A Survey Of Mine
 

I thought with all the questions from people about what is rsd, or not, that I'd go ahead and post the results I have so far of the survey I made. I wrote it up a month after I was dx'd. It went from May 2003 to May 2005 before it dried up and no one else helped. I picked it up again last month and is ongoing again.

I really thought with so many of us, millions, I'd get more of a response. Others would be rallying to get those "hard" numbers out to the world. Alas, the apathy of others kick me in the teeth. LOL Ok, Here are the results with all 65 people who have filled it out so far.

If you would like to fill it out, please PM me with your email address and I'll send it right out to you.

Female: 89%
Male: 11%

Age at dx:

1-9 yrs: 1%
10-19: 8%
20-29: 18%
30-39: 40%
40-49: 22%
50-59: 11%

Time between onset and dx:

1-3 mo: 32%
4-6 mo: 28%
7-9 mo: 11%
10 mo-1 yr: 17%
2-4 yrs: 8%
10+ yrs: 1%
N/A: 3%

How got RSD:

Fracture: 8%
Fall: 20%
Surgery: 20%
Banged into an object: 3%
Had object fall on them: 6%
car accident: 15%
Sprain: 5%
Other cause: 23%

Limb started:

Cold: 77%
Hot: 18%
Both: 3%
N/A: 2%

Spread: Yes: 91% ; No: 9%


How long before spread:

1-3 mo: 12%
4-6 mo: 12%
7-9 mo: 5%
10 mo-1 yr: 25%
2-4 yrs: 18%
5-7 yrs: 5%
8-10 yrs: 6%
N/A: 17%

Spread type:

Mirror: 37%
Same: 46%
Independent: 3%
N/A: 14%

Had PT: Yes: 95% ; No: 5%


PT:

Helped some: 32%
Made worse: 51%
No change: 12%
N/A: 5%

Abdominal pain: Yes: 45% ; No: 55%

Atrophy: Yes: 80% ; No: 20%

Arthritis: Yes: 60% ; No: 40%

Back pain: Yes: 85% ; No: 15%

Bruising: Yes: 80% ; No: 20%

Cardiac disturbance: Yes: 34% ; No: 66%

Depression: Yes: 89% ; No: 11%

Had depression before: Yes: 14% ; No: 86%

Dizziness: Yes: 82% ; No: 18%

Discoloration of skin: Yes: 97% ; No: 3%

Facial Pain: Yes: 38% ; No: 62%

Falling down: Yes: 75% ; No: 25%

Hair loss: Yes: 58% ; No: 42%

Hearing impairment or disturbance: Yes: 43% ; No: 57%

Headaches: Yes: 75% ; No: 25%

High grade fever: Yes: 8% ; No: 92%

Hot flashes: Yes: 72% ; No: 28%

High blood pressure: Yes: 35% ; No: 65%

Immune system: Yes: 58% ; No: 42%

Itching: Yes: 80% ; No: 20%

Jerking of limbs: Yes: 95% ; No: 5%

Limited Mobility: Yes: 95% ; No: 5%

Low blood pressure: Yes: 45% ; No: 55%

Low grade fever: Yes: 52% ; No: 48%

Memory problems: Yes: 94% ; No: 6%

Menstrual difficulties: Yes: 34% ; No: 34% ; N/A: 32%

Migraines: Yes: 60% ; No: 40%

Mood swings: Yes: 89% ; No: 11%

Muscle spasms: Yes: 100%

Osteoporosis: Yes: 32% ; No: 68%

Rash: Yes: 72% ; No: 28%

Severe fatigue: Yes: 92% ; No: 8%

Sensitivity: Yes: 95% ; No: 5%

Sensitive to: Touch: 26% ; Multiple: 69% ; N/A: 5%

Skin lesions: Yes: 31% ; No: 69%

Sleep problems: Yes: 100%

Stomach ulcers: Yes: 18% ; No: 80% ; Unsure: 2%

Sweating: Yes: 89% ; No: 11%

Visual problems: Yes: 68% ; No: 32%

Weight gain: Yes: 72% ; No: 28%

Weight loss: Yes: 29% ; No: 71%

Alternative therapy: Yes: 38% ; No: 62%

Nerve blocks: Yes: 85% ; No: 15%

Any Help: Yes: 14% ; No: 40% ; Limited: 31% ; N/A: 15%

Other Conditions: Fibro: 15%
Myofacial Pain Syndrome: 8%
Bursitis: 5%
Chronic Fatigue Syndrome: 6%
Thyroid: 6%
Raynaud's: 5%
Other: 25%

thanks for posting that was wondering how many you would get to answer i sent to everyone i knew


carrie

I just got it,
and did it!

I think everyone with RSD should!
Well, not sure about Paula....

Thanks for the experience to do that!

pete
asb

LOL Pete. Def not her!!!

So far Carrie, I've had 10 answer and send, including you and also you Pete. :-D Thank you both.....again. I still have a bit of difficulty understanding why there is so much apathy?? You know, the I don't wanna do it thing. Everyone complains the word need to get out. More attention focused, education about rsd, etc, etc, ad nauseum. Yet, someone tries to do something and barely anyone responds. It hurts that so many want yet won't DO. Sorry to sound like I'm ranting. I'm not....it's just 6 years worth of disappointment. Back when I drew it up I was also collecting stories, the stories of rsd'ers, for a book. Needless to say the few I got wasn't enough for a book, it's still on hold. 66 people now total, so according to me, RSD is not just rare, it's SUPER Rare!! ROFL At this rate, I will not get the book written, nor focus on us, I will be dead. :-)

Ok, with those pleasant thoughts....off to outline article #2 of the day. I just might get them both done tomorrow and turned in! I feel good!

Hugs,

Karen

yea i know how ya feel.. its weird that way .. im just glad that i could help ya in something ;)

did you post it on twitter to the rsd folks there?

carrie

hi
 

Great post..I would love to do the survey. Could u email it to my homepage email?

Thanks so Much!:hug:

Galena I PMed you with my address, I just thought of another question I wanted to ask you beore I fill out the poll.

When I answer for symptoms like Memory Loss or say Fatigue are you asking from JUST RSD or from the meds because I think the drugs are some of my symptoms , I know its probably obvious but I dont want to mess the poll up with incorrect info:wink:

It's Got plenty of room for comments!

If ya don't do it, I may not love ya!
well....
We'll see?

pete
asb

Nope but now ya mention it, I'll skip over and do that, as soon as the "down for maintenance" crud is done!! LOL

That would be included so put down yes. It's all part of rsd and even without the meds messing with our heads we deal with memory problems and fatigue. :-)
:hug:

Karen

yea i lost my car again the other day and my car doesnt have the keyless entry so im screwed when that happens i just have to keep looking LOL yea that is RSD and meds its a combo thing

yea i tried to post on twitter i forgot about the maintenance
and it didnt work out well LOL
did you get headway on article #2
carrie

I got one more article accepted this afternoon, should be published tonight, no later than tomorrow. I had to resubmitt one due to the word "study" which should have been "survey", so I fixed it and resubmitted. Hopefully it'll be up before the weekend is out. Then, I have 3 more I'm working on right now for this month. It's mental health month and teen pregnancy month. The list of what awareness month it is is verrrrry long!! These are 2 I can write about. So, I have to get them written up and turned in. Hoping I can make some headway with these tonight and have them in by Sunday at least.

RSD brain strikes again! LOLOL Sometimes I really feel it conspires against me.

