[msdrea83]

Ok so here are all the answers to the questionnaires filled out by those with RSD, there’s quite a few. I have removed all the names and ages and locations of everyone, I put mine first and it’s the only one with a name on it. I hope this can give us all a little more insight to how each other feels and what we all experience with the lovely condition haha.

Questionnaire for RSD sufferer

1.How long have you had RSD? It’ll be 6 years this dec.
2.What was the initial cause? Possible fracture to my left elbow
3.What treatments/medications have you tried? How effective have they been?
Stellate ganglion blocks, lumbar blocks, bier blocks, lidocaine infusion, SCS, various opiods, narcotics, anti-seizure, anti-depressants, duragesic and lidoderm patches, muscle relaxers, oral ketamine, physical therapy. SCS made me worse, 1st bier block relieved pain almost 90% for about 2 months- 2nd one was not effective. Lumbar blocks have helped a little for my foot, sympathetic blocks have kept pain more manageable in my right arm- left arm they never helped. Most of the medications I have been put on didn’t help. Others have helped for a short period.
4.What are your symptoms? Constant burning like you’re on fire inside your body, stabbing, crushing, throbbing, stabbing pains… muscle spasms that get so bad in my arms and hands and fingers that its like they’re having seizures, muscle cramps so bad in my hands that they get completely stuck in like a “monster hand” position or fingers cramp together, hypersensitivity, color changes, easily bruise, temperature changes, swelling, loss of muscle and movement in hands, fingers and arm, brittle nails… um… depression… severe insomnia- I can go like 4 days with out sleeping cause of the pain
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Tried acupuncture, holistic med, biofeedback, MIT light, laser light therapy…. None of them worked
6.What makes it worse/better? Heat/wet heat, rest and the right medication make it better- I was in physical therapy various times to help regain mobility and strength and reduce my hypersensitivity. Touching, over using, stress, changes in the weather, anything from clothing to a breeze can increase the pain
7.How does RSD affect your daily and social life?
I try to live as “normal” as possible…. Pre RSD I was super social and kept my life busy, was in college full time, working full time, would go out almost every night with my friends to a party or dancing at a club, or we’d have bbq’s or take little road trips to mexico (I was living in new mexico at the time)…. Then when I got hurt (was living in Kansas at the time) I got fired from several basic jobs, cashier, receptionist… had to stop going to school, would hurt so bad I’d just stay in bed and cry 24/7 for days, would get so depressed on top of hurting I wouldn’t leave the bed for anything for like 6 weeks… as I’ve learned how to “control” the flare ups and have gotten “used to” the pain over the years, along with moving back home, I have gradually begun to realize that I can’t let it rule my life and prevent me from doing the things I want to. I might have to readjust how I’m going to do them or put them off, but I am always determined to do it. My friends are wonderful and understand as best they can that I can’t always go out, or that I might have to bail out at the last minute because I’m just to worn out from doing simple things all day, or cause I’m stuck in bed cause of the intensity of the pain. I used to be a dance teacher and I can’t do that even more, its even hard to just assist in classes. Hard to cook, clean, cut food, open things like doors, or hold cups, pour drinks… my life got picked up in a hurricane and spit back out. And now I’m still trying to piece it all back together as best I can.
8. Are you experiencing any emotional/psychological effects? If so please explain.
of course!!! My emotional are a huge rollercoaster, RSD is said to affect the part of the brain that deals with emotions…. One min I can be happy and excited, and if I drop something and break it I’ll feel like I’m useless and I can’t do anything right at all anymore, so then I’ll start crying hard and get mad and will lock myself away and throw things… turn music up loud so nobody can hear me… dancing used to be my emotional release, so now I’ve turned to becoming addicted to music as my vice.
9.Does RSD affect your ability to work?
Well considering I’ve been fired from 2 jobs, I’d say yes. I began filing for disability as soon as I got diagnosed, I was denied three times and had to appear in front of a judge 2 years later and was finally awarded it in October of 06.
10.Have you been told by others its all in your head? If so by who?
My cousin told me he was sure it wasn’t that bad, when I was crying hysterically on the phone yelling at him because I was upset that he hadn’t apologized and didn’t believe me.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
In the emergency rooms I have been denied treatment. They refused to relieve my pain, thought I was just some young adult wanting drugs, k well I guess I did but I had a legitamit reason! The doctor then went on to force my arm straight, which not only made me hurt worse from her grabbing my wrist and elbow, but from forcing it straight when I was unable to straighten it from a 90 degree angle.
12 What tests were run to find diagnosis?
x-rays, mri, ct scan, physical exam, nerve conducting test, sympathetic block

