HealingWell
Search Close Search
☰

Reflex Sympathetic Dystrophy Syndrome: Hell on Earth

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/8/2010 8:51 PM (GMT 0)

 Why is it that most competent doctors don't understand what RSDS patients are experiencing? I mean, come on docs. Just recently, I went to my D.O. (the same doc that has been treating my RSDS for the past two years) for my monthly exam and prescription refills, and upon seeing him, he asks me what my symptoms were. Seriously?! After explaining my diagnosis yet again, he left the room, walked into his office, and was searching for something on the internet on his computer! I could only assume that he was researching the disease and ways of treatment. UNBELIEVEABLE! I have no healthcare or insurance, so finding a doctor that is willing to treat cash-paying patients is really hard to find in my area. I am afraid to file for government assistance or social security because I still want to work and have a career. Disability assistance only pays out so much per month, and I'm only 29, so I feel as if my whole life will always be financially limited if I don't stay in touch with the workforce. Also, I can't understand why doctors in my area are so reluctant to prescribe stronger, more potent narcotic painkillers. If it weren't for narcotic pain medication, I wouldn't be walking. AT ALL. I was diagnosed with RSDS in my left foot and ankle in October 2001, following an auto accident, when my left lower extremity was crushed and I had to be cut out of my car with axes by the local fire department. The accident wasn't even my fault. Prior to the accident, in 1997, I had shattered my entire ankle playing fast-pitch softball for my high school (also not my fault. I stole and slid home, and the opposing team's catcher stepped on my foot and ankle.) At the time, I was covered under my parents' health insurance, and for the following 6 years, I underwent every treatment option available, took every experimental medication, seen every doctor and specialist at every pain clinic and hospital within a 200 mile radius, and am still experiencing the same debilitating pain that incurred almost 10 years ago. Wow. It feels really good to vent and tell my story. My family and friends have been semi-supportive at best. I'm really over pitying myself. It just becomes really overwhelming and I feel so helpless. I really wish there was an easy answer. Or maybe even some kind of superhero to rescue me from this HELL ON EARTH. 

Posted 4/8/2010 10:14 PM (GMT 0)
Hi, Dagogirl,
I want to welcome you to the chronic pain forum of Healing Well, although I'm sorry for all that you're going through. RSD (now called Complex Regional Pain Syndrome -CRPS - by most specialists) is hard to diagnose, and difficult to find a doctor who specializes in it even with good insurance. I can only imagine the challenge without insurance.

I'm twice your age, but my career was still cut short and I'm having to file for disability, something I've fought for a long time. With basically no income at the moment, I've had to resort to whatever low income insurance I could find.

Are you working at all now? If so, is there any way for you to buy into your employer's plan? If not, and if you're not working because of health issues, you may be better off filing for disability even though I know it's hard. Straydog (one of our moderators here) knows a lot about the disability process and may come along and post to you if you request more info. on that.

If not, if your income is low have you tried getting into your state's Medicaid program (if you're in the U.S.)? It's not the greatest, and you still may have trouble finding doctors that take it, but it's better than nothing. I was amazed that my GI specialist accepts it. But not all specialists do - especially chronic pain doctors. That is a challenge, unless you can find a sympathetic PCP who will prescribe for you.

If you're able to private pay, have you tried negotiating with a good pain management specialist for a lower rate? A lot of doctors prefer to take paying patients because they have less paperwork, but not all will give you the discounted rate they give the insurance companies - but some will. Perhaps trying to negotiate with a teaching hospital that might have a clinic that specialists in CRPS is another option.

If nothing else, we can be here to listen as you vent your frustrations. Don't give up! It does take a lot of work to put all the pieces together, though. I'm still working on it myself.

Hope this helps a bit.

