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Hello Luthier
Sorry you have RSD. Yes you will make some more friends here. I came here some years ago and never left because of the people I met. I have PN, not as bad as RSD. I use the Lidoderm patches, and get good relief. Maybe try them on the worst areas you have. I understand why you don't want your mental ability messed with while you work with saws.
You are an inspiration to others, to keep on trucking. No matter what our hurts are, trying to get the most out of life is what it is all about. Glad you like the guitar and play. Head of Joe Bonamassa? Have a good night with less pain. ginnie |
No they never caught them. I never even saw the vehicle either, I mean I saw a glimpse of a blur as they passed while I was in the process of falling lol. So I never got a plate number or anything like that.
Oh yeah! I hate that, "you can do it, just do it!" "Oh yeah?!? **** *** I haven't tried that, I'll ask my doc about em the next time I go in. He gave me lydocane ointment the last time I saw, what a joke that was. But i get where he was coming from wanted to make sure that I'm not some kind of drug fiend since I have long hair and a beard. *admin edit* |
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New and I have Some Questions
Hello all– so what brought me here, was in another forum, someone mentioned “CRPS” and I had no idea what it stood for. I looked it up, and to my surprise almost every symptom seemed directed at me. Let me take you back 10 months ago.
Memorial weekend 2013, I was involved in a really bad ATV accident; where I sustained high-energy breaks. I had two very displaced breaks in my tibia, and a very displaced fibula break. I had emergency surgery to fix my leg; which was an Intramedullary nail, and screws. 3 days later, I ended up deathly sick from an infection resulting from one of my incisions. Back in the hospital for 3 days, to get the infection under control. During the next 6 months I had so much pain, which resulted in another surgery. After my last surgery I had experienced a lot of Achilles pain from taking some of the screws out of my ankle. Finally around February, unable to get out of this major exhaustion and pain, I decided to go in and get a blood panel done; which came back normal. I was told however, the extreme fatigue could actually be a reaction to the anesthesia, and it can last up to a year! Two doctors stated this, but I simply can’t find any info on it. I’m going in to see my primary doctor next week, because I can’t live like this. I can hardly keep my eyes open, and the pain experienced daily has worn on me. I figured I would get others opinions and see if anyone has any ideas???? I really appreciate any information! ~Becca |
New to forum
Hi All,
I found this forum while trying to research ketamine and neurostimulators. I have had CRPS for four years. I also have fibromyalgia. I was unfortunatly diagnosed late with the crps and so missed out on the early treatments. I kept telling my doctor that is what I thought it was but they didn't believe me. I knew about it because I have a friend who has it. Mine started after surgery. I have had several nerve blocks which have not helped and tried all different medications which I do not tolerate well. I am debating what to do next. I started seeing a new doctor this week who was very nice and he told me to consider the neurostimulator vs the ketamine infusions. |
Hello Super girl
Sorry you have CRPS. I know people who have had each of those therapies. I have had Ketamine infusions myself. I think for me anyway, I had to do the least invasive of the things to try. The ketamine did work for me, for the condition I have for a period of about 4 months with good pain relief. This was done under fluoroscopy. Good results have been published through JAMA, and are available at your local library. I wish you all the best. ginnie:grouphug:
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I think that you should also look up conditions that mimic the symptoms of RSD/CRPS. In the mean time, it couldn't hurt to start taking Vitamins. Specifically C (in large amounts over the course of a day, it naturally reduces swelling, don't take it all at once otherwise you'll just urinate it out, like 1500mg at a time maybe like 3 or 4 hours apart.) Also Vitamin B12 is good. My personal favorite are the cherry flavored ones. B12 not only boosts the metabolism but it's also good for your nervous system, also in the healing process to make new DNA for cells, I take that after every meal, but not after dinner otherwise you'll be up all night lol. Two others that help with pain are Tumeric, which I've only found in Indian food stores or online, they come in a pill form and I take one everyday in the morning after breakfast. and the other one is Stevia in the Raw. Put a couple of those packets in a pitcher of Ice tea and it can help with pain as well. Now Tumeric and Stevia aren't going to work right away, they both have to build up in your system for awhile before you start seeing any kind of results. I hope this helps. I've had CRPS for four years, and it helps me, doesn't completely take the pain away but it helps. |
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Welcome Luthier, though I'm sorry you have CRPS and really sorry about the way you got it - so unfair.