Name: Andrea Wilke
Age: 25
Location: Ben Lomond, Ca

Querstionnaire for RSD Sufferer


1. How long have you had RSD?
Since November 2000
2. What was the initial cause?
A blood test injury that damaged the median nerve in my right arm, caused the rsd in my hand, arm and shoulder. A white-tail spider bite in my right leg (that got infected) caused the rsd to spread to that leg and foot
3. What treatments/medications have you tried? How effective have they been?
Anticonvulsants, Antidepressants, opioids, anti-inflammatories, muscle relaxants, nerve blocks, 5 ketamine infusions, magnesium infusion. Some medications have given me no relief, others have worked for a while but not long term, I had one ketamine infusion give me 10 months of lower pain levels, but others only gave short term pain relief
4. What are your symptoms?
Constant and chronic neuropathic pain, burning pain, muscle atrophy and dysfunction (including cramps), deep bone pain, skin changes, temperature changes, swelling of arm and leg (And Hand and foot), fatigue, insomnia, migraines
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
no, only TENS machine (with no benefit), hydrotherapy pool sessions
6. What makes it worse/better?
Worse- Cold weather, using the limb (such as walking etc). Better- heatpack, massage, opioid medications, rest
7. How does RSD affect your daily and social life?
My pain levels are unpredictable, so I may agree to be somewhere for something, then have to cancel on the day. I can't socialise at night as my pain levels are worse then. I can't drink alcohol with my medications, I get fatigued very easily so have difficulty if I have a busy day, I can't do my normal household and parenting tasks, so my husband has to do most of them.
8. Are you experiencing any emotional/psychological effects? If so please explain.
I get frustrated that I can't do what I'd like to do, I get depressed, I feel a total lack of control over my own life, I have trouble separating myself from my rsd (ie I'm not the cause of the problems, my rsd is, but its in my body so I shoulder the blame and guilt
9. Does RSD affect your ability to work?
I haven't been able to work since my rsd first began, as I am trained in administrative positions, which I have trouble doing now I have less use of my right hand.
10. Have you been told by others its all in your head? If so by who?
I've had family members who don't understand the condition, tell me that you just have to deal with it and its not as bad as I make out. I've had doctors tell me that rsd doesn't exist.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
No, because we have a different health system here in Australia so you don't need approval for things, most doctors here are willing to give most things a go. In ERs, I've had to tell them my situation and make sure they acknowledge that my treatment might be different because of my rsd.
12. What tests were run to find diagnosis?
nerve conduction tests, ultrasounds, physical examinations

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, neurontin, lyrica, ammitriptyline
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





1.How long have you had RSD?
ALMOST 5 YEARS
2.What was the initial cause?
ANKLE FRACTURE, 6 SURGERIES TO CORRECT
3.What treatments/medications have you tried? How effective have they been?
PHYSICAL THERAPY- ineffective

DESENSITIZATION THERAPY- ineffective

MULTIPLE COMBINATIONS OF ANTI-SEIZURE, ANTI-DEPRESSANT, ANTI-MALARIA, ANTI-INFLAMATORY, OPIODS, AND ANESTHETICS.- moderately effective

LIDOCAINE INFUSIONS- ineffective

STELLATE GANGLION AND LUMBAR SYMPATHETIC BLOCKS- effective, reduces pain 25-50% for 2-3 months, I do a series (1 a week of each for three weeks) every three months.

