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New here and looking for friends!
Hi everyone. My name is Kim and I was diagnosed in January of this year with RSD. I am new at this, so please bare with me and help me navigate as I become familiar with this site.
I would very much like to chat with you and hear your stories. I have been unable to work since October, 2008 because of this illness, and I feel like I am losing my mind! I was injured at work; hit in the left hip/buttock by a steel cart while I was squatting down. Torn hamstring and Piriformis Syndrome. My symptoms didn't improve, and finally in January of this year I was diagnosed. Since then, I have seen MANY doctors, had P.T., Chiropractic and accupuncture. I have had several EMG's (awful!), and a series of Sympathetic Nerve Blocks. I have atrophy in my leg of one inch, and can hardly walk, much less function! My Pain Management doc is very unsympathetic to my needs, as I react poorly to Narcotics and am physically sick almost every day. I am at my wits end -- sick from the meds, or in agony from the pain. I just want to be listened to, and have someone understand my situation. If anyone is willing to give me advise, please do! Thank you all for listening!:) |
Kim,
welcome to our group. I'm sorry you have this monster we call rsd, but I'm glad you found us and hopefully lots of new friends. We are here for you on your good days, but even more so on you bad days. We don't judge. what you feel is real and don't let anyone tell you it isn't. I've had rsd for about 4 yrs or so. It started in myu left foot and it now includes both feet, legs, left butt, left side of back up to my left shoulder. I've tried meds, I've had two spinal cord stimulators, and I was just approved today to have the pain pump trial. We all have different experiences and thoughts with rsd. Again, welcome, and please feel comfortable here. Gentle hugs Mary |
Kim,
I'm glad you found us. You'd be hard pressed to find anyone here, who's been diagnosed without going to many doctors, and going through much time. It took me 7 years for a diagnoses, I've had rsd, tos (thoracic outlet syndrome), since '83. In '98 another auto accident, I got a traumatic brain injury, herniated neck and low back discs, and assorted other maladies... (Funny thing is, I'm a healthy old horse, without these imposed injuries). I have sleep apnea (a real bear, w/pain, too). I use a Cpap machine for that.. Take methadone for pain. ( my lifesaver ). Cymbalta / pain, depression. diazepam, for nerves, spasms. zanaflex, muscle relaxer, sleep. imetrex / migraine aricept / to help my brain "think". It's an altzheimer's med. For you, if your PM doctor isn't very empathetic, find someone who is.. There's a limit to what they can do, so, the least they can do is understand. What is your line up of doctors? I've been seeing my neurologist for almost 20 years. He runs my entire show, but is wanting me to find a new "family doctor" he can communicate with, as he had a mild heart attack last year. It's so difficult to find a doctor who isn't immediately on alert for pill shoppers. So, that's his concern. I couldn't imagine if something happened to him. Tell us what you can about your treatment currently, your meds and why, and your doctors. Then, if you have specific questions, we can go from there. You'll find this place is full of kind folks who only want to help. I've gotten so much support and friendship here. Welcome! Pete asb |
Good luck. You do have one big advantage and that is that you have an early diagnosis so you have a better chance of kicking it.
For me this disease has been about learning my triggers. It seems to manifest in many people a little differently like there could be several or many diseases here rather than a single syndrome. I do share at least one thing with you and that is the pain killers are mostly ineffective. Even a large dose of morphine just makes me not care about the pain rather than truly easing it. Methadone has no analgesic effect until the day after I take it! There are a couple I use and find important. One is tramadol apap in fairly large dose. This doesn't end the pain but I can actually feel it kick in so I get a feeling of control over the pain. It seems to reduce it 20 to 40% depending. Tylenol 3 will ease all the associated pain and greatly expand the window to get to sleep. Most of us have insomnia and this one does help me sometimes when nothing else does. It also reduces my dependence on the tramadol. Try to look on the bright side. This can be one of the hardest things of all but it what keeps me going when I'm going. |
THank you for welcoming me!
Thanks to all of you who replied to my post. You have made me feel truly welcome, and I feel like I have finally found a home!
Kim;) |
Welcome TO NT!
I'm sorry for your suffering, but I know that you have found a place where you'll receive wise advice and understanding emotional support.:hug: The link to the RSD forum is http://neurotalk.psychcentral.com/forum21.html |
Hi Kim !
Welcome to NT ! On the bright side........most of us in our search for a doc with a clue have been told it's all in our head, etc and also have had it been implied or said outright that we are drug seekers...at least they can't throw that one at you ! What other meds have you tried ? Are you able to tolerate Neurontin or Cymbalta ? Have you tried a variety of narcotics, or just one ? |
welcome to the site!!! The people here have helped me tons! I too was injured at work (left arm) spread to all my limbs eventually.... but I am back to work now and hopeful. I heard the pain pumps can work great...and they don't have the same side effects as taking the meds by mouth.
Jennelle |
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I was on 2400mg of Neurontin, but found that it severly impared my memory (renting the same DVD, telling the same stories, etc.) so I slowly weaned myself off. I currently take Percocet, 30mg Baclofen, two hypertension meds and Lidoderm patches. I also have a TENS unit, which helps greatly. I am trying to get a new pain doc, my current one just doesn't seem interested in the fact that my meds make me sick on a daily basis (I won't be graphic here). But since it's been a year from the w/c injury, nobody wants to get involved until my permancy hearing in December. My current pain doc just doesn't listen to me (about the nausea, etc) and is not willing to change my meds to something I can better tolerate. He makes me feel like a junkie. I wouldn't wish this on my worst enemy! I just want my life back! Thanks for your interest and your reply! |
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So sorry to hear about all of your issues. Makes mine look like a walk in the park. Thanks for your optimism! :winky: |
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I am so sorry you have RSD-you will find many compassionate, kind, and educated friends here. I have no knowledge of WC, but know it's important you get long term compensation. This is a very expensive disorder -meds, tests, over the years. Many get an attorney and feel in the long run, it's worth it. I believe in getting a specialist in any field, WC attorney, RSD Doc etc. Some states have an unlimited time for compensation for your work injury-in other words lifetime medical. Science is coming up with new things all the time. The national organization for RSD is RSDSA. They had their annual meeting here in Scottsdale, AZ in the spring. I attended. I do know they had a DVD made of the meeting to be made available to all later. 135 attended Sat. and Sun was for the Drs. and professionals. By going to that site, you can put your zip code in and get the name and phone number of a support group closest to where you live. We have a meeting once a month here in Phoenix. We have RN's , nutritionists, pharmacologists, drs. speak. Very encouraging. I personally could not tolerate having a Dr. that doesn't show respect or compassion to me. I've had this 14-15 years now. Full body and internally. RSD is an autonomic disorder, meaning it affects the involuntary organs, like heart, lungs, bladder, colon, circulation, blood pressure.. Besides high blood pressure, we can get low blood pressure, which we can pass out from. I usually have high blood pressure on 2 meds, but woke up one morning and passed out-low blood pressure. My family did some research of their own, and are compassionate. I know it's been a loss for them too. We were such an active family. Thankfully, our daughter was 15 when I got it following surgery. I had a lot of physical therapy and massage therapy, densitization is very important! I had a good orthopedic hand Dr. Was misdiagnosed so have a partially paralyzed hand. I have a neurologist, psychiatrist, and pharmacologist. I call him my 3 in 1 Dr. I'm grateful to be mobile, Insomnia is an issue with a lot of us. My Dr. did a 200 person trial study on seroquel for it's affects on fibromyalgia, which I also have. It had a positive response on sleep issues. I take 300 mg and sleep 10 straight hours of restorative sleep. Because of good sleep, I was able to cut pain meds in half and anxiety meds in half. When I have a flare, I have to go back up. Dr. Hooshmand, a retired RSD DR. from Florida still has his website up. rsdrx.com Under Puzzles List are 146 questions with his answers. I think it is very good. I'm so sorry you have this- You are welcome any time to ask me any questions. PM means private message. Take care of yourself. I'm on a high anti-oxidant diet. stretch, as much as I can do. Oh, the desenstizization is get about 6 bowls-put cotton balls in one, rice in another, sand in another, fabric pieces in another, coffee grounds in another. Run your fingers-hands in each one-feet-toes in another one. And just go thru them so you get used to touch. It will help you in the long run. Distraction is a huge help. Music, scented candles, journaling, reading, meditation, prayer, visualization, biofeedback. I had frozen should twice-physical therapy and massage therapy helped me a LOT-I'm mobile because of it. Have a tens unit too. It was 4 years before I was diagnosed. But I did go into remission twice after each frozen should treatment. I took 100 treatments each-physical therapy, massage therapy. When I have a blood draw, I get a butterfly draw-small needle. Before dental work, take anti-biotic, laughing gas, take a lorazepam to relax. Take care, I'm 61 married 42 years, 1 daughter 30 married, wonderful son in law. and glad we moved from Oregon to Arizona. I'm, like most others, are affected by the weather. I'd encourage you to read read read, and we deserve respect and be treated with dignity. I've dropped a few Drs. for not observing those basic principles. Your friend, loretta soft hugs:grouphug: |
If he makes you feel like a junky find another doctor ASAP. It appears you are in Maryland? If so I live near you and grew up in Maryland. My wife has RSD and battled for years to get her treated. Since you've gotten an early diagnoses it is important to get vigorous treatment now as Imahotep stated. If you are in or around my area, near Washington you should try George Washington Hospital Center's pain rehab center and contact Dr. Chin. Or try Johns Hopkins in Baltimore. If you are near Old Town, Alexandria try Dr. Batista Quint at her small pain clinic. You can PM me if you'd like more info. I hope you the best of luck.
jim |
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Hiya Kim, I (and others) gave you a specific answer on your other post "nausea and meds"... Ask your Doc for Promethezane, (sp) it's very inexpensive and for nausea due to meds. See the other thread for the correct spelling... I've got rsd brain today! Hope you get some relief, I know how upsetting that is! :hug: Pete |
Hi Kim,
Welcome. I haven't told my story in a while, or maybe not ever. I can't remember. Sorry if it's too long or too boring... to me it's become very, very overwhelming and sad. In a few days it will be 3 years since I hurt myself at work carrying a workbag that was too heavy because my co-worker was pregnant and I didn't want her to carry anything. I tore my rotator cuff and had 2 surgeries to fix it, and somewhere along the line my sympathetic nervous burped and I developed RSD. I'm 48 years old, a CPA and a CFE, and have been on a disability LOA since June of this year, which in retrospect was one of the worst things I have ever done - I have been severely depressed since taking the leave, work was very good for me I just didn't realize it at the time. I should have pressed my employer for PT hours, even though our office does not really allow it. I may have been able to work something out instead of being home ALL THE TIME, which I hate. I was officially diagnosed in June of 2008 - first in an emergency room where I went when I thought my shoulder was infected because it felt like it was on fire and going to burst. I asked them to do a blood test to get my sed rate and my white blood cell count. Both were normal. Two days later my RI orthopedic doc diagnosed RSD and sent me to a pain management doc in RI. The RSD started in my shoulder and spread to my cervical spine and occipital area of my head after a series of trigger point injections in the summer of 2008 administered by the RI pain management doc. I learned some of the most important lessons with RSD the hard way - an immediate series of sympathetic blocks right after diagnosis can help put you in remission (the RI doc wasted 6 months of my precious time), and RSD areas and those adjacent to the RSD areas should NEVER be injected. Since that time I have not been able to lay down on my head - in bed, in a chair, in a car, not ever. It hurts too much. I was fortunate to find an excellent pain management doc in Boston, Mass in Dec 2008 (from a co-workerr whose son has RSD). Since December 24, 2008 I've have 8 stellate ganglion blocks, 4 lidocaine infusions (the last one just this morning), and one lumbar block. I've had periodic problems with what I've suspected has been spread to other areas, especially my right leg which is extremely swollen and full of fat ugly blocked varicose veins. The pain in that leg has been greatly reduced since the second lidocaine infusion and the lumbar block. (In the summer I wore long pants to keep that leg hidden - it is just nasty looking!). My feet were just awful last winter when it was cold and I walked like crazy to keep them mobile. I only wear Crocs because when my feet are constricted they swell. I have other symptoms of RSD, too - my hands are usually cold, so I wear gloves almost all the time, (especially when I sleep), loud noises hurt my ears, bumpy car rides are tortuous, etc. WC has been vicious to deal with, routinely denying everything that crosses their desk - meds, PT, my docs, my psychotherapist, etc. I am beginning to think that the attornies are really the ones who have won in my case - they go to court over and over and over, both mine and the insurance company's. By now they know each other well. They are both named John. I could not do this without an attorney, and even though I have one of the very best in the state it is still a struggle. I have been accepted by Dr. Ronny Hertz at St. Luke's for ketamine infusions in NYC but no date has been set - he estimated that he would be available sometime in Jan 2010. I have an appt to see Dr. Philip Getson in Marlton, NJ on Dec 3rd for a work up, he also has ketamine and does thermography so I can get a picture of all the RSD spots in my body. That will be cool. I have heard that he is an awesome practictioner so I am looking forward to meeting him very much. He is also located near my mom and dad and one of my brothers, so that getting treatment with him will be easier for me than NYC. My husband and I will have somewhere to stay when we travel. Unfortunately, Marlton NJ is 268 miles from where I live in RI. I am now working with my psychotherapist on "mindfulness" training. I sincerely want to get better and put this all behind me, and get back to work in some capacity. My office is holding my job for me for one year from the date that I left, but I hope to return sooner than that. I can't work with the meds I am currently on, and that is why I left. My reputation as a professional is really important to me and I was starting to forget things and make mistakes, and