PaLady
Posted 4/9/2010 1:09 AM (GMT 0)
Thank you so much. You've given me some really awesome advice. (I can use all the advice I can get.) It really feels as if I've exhausted all treatment options that are readily available to me in my area. My current D.O. isn't very cooperative. Whenever I ask him about new and experimental treatments, he gives me this look, like it was a ridiculous question. Maybe its just his inexperience, or maybe he realizes my inability to pay for such expenses. Whatever the case may be, I'm still in pain. Sucks. I welcome all and any comments and/or advice. Thanks again!
Posted 4/9/2010 1:31 AM (GMT 0)
yeah tongue Hi Dagogirl and welcome! Gosh I was hoping someone with RSD would come on this site! I suffered a spinal cord injury january 2009 followed by surgery then a diagnosis (from a neurologist) of RSD. I was in a nursing home(no insurance-I was placed on Medicaid but was dropped upon nursing home discharge July 2009). My Social Security disability kicked in August 2009. Which is more than I would have drawn anyway with regular S.S. I turned 62 in Jan. My sons are both older than you! Bless your heart...I am so sorry your dr did that. The dr that treated(very poorly) in the N.H. didn't know anything about our condition and let me know he was not interested in learning about it. I went to a pain mgt dr and was placed on Lyrica. I took it for 5 mo. I went to an Internist and he put me on Savella and Gabapentin. I currently take 50 mg 2xday of Savella and 600 mg4xday. I am amazed how I am getting some relief. My pain is mostly in my arms...the burning pain and the skin tenderness are horrible. My legs become sooo stiff if I don't stretch and move around. Oh a little FYI for you. If you decide to go on SS disability your Medicare will kick in 2 years after you receive your first disability check. If I can answer any questions please feel free to post. yeah yeah yeah turn eyes rolleyes Donna
Posted 4/9/2010 1:34 AM (GMT 0)
dagogirl

I just want to Welcome you to Healing Well Chronic Pain Forum, You sure have been through allot! I really am glad you found us, I hope that you will feel the same way! We have a very compassionate and caring group of people here, and although we can not do any thing to fix you, we can lend you our ears and listen to you, and give you our support and share what advice that we have. Please don't ever think that you are " over pitying yourself"! That is one thing that you are not doing here at this forum! It is fine to come here and vent your frustrations, rant and rave all you want! Share with us your frustrations, let us help you as we can! When you come here, you are not alone! We all know what it is like to have chronic pain, and we can share your burden and empathize with you!
I do hope that you will stick around and become an active member of our CP family!

White Beard
Posted 4/9/2010 1:56 AM (GMT 0)
Hi Dagogirl,

 

I too would like to welcome you to Healing Well's chronic pain forum. I am so sorry to hear what is going on with you and the RSD as I know it. Now, they have given it a fancier longer name, but it still is the same rotten disease.  I am very glad you found this forum and the fact that you felt better writing it out, is totally awesome. It took a lot of courage for you to come here and post as you did. You are one tough cookie, lol. You just have to keep hanging in there. I know, you are so tired of being told that and I do understand. I remember all so well when RSD was first being diagnosed and back then insurance company's did not pay for medical treatment because they said it was not a medical condition and it was not recongnized by the good ole AMA; and all medical treatment was considered experimental!!!! No doubt you do feel as if you have been to hell and back many times with RSD.

 

I am no expert at it but I sure am familiar with it. None of us are drs here, but we all have a story to tell and one thing we understand is CP. I worked for attys all my life doing personal injury, worker's comp, med-mal and a few others. This is where I got my knowledge in the medical field. Finding a dr that knows how to treat RSD is like looking for a needle in the haystack but they are out there. My experience with RSD always fell in the realm of a good pain mgt dr. I live in Tx in a very large city and it was PM drs that dx'd and treated people with RSD. MD's & DO's did not have a clue. I do not know what meds you take, or have taken in the past, but one med used quite frequently even today is called Amitriptilline. I believe and I am rusty on this call, but that may be the generic for Elavil. Look it up on Drugs. com.. This is a drug that must be started out on at a low dose and slowly titrated up, as it is a drug that builds up in your system over time. It is used off label for many different things. My son was on it for migraines. I saw many clients get some relief once they were titrated to the correct doseage for them. it also helped with their depression too. CP and depression go hand in hand believe me. If it were not for my chill I am sure I would be single and my dogs would have packed their bags and left too. Hell, I wanted to leave , lol. I was trying to get away from me, lol.

 

You are in a real catch 22 with no insurance and no money to pay big bucks to drs. Is there a teaching hospital any where around you? Most folks that end up at a teaching hospital are ones that have ran the gambit of dr to dr trying to get help. There is wonderful care to be had at many of these places. At teaching hospitals you don't have the big egos to put up with or the God syndrome that some drs get. Your question about stronger medication, I can only tell you that drs do not like to give out pain medication to anyone on a long term basis. Their idea of long term is two weeks, too. Narcotics are pretty much out the window with them too. The only drs you will find willing to rx pain meds on a regular basis is a pain mgt dr. We have a few on here that their PCP is willing to rx them pain meds, those drs are far & few in between.  Not what you wanted to hear, but its true. The big war on drugs has had an negative effect and impact for people suffering with CP.

 

PaLady gave you some excellent info on applying for Medicaid and SSD. No one wants to get on any of these programs ok, we would all much rather be well, trying to scratch out a decent living and getting on with life as we once knew it. But, sometimes that is just not in the cards for some of us. So, before you totally kick dirt on these ideas do some online searching and reading. SSA.gov has a good section about disability and applying for it, please check into this. It is not saying you have to be on it permanently. I never figured being disabled at the age of 49. I would have laughed in someone's face had they told me that. Boy, little did I know.

 

I need to stop here for now, I am in severe pain tonight for being real stupid today. I am waiting on my pain meds to kick in so I can hobble to the shower. You take care and please keep us posted on how you are doing. When you feel like venting come here and vent away, we do understand.

Posted 4/9/2010 8:19 AM (GMT 0)
Wow! I never imagined that I would meet such caring, sypmathetic, and knowledgeable people like all of you. I'm so touched! Your compassion has brought me to tears! (In a good way, of course!) For almost 10 years, I've been treated with what most would call "tough love." As I had mentioned, my family and friends are supportive, but only to an extent. From the very beginning of my disease, my mother, who is a self-prolaimed "realist," is what I liked to describe as a "pusher." She pushes me to live my life as though I'm completely healthy, and my RSD is only a minor set-back that is in my total control. It's really weird how she copes with things. I mean, she was the one who was there for me when I was completely paralyzed on my left side from my hip down to my foot. She took me to all of my treatments (42 series of 2 paravebral sympathetic epidural nerve blocks in L2 and L4 twice a week and a 3-straight-day epidural drip), drove me to countless appointments and physical and rehabilitational therapies all over within a 5 county radius. She waited on me and did the best she could to nurse me back to a sustainable level of health. She believes that the mind is so powerful, that it can control all aspects of pain. Bottomline: I'll never feel any better if I'm always dwelling on the disease. She seems to think that if I keep telling myself that I'm in remission, then my pain will disappear on its own. It's just not acceptable to her that the truth is, unless a miracle drug or cure comes about, I have a physical disablity. A handicap. Something that prevents me from living a normal, healthy life. I can't even talk to her about my pain anymore. "Mind over matter!" she'll keep saying. It makes me feel like I am pitying myself, like I'm fishing for sympathy. Its not a good feeling. My father is a lot more compassionate, though. He has 5 herniated discs and a lot of nerve damage in his back caused by a repetetive motion injury he incurred working at a steel mill operating an industrial crane. He also has a touch of rheumatoid arthiritis, by which he inherited from his mother, whose chemo shortened her life, no doubt. He knows pain, so its easier to talk to him about everything. My brother is an ordained minister and youth pastor at two local Methodist churches. I know he cares, but he normally doesn't ask me how I'm feeling unless I bring it up. I've concluded that he doesn't understand the disease, so it may be awkward for him since he doesn't know to ask me how I feel. (Just an assumption, of course.) Here's something of interest: my father's youngest sister has RSD, but its in her RIGHT lower extremity. She was diagnosed in 1986, just before her 21st birthday. Coincidence perhaps? She filed for disability when she was living in New York, the same year she was diagnosed, and was approved and started collecting SSI by the time she was 23. I think my parents were so fearful that my fate would follow as my aunt's did, that they pushed me to finish college. Because of the treatments and set-backs of my disease, it took me 7 1/2 years to finish a 4-year BA. What sucks even worse, I lost the best job I've ever had due to RSD. (I mean, I've always had a job. I've worked since I was 13.) The organization I worked for didn't want to pay the premiums on the group insurance plan for my treatments, so they discharged me due to "unsatisfactory work performance." I loved that job. Loved it. I was one of two employees on staff that had a college degree and I made my career priority over everything else in my life. I was great at my job. I worked as a counselor and shelter monitor at the local battered women's shelter. It was a very rewarding position. The experience of being discharged for my disability pretty much ruined my self-esteem and depleted any confidence I had mustered up over the 7 years prior to getting the position. I'm still collecting unemployment compensation, which everyone knows will barely pay the bills. I am going to take all of your advice and start the process. Thank you so much for you encouragement. And thank you for listening to me. I've never told anyone most of this stuff, so its very enlightening knowing that total strangers can be the most understanding and helpful. You'll be hearing from me often. And thank you again, for shaing your stories and experiences. I have never felt such a strong feeling of hope.
Posted 4/9/2010 9:04 AM (GMT 0)
Dagogirl,
Everything you wrote you will see repeated here in one form or another in everyone's stories. Even relatives and friends who do care and try to understand often have a limit. Sometimes I think out of helplessness they don't want to believe how bad it really is. It's hard to accept and then manage the reality of our life without any support.