SPINAL CORD STIMULATOR (for leg only, ineffective in arm)- effective, reduces pain and increases temperature in limb up to 40%. Lead revision required in January.
4.What are your symptoms?
EARLY ON; BURNING, SEVERE PAIN, EXTREME SENSITIVITY, HOT TO TOUCH.

AS TIME PROGRESSED LIMB HAS TURNED VERY COOL, PURPLE, EXTREME BONE PAIN. SENSITIVITY IS STILL PRESENT BUT NOT AS SEVERE.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
ACUPUNCTURE-INEFFECTIVE

I WOULD LIKE TO TRY OTHER ALTERNATIVE TREATMENTS BUT INSURANCE DOES NOT COVER THEM AND I DO NOT HAVE THE FINANCIAL ABILITY TO DO THAT RIGHT NOW.
6.What makes it worse/better?
MEDICATION, BLOCKS, RESTING, KEEPING WARM, KEEP LIMB MOVING
7.How does RSD affect your daily and social life?
BEFORE RSD, I WAS VERY SOCIAL, ALWAYS OUT AT SCHOOL, WORK , OR HAVING FUN. I AM NOW HOME ABOUT 75% OF THE TIME. INSTEAD OF GOING OUT WE MAY HAVE FRIENDS COME OVER FOR DINNER SO I CAN KEEP MY SHOES OFF, OR ELEVATE MY LEG. I WORK FROM HOME, OFTEN TIMES FROM A LAPTOP IN A RECLINER.

I AM ENGAGED, AND REQUIRE HELP FROM MY FIANCEE WITH THINGS MOST PEOPLE MY AGE CAN DO ON THEIR OWN. FROM GROCERY SHOPPING TO HOUSEHOLD CHORES. IF WE GO OUT SHOPPING OR TO A SPORTING EVENT, IT REQUIRES EXTRA PLANNING TO AVOID EXCESSIVE WALKING OR STANDING.
8. Are you experiencing any emotional/psychological effects? If so please explain.
WHEN PAIN IS SEVERE OR IN A FLARE, I EXPERIENCE ANXIETY
9.Does RSD affect your ability to work?
YES, I USED TO BE A PHARMACY TECHNICAN, AND WENT TO COLLEGE FULL TIME PURSUING A DOCTORATE IN PHARMACY, NOW I WORK FROM A HOME OFFICE, PART TIME.
10.Have you been told by others its all in your head? If so by who?
NO
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
NO
12.What tests were run to find diagnosis?
EXAM, NEUROLOGICAL TEST, SYMPATHETIC BLOCK, SENSORS TO MEASURE TEMPERATURE DIFFERENCE.

Questionnaire for RSD Sufferers


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.



Questionnaire for RSD sufferer


1. How long have you had RSD? 7 years
2. What was the initial cause? soccer injury in 6th grade (yes soccer) haha
3. What treatments/medications have you tried? How effective have they been? haha a lot!...i had 4 epidural blocks in grade school, then in high school i had 2 epi's 2 tunneled epidural cathaders, and 1 nerve ablasion. Lots of narcotics, tramadol, percased, fetynol patches, neurontin, and and anti depressant i cant remember the name of. Not effective at all
4. What are your symptoms? They were a lot of pain, burning sensation to cold, cramping, swelling, discoloration
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) YES!
6. What makes it worse/better? The alternative medicine
7. How does RSD affect your daily and social life? When it was bad i couldn't do anything, i would have to have help getting off my couch to go to the bathroom because i could not move it. Now it has changed who i am and what i'm going to do with my life.
8. Are you experiencing any emotional/psychological effects? If so please explain. Yes, i was very suicidal, and very depressed. (if u want me to go into more detail just ask)
9. Does RSD affect your ability to work? I was not able to go to school when it was bad.
10. Have you been told by others its all in your head? If so by who? yes, a doctor at shriners childrens hospital, after he grabbed my leg (the effected limb) and shook it.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.) no.
12. What tests were run to find diagnosis? i can't remember the name, but they put little needles in the skin for the temperature...i hope u know wat it is because i cant remember for the life of me
Questionnaire for RSD sufferer


