Mommy Jen I am sorry that it took so long for you to be diagnosed with lupus - and yes, it is wrong that doctors attribute everything to RSD because it's easier - it shouldn't be like that. But, unfortunatly, it is.

I have severe (full body) dystonia caused by the RSD. According to my rheum (who specialises in RSD in the UK) she sees a subset of patients with dystonia and RSD and that this group of patients makes up about 20% of her patients. It is not an official statistic, but that's what I have been told in person.

Another issue with the "muscle wasting" is proprioception - if you don't know where you limb is and your brain is ignoring it then it will obviosuly not be used as much. Proprioception is due to the overwriting of brain patterns by pain signals (again, a quote from my dr - Prof Blake and Dr McCabe at the national hospital for rheumatic diseases in Bath otherwise known as the Mineral water hospital) which means the brain can't understand where your limb is and thus it is used less. This could explain why you can walk around your house but not outside as you know where you are in space as related to your house - because I bet if you moved the furniture around then you would struggle more because your brain wouldn't be able to understand where it is. Or you could just be lucky.

Well... even if we are just looking at the clinical features and their possible disabling effect (ignoring mood issues/ depression/ effect of severe pain/ sensitivity etc).

Osteoporosis/ bone changes --> (can be) disabling - hot bone syndrome
muscle wasting/ weakness --> disabling (not always caused by lack of use)
peculiar sensations --> numbness can inhibit movement not through lack of use but through loss of control of it.

(this is taken from CRPS & RSD Patient information booklet - published by RSD UK in association with the neuroscience resaech group, RNHRD Bath, UK).

I think we must all remeber that RSD is a very complex disorder - we are all individuals and MANY people get better from this, or at least recover to a point where their daily life is little affected by it.

I will have to come back to this - my pain is too bad to do this atm and vision is going.

Frogga

Artist,


I am sorry but it was not my intention to imply that people within this forum are not " pretty bright and well informed" and your addit to me was a somewhat sarcastic response to what I thought was quite a sensible reply to a statement regarding dystonia, which I do happen to suffer severely from. It is for this reason I have extensively researched it, it has nothing to do with the fact I am a nurse.
Whilst the majority of you are well informed there maybe some newer and less well read members who may become unduly concerned about the possibility of developing dystonia as a result of their CRPS which I felt was worth mentioning.
Cheers Tayla

Fair enough, Tayla!

all the best!

Way to pick my post apart and NOT pay attention. The AUTOIMMUNE SYMPTOMS I listed such as fevers and rashes are NOT rsd. The point being that not every thing is related and it is important not to let Doctors tell you that it is. How the heck does that scare anyone. Here is the reality....RSD is terrible but it is not a death sentance and that is the most supportive thing you can say to someone who's head will likely be filled with horror stories and worse case scenario's. You can surf the net to find anything to back up any theory so that get's old.

The BEST thing my Doctor ever told me to do was to RESEARCH and LEARN about RSD, the available treatments, etc. He even gave me web-sites to explore!! This Forum has a WEALTH of information in it, and has allowed me to discuss subseqent questions that I may have with my Doctor more intelligently. I wish I found it EARLIER, when I was first diagnosed.

The most DIFFICULT part of RSD is trying to explain to OTHERS all the ways that it can effect one, physically and/or emotionally. AND, what has or hasn't been effective. OR, just "venting".

It could be that Doctors that "discourage" their patients from LEARNING, are pretty darned "insecure" THEMSELVES, and far too "RIGID" in THEIR limited knowledge of RSD to be OPEN to other forms of treatment, etc.

After all, "knowledge is POWER", and SOME Docs sure like to wield their Power over vulnerable and defenseless patients. Personally, that is who I would "run like H***" from, NOT a Forum of SINCERE, knowledgeable, UNDERSTANDING and SUPPORTIVE members...

Brokenwings

Tayla,

You have picked apart my prior posts which I have ignored till now. In other words what people accuse other people of they usually are the guilty person and just turn it around in manipulation. Like accuseing someone of being sarcastic for instance.
Hugs, Roz

Ok. I really think we should calm this down a little bit.

I think the more this forum continues the more I realise how important not only what I say but how I phrase something is! The identical same idea, framed in two different ways can lead to totally different responses (If any one is interested - that's economic framing theory and why advertisers make things only 10% fat instead of 90% fat free - identical, but worded differently).

Mommy J. I have lived with this disease for 5 years and I can empathise with some of your ideas - such as not letting RSD take over your life - it is a major PART of it but it shouldn't RUN it. I also agree it is important your life shouldn't be just illness related but encompass other things that make us the people and individuals are. This is something I have seen across this forum - as people who are limited to the house or to bed start up threads on hobbies they enjoy or ideas for keeping mentally and physically busy to help with distractions (I think I mentioned the threads to you).