I haven't had CRPS as long as you have. I've had only had it about 15 months, so I'm still adjusting. Like you, I still work full time and am just trying to get on with my life as best I can. I haven't tried very many medications because they all seem to turn me into a zombie, which is no good for work (though there are no band saws in my office :P). It sucks that people stare because of your handicap tag. Why stare? You have it, so you obviously need it. I'm sure they don't just give those away to anyone who asks. My CRPS is in my right hand/wrist/arm and unless you look closely, you can't see anything wrong with it so people bump into me all the time. It is wonderful that you have friends that look out for you. I have some good people around me too. But sometimes there is just no substitute for talking to someone who knows what you are going through and just 'gets it' without any need for explanation. I have different levels of explanation I give to people depending on what seems appropriate. My shortest version is - I had surgery to repair torn cartilage; it didn't end well. Lol. I think it is great that you have been able to continue working. You must have an amazing sense of accomplishment when you finish an guitar. My husband is a musician. He plays guitar mainly (and sometimes bass) so I know how much guitarists love their guitars. This forum is full of wonderful people. I hope you enjoy being more involved. KimA Quote:
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Hi everyone here, I've not really been on this thread before, but I meandered over today...:winky:
Luthier, your story really struck a chord, I have a lot of admiration for you dealing with this and trying to remain who you are rather than let this thing overwhelm you and change you too much. Everyone here is amazing though lol. We need to be. I'm a musician myself, although a totally different type - I play the piano and cello. Our musical abilities might be in very different directions, but that fear the CRPS affecting your ability to do it is the same. I have my CRPS in my left leg and feet mainly (following knee surgery 3 years ago), but it has spread to my left side, including my hand. I'm not as deft wi those fingers as I was, and I play every day to try to keep things moving and as supple as possible. Its scary stuff, there's no denying it. Love the language and attitude :p I think we need a bit of that to get through all this!! There are plenty of friendly folk here, and we do understand the fun cripsy things that friends and family just can't understand... I wish you and everyone else here loads of luck as you fight this. We might not win in terms of getting cured (ha, we wish), but we can win in other ways. Gosh this is rambly and strange. I swear this thing has got to my brains and scrambled them lately! This didn't come out quite as I wanted....but it'll have to do! :winky: Bram. Quote:
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Hello my RSD
Hello my name is Steve and I am 46. I was diagnosed with RSD in 2010. It took me 20 years of doctors visits until I went to a neurologist in Philadelphia PA.
My RSD caused me to lose my job as a nurse. I am on full disability. I can walk very short distances and for longer ones I have to use forearm crutches. The pain in my legs and lower back is bad at times that it takes my breath away. I have pain in my hands and I get stiffness in my fingers my back and legs. One of the best therapies for myself (self therapy) is kayaking. I go kayaking every other day for a few hours, it helps me get some exercise. I love to be in nature and this helps me relax. I was going to my doctors for Lidocaine infusions and would have finished my treatments this past week but I received a call from my doctor and they told me that Medicare would not pay for the treatments any more. My faith in God is really strong and I know that with him I am able to get through anything. I hope to have conversations with a lot of people on here, I believe that if we ban together we can get through anything. Steve |
Hello
Hello I am new here... I have RSD about 7 years ago in my left arm from a car accident... I have the electric simulator in my back...Also I had a lower fusion in my L-4 L-5 and S-1 and S-3 in back....Had that two years ago.... Now out of now where in Jan. this year I woke up in pain..I get numbness down both of my legs and my arms.. Get pain in my lower back where it's hard for me to walk, sit and even stand...Went to the doctors and they said it could be Fibro???? It's been six mos about and still no better... Now the doctors say I could have an infection in my back since I have two different temperatures.... also said that I have a really bad flare up???? I was just wondering if anyone else is experiencing this at all .. Any help would be helpful..