1.How long have you had RSD?
Going on 3 yrs
2.What was the initial cause?
Broke both ankle bones.
3.What treatments/medications have you tried? How effective have they been?
About 35 nerve blocks, they worked very well for a while then stopped working. Trial pain pump, hated it. I now have the pain pump and it works very well..
4.What are your symptoms?
Severe pain, swelling, skin is molting, turns blue, cold, hot. Tingling, numbness, did I say huge pain?
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
I have tried Chiropractic care, but can't tell if it helps or makes it worse. I also take a huge amount of vit C, D, and multi.
6.What makes it worse/better?
Staying off my foot (but who wants to live like that). Soaking it in warm water and Epsom Salt works very well. Staying out of the cold, not letting any thing cold touch it. Keeping a POSITIVE attitude for sure.
7.How does RSD affect your daily and social life?
I can never make plans and sometimes people get sick of hearing I can't make it.
8. Are you experiencing any emotional/psychological effects? If so please explain.
I hate that I can't play softball any more. It makes me very sad that I can run and climb mountians with my son. Things seem to bother me more, and I cry in a heartbeat it seems.
9.Does RSD affect your ability to work?
Yes, very much so. I can't stand all day so that cuts out a lot of things. I can't sit to long and that cut outs the other things.
10.Have you been told by others its all in your head? If so by who?
Oh yes, when I was dealing with my law suit the other side told me because my Dr. told me I had RSD I think I have RSD. My entire family except one brother thinks there is nothing such as RSD, and there must be a cure for it if there was such a thing.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
No I have not, I am very lucky in that department.
12.What tests were run to find diagnosis?
Bone scan and that is about it, I did have one Dr. try to do a nerve conduction test but my pain Dr. said "no way" Although the bone scan did show up with bone loss and hot spots, this is nor is there a sure way to diagnose RSD.




