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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Junior Member
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I broke my ankle almost 2 months ago at work. Theres bone fractures and probable tendon damage. I've been screwed around the system, but finally cleared for medical coverage. I've been changed over to an occupational health doctor with a nurse case manager at my appointments. I've had two previous doctors say I have rsd in my foot. My current doctor has me on lyrica which seems to help sometime(with horrible side effects) but the past 2 days the burning has came back with a vengence. My doctor only has me on the lyrica and alleve right now, but its not cutting it. I've gone from on a good night getting maybe 4-6 hours sleep, to being in too much pain to get comfortable enough to try to sleep. Just living on the occasional nap in a chair. My doctor is saying thats about all he can do-that any pain killers won't help. I was previously on medium doses of vicodone and they did at least help. How can I get some relief without coming across like I'm just trying to get drugs. I don't want to say anything in front of the nurse case manager that could be taken out of context making me look like I'm just looking for drugs for fun. Anyone with any ideas? I'm in a confused lyrica haze and don't know what to do. Feeling like fireants are biting my foot!
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#2 | ||
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Senior Member
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I'm so sorry you have had this accident and unexcusable conduct from WC and doctors. There are many on this site that were injured at work and can provide detailed support or direction on how to go about getting help the quickest. Getting appropriate treatment as soon as possible is imperative for RSD. The fireants biting your foot really is nerve pain. This is a neurological disorder with NO CURE, there can be remission if given treatment EARLY. RSD CAN and DOES spread in the body to a large percentage both exterior like feet to hands, face, spine and even interior organs. I personally won'd delay and tip toe around WC that have only their interest at heart. Don't be intimidated by their comments of a pill seeker. Keeping the pain under control is extremely important. Pain out of control can and does cause pain flares, spread.There are many drugs for pain control. I personally take vicodin 6 pills a day. I was on Lyrica for a while that was effecting for the burning pain. Neurotin before thaqt 3200 mg. They both are anti-seizure meds that work on burning pain. They to cause weight gain with some people (myself included) and can be foggy in the head. Anti-depressants help with nerve pain, plus depression. This disorder is a life altering experience and devasting to one's life. Part of the brain, called the Limbic System which controls emotions, decisions, depression is effected. Limbs can be permanently crippled, thus physical therapy is extremely important by someone with knowledge of rsd and just how far to push us. After 13 years of RSD, I am still mobile in my feet, but would be in wheel chair without a doubt if not for physical therapy,massage therapy and swimming, water therapy. I have one crippled had, like a claw. Therapy was delayed due to misdiagnosis. My right hand is good, but has rsd in it. I have full body RSD. Most of us have serious sleeping problems, many of us have terrible headaches. I'm not trying to discourage you, but to inform you how serious this is to get IMMEDIATE TREATMENT. You may need a good WC attorney to get this speeded up and get full possibility for lifetime medical compensation. I know Dew on this site can help you. We have short term memory loss permanently, grasping for words, forgetting words we are looking for in speech, a little slower in getting words out. There are few of us that can get by without strong pain medication. Anxiety is a component of RSD, thus many of us are on anti- anxiety med and sleeping meds. RSD is an autonomic disorder, which is a disorder that effects our organs that are involuntary. Like our heart, lungs, blood pressure, both high-caused by the sympathetic nervous system and low blood pressure, caused by the parasympathetic nervous system. Sweating is common, I go from sweating to being ice cold. We never want to use ICE for our symptoms. Weather changes can effecting our condition and many have moved to warm climates to be in less pain. I live in Arizona. The RSDSA annual meeting was here, in Scottsdale, AZ which I attended in February. They had 4 Drs. and a Scientist speaking. Their website I believe can tell you of your nearest RSD support group. You just put in your zipcode. Most of us are managed by a Pain Center or as in my case, my Neurologist is also a Pharmacologist and Psychiatrist and has helped me more than I can say to adjust to this disorder that totally changed my life and got me on the proper doses and different meds to be able to function. Most of us ca not work- some are. Federal Gov. recognizes RSD for Disability. I'ts really important to have a good Neurologist familiar with RSD. If you are open to say what state and area you are from you may get someone near you to give you suggestions in that area. I would encourage you to read as much as possible on this site, even going back in time to older threads. You can also PM people, that means Private Message and they type back a Private Message keeping personal information to themself. You'll find this a group, like a family, caring, supportive, and willing to do all they can to help you get thru this. Again, I'm very sorry you are going thru this, please let us know how we can help in any way. Your friend,loretta hugs ![]() |
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"Thanks for this!" says: | Dew58 (05-27-2009) |
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#3 | ||
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Junior Member
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Thanks. I've also been stuck with a few fractures in my ankle and some probable tendon damage. W/C and my docs have been dragging theyre feet. I've been having to deal with the pain from those two, and I've realized the pain from broken bones is alot easier to live with than when the burning really kicks in. I've seen posts where people have mentioned problems with spreading of rsd after surgery. I'm probably looking at 1-2 surgeries in the near future. Anyone know if that's gonna be an issue or what precautions I should keep in mind. BTW this forum is a great resource. I try to search things online but cause of the lyrica i always end up forgetting what i was doing
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#4 | ||
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Senior Member
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Dr. Swartzman from Pennsylvania is also very well know. Important thing is to do the preventative measures to decrease risk of spread.Wish you well, and I'm sure others that have had surgery will jump in with what their Drs. did.Take care, loretta |
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#5 | ||
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Member
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geronimo, so sorry about your pain and hassles with WC. I'm a husband of a wife who has RSD and we struggled way too long, stumbling around in order to find a doctor that will treat her. I'd suggest that you become very aggressive in getting the treatment you deserve now. You should not allow for the non-treatment of your pain! Early intervention is key in controlling or even putting RSD in remission. It's one thing if the doctors have no clue what is wrong with you, it's quite another when you've been diagnosed with RSD. Gather support from family and friends now and vigorously seek out treatment for your RSD and bring these advocates along to the doctors if possible to show support for you and that you mean business! Gather your medical records to show your RSD diagnoses in order to prove your RSD diagnoses to potential doctors. As stated earlier be very careful about surgery without the proper procedures to head off spreading of RSD. If you'd like to mention the general area you are located, members may be able to point you to knowledgeable doctors. loretta's recommendations are well known in the treatment of RSD.
