mom and my's answers for an RSD study

published 2011

Empirical Study: Survey on Patients with RSD/CRPS - Jill's (permission was granted by the surveyor to share my answers)

Gender: female
Date of birth: -- - --- - 1986
Date of first diagnosis: October 2009

For the following survey questions, please go into as much or as little detail as you wish, and do not feel obligated to answer any questions that make you uncomfortable.

1. Were there any inciting injuries or events to which your condition may be tied? If so, what were they and when did they occur? (Please provide a year or date if possible)In October of 2009 I bumped my wrist on a table while moving it upwards to gesture in a graduate school course. It resulted in a bone contusion in the same spot I had dislocated in the spring when I was 16 – 2003.

2. What areas are affected by the condition? How has this altered performance of daily activities? (Increased difficulty, specific limitations, etc.)It spread quickly from the wrist to my fingers (all four but not the thumb, thankfully) and then up to my elbow – in just six weeks. Fine and gross motor have been affected, strength, grip… I’ve lost the sensors in my arm that tell my brain where my arm is in space as well. This makes everything harder: walking without running into things (my knees and thighs are consistently bruised from running into tables or falling down), driving, cooking, opening a soda bottle, writing, typing, weight bearing, working out, combing my hair, etc.


3. What forms of treatment have you undergone? (Medication, physical therapy, biofeedback, ketamine IV infusion, etc.) Has the treatment been responsible for any improvement or changes (positive or negative) in mobility, pain levels, etc.?I’ve used a combination of pharmacology, stellate ganglion nerve blocks, and occupational therapy to get my RSD to a moderate and maintained level. In December of 2009 I had a series of six SGNBs which gave me a few hours of pain relief – during those hours I went to OT and worked my butt off, then went home and napped, and then got up again and did more OT. I’m still in OT now and attend once a week as compared to twice a week for the first 7 months of RSD. Pharmacology wise: I tried L----a and T----l and settled on K---a – - mg 3 xs daily. I also take C-----a - mg, A--- -n mg at night to assist with sleeping, L--- -a mg, Vitamin C 500 mg, Senna S. For pain I started with ---- at --- and then (since it’s not a good idea to try to change more than one thing at once and my pain management doc said nerve blockers were the most important to get straightened out first) moved to ----s. At the end of my time ‘with’ ---- I was taking up to --- mgs per day. Then I tried ----, ----, and ----- – all of which resulted in allergic reactions (---- and ----: itching to the point where I scratched skin off – -----: stopped sleeping). I settled on ------ and am on - mg every four hours. There is an extended release version but it’s really expensive and has caused a few ODs so I’m just fine staying with the immediate release. The downside is that I either have to wake up to take it, and sleeping is hard so waking up makes everything more difficult, or sleep without pain relief which results in horrible nightmares and pretty damn painful mornings. But I’m lucky to sleep at all :)

4. Have your symptoms altered in any way since you were first diagnosed? (Spreading or reduction of affected areas, pain levels increasing or decreasing, etc.)I definitely experienced spread and I attribute the stop of spread to my aggressive treatments, explained above, particularly the SGNBs. I have gone up pain “levels” at least twice, which lead to an increase in K----a and then the addition of C-----a. I’ve always had a hard time sleeping but was able to sleep by using melatonin 1 mg, then 3 mg, and then 5 mg pre-RSD. I was unable to sleep normally – i.e. during the night – with RSD. I also didn’t have the burning pain when I was first diagnosed with RSD but that came with time. I’m lucky in that it’s spotty though – it’s very rare for my entire RSD area to burn. I usually have spots that burn instead.

5. Have there been any other symptoms related to the condition? (Headaches, effects on other systems/organs, e.g.)well prior to RSD I had other neuro conditions: IBS (irritable bowel syndrome) and migraines. When I have a migraine, my pain flares and vice versa. I haven’t had an increase of migraines since diagnosis however because my migraines are controlled with -----. IBS got worse on ---. I never knew what was going to happen that day. Since I started using Senna-S things are much better in that regard. But I know I take a very small amount of Senna S to help regulate. In addition to Senna S I am also on ---- (for GERD) and Florastor, the only probiotic that ever worked for me (and of course the most expensive haha). It’s a really delicate balance that can be easily upset!!! I also have PCOS (polycystic ovarian syndrome) which I think has been exacerbated by my RSD – I feel like I’ve had a few cysts rupture in just the past month, or at least have one painful one. It sucks!!! I’ve been on birth control to treat my PCOS/endomedtriosis since I was 16 and haven’t had any issues til now… big “coincidence”

6. Besides the changes in your ability to function normally or with ease, has this condition affected your life in any other ways? (Financially, socially, etc.)Absolutely. I lost a good friend who kept telling me that people “back in the day” just “dealt” with RSD and I could too (without pain meds). I explained to him (he’s an EMT who wants to be a nurse, btw) that RSD was nicknamed “The Suicide Disease” for years because people who tried to “deal with it” just offed themselves instead. He disagreed. I gave him a few chances, then cut him out of my life. It was too hard to need to defend myself. When we’d go to breakfast I’d bring my pillbox and he’d say “I feel like I’m with a 70 year old. You don’t need all that medication.”

When I was first diagnosed I was pretty depressed, and both L---a and T----l made my mood really different and hard to control. Of course when you have RSD your mood is affected by your pain and flares, since it’s all connected in the neuro system.. but this was to the extreme. A friend of mine recently gave me a hug and said it was “so nice to have the REAL you back. Not to be rude but when you first found out you had that you were no fun to be around – for a long time!”

My family said I “ruined Christmas” last year because I was down in the dumps and getting blocks (I had one Christmas Eve) as well as on T-----l, which literally turned me into a raving bitch. I slept and raged and felt dizzier than shit. Also, there’s been no place to say this yet, but my mom has RSD too and so did her dad.

I also haven’t been able to find anyone who wants to date me longer than 3 months. Part of it is that I get easily irritated and have to work really hard to stay positive when I’m in a flare. Part of it is that I’m getting to know this new “me” so how can I know what I will do in a relationship? Part of it is that I’m not confident in myself sexually because I’m right handed and sometimes have to rest my arm on a pillow during sex. I was so scared I’d never have sex again and I'm still not confident about it.

Lastly – a good thing – I’ve made SO many GREAT friends online. I am an admin of a support group, which is where I met some of the people I talk to on a daily basis, but my best friend now is an RSDer I’ve never met. We talk pretty much every day and text all day long (it’s good for my hand to work on fine motor like that and she never cares about the typos haha). We talk lots about RSD and our page (we run it together) but also about everything else: dating/marriage, her stepson, my cat, her dog, our jobs (I nanny right now – it’s hard but at least I know I can have kids, that was one of my fears when diagnosed – I’ll just need adaptive equipment like pillows and a co-parenting husband!). The crazy thing to me though is that a lot of family and friends of RSDers who find support online hate that we find it online. I studied online support in undergrad and grad and was actually really surprised to learn through experience that this happens. Everyone I’ve asked has someone who said “You like being sick and are afraid to get better because you’ll lose all those weird online friends of yours” or something similar – or this one is also super common “You’re always online talking about RSD, no wonder you don’t feel better! You focus on it too much!” Bollocks! It’s always on your mind. 10% of your brain is always focused on your pain. How can it not be? In my opinion it’s what you do with the other 90% that matters – do you grump around, moan and groan, or do you try to keep living? I always tell new RSDers that their life isn’t over, it’s just different. You’ll still get to do what you loved, just differently. Maybe you loved to sew and you can’t anymore. You can still teach others to sew, or watch people sew, or take up knitting with massive needles. It’s not over. Just different!

7. Given the severity of your RSD/CRPS and the effects it has had on your life, have you ever considered suicide? If so, who or what prevented it?Yes, I had a “plan” that included how and what song I’d be listening to when I did it. I planned on driving off the road in some horrific manner. Things that stopped me: that’s the worst way to do it because dying isn’t guaranteed. Someone would find me and that would haunt them forever. My sister would be utterly devastated and --------------------------. My family and friends would be haunted forever. My mom’s older sister killed herself so I couldn’t forgive myself for doing that to her all over again. As soon as I realized how far along I was with my “plan” as it’s called I went to my PM and confessed it all, and we doubled my antidepressant (which was at the time L-----o, now switched to C----a because C. doubles as a nerve blocker and depression med, and cuts down one pill per day – yay!)

8. Have you had to work with medical practitioners with little to no knowledge or understanding of RSD/CRPS? Did this lack of knowledge delay your diagnosis or adversely affect your care?Yes. When I hit my wrist originally I went to the ER and they X-rayed me and said I had not healed correctly from the original dislocation. My mom says she had a bad feeling about it right from the start and thought I had RSD but didn’t want to scare me. The ER doc referred me to an orthopaedic surgeon. I got in with him 2 and a half weeks later – I had been wearing a brace and making it on V-----n somehow. He checked the x-ray and disagreed with the ER doc saying the space between my growth plates wasn’t normal but shouldn’t hurt that much. He asked for a family history. I told him my mom had RSD and then added the shocker that her dad did as well. He about fell over and died, then said “You’ve got it too.” I went into extreme shock. He said he had seen “lots of patients with RSD and treated them, especially around this time of year when people fall and sprain their ankles and wrists.” That shocked me out of my shock – I live in a town of 10,000 people close to Milwaukee, which is a city as big as Boston FYI. So why would he see “tons” of RSDers in a po-dunk town? (He had a practice in my hometown – but when my mom was dxed and went to see an ortho surgeon she saw a different one and then like 5 others, there’s no shortage of them, so this just struck me as really odd) Then I said “well I know we have to be aggressive so what are we going to do?” He said “Buy some ben-gay cream and take that brace off. Use ice for the pain. Make an appointment with me for four weeks out and use the arm. We’ll see how it’s doing then.” I knew that was horribly wrong. Ben gay? Are you kidding? And ice?! Even worse!!! The worst thing ever!!! I called my mom on the way to school (I had to teach – I was finishing my master’s degree when I was dxed and taught and went to school full time throughout the entire saga, from October to May, which is why I waited til December to get the nerve blocks – I had to do it over Winter Break) and was hysterical. She took over from there and got me in to see her PM doctor, who’s now my PM doctor, in November. And then we did the treatment I mentioned above. In the beginning my mom was a big cheerleader – she thought I would go into remission, as did my doc, as did I. when I didn’t she was really shocked and I think she still has a very hard time with that.

9. Is there anything you would like to add?---- Yes, I’m going to get my mom to fill this out too. It should be interesting to have a mother-daughter connection in your results!
----- The thing that changed everything for me was getting involved in the RSD community online. I was really negative and depressed and the cathartic moment came when I started talking to other RSDers and then started an online community where I could offer support and literally HELP people. Because I’ve grown up with RSD I can offer two sides of the coin support-wise: I can help family and friends, especially parents who worry their kids are going to be messed up because they are sick – as WELL as actual RSDers/CRPSers.
----- My mom actually has CRPS because she had a nerve trauma that started her RSD – entrapped nerves in her right arm, so we both have RSD in our right arms and hands. I have classic RSD without the nerve trauma – so did my grandpa, he had post-radiation RSD (from cancer, and in an odd place – his nose!)


............and my mom's survey/answers, she asked me to post :)..........

Gender: female
Date of birth: secret!
Date of first diagnosis: December 24 1997

For the following survey questions, please go into as much or as little detail as you wish, and do not feel obligated to answer any questions that make you uncomfortable.

1. Were there any inciting injuries or events to which your condition may be tied? If so, what were they and when did they occur? (Please provide a year or date if possible)I had radial and ulnar nerve entrapment surgery in the fall of 1995

2. What areas are affected by the condition? How has this altered performance of daily activities? (Increased difficulty, specific limitations, etc.)I have RSD in my full right arm and shoulder – then it spread to my left forearm (up to elbow and including left hand) – then spread to my legs but I don’t feel it everywhere in my legs, it’s in parts – like spotty.

I have to use adaptive aids to do a lot of things like driving – I still can’t drive long distances though – only 45 mins or less. Other aids: to unlock the door, to open soda cans, etc. Doing housework i.e. deep cleaning is really difficult. Even just dusting is difficult because I have to break it up into bits over a period of days. Now I pay to have my house cleaned – I never did that before. I can’t go grocery shopping because I can’t carry the groceries and going in the refrigerator section hurts. It’s hard to think of stuff because I just live with it! Odd. I use Dragon Naturally Speaking to work – I’m still able to work fulltime but it’s difficult because if I overdo it I pay for days or weeks. I use adaptive silverware, special cups, someone has to cut my food up especially meat. I need help with clasps for necklaces and rarely change my earrings because it’s hard to get them in and out. My stamina is also different – sometimes I’m not tired when I should be and sometimes I’m really exhausted for seemingly no reason. I modify how I dress – I still hate long sleeves and don’t get used to them easily so I wear soft materials. I layer up because I might get really cold. I’m really uncoordinated now – I always feel off-balanced and can’t walk in a straight line. My grip and strength are awful and my doctor restricted me from lifting anything over 2 pounds. Technically I’m not supposed to write at all, not even sign my name but I can do about one page per day if I have to.

3. What forms of treatment have you undergone? (Medication, physical therapy, biofeedback, ketamine IV infusion, etc.) Has the treatment been responsible for any improvement or changes (positive or negative) in mobility, pain levels, etc.?I use lots of medications. I tried a TENS unit but I hated it and couldn’t stand it because it hurt so much – I was directed to use it by a PT, actually before I was diagnosed, but they used it incorrectly and aggravated in practically every way possible. The only thing they did that helped was a paraffin! I was in PT for years before and after diagnosis. I had 15 stellate ganglion nerve blocks because I kept hoping they would work. I had a physiatrist who eventually worked with my PT people to get me the right equipment and adaptive aids when my doctor decided I was too far gone for PT to do any good, even if it they did it “correctly.” Years later I got a SCS – in 2006. I’ve already gone through two. I had my first one for 2 years and I had a really bad fall on ice outside of my workplace one evening and knocked my leads out. I literally turned the entire appliance around to the point where it was completely nonfunctional. When I tried to get it replaced, my insurance and the Medtronics Rep fought me on it for six months. I finally got it back in.