Questionnaire for RSD sufferer


1. How long have you had RSD?
2 Years
2. What was the initial cause?
A light stumble in high heels lead to a sprain and then RSD
3. What treatments/medications have you tried? How effective have they been?
Currently taking Catapres, Neurontin (900g daily) & Nexium as the rest ruins my tummy! I take Di-gesic for the yet-to-be-explained pain in the rest of my body.
It's likely I'll be going for a ketamine infusion, this is dependent on the test for rheumatoid arthritis.
4. What are your symptoms?
Pain from about half way down my calf through to my toes. Swelling, pins & needles, sharp pains, stabbing pains, aching, burning...pretty much all the types of pain. Had a hip op on left hip in April 08 for an inflammation issue, still having extreme joint pain that is now right down my left leg from the waist down. Suffered a dislocated jaw in August 08, still inflames randomly for no reason. Currently have severe pain in both wrists and hands, shoulders and elbows. Doctors suspect I have rheumatoid arthritis as well as RSD but I'm still having tests as none have been positive.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Tried acupuncture for my right foot/ankle. Felt relief directly afterward but did not last more than a couple of hours. The treatment itself was painful.
6. What makes it worse/better?
Movement makes it worse, or pressure. Cold exacerbates things. Immobilising it helps but can be days before it's relieved if it's a bad flare up. Neurontin has helped but it's been so long since I started taking it that I don't have an accurate idea of how much worse the pain is without it anymore.
7. How does RSD affect your daily and social life?
I can't work anymore. I can't make plans for myself and I'm completely dependent on others for my basic needs. Going out is always painful and tough and I can't sit up on hard chairs for very long so that really limits what I can do. People don't understand the uncertainty of the diagnosis and don't understand why I might be able to do something one day and not the next. People don't understand why I don't know what's going to happen and when/if I will get better. I have lost touch with a lot of friends, I find that every 6 months or so people realise they have forgotten me and contact me again, so it's nice to know I'm still cared about, it hurts not to be able to go out and be involved anymore, I feel like a charity case. I get frustrated when what I want to do is really simple, like go to a restaurant and yet the pain still stops me. Medication and pain effect my ability to concentrate and small tasks seem huge. I feel like my life is just stopped, I can't make plans for the future, or for what I would like to do with my life because I don't know what I will be capable of. I have very little to look forward to other than beating this stupid pain.
8. Are you experiencing any emotional/psychological effects? If so please explain.
It's a rollercoaster. The fight not to sink into depression is constant. I know that no matter how bad things get, there is always a point where you make a decision to give into the despair or accept reality and stay sane. So far, I've managed to stay sane but it's hard to tell how I'll feel from one moment to the next. It's really hard for my boyfriend to have to watch me in so much pain and not be able to do anything and that brings a sense of guilt with it too. I was always fiercely independent and being reliant has gnawed away at my confidence and frustrated me to no end. My condition keeps getting worse and just as I learn to cope with one thing, it gets worse. The pain after every little thing I try to do feels like punishment, it's hard to fight of the sense that I must have done something to deserve this...even though I know that's not rational. Sometimes I feel like nothing I do matters or counts and that I am just going to end up suffering more, those are the feelings I fight hardest.
9. Does RSD affect your ability to work?
I was working admin and slowly had to cut back from full time to part time and then nothing as my condition worsened.
10. Have you been told by others its all in your head? If so by who?
No one has ever dared say that to me in so many words, but I have had that attitude from people, including a well respected ankle surgeon who told me I didn't need crutches and to just walk out of his office after he couldn't see damage on an MRI. Have had to fight the idea within myself that it's all in my head, when you get test result after test result that is negative, it's hard not to think that maybe it's psychosomatic.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
No
12. What tests were run to find diagnosis?
Um, pretty much they tested for everything else...x-rays, MRI, blood tests...and they were negative. I was diagnosed from my history of symptoms and the fact that my foot was stone cold for no good reason...the accident happened in Nov 06, I was diagnosed in Feb 07. I was lucky to find a sports doc who recognised RSD, I had seen MANY doctors before this and been put in a cam walker for a month.






Questionnaire for RSD sufferer


1.How long have you had RSD? 3 years
2.What was the initial cause? putting on a shoe
3.What treatments/medications have you tried? How effective have they been? neurontin, valium, methadone, Coenzyme Q10, grape oil, codliver oil, thats all i can remember but none of them did anything to help me.
4.What are your symptoms? Pain, swelling and discoloration throughout my body, blury vision
5.Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) biofeedback (no help)
6.What makes it worse/better? Music, walking, activity in general makes it worse, extensive therapy and streaching makes it better
7.How does RSD affect your daily and social life? I missed more than 8 weeks of school, nobody wanted anythign to do with me, I could hardly take care of myself
8.Are you experiencing any emotional/psychological effects? If so please explain. I was depressed at first but quickly moved on
9.Does RSD affect your ability to work? yes
10.Have you been told by others its all in your head? If so by who? Yes, doctors, teachers, "friends", strangers
11.Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.) ER
12.What tests were run to find diagnosis? process of elimination ... X-Rays, MRI, CT, bonescan



