Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-09-2013, 07:46 PM #41
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I didn't realized there was such controversy over this. I'm getting stressed out more by seeing all of you get stressed out. I feel responsible and I'm sorry. That wasn't my intention.
I'm sorry Renee - please don't get stressed out. I know I'm not. Not many things on a forum like this is without controversy. From SCS, LSG, SGB, Blood Draws, Accupuncture, Neurontin.. etc., bring up very different opinions or personal concerns regarding how it affected the individual. That is not to say that any of these therapies/treatments etc., are bad it's just that we all experience things differently. I like to hear differing views and reasons for them.. even if I don't always agree because sometimes through the what is being offered my views or thoughts may change. It is hard to hear the compassion or true feelings when reading the screen and I do hope that is kept in mind before offenses are taken.

Anyways.. I'm glad you brought this up because I'm sure you aren't the only one thinking about it right now as fall sets in.

Have a great night.
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Old 10-09-2013, 08:06 PM #42
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Thanks Tessa.
But please don't be sorry. We're all entitled to our own opinions and it's seems true that different procedures affect everyone differently. Especially with this crazy disease. I know someone who said accupunture put her rsd into remission. My accupunture made my rsd spread. And I like hearing different opinions too because I may also change mine depending on what I read. I'm still learning about this disease and know there's still so much I need to learn. That's why I'm glad I have all of you to share your opinions and experiences. I just don't want everyone to get upset. It's not good for our health's especially with rsd. I'm glad you're not stressed and hope everyone else is not stressed too. We're all in this together and hopefully maybe by collaborating our thoughts and experiences together, maybe we can find a cure for RSD. Wouldn't that be so great! Well anyway, thanks for your kind words and thanks to all of you for your kindness too. Have a good night and take care.
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Old 10-10-2013, 07:00 AM #43
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I haven't misunderstood the information or advice such as the FDA and other additional excerpts posted. I just don't have the energy to keep posting and explaining what these different bits of text actually mean and why they are published and written in the way they are.

Everyone has to make their own mind up based on whatever they decide to believe and whatever sources they regard as credible to give them the information they think they need.
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Old 10-10-2013, 08:06 AM #44
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Renee, don't apologise for asking a perfectly valid question! You haven't created any problem, so don't feel bad.

Neurochic, thanks for your explanations and clarification. I've understood what you said, and understand the effort behind it, and I appreciate that repeating yourself gets old

Zookester, I am wary of trying to explain myself further in case you misunderstand me again, but I appreciate that you didn't intend to sound aggressive over this. Text is notoriously dodgy ground when it comes to differences of opinion.
...

I really want to clear the air here - I've never said my way was the only way, nor decried someone else's point of view. I've debated many ideas and theories on these boards, and hope i can continue to put forward my point of view. The day we all start worrying too much about how someone might react, and let it stop us expressing our view, is a sad day.

I think where things can get heated is when one person has a point of view that another thinks is plain wrong. Each has their own reasons, and should be able to express them, but neither party should become defensive or aggressive because others don't agree. It's especially difficult when the subject is scientific - I've had many an argument with my dad about global warming! He firmly disbelieves it, and we've had several heated discussions where I present the science and evidence to him and he's flatly denied it! (BTW I'm not comparing global warming to this debate and implying anything about the jab )It's easier there, because we can see each other's body language, and we know we have affection and respect for each other no matter what. Here I think however nice we try to be, or our intentions, we don't really know each other that well, and perceived slights or insults can be taken from an innocent comment, especially when someone is under stress, as we all are...

I'm a peaceable lass, honest and I like having something to think about and debate other than the pain and boredom and rubbish daytime tv....

Take care everyone and have a good day.

Bram.
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Last edited by Brambledog; 10-10-2013 at 11:09 AM.
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Old 10-10-2013, 08:54 AM #45
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Just stepping in here to remind everyone that all members have a right to express their opinion here, and we ask others to respect that.
We do not require "FDA approval" for opinions
Different people respond differently to the same thing, so it really is up to the individual to do their research and make their own decision, in consultation with the physicians that they feel comfortable with.

Just because someone is against vaccination does not make them a "quack" and it is rather flaming to say that.
Similarly, those that choose to vaccinate, are doing so based on their own choice.

The importance of these discussions is that all views should be able to be presented without anyone negating the right of the individual to express their view. That way anyone reading can see the varied opinions and investigate further to make their own informed decisions

Please apply this going forward in this thread. If the topic becomes argumentative in a negative way, we will have to close it.

thanks
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Old 10-10-2013, 11:02 AM #46
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Originally Posted by Chemar View Post
Just because someone is against vaccination does not make them a "quack" and it is rather flaming to say that.
Hi Chemar. I just wanted to clarify what I said. In my post I said: "Please don't take offense to this Tessa, but I think Dr. Mercola is a quack. Not because of this story, but because of things he has done over the years, claims he has made, etc."

I clearly said that I think he is a quack based on things he has done over the years and claims he has made. It has nothing to do with vaccines. I tend not to believe things that come from him because of his past history and bogus claims. I respect everyone's opinion and decision to vaccinate or not to vaccinate.
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Old 10-10-2013, 12:12 PM #47
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I wasn't only referring to your post about the doctor...there were other "quack" references in other posts as well

If anyone wishes to discuss my comments further with me, please use PM and please do not post here as per the guidelines. Thanks
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Old 10-12-2013, 05:22 AM #48
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Originally Posted by RSD RENEE View Post
Is anyone afraid to get a flu shot? I am. I used to always get one until I got RSD. Now I afraid of spread. Has anyone else gotten one after getting RSD and been okay? I'd like to get one, but don't know if I should because of this.
Hi, I've had RSD since 1996, I've had the flu shot every year since 1992. I got flu really bad the winter before & doctor advised me to have it. I also get the one for pneumonia, had that twice now. I've never had any problems with either, but the doctor always puts a numbing agent on first. I'd be more worried about getting the flu again than the jab
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Old 10-12-2013, 09:35 PM #49
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Originally Posted by Neurochic View Post
It is exceptionally risky for any pharma co to carry out any clinical trials of any drug in pregnant women. The ability to obtain insurance against the liabilities that arise if something affects unborn foetuses is minimal/nil. Post-thalidomide, drug companies just won't take the risk of carrying out clinical trials in pregnant women. The liabilities can be massive when you add up the lifetime costs of care for a large number of affected individuals with reasonable life expectancy. Because nobody is prepared to risk financial and reputation all suicide carrying out trials in pregnant women, however minuscule the perceived risk is, such medications are never licensed or approved for use in pregnant women. That isn't the case with some older medications or some injectable vaccinations which are manufactured from deal viruses. It is a commercial issue rather than one relating to the vaccine. I have some experience with clinical trials regulation.

As far as transfer of the virus is concerned, need to understand the difference between virus shedding/transfer and actually infecting someone else with flu. These are worlds apart and what the document you referred to explains is that whilst evidence of attenuated virus shedding and subsequent transfer to another person has been recorded, they have not seen any evidence of a vaccinated individual "infecting" another person with the flu virus and than person becoming symptomatic as a result. Essentially what they are able to pick up is evidence that the attenuated virus cells are detectable by lab testing in the body of another person.

Further down in that same document you referred to it does explain that you cannot get flu from the attenuated nasal vaccine and it also explains why. I appreciate that you have very firm views about vaccines and I am merely answering the questions that you asked in (what seems to be a slightly confrontational way) but I am not trying to influence your opinion.
I think pretty much everything that Neurochic has stated is consistent with the literature. I have no real disagreement with anything that she has shared. Thanks NC. I would just add the obvious for you upper extremity CRPS'ers, don't stick the needle in your symptomatic arm (goes without saying, I think)! My PM doc mandates a thigh injection, actually.
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Old 10-13-2013, 10:51 PM #50
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I'm not getting one. Not because I worry about spread or flare though.

I've never gotten one ever.
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