Hugs,

Karen

girl you are busy as a bee i swear. !! i thought this month was ruff for me sheesh!!!!!
yea i swear that rsd does conspire against me all the time. if i make plans to do something there goes the RSD or like losing the car or god forbid my debit card i do that all the time and most the time its right in front of my stinkin face LOL

how are the kids? ready for the summer and them to be home 24/7 im not i swear they should go to year round school LOL

2 weeks and counting till they get out

carrie

LOLOL Summer doesn't bother me. My daughter is very quiet, always has been. When she's home, she sometimes scares me half to death because I forget she's in the house and then she pops up behind me! We both have a good laugh because I blurt out, OMG, I forgot you were home! ROFL

All the kids are doing good. My son is still safe and counting the days(months)till he comes home from Iraq. He and his wife celebrate their 1st wedding anniversary this month. :-D Last I heard he will get 2 weeks leave and they'll celebrate together.

The oldest daughter is good and belly is growing! I can't believe in a little over a month my baby girl is going to give me a grandson. She's so over being pregnant and the "end" can't come soon enough for her. LOL

My youngest son, who is now 18, is still, well himself. Meaning Trouble and a PITA! :-D I still love him though.

Hugs,

Karen

Karen,
 

Diana and I got on the subject of a book for RSD. There are several out there. Dr. Hooshmand's tells of treatments and there is one that a friend from the forum sent me and it only told of stories of the people with RSD. I gave it to another friend with RSD and she found it to be helpful for her husband that has it.

There is something missing in the books that are written with stories. I don't know what it is but it seems like they just can't get across how bad RSD is. Too when a person writes their own books about illnesses what I have noticed is that people want that happily ever after ending and we don't have that to give them. I don't want to give it to them either because with RSD it isn't a fairy tale.

It's just hard I think to explain the devestation that RSD causes people. Since a lot of us look normal then it makes the story even harder for people to believe or understand from our pictures unless a lot of atrophy is involved.

Ada

Have you heard of this one, I found it to be a very helpful book!
http://www.amazon.com/Living-RSDS-Sy.../dp/1572243554

karen

yea i wish that mine were quite. my oldest who is 9 can be quite but if my youngest who is 6 is here its like world war 3 here. they have gotten into these huge fights lately and you can imagine my reaction LOL

yea i can remeber the end of pregnancy and was ready for it just to be over LOL send be pics when he is born

im glad that your son is safe . its still a very scary time over there . i will keep him in my prayers..

carrie

THANKS for that, Marleen!

Is it a good book to share with family?
(easy reading, or, will it just end up collecting dust?)
Just looking for your opinion...
Thanks again!


pete
asb

You're welcome! :D

You definitely need to read it! Definitely! Whether it will be good for others who don't have RSD, I don't know. If they don't understand it now while you are explaining it in simple terms, then I doubt you can shove a book in front of them and make them read 238 pages.

I have it with me now and it's full of sticky notes and pencil marks from where I have read important, to remember bits. I have to say, it is the most comprehensive work that I have read about RSD. There are a number of personal stories in it as well. Sometimes it can get a tad "medical" but I don't find that at all disturbing. Chapter 7 for instance deals with RSD and "changing family dynamics" and I have marked this paragraph because it appealed to me and stated what I felt perfectly, "There are many books and articles that claim severe illness is a journey that can lead us to the true meaning of life. They say that illness is a gift we should be grateful for because, if we follow the writer's advice, we will be magically transformed into a new and beautiful spiritual whole. Let me just say that I feel many things about having RSDS, and none of them contains the word "gift." I would gladly have foregone the whole experience and lived a healthy, normal life. However, I do not have that choice."

Definitely a recommendation from me!

It's written by Linda Lang & Peter Moskovitz, MD and the money that is made from it is going to the RSDSA.

It is from 2003, and I don't think it has been updated with new research, so you have to keep that in mind.

I have a number of other recommendations besides that book, books on pain, if you're interested. None of that new-age crap about dealing with and overcoming pain, though (sorry if others believe in that stuff).

Karen if you need to add any questions, you can always make a poll here.

To be sure that only people with RSD answer, you can make it to show the names.

Thanks curious! Hadn't thought of that. :-) I know of one that I left out. I'll use the suggestion for the "missing" question, in a little while. LOL

Hugs,

Karen