Questionnaire for RSD sufferer


1.How long have you had RSD?
-10-11 years
2.What was the initial cause?
-Lumbar Puncture searching for Spinal meningitis.
3.What treatments/medications have you tried? How effective have they been?
-Dilaudid, Lexipro, Lyrica, Neuronton, Morphine, many other medications that did not work well.
Dilaudid is the only thing that semi-helps. Lexipro helped my stomach for a little while then stopped lyrica helped but had major side effects, I dont like the side effects of neuronton and allergic to morphine.
4.What are your symptoms?
-Sensitivity, burning, cold, soar, swelling, fatigue, color change, exceeded nail growth and hair growth on that extremity, internal pain includes dull stabbing pain, pressure in the eyes, back, stomach, neck, head.( let me know if you need me to describe these in detail.)
5.Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
-Personal biofeedback.
6.What makes it worse/better?
Warm water, getting the pain down before it gets too bad, keeping stress low, elevating(sometimes) all help. Cold weather, stress, touching, bumping (etc)hanging the extremity and when it is in the stomach, eating makes it worse.
7.How does RSD affect your daily and social life?
-Sometimes I am not able to get out of bed all day. I cant plan anything because the condition is not consistent and, there for I am not able to get a job. Unexpected flares. Etc.
8.Are you experiencing any emotional/psychological effects? If so please explain.
-Not at the moment. Dealing with it for about 11 years, you know how to keep that away. Sometimes it is still hard not to get depressed though.
9.Does RSD affect your ability to work?
-Yes
10.Have you been told by others its all in your head? If so by who?
-Yes. Doctors, family members, so called friends.
11.Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
-I dont believe so. Just treated by unexperienced "RSD" doctors.
12.What tests were run to find diagnosis?
-None, They diagnosed me when there were only symptoms to go off of.



Questionnaire for RSD sufferer


1. How long have you had RSD? 5 years, I was diagnosed officially as 16.
2. What was the initial cause? Dancing injury, at school.
3. What treatments/medications have you tried? How effective have they been? I've tried nearly everything! Medications include morphine patches, cocodamol, and a few more that I cant remember. The only one that has worked for me is Neuropathic spinal blocks every 6-9 months, coupled with 50mg amitriptyline every night.
4. What are your symptoms? When a spinal blocks effects wear off, after about 4 months, I get agonising pain, being able to feel the air on your foot and slight movements ie wind cause such pain. Also bad circulation, my foot goes blue and I cant warm it up. Also I feel exhausted all the time.
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) I tried excluding foods from my diet that affect your nervous system, ie caffeine etc, it did make it slightly better but was impossible to keep up as i had a list of about 10 foods i could eat. (Cannibis sometimes helps, I dont know if that counts as alternative!!)
6. What makes it worse/better? Hot weather makes it better, tiredness and stress makes it worse.
7. How does RSD affect your daily and social life? Daily life is as normal when I'm in the 4 months after a block, after that it declines. Daily life becomes an effort, and it becomes more and more exhausting. I crave sugar to give me energy. Obviously when you are craving sleep you really dont want to go out with your friends and you end up really snappy when they dont understand!
8. Are you experiencing any emotional/psychological effects? I get depressed sometimes, especially when I get scared of the uncertainty of the future. Apart from that, 5 years on, I've got my head around most of it. I was very depressed when I was 16-17.
9. Does RSD affect your ability to work? Sometimes, the pain can affect my concentration and then I get behind with work, when I have worked in an office it has been an incredible challenge to carry on.
10. Have you been told by others its all in your head? If so by who? doctors! GPs and some of the specialists who hadnt heard of RSD>
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.) No, thankfully!
12. What tests were run to find diagnosis? Every test under the sun! MRI scans, steroid injections, injections of something I dont remember which showed your bone deficiency, I dont remember all of them as I was in a lot of pain and on a lot of drugs at the time!


Questionnaire for RSD sufferers

1. How long have you had RSD? 6 years
2. What was the initial cause? 2 failed carpal tunnel surgeries, both within 3 weeks of each other
3. What treatments/medications have you tried? How effective have they been? Block and drugs – very short term effective. SCS Implant in May 2003, worked to put it in to remisiion
4. What are your symptoms? Both arms, shoulders, and neck – stabbing pain, burning, cold, and skin color change
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.) No
6. What makes it worse/better?
Worse: - getting hit, tapped or bumped in the area and coldness
Better: - heat from wet heating pad and smoking marijuana
7. How does RSD affect your daily and social life? I am careful not to bump or overextend my upper body
8. Are you experiencing any emotional/psychological effects? If so please explain. Depression, knowing that this will never go away
9. Does RSD affect your ability to work? It hasn’t, as I have an office job and can take frequent breaks, as needed.
10. Have you been told by others its all in your head? If so by who? Yes, by Neurologists
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.) No
12. What tests were run to find diagnosis? Stal. Gangl. Block on the sympathetic nerve in my right shoulder