As I mentioned, I also agree with you that doctors are too fast to blame everything we suffer as RSD - (although then again, I can also complain about other doctors who search for something that isn't RSD - ending up with MS/ MD/ primary generalised dystonia/ Central Pain Syndrome and gosh knows what else!....... However, I feel that as RSD is not a well known disease and it's affects on individuals are different - we cannot say what IS RSD and what isn't - well, I can't. (eg the spasms - is this RSD? or is it dystonia? what about the spasms before the dystonia? or even the temperature change - is it RSD? or Raynauds? or did the RSD cause Raynauds? or is it something totally different?). It has taken me a while to learn that I am never going to have a full fitting label for what is wrong with me and I am unlikely to find the answers to my RSD questions. About rashes - I have had them ever since I developed RSD - and never had them before. The easiest way to tell if I'm about to flare up or collapse is to look at my throat and chest - if the rashes start then I am about to get ill. I have never seen information linking CORE body temperature to RSD and don't know if it affects it - it would make sense if it did because it's another part of the autonomic system which is responsible for homeostasis of all that stuff. I have however seen research about the limb temperature - the colder the RSD limb is the more tough you have to be with the treatment/ physio but you can still get better!!!

Also - from what I understand - RSD leads to hypoxia and chronic pain and neurological issues. Hypoxia --> POSSIBLE circulation issues, blood clots, non healing skin, easy to get pressure ulcers etc, infections easily got, muscle weakness and osteoporosis (hot bone) as well as increased pain. Also nerves dying off because of basically, interior frostbite (I haven't got the references but will find them if you wish).

Chronic pain --> lower immune system, tachycardia, blood pressure, weak/ strong pulse, fatigue, other types of chronic pain for instance from postural problems (hold your neck funny so it hurts less, then get a headache etc)/ digestion issues/ reproductive issues (periods stopping etc)/ problems with internal clocks/ sleep/ visual/ auditory/ concentration issues, Oh, and psychiatric issues such as depression, anxiety etc etc.

neuro issues --> bad proprioception/ movement initiation/ stress tests/ co-ordination/ control of various organs etc etc.

so even though it might not be PURE RSD, the symptoms themselves can create diseases or other problems themselves.

RSD does suck so much. Many people are lucky and recover but for those that don't it can be a very long and difficult and scary journey. This forum is important for that - to give people individual support as they work their way through to being able to "live with" it. The RSD spectrum can be very hard to deal with - I am very disabled from the RSD (I have mild movement in my right arm/ shoulder and movement on my face but that's pretty much it. I have severe dystonia and I have 24hr carers and am stuck either in bed or in my wheelchir.) BUT, this happens to very few people. But. what am I supposed to do? If we want to show newly diagnosed people that they can get better - I am simply scaring them? maybe their should be a bone yard for those with intractable disease? (ok. that's me over reacting).

MommyJ. I am very sorry that you feel the way you do about the forum. I also wish that you could think before you write and re-read your posts. You have interesting points, but they cause so much conflict that the actual ideas behind them are rarely discussed.

Frogga xxxxxx

frogga...well said.

let's keep this on topic for the most part. this thread has such a wealth of wonderful information, but it is getting lost.

Mommyjen: You keep saying that collectively we misunderstand what you write here and that it was not what you meant at all. Here is a quote from your message on 3-12-07:
"If you feel picked on then chances are you are relating to something I wrote and don't want to look at it. I say look hard at it until you can soften to yourself and not feel guilt or ashamed or persecuted."

When some of us wrote that we were hurt by your earlier comments, you could have been gracious enough to say you were sorry and did not mean to hurt anyone by your remarks or even just let it go. Instead, you say it must be true if it hurts. Also, I am not aware of anyone on this forum who is ashamed or guiltridden because of having the misfortune to get RSD.

We are a family here. We listen to each other, offer advice when asked, are free to vent when we are feeling overwhelmed, and freely give support to each member. When someone says something we are intelligent enough to know if it has merit for us as an individual. You may be surprised, but we have been on this board for some time and have managed quite well without being told what or how to think.

I know you have had RSD longer than most of us, but that does not mean you know it all and we know next to nothing.


Regards, Lil

Roz,
I will gladly put my hand up if you think I have been argumentative or insensitive but I have checked all my previous posts and can not find one where I have "picked apart my prior posts". I apologise if I have but I would love to know when I have done so to deliberately undermine you.

If you don't think Artist was being sarcastic to me then that is fine. It was addressed to me so should not impact you at all.

I joined this forum for many reasons, one was to find support from likeminded people and learn how I would best approach my future with this disease.I have witnessed the whole gamut of approaches from people I have met with this disease, many have made me wonder if there was anything to look forward to as they focused overwhelmingly on the negatives and lived minute to minute expecting the worst. I don't want to be that way and I know it does NOT have to be that way!
I have had CRPS for over a decade, I have severe dystonia and am in a wheelchair and yes, I am a reg. nurse of 30 years but I am not insinuating that I am more knowledgable than the rest of you but I do have a fairly adequate knowledge of the anatomy and physiology of the disease.
Must admit I feel pretty disillusioned at the moment, I am uncomfortable thinking I have no credibility with you all. Please remember we are all newbies at one point in time.
Good luck to you all