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Introduction
Hello everyone,
I was diagnosed on my 13th birthday with CRPS Type 1 (formerly RSD) in my right foot. I had a soccer injury that involved a girl twice my size crushing my foot and then hitting that same foot a few days later. Looking back, I was always very sensitive to hot and cold and pain. We went in for 2 MRI's, 3 X-rays and a few other tests thinking it was broken or i had torn a muscle, ligament or tendon. At this point it had only been a few weeks and we went to my pediatrician. Her husband, an orthopedic, had actually just talked with her a few days ago about "RSD" and some symptoms. So she sent me to him. My foot was cold, I couldn't walk, my foot turned blue, and i could sleep from the pain. He took one look at it and told me it was RSD and immediately put me on amitriptyline for sleep. That summer I relearned how to walk at the beach, per his suggestion as sand is easier to walk on and swimming would help. It was painful at first, but after a few months, i was able to walk again. Honestly I can say I am very very fortunate to get an early diagnosis, at the time, my Dr was surprised since I was so young, but still I am glad I got treatment. i still have flair ups after injury (considering all the times Ive had them) but instead of medication I got to either my acupuncturist or my acupressurist and constantly rub or touch the area to desensitize it. |
About Phaedra
Just thought I would share a little bit of how I ended up here and who I am. I am married. I have two grown children from previous relationships. I am or was a truck driver for 4 and 1/2 years. I was driving a bus at a well known Christian University. This is where I was at when I fell in the parking lot going down to the lower bus lot. This fall sprained the inside of my right ankle and tore the ligaments on the outside of my right ankle. I hit so hard on my right knee that It caused patella femoral maltracking problem, bursitis, chronic exertional compartment syndrome, and the MRI also showed a entrapped nerve in my knee. This is what caused the CRPS. Weather it was the damage to the ankle or to the knee that actually caused it, I don't know. I fell mid DEC. and only got a little better. It wasn't until I had the emg done in the first part of March that CRPS was even diagnosed by a orthopedic doctor ( not my doctor) in another city. I had to wait till the end of March to actually hear it from my doctor. Still waiting on the Pain Management Doctor don't get to go see him until Mid June. I so enjoy the waiting game that certain organizations like to force people to play. I have had a whole host of problems arise from this. Panic attacks, blood pressure issues, cycle problems, and of course spreading. I now feel this in both my legs and arms, I even feel it in my body. The newest thing is now my sugar likes to drop and make me sick. This is all new to me and have never had these kinds of issues. So now That I have shared my ugly story. What is next?
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Hello Phaedra
I am so sorry about your fall causing CRPS. I know how awful that is. I was lucky and only got PN from injury.
While you are waiting for pain management, look up Ketamine infusions. This is the latest being done for CRPS and it has a good track record. Hard to find places in the US that works with this. Tampa Bay hospital is one of them. This Ketamine has had remission reports, through JAMA which is a medical journal with articles from around the world. This mag. keeps up with the latest in research. You might want to ask you doctor when you go see him. If he is has education about this, he may recommend something like this. I wish you all the best. ginnie:grouphug: |
My Story
I have been a member here for a very long time, but actually never told the whole story of how I got RSD. Finally I put it down in video. So I decided maybe I should finally share it in this thread.