I'm Andrea and I'm 18, I've only had RSD for a few months. The affected area is just my left hand (so naturally I'm left-handed!). It's a small area, so I'm shocked at how much my life changed because of it. I never realized just how much I did with my hand before.

1. How long have you had RSD?
--- I was diagnosed in March 2008, but that was because I switched neurologists. I have probably had it since December 2007 give or take.
2. What was the initial cause?
--- Muscle strain to my left shoulder which was later discovered to also be a brachial plexus stretch injury to my left arm. It happened in September of 2007. I'm still dealing with the arm and shoulder too, but the RSD has never managed to spread.
3. What treatments/medications have you tried? How effective have they been?
--- I have been on Lyrica and Cymbalta with bad reactions to both. I take amitriptyline (10mg any more and I have problems with confusion). It's a small dosage, but it makes the pain just enough to manage. I seem to have a low tolerance for drugs ^^; I was in PT from October 2007- Oct 2008. I am now in OT/hand therapy. I changed because after a year there wasn't really that much sucess. We didn't start treating my hand (where the RSD is) until January 2008 though. And even then it wasn't specifically for RSD.
4. What are your symptoms?
--- Stinging/burning/shooting pains in my left pointer finger and thumb. Slight swelling and decreased movement. Purple-ish colour. My hand is really cold, it used to be even colder. At one point my hand was severely swollen and the entire hand had all of the symptoms listed above. At that point I could barely move my hand. Also my pointer finger moves, almost constantly, without concious control.
5. Have you tried alternative medicine?
--- We tried hydrotherapy...and are going to try biofeedback. For the hand most of the treatment is desensitizing stuff (rice, beans, etc.). They also tried to convince me that hypnosis would work, since it worked with one of his other patients.
6.What makes it worse/better?
--- Cold and sometimes heat make it worse. Moving it certain ways and holding objects, especially anything that is wide. The cold is the worst though. Rough fabrics and certain light and deep touches.
7. How does RSD affect your daily and social life?
--- I never used to be asked constantly how I was feeling. Now it happens all the time. I don't mind usually, but it does get irritating, since it's like they see my arm, not me. I also have to rely on people more than I used to. At one point friends and family had to cut my food so I could eat (couldn't hold a knife or fork in my left hand). I find myself needing people to do little things for me alot (like writing things for me). At first it was a lot more difficult, since my whole left arm was essentially useless. Throughout this, I have had the most amazing friends and family who support me endlessly. The biggest change is having to schedule my life around appointments. I miss out on a lot because of this.
8. Are you experiencing any emotional/psychological effects? If so please explain.
--- At one point I was really depressed and stressed out by it. It was really hard for me to be in school and unable to do my work. Occasionally I still get frustrated with it...I was told that it was up to me how fast I healed from this (6 weeks or 6 months was the example given) and three of my fingers did heal within 2 months or so. I try to remain optimistic, even though I'm often let down. I also sometimes feel a bit isolated, since I'm never available anymore (too many appointments).
9. Does RSD affect your ability to work?
--- Yes, I'm left-handed. I cannot hold a pen/cil properly and therefore cannot write more than say a sentence. Of all the tasks writing is by far the worst. Since I'm in university, this has proven to be quite a problem. It hurts to type too, but I just bear it and take breaks when I need to.
10. Have you been told by others its all in your head? If so by who?
--- No.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
--- Not exactly, my original neurologist just sort of ignored me whenever I brought up the problems with my hand. Actually he pretty much ignored any questions I asked.
12. What tests were run to find diagnosis?
--- An x-ray, MRI, and 2 EMGs. On the second one they discovered that (thanks to the RSD) I had Carpal Tunnel. The second EMG was done to see why the two fingers were not healing with the rest of the hand. Currently the two 'feed' off eachother. The hope is that if they treat the RSD the Carpal Tunnel will clear up with it.