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#6 | ||
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Member
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Hey Geronimo,
Welcome to NT. I understand the fire ant feeling and it is painful. I don't have WC involved in my care. I am having ankle surgery on Monday. My ortho talked to Dr. S in Philly to confirm how to block the nerves in the leg to hopefully prevent a flair up. I have full body RSD with orgn involment. My insurance company assigned a care co-ordinator. She was going to go to my appt. with me. When we went over my doctors why I see them and what they prescribe she didn't see a need to go with me. I have called her with questions about different care options. WC is sending someone to make sure they aren't being billed for care that isn't needed. However, you are entitled to proper management of your pain. WC is looking out for their best interested YOU MUST look out for your best interest. Write down the symptoms and side effects and disguse them with your doctor. There are other options than Lyrica. You don't have to live with uncomfortable and life interfering side effects there are other medication options. WC is going to try to get away with paying out as little as possible. YOU must take control of your care it's your body your life. Hang in there, Sherrie |
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#7 | ||
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In Remembrance
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I agree, with what's been said.
Shake off that "Lyrica haze", and get SERIOUS about Your Treatment, Like it or Not, You're stuck with the Carcass that You're in, for the rest of your time here! Take care of it! Have a good lawyer? I personally think you should. You've got a job to do, to get well. Let the attorney do what they get paid for! Find a GOOD RSD DOCTOR! Start today! As was said, if you let us know where you are, some of us might have recommendations. Short of that, I always suggest a University Hospital. In Philly, we have some very good ones. For ones near you, just google them, then check out their website, call their neurology section, and find what doctor is knowledgeable in RSD! Find a good Neurologist. A Pain management psychiatrist. And, Physical therapist. I hate to say this, but it could be a lifelong journey. It took me 7 years to get a diagnoses. By that time, it was going full body. I've had the monster since '83. It wasn't until I got to that "university hospital" Dr Schwartzman, that I was able to find some decent pain relief. All the best.... Pete Asb |
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#8 | |||
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Co-Administrator
Community Support Team
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I second getting a Good wc atty on your side!
Then your atty should have a list of good drs that can help with the wc claim and proving you got rsd from the broken ankle injury. RSD & the cause of it is a difficult claim to prove, so getting a dr/drs that knows a lot about it and can track your pain & symptoms, and give good treatment for it is a good thing. It helps if they also has some experience on claims of this sort. Have you had any xray/MRI scans just to be sure nothing else is the cause of the pain & sx? On member did turn out to have a pinched nerve for years, thinking it was RSD and a friend talked her into seeing a good chiropractor - who did an adjustment of her ankle?? {I think that was her area of sx}. And the pinched nerve was the problem the whole time! Have you had any tests or treatments, other than meds? Look thru our WC forum also for claims and tips info. http://neurotalk.psychcentral.com/forum30.html check the useful sticky thread there too.
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Search NT - . |
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"Thanks for this!" says: | AintSoBad (05-28-2009) |
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#9 | |||
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Member
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HI Geronimo
![]() What is happening to you, is what happened to me as far as the delay in medical attention from WC. It took that lapse of time( 2 months) to make my pain receptors reverse into the non-stop hyper state of pain; which, in turn effected my sympathetic nervous system. My injury happened on 3/24/07. It was a simple median menicus tear (inside part of right knee). I finally had the tear repaired on 5/22/07! The burning pain, the discoloration was apparent immediately. I was ignored by the doctors and the physical therapist.... I am going to email you my story( way too long to post here) and then if you have any questions, feel free to contact me. I hope you feel better...you need an atty., as you need adequate pain relief and you are not getting it. ![]()
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. A Positive Attitude Will Assist Me Toward An Active Life, Once Again . WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009. |
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"Thanks for this!" says: | AintSoBad (05-28-2009) |
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#10 | ||
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Magnate
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I am so sorry. May I ask what state you live in? I saw Dr Stanton Hicks mentioned and I saw him. He is in OH. I called about Dr S and he is taking patients in Oct 2010 but maybe since the surgery issue that would be different. Is there a major hospital in your area that could refer you to someone who deals with rsd? There are many other meds and treatments available and I know how hard it is to find a doctor who will work with you. I have had many that sound like yours that just say it won't help but that is where I feel other opinions come in. I know this is hard with WC.
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"Thanks for this!" says: | Dew58 (05-28-2009) |
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