It's not "mind over matter" but mind and matter do work together, and parts of your story you will find have given you strengths. You seem to have a belief that you don't want to totally give into this, but yet have to accept certain limitations. That's often where we're all at. I was (am - I have not given up saying present tense even though I'm no longer working) in the helping professions, too, and had intentions of finishing out another 10 years of my career. At any age it's hard to accept, but still, you may find that if you eventually get good pain management you may be able to return to work in some capacity. Finding a doctor knowledgeable about RSD/CRPS I think is important for you, because although I'm sure no expert in the disease, from what I know it can progress without proper treatment. It does sound like you were getting that for awhile, with the attempts to stop the progression with the epidural injections and infusions. Did they help at all?

You really need to try to get some insurance. If you're receiving unemployment, and my guess is your salary at the shelter wasn't terribly high (I'm pretty familiar with the non-profit sector, and was a trainer for a local domestic violence shelter years ago) so you likely may be eligible for your state's Medicaid. It's worth applying. I've had trouble because of having some (although not a lot) of assets. The new health insurance legislation is also supposed to provide a pool for those who have pre-existing conditions who can't get insurance elsewhere, but this may take awhile to get started. Your local unemployment office can probably connect you with your state's application process, which can likely be done online. You may even be aware of how to access these services from your own knowledge. It's not the same as getting Medicare, which is limited to those over 65 or those who are disabled.

You do have to watch collecting unemployment and applying for SSD. I know because I've been in this quandry for awhile and finally got an attorney to answer some questions for me. But again, Straydog has provided a lot of info. in past threads on disability and I'm sure she'd answer any questions that she can.

Hopefully being here will give you a safe place to heal and rebuild your self-confidence, while grieving for what you might not be able to get back. That takes awhile to do. And you never know when a new treatment or procedure is going to come along, so never give up hope!

PaLady
Posted 4/9/2010 4:25 PM (GMT 0)
Hi Dagogirl,

Welcome to the forums. I don't have any experience at all with what you're going thru, but as a fellow chronic pain sufferer, you have my sympathy. I just wanted to welcome you here. As you can see, you've just found a new family...and we're happy to have you!

hugs,
Pam
Posted 4/9/2010 5:42 PM (GMT 0)
Hi Dagogirl,

This is a wonderful place to come and share, vent, and have a shoulder to lean on since we all live with the same issues that come with having chronic pain..

I am also not familiar with the details/treatments of RSD/CRPS specifically but there are those on here who do have this who can offer some help..

Just wanted to say hello and welcome to HW...
Posted 4/9/2010 6:04 PM (GMT 0)
yeah eyes Hi Dagogirl! I'm so happy you got such a great response to your post. When I was in the hospital paralyzed my sister and brother had a meeting with SS. They got all the drs and hospital records to take and I was okayed w/o having to pay an attorney. As far as the lack of support you're getting - it sounds so familiar! My sister (who I love dearly) even told me I was probably making my condition worse by going on RSD websites. Whatever! It helps to have someone that can relate. What meds are you taking? I do hope you continue to post here. We have wonderful moderators and members here. Take care. Donna turn blush
Posted 4/9/2010 7:23 PM (GMT 0)
I just stopped by to say that I hope you feel better.  I don't exactly know what RSD entails, but I do know that people that have it are in a lot of pain, and I'm sorry that you are.  I  am here to lend an ear if you need to talk, scream, vent, whatever you need.  I just joined  and there are a lot of caring and supportive people here on the forum.  Good luck.

9yrschronicpain

Posted 4/10/2010 6:46 AM (GMT 0)
I can't help but to tear up every time I read these replies! I have never felt so accepted in my entire life. I am absolutely delighted and relieved to be surrounded by such wonderful people! Thank you so much! There has been a huge weight lifted off of me. You've all made me feel so welcome. Its such a great feeling to be a part of something so progressive and positive. I am at a real loss for words. I wish I had known about this site sooner. This forum and all of its caring, compassionate members have already changed my life. Reading all of your comments and stories have given me a much different perspective, and it is graciously appreciated.
Posted 4/10/2010 6:53 AM (GMT 0)
Hi Dagogirl :)

I, too, just wanted to welcome you to the board. I'm glad you are already feeling supported and encouraged. It does make a difference, doesn't it?? I'm sorry, though, for all that you are dealing with... but please know we are here for you...