[frogga]

Questionnaire for RSD sufferer

1.How long have you had RSD? 7 years in Jan (at age 16)
2.What was the initial cause? Possible fracture to my right wrist then spread full body within 6 months and is now internal also developed dystonia
3.What treatments/medications have you tried? How effective have they been?
Stellate ganglion blocks, lumbar blocks, bier blocks, various opiods, narcotics, anti-seizure, anti-depressants, duragesic patches, muscle relaxers, oral ketamine, physical therapy. Alternative therapies, osteopathy etc. Lumbar block made RSD spread from right leg to left. No relief from blocks. No relief from pemidronate infusions. Limited relief from meds apart from at huge doses.
4.What are your symptoms? Constant burning like you’re on fire inside your body, deep aching, stabbing, crushing, throbbing, exploding, stabbing pains… muscle spasms that get so bad in my body that its like they’re having seizures, contractures of all my joints e.g. ankles and feet are twisted, arms wrapped round body, hands in fists, neck twisted to side, trunk twisted to left, hips rotated inwards, right leg locked over left leg, jaw locked, hypersensitivity, color changes, easily bruise, temperature changes, swelling, loss of muscle severe insomnia- I can go like 4 days with out sleeping cause of the pain. Difficulty swallowing/ eating/ problems with sight/ dizziness/ fits/ blackouts/ high pulse/ breathing problems, speech problems, cognitive issues e.g. memory, migraines, intolerance to cold, loud noises, vibration etc exhaustion
5. Have you tried alternative medicine? (acupuncture, holistic, biofeedback, HBOT, etc.)
Tried acupuncture, holistic med, biofeedback, laser light therapy, crystal therapy, osteopathy, massage, hot stone, EMG, TENS …. None of them worked
6.What makes it worse/better? Heat/wet heat, staying as still as physically possible, avoiding crowds, loud noises, bumps/ vibrations/ bright lights. the right medication helps a little. Mothers bullying and lots of desense helped me wear trousers/ long sleeves again. Touching, over using, stress, changes in the weather, anything from clothing to a breeze can increase the pain. tiredness.
7.How does RSD affect your daily and social life?
I am in a wheelchair, totally unable to do anything for myself from feed myself to go to the toilet on my own or dress myself or control my wheelchair. I have to be hoisted and rely on people for everything. I am at uni and though it's a HUGE Struggle with the pain I'm managing with the help of a 24 hour carer and VERY supportive friends and my boyfriend. Some days I just can'tbe moved or touched from pain and will scream if I am but I try and be as normal as possible. I try and go out when I'm well enough and try to have fun with my friends.. they are totally amazing and understand if we have to do stuff with me lying in bed instead of going out clubbing etc. It means I can't remember stuff and struggle to control my own life. I have fits and regular blackouts which means I always have to be with someone else beucase I have stopped breathing when fitting before.
8. Are you experiencing any emotional/psychological effects? If so please explain.
yes... just feeling a burden, sometimes feeling that I would be better off dead and just wishing I could escape from the pain... eugh.. it just sucks... and sometimes I just get so low
9.Does RSD affect your ability to work?
I'm 100% disabled but I am in my third year of a Psychology degree and I'm hoping to be able to get a job at the end of that as I want to work.
10.Have you been told by others its all in your head? If so by who?
My dad. I don't want to talk about it.
11. Have you ever been denied treatment? (by hospitals, clinics, doctors, ER, etc.)
Apart from the ketamine coma no.
12 What tests were run to find diagnosis?
x-rays, mri, thermography, physical exam, nerve conducting test, sympathetic block

[msdrea83]

movin this up