I didn't want to be driving late in the day when I was tired and taking meds. I am on Fentanyl, Percocet and Methadone - as well as Topamax, Cymbalta and Clonidine (sp?), and use Skelaxin and Ambien CR to sleep and Voltaren - a topical gel and 2 types of patches - Lidoderm and Flector. I have developed a tolerance for opiods and my doses are pretty high. I rarely drive now, except in the morning. I used to go to PT twice a week, but stopped that about a month or so ago. I miss my PT guy who always demonstrated a sincere interest in my case but it is better that I am not driving there anymore. My head definitely felt better when he took care of it. I do not know if the WC court will authorize ketamine and the travel expenses associated with it. WC has already denied it, no surprise there, so the matter will now go to the courts. I will likely use my accounting skills to prove that the cost of getting me better with ketamine treatments will be less than keeping me sedated on about $3,000 or more of meds and $2,500 treatments in Boston every month while being disabled and unhappy for the rest of my life. I am hoping that Dr. S's recent double blind study holds some weight, I have provided it to my attorney. Interestingly enough, WC sent me for a QME or whatever they are called just recently, and I had to go back to the same ortho doc that caused my RSD. I told him that I wanted to get better and go back to work, and for that I needed ketamine. He deemed me NOT to be at MMI. My caretaker and best friend is my husband of 25 years. I married him a year and a half after I graduated from college, when I was only 24 years old, and he is the very best thing that ever happened to me in my whole life. We have 2 kids, a freshman in college and a sophomore in high school. RSD is by far the hardest thing that we have had to deal with so far in our marriage. There have been so many difficult times - The initial injury, the surgeries, the RI docs who messed me up, the RSD spread when I was in excrutiating pain and vomiting and we had NO CLUE what was wrong with my head. All of the traveling to Boston and the scary procedures (I HATED the stellate ganglion blocks, I am a WUSS!). And it's only been 3 years. There are some great people on this board and some very good information. Get yourself an excellent doctor that cares about YOU - go to a large univeristy or city hospital pain center where you can get evaluated by the best of the best in your area. ASAP. And read as much as you can, the RSDSA has some excellent info on its site. Take care, XOXOX Sandy |
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What ever you do, don't give up. Remember that we are all here for your support and will help you in anyway we can. Most importent, keep a positive attitude and do something special for yourself each time your feeling down. Don't allow this horrible affliction wear you down to the point of feeling hopeless. We aare all rowing the same boat. Take care..and keep a stiff upper lip. mellowguy |
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I, like you, very much enjoyed my work. I am a manager for the Banquet Department at a large casino. My average work week was about 80 hours, and during race week (NASCAR), 120 hours was the norm. I do nothing but walk, usually 10 miles a day; so this injury has totally taken me out. I have a hyper active personality, and to go from that to total disabiliby has taken a HUGE toll on my emotions. Like you, my husband is extremely supportive, and even married me after I got hurt. (We were married this past May). I hope the Ketamine treatments do wonders for you. I researched them and found that most people who get the treatment get tremendous relief. The thing that scares me is the hallocinations (sp?). I wish you luck with them. I have found that once I lowered my expectations of myself it became easier for me to relax, which helps the pain. I am trying to lessen the narcotics because they make me terribly sick, but, as you know, its either the side effects or the pain. Kind of a double-edged sword. I look forward to talking with you again! Kim |
Kim - you are welcome! I can't emphasize enough the importance of getting the right medical care. Since you are in Maryland (and I am guessing that you worked at Dover Downs?), you have access to DC, Baltimore and Philly docs. Research who the best are and try to get in. Perhaps make an appt with Dr. S at Drexel. You will need to wait 18 months or so. FMichael, who posts on this site often, has previously included a link to sites which will help you find board certified pain management docs and board certified anethesiologists. "Ain't So Bad" Pete, another frequent poster, has an excellent neurologost named Dr. Knobler at the Knobler Institute (Pete - please jump in and correct me if I am wrong?) who is located (I think) just outside of Philly in NE Pa. And I am traveling soon from RI to visit Dr. Philip Getson in Marlton, New Jersey.
