Systemic - Not Systemic?
 

Hi Everyone.

I have a question: What criteria is there to know whether RSD is full body? The reason why I ask is that my legs are on fire right now, but I am able to walk. I have RSD in my arms. So, even though my legs burn - not all the time - am I not systemic? Does that mean that the RSD is just not active in other parts of my body?

I sort of feel (please prove me wrong) that when a person has RSD, they really have it everywhere and with any trauma to a certain area will cause the RSD to be active in that area.

I am thoroughly confused.:confused:

What is your opinion?

I just asked about this a week or so ago.

I bumped my thread to see if it helps answer your questions.

Jules

flare ups in other parts
 

Full Body
 

I don't know if there is an official definition of full-body. I have always thought I was "lucky" because the RSD seemed to be confined to my left leg and foot. As painful as it got, I had pretty good health/strength/pain levels everywhere else. This lasted for many years.

A couple of years ago, I started to get pain in my right leg, then my hands, then my shoulder. etc. Now, there are times when I hurt all over and any little trauma (like an injection or blood test) will cause a flare-up. I suppose that is what people refer to as full-body. It is almost a comparative thing.

I still have the worst pain in my left leg. I am not being treated any differently for the full-body, other than the SCS does nothing for any other areas.

I am still lucky because I have not had to quit my job (yet.) Good luck to you. :hug:

Mike

Hi Mike,

Yes, I'm lucky too. I also work FT. Mine is primarily in my left arm/hand/shoulder. Although, I have signs in my right arm. My legs burn occasionally too. But, they don't look like they have RSD.

When it's going to storm (like tonight) I'm absolutely miserable. I'm a secretary so typing with my left arm is horrible.

Today is just a hard day. I wanted to stay home because I hurt, but to make matters worse, I was just given a dictation to transcribe which should take me about 3-4 hours....

Can I kill myself now????

Thank you everyone for responding.

i looked everywhere and could not find a real definition of 'full body' rsd, but i did see that it was called full body and systemic interchangably on one study so that is what i had said to jules.
i also said who cares? if you have a little rsd, that is too much, and it does stress ones entire body mind and soul. i said it was like being a little pregnant ... ha!
and please don't kill yourself! my goodness, don't even joke about that.
joan

It doesn't sound (to me) like you have full body if it isn't in your full body, for instance, it is not in your back, chest/ groin, face, etc...

please see my other post in "When is RSD 'full body'?", here: http://neurotalk.psychcentral.com/sh...57&postcount=8

Let's be courteous
 

Lets not minimalize anyone's pain. We all know whats its like to be in pain and we don't want to make any one person feel like their pain doesn't matter or doesn't count.

Let's respect everyone's situation and realize we are all in the same boat. Pain stinks no matter how much or little you have. Let's support each other not tear each other down.


NOTE: Thank-you Vanessa for editing your post after I commented.

I agree with you Joan, any pain is too much pain! :)

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.

edit
 

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...

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

[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:

Mary,
Do you know what type of block it is for your foot? I would love to share my experiences if it was one that I have had. I have had Bier blocks, lumber sympathetic blocks and facet joint injections.
Love Tayla:hug:

Tayla,
I'm getting a lumbar block. It is for my right foot. I fell a few months ago and broke the toes on that foot. It isn't healing, so my PMD feels that the rsd has started in on that foot. No need for the block (according to my doc) for my left foot as I've had rsd there for a few years. What should I expect? some say warmth,how long should it last? Did they give you anything for pain? looking forward to your reply.

Mary

desi,

More PT.. UGH.. Do you know what meds he is planning on using? Keep us posted after you see him.

The Limo leaves friday at 1:00pm. the show is Sat 2:00pm. Rent is all about love, loving and being loved no matter what. Also about friendship and illness. It is great. I saw it last time along with hairspary..awsome. Love them both

Hope the doc appt goes well.

love and friendship:grouphug:
mary

Hi Mary,
I have had multiple Lumber sympathetic blocks, some have worked well for quite a while and some have been quite short lived but I am always happy to have another go.
They will lie you face down and hopefully give you some light sedation so that you will actually sleep through the procedure.
I have had one without sedation and I found it just too hard to keep still as it was painful just lying that way.
They should use fluroscopy/image intensifier to find the sympathetic nerve so as to maximise the relief.
When you wake you will probably feel a very warm sensation in your leg. It will probably look quite pink too, this is a sign that the anaesthetic has hit the right spot.You will often have a numb pubic area and parts of your upper leg maybe numb to touch. Walking is usually not affected unless you have had a very generous block that has hit the motor nerves also.
There is some discomfort on your back where they insert the needle and sometimes a bruise but compared to the pain we aare used to it is usually quite easy to manage.
Sometimes the pain relief is not immediate, don't despair if you feel no change, it can take a day or so before it kicks in.
I wish you all the best with your block, look forward to hearing how you go.
Cheers Tayla:

addit--My Pain doctor injects lignocaine into the block, he once included some steroid but only the once

Desi, it wasn't you that we were commenting on, we think you were completely fine at the comments you said. Just FYI.. I think everyone is confused at the point we were making but it wasn't at all about your posts...

I guess I see full body as every inch of me hurting, burning, with full colour change, spasms, temperature differences and swelling going on from time to time and of course alloydinia. I also have systemic difficulties from the RSD - I have already answered the other post 2 seconds ago so it's all there. However, I wanted to add that when I got RSD in one arm it sucked, now it is full body it still sucks. Pain is horrific to deal with wherever it is.. but I personally feel that the term full body refers to pain everywhere, and in my case organ problems as well.

We all have the right to have different opinions on this - everyones body is different as Tayla says, but I personally feel that full body =, well, full body!!

Just another bit... I guess having RSD already makes you more likely to develop it in other areas - and more likely for a spread to happen but it doesn't mean that it will spread and end up full body. If you look on this site there are very few people with full body RSD... hope this helps!!!

Love

Frogga xxxxxx

Hi Frogga!
 

Thanks for your opinion Rosie. That's what I was looking for.

By the way, I did get your postcard. Thank you so much. What a surprise to get it in the mail!

I hope you're doing alright. I would love to hear more about your trip!

I've been horrible. I'm switching from Lyrica 600mg to Neurontin 3600mg and I'm in horrible pain and nothing seems to help. At night I've tried tramadol and oxycodone which I feel I could take like candy...

I'm at work dizzy, nautious, in pain but trying to keep a smile on my face.

Thank you again for the postcard. :hug:

Beth.