I have read all the stories, and my heart breaks for everyone. I will always be praying for all you :grouphug: http://youtu.be/g5Q5msVJInk |
outside looking in
Hello all,
My name is Newt and i am the partner and full time carer of a CRPS sufferer in the UK. She was diagnosed 9 years ago after i took her to one of my appointments with a consultant rheumatologist and insisted they examined her instead of me. Before that she experienced a string of sceptical or baffled GPs who refused to either believe or understand the severity of her pain given that she appeared entirely normal. It has been very hard over the years to help her stay positive and not retreat into depression. Some of the things she has been told by GPs which you may be familiar with are... 'it's just a mental health problem', 'your condition is not a REAL condition', and 'i don't see any problem other than you trying to get prescribed medication'. Soul-destroying for a patient when they are having to fight the pain AND their physician. For those who have been recently diagnosed i would urge any of you to change doctors the moment you get the sense that they are being dismissive or lack previous knowledge of CRPS. A good GP makes a huge difference, and when under the care of a pain consultant, be pro-active. From our bitter experience, waiting for them to send you an appointment rarely bears fruit. On one occasion the clinic told me that they had not invited her to see them for 9 months because they just 'assumed she was better'. *facepalm* I cannot begin to understand how it feels and the courage it takes you all to live with this illness. It has robbed the woman i fell in love with of almost her entire personality. She often behaves like a cornered and wounded animal, and that her pain is a seperate person and they are locked together in a sort of mutually destructive relationship. (if that makes any sense lol). Despite this she finds the strength to do exercises/OT techniques when she can, and to make room in her suffering to love me which i will be forever grateful for :) Although together 24/7 from the start of her problem, i still feel like i am lacking the fundamental understanding of what it is to live with pain having not done it myself, and hope to gain a better insight by reading your collective thoughts, ones which she sometimes struggles to convey or that i cannot decipher. It sounds like a really selfish reason to join a group lol, but i am looking for ways to expand and use the compassion i have in a more supportive and constructive manner, with the ultimate goal of a higher smiles-per-day ratio here at home :D Wishing you all easier days, Kind regards, Newt |
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Welcome. How wonderful of you to be so supportive and caring. |
Hi, I'm Jenn. I would have to write a novel to tell my entire story.
Firstly, I should note that I also suffer from severe Narcolepsy with Cataplexy. The wonderful sleep disorders team at Mayo Clinic in Jacksonville, Florida take great care of me. I began having nerve entrapments - one after the other. After they healed with physical therapy, the pain increased. Long story short, I was diagnosed last month by my incredible anesthesiologist, with CRPS II. It's spread to my entire body, with autonomic testing done; and dystonia, at Mayo Clinic confirming all my symptoms but coming up with no name for my mystery pain. Honestly, I'm a bit frightened after reading up on CRPS. Also, relieved. Relieved that I finally have a diagnosis, frightened and relieved (depending on the problem) that many issues I've dealt with for five years have been CRPS all along. I don't use my laptop much due to the arm pain, but a sympathetic nerve block helped with range of motion. Because of this, my iPhone is my constant companion. I'm 33, married (although my spouse gave up on me and not supportive in any way), have a six-year-old son with high-functioning Autism. I've been trapped like a rat in a cage, on SSDI since October 2010. My last day of work was January 23, 2008. Well, I'm looking forward to lurking around a bit :winky: to absorb your insight and knowledge. Beside my health problems, I'm a friendly person with a great sense of humor. We need to laugh, right? Thanks, everyone. |
HI
HI Jenn,
I live near u in Holiday fla, think you are the first person I have seen on here that close to me..Welcome sorry it's for the reason it is but everyone here is amazing! I hope u find the peace you need here, take care HEIDI~ |
My CRPS Story
Hello Every One!
I will try to keep this as short and sweet as possible, but I'm incredibly long winded so I doubt that will happen! Let me introduce myself and just tell you a little overview of my CRPS story. My name is Courtney and I am 33 years old. I first developed my symptoms about 2 years ago, at the end of July, 2012. I was an avid athlete. I ran or swam nearly every day, I was on many athletic teams with my friends (softball, kickball, volleyball, dodgeball), I was active in some way practically every day whether it be zumba, dancing, aerobics, or somethings else. I loved to move. Towards the end of July I started to have a lot of pain in my right foot and ankle, but I had been diagnosed with Lupus when I was 20, so I had had a lot of experience with "mystery pain" and I often just worked through it. I had learned to just not complain about my chronic pain because there wasn't much they could do for me and being active was the best medicine for me. By the time the first week of August had rolled around I couldn't put any weight on my foot at all so I knew it was time to see the doctor. At first the doctor thought it might be a stress fracture, which made sense given all the running I was doing. The x-rays and MRI's however showed nothing and the pain kept getting extensively worse. Fast forward to February of 2013 and my right foot is still in an orthopedic boot (had been that whole time) and the pain has increased to the point that I can't walk the few steps from the couch to the bathroom without being in screaming agony. My foot is swollen, constantly changing colors, very sensitive to touch and water, the skin and hair is changing. I have by this time seen several doctors and still do not have a diagnosis. The pain is incredibly intense and keeping me up at night. Finally I was diagnosed with CRPS. Looking back it seems like a no-brainer. Unfortunately, too much time had passed for many of the treatments to do much good, plus the therapists had been using ice on my foot from the beginning (even though it was excruciatingly painful). The doctors that diagnosed me did not have the best bedside manors... They basically told me I would be crippled for life, there was no hope for me, and that I may face amputation down the road. The doctors also weren't that knowledgeable about CRPS in general. I also went through an extremely high stress period during this time. My then fiance heard my diagnosis, cheated on me, and then left me for the other woman because he couldn't handle "being with a cripple". (I guess he wasn't ready for the "in sickness and health" thing) That same week (while I was at my parents recuperating) my house was broken into and everything not nailed down was stolen. And then later that month I was forced to leave nursing school even though I had a 4.0 average, because it had just gotten to be overwhelming for me. We all know that stress can exacerbate CRPS and I really think that dealing with such an extreme amount of stress during my diagnosis and while I was trying to come to grips with everything just made my condition so much worse. In the beginning I was not very knowledgeable about my condition. I thought I was, but I wasn't. I trusted my doctors when I shouldn't have. I believed them when I shouldn't have. In May of 2013, my doctors offered me a Spinal Cord Stimulator, telling me that it was my last treatment option for any relief. I should have done much more research. I thought I had done my homework, but I hadn't. I had the SCS implanted in September of 2013. At first I really thought it was helping, but then my CRPS started to spread. I think the surgery to implant the SCS is what caused my CRPS to spread. My CRPS is now in both lower extremities from the hips down and in both hands and forearms. It also sometimes is present in my throat and neck area as well as my lower back and abdomen. In just the last few weeks I have been having the burning pain and sensitivity to the water in my upper back. My stimulator doesn't even work anymore. I will never have it removed. I am still looking for a better doctor to treat my CRPS, but every doctor I have tried to see has declined to treat me because of my "complicated case". They have all confirmed my CRPS, but nobody wants to take on my case bc it is too much work for them. I not only have all the typical CRPS symptoms, but I also have severe nausea and vomiting that is present on a near daily basis. I strongly suspect this is related to the CRPS and have even brought my doctors several peer-reviewed articles that suggest these symptoms could be the result of CRPS being systemic in nature. I have a strong suspicion these are being thrown in the trash as soon as I leave. They just send me to a GI doctor (who by the way has never heard of CRPS), who as soon as I tell him these concerns says "you should have told this to your neurologist"...hmmm In positive news, exactly a week after my back surgery I met the man of my dreams. He has never seen me as a disability. He thinks I am the bravest, strongest woman he has ever met. We just moved in together this week and he takes such great care of me. I can finally rest! I am looking forward to getting to know everybody on here and hopefully we can all help each other out! I am no longer working (I am in the process of applying for disability) so I find I spend most of my good days on the computer. And well, I find if I have a bad day I would rather vent to someone who truly understands than to the people who try so hard to understand but can't... those people need a break every once in a while! ;-) Gentle Hugs! Courtney |
Hello!
I'm Chase. I was diagnosed with RSD back in autumn 2010, stemming most likely from a surgery back in 2003. I'm 27 now and between neurologists, so I'm pretty frustrated. I am a trans man in Philadelphia (Pa, USA) and for me, testosterone helped with the secondary symptoms of the RSD a lot - making things manageable for a while. I work full time at a non-profit and stay pretty active - yoga, activism, community organizing, playing with my dog. I am not currently on any medications for RSD other than lidocaine and you can probably imagine what a problem that is. My old neuro cycled me through a variety of neuro meds - lyrica, gabapentin, cymbalta, tramadol - and mostly they left me still in pain but as a zombie. (I tried cymbalta again in the spring of this year and basically slept through the entirety of my goddaughter's vist - unacceptable.) I had a neurologist who was willing to work with me, but he left the practice and I was landed with a guy who is a neurogeneticist and just shunted me off to a pain specialist. I haven't made an appointment with the pain specialist (though I do have one with another neuro over at UPenn Hospital in September) because while I am avidly concerned about my pain levels, I also need to be able to function at capacity. Not working isn't an option for me (I do not have any kind of familial support nor anyone to fall back on) and the regimens that appear to be recommended seem to assume that I can go without that. Additionally, the non-paid work - organizing and activism - are even more important to me, psychologically and emotionally - than my paid work. On the other hand, my RSD has progressed to be hemispheric - my whole left side is affected, with the skin issues and even in my gums. Every day is a struggle, but the drugs only seem to make the struggle worse. I was always in just as much pain (except for the lidocaine patches) but I wasn't able to focus or do anything. (My favorite coping mechanism for pain is to lose myself in something intrinsicly important or interesting.) I really have trouble with the idea of giving anything up just because my body isn't working "properly." |
Hi Courtney, Welcome! Sorry you are struggling so much. You have come to the right place. Lots of good people here who are willing to give support.-lottie
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IMO you have to find the right combination of medication to make you more comfortable. Usually that means you have to give a little and deal with the side effects. There are some more natural/herbal supplements, etc. That people have used. |
Thank you!
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Courtney |
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I am Courtney and also new to this site. I admire your desire to keep working. I continued working in a very high stress environment for some time after my CRPS started. I completely understand exactly where you are coming from about not wanting to be a zombie. I didn't want to give up working. I was alone for a long time. I was living alone and worried about how I would make ends meet if I gave up my income. I had already used up my savings on my healthcare to date, I didn't have any left over. I did have family, but didn't feel like I could burden them. My sister was already on disability and living with them and my dad had just been diagnosed with cancer. While my circumstances aren't they same as yours and I cannot ever profess that I know what you are going through, I do know what it is like to feel like you have no other options but to continue on working when you have this "monster" constantly lurking around your life. But the funny thing is, stopping work has single-handedly been the best thing for my CRPS hands down. And the decision was made for me. By my bosses and my parents behind my back and together because I was too stubborn to do it myself. I was too scared to give up work. I had no idea how I would support myself. But it has worked out. But I am not going to lie, I know my situation is not the same as yours. I know the reason my stopping work has so dramatically helped my symptoms is because I worked in a very high stress industry and with an especially high stress moronic company within that industry. The mortgage industry is very volatile and full of deadlines and screaming customers, and screaming realtors, and screaming loan officers, and screaming underwriters, and screaming insurance agents, and screaming title companies, and I think you get my drift. It is also an industry where people expect processors (that is what I did) to work literally any hour of the day or night. I would have weeks where I would work 65 hours easy, but I would also have weeks where I would work 10 or 15 hours a week. It was feast or famine, which was also very stressful since I was paid by the loan. And it wasn't only the actual stress from the job, but the stress from knowing eventually I wouldn't be able to keep it. I knew that my health was deteriorating to the point that someday I wouldn't be able to work. Denying that would