NeuroTalk Support Groups - Systemic

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Systemic - Not Systemic? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/27405-systemic-systemic.html)

Quote:

Originally Posted by dealingwithtos (Post 146565)

Hi Everyone.

InHisHands, Yes, I have burning in my face, legs, shoulder (left) in addition to both arms. I didn't think that your comment was very polite.

Yes, any pain is too much pain and, to be honest, life is that much harder when you're in pain.

Why didn't you think that InhisHands comment was very polite?? Well, I for one didn't think she said anything wrong!! She was telling you the FACTS!! She is very ill right now and has a lot of pain going on. All she said was she didn't think that you had it. She should know, she does have it!!!Plus you asked a question and all she did was tell you the honest truth!!

Quote:

Originally Posted by Desi (Post 146575)

Hey Desi,

I think we were both commenting on a post that is no longer there. Thats why I posted a comment about respect.

If I am incorrect about your comment DealingwithTos, please correct me...

Heather

Heather,

No, you are absolutely correct. Thank you for responding.

I have never felt a negative thought about this board until now... I also have RSD just like everyone else on this board and am surprised by some of the hurtful comments...

If I hurt anyone I am truly sorry. Thank you! love,~Desi

Yeah I have been surprised as well at some comments.

I think we should all be helping each other deal not belittling anyone for their pain or whether or not we have RSD in one hand or full body.

Pain is pain and it stinks for anyone who has it... :(

I would like to step in here and just say one thing. When someone apologizes for something that he or she has done and in my opinion Desi is one of our angles. That apology should be accepted and not overlooked by going on about how one another hurts each other.
If I began to tell you how many times words have hurt it wouldn't end. I am sorry that your thread was misunderstood but please move on.
Thanks
Dawn

Quote:

Originally Posted by HeatherAnne (Post 147124)

[COLOR="Blue"]Ok.. ok.. why don't you leave well enough alone damn it!! I said I was sorry if I hurt anyone and you keep it up, so just go into your little corner now!! I am NOT a nasty person, but you just don't know when to stop do you?? ENOUGH SAID!! Gezzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz:mad:Des i COLOR]

Desi, You-Rock

We all love you and know that you would never hurt anyone with words or otherwise. No more said...
I'm seeing my PMD on Monday. (after I spend the weekend going to see another Broadway musical. can't wait.. gonna see RENT>>>>) and I'm hoping to get my first block for my foot. What should I expect and what does it mean. any info would be great...

Mary

Hi everyone,

The question here was "systemic --or not"
And by what criteria do you become classified as full body or not.
It appears to be entirely up to personal interpretation as I would say I have 'full body" as all my limbs are involved but systemic is just too strong a word to use as by definition that would imply that every part of my body , including all organs are involved.
Not every single inch of my skin hurts, nor are all my organs, in fact not too many are but I will still call it "full body" as in the scheme of my daily life that is how it feels.
My career has taught me that no two people respond the same to pain, what is one persons 9/10 is another persons 3/10. There are so many factors that account for that, fear and stress are just 2 but whatever the pain score, to that person it is a real pain in the butt (and everywhere else if you have RSD)
What I see from this thread is how pain can affect mood and tolerance in us all----just ask my family:rolleyes:
I think we are really good people who in our own way are trying to deal with something that we would rather not, some of us are definitely better at coping, it is very much a personality issue and how this impacts our life is such a variance. I can imagine that someone who was a professional ballet dancer as a profession who develops RSD in their feet may feel the impact more than an architect who develops RSD in their feet. It does't mean their pain is less but when we lose so much of what is intrinsically us and we see our financial and professional security gone then coping levels go crashing down.
It is horrible but it doesn't have to be how we define ourselves, I have admiration for many people and their coping skills, I aspire to be like them and will continue to try and take control of this rather than the other option.
Cheers to all and hoping today is a good day for you all.
love Tayla:hug:

Quote:

Originally Posted by lostmary (Post 147170)

:Wave-Hello:Hello Mary!! And you Rock too sweetie!! So, your going to a Broadway musical??Rent?? hmmm.. I never heard of that one.. you lucky lady, you are!! can I come along?? LOL:D I had three SGB in my neck. I am going to be getting more, as I have a new PMD.:D I believe he wants to try a new medication and he will sedate me.He also wants me to start bootcamp PT up again!:eek: After I had it,(the blocks, that my old PMD did) since I wasn't drugged or given not even an asprin for it(well xanax) but I've been on those for years, so I'm used to it. I did feel a little dizzy for around 20 min. and after that, my throat hurt on the 3rd. one he gave me. when are you getting yours done? what kind of a block are you having? I hope and pray my friend that this gives you so much relief! Your a good friend, Mary.. don't ever change!! Love ya bunches!! Please let me know how your block went. Ohhhhhhhh.. I'll be waiting here for YOUR limousine to pick me up!! will it be "black tie"??:p LOL Love ya!~Desi:hug: