[msdrea83]

Hey everyone, its been almost a year since i've been here. I'm writing a 10 pg paper on RSD and would like to include as much first hand/second hand data as i can. I'd really appreciate it if u could help me out by filling this out.
I have one for friends and family if you know of anyone who'd fill that one out for me too! thanks!
~andrea~

Questionnaire for RSD sufferer


1.

How long have you had RSD?
2.

What was the initial cause?
3.

What treatments/medications have you tried? How effective have they been?
4.

What are your symptoms?
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.

)
6.

What makes it worse/better?
7.

How does RSD affect your daily and social life?
8. Are you experiencing any emotional/psychological effects? If so please explain.


9.

Does RSD affect your ability to work?
10.

Have you been told by others its all in your head? If so by who?
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.

)
12.

What tests were run to find diagnosis?

Name:
Age:
Location:

[ali12]

Hello and Welcome back to the forum!! It's great to have you here again!!

I have filled the questionare in - I hope it is OK, if any changes need to be made, please let me know.

Questionnaire for RSD sufferer


1. How long have you had RSD? I have been suffering from RSD since the 20th March 2007 so about 20 months now.

2. What was the initial cause? The initial cause was an ankle sprain. I fell down some stairs and sprained my left ankle.


3. What treatments/medications have you tried? How effective have they been? What medications haven't I tried??!! So far I have been on Tramadol, Lyrica, Baclofen, Diazepam, Kenadrin, Morphine, Gabapentin, Amitriptyline, Paracetamol, Ibuprofen and many more!! Non of those medications worked and some made me worse. I am now on Ketamine and whilst it is scary knowing that I am on such a strong drug, it does take my pain down from an 8 and a half out of 10 on the pain scale to about a 5 and a half.

4. What are your symptoms? My Pain Management Doctor said that I was the only case of RSD that he had seen that was text-book, meaning that I have nearly all of the symptoms of RSD. The main symptoms I have are the burning pain, allodynia (hypersenstivity to touch), muscle spasms, hair and nail changes, swelling, colour and temperature changes, lesions etc.

5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) I haven't tried any alternative medicine yet has my PM said it probably wouldn't work in my case but we have looked into HBOT.


6. What makes it worse/better?
Grrr, the only thing that makes my pain somewhat better is the Ketamine.

The things that make my pain worse are:
Change in temperatures
Anyone touching my leg
Simple things like wearing shoes and socks
Needles (if anyone puts a needle into one of my RSD limbs, I have severe complications)
Stress and so much more!!

7.How does RSD affect your daily and social life? So much of my life has changed since developing RSD. I used to be a really independant teenager but I now have to rely on my mum to do almost everything for me. I have lost most of my friends because they just don't understand and have had to start at a new school center to try and make things easier. I am now unable to do most of the things I used to do such has have fun at the amusement park etc.

8. Are you experiencing any emotional/psychological effects? If so please explain. Yes!! I think RSD makes everyone emotional. The main emotional factor in my life is caused by friends and family not understanding what RSD is. They seem to think that RSD doesn't exist and would rather pretend that it wasn't happening, rather than face the truth.

9. Does RSD affect your ability to work? I don't work but do go to School (I am in 9th grade) and RSD certainly does affect my ability to go to school and learn. I have only been to school 24 full days since March 2007. If I can manage to go to school, I often find that I have trouble concentrating and/or remembering things which is very frustrating.

10. Have you been told by others its all in your head? If so by who? Before I was initially diagnosed with RSD, I had an Orthopaedic Doctor tell me that all of my problems were psychiactric even though I had many visible symptoms. That caused a lot of problems in our family has my mum didn't know what to believe. It was only when I was diagnosed with RSD, that my mum started realising just exactly what it was and how bad it was. I still have family members to this day telling me that my problems are psychiatric or that I just need to "Grin and bear it and get on with life". It makes me so angry and frustrated.

11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc. We live in the UK (England) so we have the NHS system. Many doctors aren't really willing to prescribe medications although I haven't had too many problems has my doctor knows that the pain and symptoms are real. The only treatment I have been denied is Botox but that was for my own good has my PM felt it could cause more harm than good. The main problem we have over here is when I am in a flare and have to go to A&E (ER) for treatment, the doctors there don't know anything about RSD so aren't willing to try and treat it.


12. What tests were run to find diagnosis? The tests that were run to find the diagnosis were, x-rays (I must have had about an hundred of those!!), MRI scan, Blood Tests and an ultrasound. I didn't have that many tests compared to some people with RSD but that was because my PM Doctor suspected RSD and just did the tests to rule out everything else.


Name: Alison
Age: 13
Location: England, UK

[RSD_Angel]

Questionnaire for RSD sufferer


1.
How long have you had RSD?
6 Years

2.
What was the initial cause?
I had a foot surgery for a Mortons Neuroma

3.
What treatments/medications have you tried? How effective have they been?
I have had many many SGB (satellite ganglion block) to many to count, Rhizotomy, Spinal cord stimulator, Dorsal column stimulator (in RSD leg), 2 5 day epidural blocks/infusions, extreme PT, Botox Injections, Lortab, morphine, vicoprofen, catapress patches and pills, baclofen, ketamine cream, Lidocaine patches,

4.
What are your symptoms?
Extreme Pain and sensitivity, extreme swelling, color changes , nail changes, inversion of the right foot., unable to wiggle my toes since beginning, muscle spasms, deep bone pain, leg gets cold and warm at any whim, mottled skin, decreased bone mass,

5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Bio feedback yes, want to try acupuncture but no one in area does it for RSD pain

6.
What makes it worse/better?
NOTHING!!!!!!!!!!!!!!!!!!!

7.
How does RSD affect your daily and social life?
It has taken my career away, i am a RN and had to quit working, bc treatments kept failing, social life... hard to go out and be able to enjoy life since i am in agony every min of the day with no reprieve of it. I am stuck in my house and have limited friends that understand whats going on with me. Its really hard to find anyone that will understand and it only makes me look more frail and untouchable.

8. Are you experiencing any emotional/psychological effects? If so please explain.
Its been tough since its 6 years of nothing but pain and disappointments and no foreseen able end to this, i have good days and bad. Thank god for a great family and great friends!!

9.
Does RSD affect your ability to work?
yea. I haven't been able to since the day of surgery that triggered my RSD!!

10.
Have you been told by others its all in your head? If so by who?
Oh god yea, prev. doctors and friends and some family members till they seen that it wasn't going away!

11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
I have been denied stronger pain meds bc i was told that they dont work for RSD pain so why try them and get addicted!!

12.
What tests were run to find diagnosis?
I had a SGB block that they said confirmed it and also a total bone scan showed hotspots of RSD

Name: Amber Jones
Age: 30
Location: Greene, NY

[nopainever]

1. How long have you had RSD?
Injury happened in Jan 06 - Actually DX with RSD in Aug 06 = So, almost 3 years!
2.What was the initial cause?
5th Metatarsal fracture of Rt. foot
3.What treatments/medications have you tried? How effective have they been?
I began treatments with lumbar blocks and oral meds, I went through Spinal Cord Stimulator Trial in Dec 06. By Feb 07 RSD had spread full-body! I continue to have 2 procedures per week (cervical and lumbar non-steroidal epidurals - under anethesthesia). I get relief for a couple hours to a couple days at the most.
My current meds:
Cymbalta 60mg - once daily (neuropathic pain, anxiety and depression)
TopAMAX 200mg - twice daily (neuropathic pain)
Fentanyl Patch 100mcg/hr - e.o.day (pain relief)
Roxicodone 30mg - 3Xday as needed (pain relief)
Baclofen 10mg - 2 at bedtime (muscle spasms)
Xanax .5mg - 1 X day (anxiety)

4.What are your symptoms?
I have had every symptom in the book along my RSD road. Currently, I have:
burning, itching, redness, cyanosis, atrophy, muscle spasms/jerks, anxiety, electric jolts

5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Meditation, Topical Oils

6.What makes it worse/better?
STRESS and RSD definitely feed off one another. They love to make you weaker and weaker.

Nothing has made my RSD better. A positive attitude helps.

My epidurals keep me balanced every week. If I go a week without them, I am in too much pain to deal with my responsibilities.

7.How does RSD affect your daily and social life?
Well, I am permanently disabled at 28 years old. I no longer drive. I have a beautiful baby girl that is growing up with a mommy that should be full of life and running around chasing after her!!!

I am dependent on my husband for almost everything, as far as the house goes. He is "Mr. MOM". It makes me sad that its like this...I hardly leave the house, compared to being the "Party-Hardy girl" that I used to be.

8. Are you experiencing any emotional/psychological effects? If so please explain.
Oh Yes! I am normally the most happy-go lucky person in the world. Now I am so depressed, in bed, sleeping, crying, and negative towards the world. Everyone and even myself notice this. So, Sad!!!

I was taking Prozac for the Guilt and Depression that I was feeling and my PM max'd it to 80mg...After a couple months, I realized there was no difference. So, He weaned me off and put me on Cymbalta. I am still not noticing much of a difference.

Plus, I started having major flare-ups everyday that started to cause major panic attacks that I have never had before. So my PM put me on Xanax, and that has really helped, but it is really addicting and I don't need that right now.

In addition to all this drama, I am an emotional roller coaster. I cry all the time. My mind drives me insane. I am always worrying. I always feel guilty about this disease. The meds make me feel like an addict. So, forth and so on....

9.Does RSD affect your ability to work?
I have been permanently disabled and on SSDI for 2 years now
10.Have you been told by others its all in your head? If so by who?
When the RSD spread full-body after the SCS Trial. Two doctors told me literally "It's all in Your Head" and "There's No Way That It's Possible!" and that I would be "1 in 1,000,000"....This was Dr. David Lanzkowsky in Las Vegas, NV
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
I was being seen for 1 year by Dr. David Lanzkowsky of Centennial Spine and Pain in Las Vegas, NV.
He placed a Spinal Cord Stimulator Trial that made my RSD spread full-body. Then, he had the audacity to tell me that there was no way that the SCS could cause spread. This is widely known that is can. I continued to see him because he was still the best Pain Doc out in Vegas as far as I was concerned. I needed meds monthly.
I needed continuous cervical and lumbar blocks and he said "I was the worst Case of RSD that he had ever seen and he didn't know how to help me anymore"...Just let me go...We had to move back to Southern CA, to my original PM that DX me in Orange County, CA.
It was the best thing I ever did, But Yes, I was denied because the doctor didn't know what to do with me..lol
12.What tests were run to find diagnosis?
3-phase bone scan
TENS - unit

Name:Heather Martin
Age:28
Location: Orange County, CA

Huggs,
Heather

[msdrea83]

just wanted to thank those of you who helped me out by filling out my questionnaire for my research paper! My final draft is due next week, so if there's anyone who still has time to fill it out that'd be awesome. I'll be checking for new posts periodically up until about sunday afternoon.

Thanks again!

I'll post my final draft sometime next week.