I made a critical error early in my diagnosis. I wasted the first 6 months of my diagnoses letting a RI pain management doc inject bupivicane and steriods into my cervical spine, my SCM, and my occipal area. I thought because he was board certified and on the teaching staff at Brown University he could be trusted not to cause me any harm. I was so, so wrong. By the time I found a doc to treat me in Boston it was too late, I had a series of stellate ganglion blocks but they only worked short term. I can't lay down on the back of my head because it is too painful and probably always will be. For a while I thought that perhaps I would hire an attorney and go after the doctors that screwed me up so badly - it used keep me "sane" to think that. Now I don't know what I think. Just fighting with workers comp all the time has me worn out, and I care more about getting better and going back to my old job than thinking that I'm going to win a lawsuit and not worry about $ someday. The chances of that happening are likely to be very slim. You have to take care of yourself. Also - a good PT can help a lot with RSD, I had one for a year and I make sure that I do all the exercises every day. Try to find one that is well versed with RSD or that is willing to research it for you. The best of luck to you. PLease keep in touch. XOXOX Sandy |
Kim,
I'll be getting the pain pump trial at the hospital in Silver Spring. It's Holy Cross. It's in Md. Of course, I live in Virginia. it's almost and hr and a half to two hrs drive one way. I sure hope the pain pump work. It's a long drive. Luckly, I'll be in the hospital for the 4 day trial. I'm still waiting to hear when the date will be. I'm hoping for a week or two, but somehow I think it may be a couple of weeks yet. Then I have to wait for the perm pain pump and then the long healing time. But then I'll be able to go back to riding horses and all the things I used to do. That is, if it works. I'm sure hoping Hugs Mary |
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jim |
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I have been thinking of you and was wondering if you are still plagued with nausea? A med that has helped me so very much is an anti-anxiety med called lorazepam. Because it calms the nervous system down, I'm able to take less pain meds. I feel the same way about the compassion and encouragement from all our friends here. Thank you for your sharing how you feel about the comfort we all receive here. Take care, loretta with soft hugs:grouphug: |
Kim, and others who have recently joined:
Welcome one and all. Please know that you are free to vent here if you need to do that. We all get frustrated from time to time and just need to let loose. We are here to lend an ear and, perhaps, give a kind word or maybe even just the right advice. There may be a few of us who are medical professionals, but mostly we are “plain folks” who are discussing our own experiences. We may forget to include that caveat when we post, and you should always discuss any medical advice with your doctors first. Everyone has different conditions and reacts differently. Also, never ever be afraid to ask. There are no dumb questions. If you do not understand something that is being discussed, please ask for a clarification. If you are confused, so is someone else. Finally, we do not care about writing style. We are not here to judge you like your seventh-grade teacher. Express yourself. As long as you get your idea across, do not be too concerned about whether you are a good writer. We do not give out Pulitzer prizes. Glad to meet you, even though it is through less than happy circumstances. Mike |
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just a quick note to let you know that we are hoping you are experiencing the least level of pain. As each day goes by, there is new hope for research to find an antidote to this agony that errupts our sympathetic nervous system. Don't be afraid to vent or ask anything of us. No one will turn you away or think negative thoughts of you. As I said before, we are all rowing the same boat together and, If we are to reach the shore of healing, we have to communicate our wishes and desires of what direction to steer the craft. As wind is to a sail, so is our hope of relief. Hope your having a better day and your mood is bright. Peace be with you, mellowguy |
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Thanks for your words of encouragment! I really appreciate everyone's advice and genuine concern. I'm aware that RSD affects the entire family, not just the one with it; and I feel so guilty and selfish for easily sharing my pain with my loved ones. It's very refreshing to have an outlet to vent where everyone else understands completely. I feel like I have found a home because of you! Hope you have a wonderful, pain-free day. :D |
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hang in there Kim.
have you tried the fentanyl patches? rolfing? phenergan 25 or belladonna for the nasea? Mike Quote:
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Thanks for the response. No, my unsympathetic pain doc won't prescribe them for me. I was taking Phenergan 25, my nuerologist took me off because of muscle tics, but I started them again; I would rather twitch than vomit. I go for my Independant Medical evaluation next month, and after that I am switching to a more caring and understanding pain doc. (W/C insurance games). I realize that we all need to make choices to become semi pain-free, so to me, this is the lesser of two evils. Hope all is well with you and yours. Kim |
YaY! Morphine?
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Loretta...Thank you with all my heart! Your advice has helped me tremendously! I thank you for the ideas and your belief in me; and in all of us.
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