I’ve had the best success with the SCS.


4. Have your symptoms altered in any way since you were first diagnosed? (Spreading or reduction of affected areas, pain levels increasing or decreasing, etc.)My RSD spread and grew more painful over time. My pain depends a lot on what I do and I’m able to do more without causing extra pain now that I have the SCS. I sleep better with the SCS. My arm always feels like it’s being crushed by a thousand pound vise.

5. Have there been any other symptoms related to the condition? (Headaches, effects on other systems/organs, e.g.)My eyes have gotten worse. My eyesight has deteriorated and they comment when I get my eyes checked on the dramatic change that occurs each year. I never needed glasses until I got RSD. I also developed medication-induced hypothyroidism. I gained a lot of weight and couldn’t lose it so they finally did tests and realized I had that.

6. Besides the changes in your ability to function normally or with ease, has this condition affected your life in any other ways? (Financially, socially, etc.)I accidentally overdosed once – once with a faulty ------- that released all its "ER" meds at once. I almost died, and it was really scary. So now my doctor has recommended a few times that I try that medication but I’m afraid of it – paranoid. I know it was a mistake and that it worked really well for me, but I’m way too scared to switch.

I was also very worried that my kids (I have two) would not have a good childhood because I was sick. I didn’t want them to worry about me, either. I was always tired – for years – before I was diagnosed and then treated for hypothyroidism and I felt guilty for sleeping so much when I felt like I should have been awake for my kids.

I also used to be really paranoid that people would think I was a drug addict. I asked my kids when they were little if they I “needed my medications” to gauge how they looked at me now that I was on so many medications.

My dad was really supportive and so were my sister and brother.

At work there were some people who didn’t believe it and still don’t. I had to get a special parking spot in the winter because my boss insisted on it after I fell and wrecked my SCS and a coworker was really upset because I don’t have a disabled parking sticker. I said “I can get one if I need to” and my boss said that wasn’t necessary, that they believed me, but this woman hates me and doesn’t believe I am sick. I actually work over my 40 hours to get the job done but I can’t tell my workplace that because then they’d fire me – but I have to work that long because now that I have RSD things take longer to get done. I was lucky that I’d been working where I was working when I was diagnosed and that I had the boss I did because I didn’t lose my job. If I had lost my job we wouldn’t have our lifestyle and would have had financial trouble, and I wouldn’t have been able to find another job, plus my job is for the state so we have good insurance. We’d have insurance through my husband but his isn’t very good so we’d be in trouble, especially now that Jill has RSD too.

I’ve been frustrated with my family for not knowing or understanding that I’m no longer able to do some things… it feels like certain family members are oblivious to that or choose to be oblivious.

7. Given the severity of your RSD/CRPS and the effects it has had on your life, have you ever considered suicide? If so, who or what prevented it?Yes. I didn’t because of my family – I don’t want to do that to any of them, I went through it with my oldest sister. I wouldn’t want to do that again to my sister and my brother – they already had to go through it. Also my sister has always known when I felt like that and she pushes me to get into my psychiatrist who then pushes my med up. My sister will say “Are you okay? You don’t seem right” and if it’s true, I do really go in and need an adjustment or increase in my medications. A few times I’ve made my own appointment to get help as well – when I get really depressed and feel that my mood is going down. I’m learning how to recognize that now.

8. Have you had to work with medical practitioners with little to no knowledge or understanding of RSD/CRPS? Did this lack of knowledge delay your diagnosis or adversely affect your care?Yes. I worked with lots of doctors who didn’t know what it was and it took over 2 years to get a diagnosis and then get in to see my current pain management doctor. My surgeon, a physiatrist, and my primary care doctor all kept mentioning RSD but didn’t want to commit to it, and I wasn’t the type of person to go online and look it up. And they put me through two years of therapy in all the wrong directions – for example they were always putting ice on me even when I couldn’t stand it and tried to refuse it. So by the time I was diagnosed it had spread into my entire right arm, hand and shoulder when the surgery was originally just my right forearm.

9. Is there anything you would like to add?---- My dad got RSD after I did post-(cancer)radiation treatment in his face. It started in his nose and then spread. (he passed away this august, unrelated to RSD – congestive heart failure)