[GalenaFaolan]

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%

[angelrsd]

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


carrie

[AintSoBad]

Originally Posted by angelrsd

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

[GalenaFaolan]

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

[angelrsd]

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

[Dew58]

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

Thanks so Much!

[DONTTOUCHIT]

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

[AintSoBad]

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

[GalenaFaolan]

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

Originally Posted by angelrsd

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

[GalenaFaolan]

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. :-)


Karen

Originally Posted by DONTTOUCHIT

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