I'm glad you are here...and look forward to getting to know you better.
Take good care...
Tina
Posted 6/24/2010 1:39 PM (GMT 0)
I'm new to this forum, but not new to the effects of RSD, or CRPS. My original injury was a broken ankle that required ORIF and then developed severe RSD symptoms within several weeks. My lower leg was still in a cast, but the pain and the burning was so severe I was close to tears. It was horrible. A trip to the ER, and splitting the cast revealed an almost black/purple ankle and foot. The original injury was February of '08. I had a series of spinal injections which did help but didn't last. There was also a confirmed non-union of the fracture. The ortho surgeons plan was to "wait and see". I waited a year. I changed surgeons and he did a second surgery to remove the hardware and scope the ankle free of severely damaged soft tissue. He sent me to a pain specialist to try and deal with the RSD. I will be having the implant done next month (July 2010). The most amazing thing about this journey is the discovery of how many MD's don't understand, recognize or even believe that RSD is HORRIBLE. The constant pain doesn't allow me to sleep more than a few hours at a time, and I'm taking medicine to help me sleep! The depression has become so severe that more than a few times I haven't left the house for 10 days! I'm just glad I haven't found a rational for something more permanent.

I wonder if any MD's who are trained in the treatment of RSD have made an effort to get RSD treatment taught in Med school. I know now trying to convince practicing MD's to accept the condition and subsequent pain of RSD is a futile undertaking, but if we can get the schools to add this condition during neuro or anesthesia rotations, future victims of this condition might find treatment a little easier to come by.
Posted 6/25/2010 10:09 PM (GMT 0)

I feel like I was reading my life story as I read your reply..... How weird. (In a good way.) I agree. I wish docs could be trained to understand RSDS. It affects more people than I realized 10 years ago. Good luck with the implant. I refused it, so most pain clinics and doctors have given up on me, telling me that I had ran out of options, short of cutting my foot off. At this point, I've given up hope on myself. I'll be miserable for the rest of my life, but that doesn't mean you have to be. Good luck and I hope it works. :-)

Posted 6/26/2010 9:33 AM (GMT 0)
I certainly understand giving up. I feel that option daily. Sometimes it seems like the only rational thing to do. Maybe I'm just naive, but I still believe it's going to get better than this. I don't want to be a head of cabbage that has memorized every line of every episode of Law and Order. My attention span is so bad, I'm even having trouble finishing this post, but I AM going to finish it. I am going to get the stimulator, not because I think it will end the pain, but because there is a chance it could diminish it or mask it enough that I might be able to join an actual discussion that doesn't concentrate on RSD.

I'm not going to tell you to be brave and hold your head high, but I will be here should you ever need to chat or vent.
Posted 6/26/2010 3:29 PM (GMT 0)
Thats really nice of you to say. I'm sorry I come off so negative. Its just, instead of giving me lemons, life has been pelting me with them, and its hard to make lemonade when you hurt so badly from the bruises.
Posted 6/26/2010 9:24 PM (GMT 0)
I do understand the bruises believe me!
Posted 6/28/2010 7:02 PM (GMT 0)
wink  
Posted 6/28/2010 8:30 PM (GMT 0)
Hi Rehhill,

 

I wanted to pop on here and welcome you to Healing Well's chronic pain forum. I am very glad that you found us but sorry to see you here. It is always sort of sad to read of another person being stricken with CP because of one reason or another. Everyone has their own story to tell and they are all different stories.

 

Are you by chance having a trial or actual implantion of an SCS for your RSD? I was not real sure this is why I am asking. I still call it RSD but it has been given a longer fancier name. I worked for attys all of my working years and we did worker's comp and personal type claims and in the early 80's we started seeing people being dx'd with RSD. Back then it was totally unknown and not recongnized by the AMA or paid for by ins. comp. so treatment was almost nil. No one knew much about it and the only drs that treated people with it were PM drs. It is still pretty much the same way. I know you will not believe it, but treatment for RSD has come a long ways since the early 80's. Our clients generally ended up with RSD after having surgery of some sort.

 

I see you have met up with Dagogirl and she too has the same situation. Anyway, just wanted to pop on and tell you welcome aboard. Please keep us posted on how you are doing.

✚ New Topic ✚ Reply