take our hand out and not do that again. This is evolution at its best. If we did not have such a system, we would harm ourselves many times over.

By using a lot of narcotics to numb our RSD pain, we do run the risk of dulling senses that will give us warning signs for other problems. However, our bodies are pretty smart, too. The nervous system, even screwed up, will “direct” the pain meds to the areas where they are needed and concentrate the numbing effect there.

Want some non-scientific evidence? I take enough (your choice of narcotic here) that the average person on the street or recreational drug user would be “flying high.” However, I am never dizzy, dopey, goofy, or high. Why? Because much of the drug is going to the pain, not to the part of the brain that makes one “fly.”

Of course this is just my opinion. I am not a scientist. I still am extra-careful to pay close attention to all of my body-signals and get regular complete checkups. I own a cuff and take my own blood pressure daily. If you have a cardiac condition, your cardiologist should advise you how often to come in.

Mike

[Rrae]

Originally Posted by bassman

That is a very good point. When I was first diagnosed, one of the first doctors wanted to perform a sympathectomy (essentially destroying part of the central nervous system). Fortunately, my primary care physician explained that while it would get rid of the pain, it would also prevent me from feeling any other pain which is a good thing. He talked me out of it – thank God!
Mike

OMG i am SO GLAD you did NOT do the sympathectomy!! I am appauled that that Dr even SUGGESTED that as a first line of therapy!!
I became desperate enuf and checked into getting that done because of the constant burning leg pain. To me it boiled down to either that or a 12-guage shot to both legs!! Thank God my Dr talked me outta that as well.
That is a definate 'Grande Finale'...there is no turning back once you cut that nerve chain. And in most cases (Per my Dr) pain ends up coming back anyway (as in phantom pain or otherwise).......
Soooooo glad you didn't do that

Thanks for all your great input

[wswells]

Originally Posted by Rrae

OMG i am SO GLAD you did NOT do the sympathectomy!! I am appauled that that Dr even SUGGESTED that as a first line of therapy!!
I became desperate enuf and checked into getting that done because of the constant burning leg pain. To me it boiled down to either that or a 12-guage shot to both legs!! Thank God my Dr talked me outta that as well.
That is a definate 'Grande Finale'...there is no turning back once you cut that nerve chain. And in most cases (Per my Dr) pain ends up coming back anyway (as in phantom pain or otherwise).......
Soooooo glad you didn't do that

Thanks for all your great input

I too am sickened that your Dr. would even think of a sympathectomy as a first line of treatment. I was Diagnosed with RSD in 1986, first was PT and some other noninvasive treatment, then it was hundreds of different blocks, 2 trips to Philly from FL. to see Dr. Schwartzman and then back here for 5 day continuous blocks using sufentyl this was pre Ketamine.The continuous 5 day blocks seemed to work the best for me , but they did not hold. My neurologist,Ortho surgeon, anesthesiologist contacted Dr. Swartzman and they all decided that the best course would be sympathectomies. I had 3 out of my 4 limbs done. BIG mistake, The pain does not go away it lessons but you still have to take meds and you still feel like crap. About 10 years a was told that the sympathetic chain grows back. Well I am proof that this is true the pain comes worse than prior to the surgeries.I think that most of the Dr.s would know that this is not a good treatment for RSD, maybe it is used for other reasons. Please check about other treatments, but I personally would say no to a sympathectomy. Good Luck with your treatments my prayers are with you!
Wendy