just have been pointless, but I was going to put it off for as long as possible. I was hoping years, like 5 or 10. I was constantly worried that people were plotting to get rid of me. (turns out I was kind of right, just wrong about their motives and who the people were ;) ) I was always nervous about money and paying my medical bills. I was constantly stressed out and constantly in pain. I don't know about you, but stress really exacerbates my pain significantly. Like when I am in a stressful situation I can feel my pain rising equally with my stress. Now that I have removed that stress from my life, I feel so much better! I mean I still have pain of course and I still have my bad days, but everyone around me comments on how much better I am now and how more relaxed I am. I just handle my pain better now. I doesn't bother me as much, if that's possible. I mean, I still have stress. There are still a few major stressors in my life like filing for disability, my moron doctors, my not so understanding mom, and my dad's cancer. But honestly removing that major one has made a huge difference in my life. I am not trying to tell you that you are making a bad decision at all. I am not in your shoes. I just wanted to give you a different perspective. If I had known what a difference it would make in my health I would have made the switch much earlier and I wouldn't have spent so long agonizing over it in secret. Also, if you gave up your work that doesn't mean you would have to give up your volunteer work or activism. If you were applying for disability you may want to put it on hold for a short while just during that period(just so they don't say, "well you are well enough to do that..."), but I think it would be a positive thing to stay active in your community. Anyways, I didn't mean to preach to you. I honestly find it amazing that you are able to do all that you do! I can't believe that you work full time and volunteer and do everything else that you do! I am in awe of you! I remember what it was like to be in my 20's and have energy once! :D Good luck to you in finding a doctor/treatment method that doesn't make you a zombie because I really do hope you get to keep on enjoying your full life!!! Courtney |
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I read your intro and posts and man - what a tough run. I do appreciate your long-windedness though. You're very well spoken:) I went through some very similar transitions as you, going from being highly active and focused on professional success, to not being able to walk, (or work, or sleep.) As I look back - and this is one of the things that drew me to post --- Before CRPS/RSD, on the physical side of things I was SO active that it just piled on top of the rest of the stress I'd accumulated. I thought the activity was counterbalancing my existing work/life stress - brrrnnt. It was further weakening an immune system already on overload. In truth I had lost all perspective of what is important. It ain't a promotion, it ain't a diploma, it ain't any kind of material success. It ain't even reputation. It's character. Only YOU really know you:) As for me, I was selfish for most of my life - and completely ignorant to that fact - and I justified it to myself that it was for the benefit of my family. I got better by gradually unwinding and releasing all the sources of stress I had compiled over the years. This in itself sounds selfish, because I dedicated 100% of my time to healing, research, rehab, and meditation. But my family let me do what I needed to do, and I am forever grateful. I got out of the boot, desensitized my leg, and painstakingly learned to walk again. Here's a link to the list of things I did that I believe helped me - maybe one or two of them will help you. http://neurotalk.psychcentral.com/thread205597.html You have an awesome guy supporting you. And you've already begun making the time for yourself to heal by eliminating as many of the major stresses that you can. And you're still really young, no matter what you think:P On the medical side - I was fortunate and made the right choice for me early on - and elected not to go through with the further invasive procedures recommended. Doctors are the right choice for some, and not so for others. You're further along than I was in that regard, but I believe anything that can be done, can also be undone. Time is the main variable. I know some of this comes off as preachy and I'm sorry - I just want to help. You are friggin' tough and we're lucky to have you here. All the best. |
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When you say waiting three years for Ketamine? Do you mean Ketamine pills or infusion?
I've had an infusion in Boston MA, Newton Wellesley Hospital, amazing doctor. Dr. Paul Satwicz. Saved my life. Finally diagnosised my RSD and really cared. Also, compounding pharmacy can make oral ketamine, (either didn't help) Have you tried oxygen chamber? Heard good things also spinal cord stimulator? LOVE MINE. but only does my left arm and now it's spread. They have a neuro stimulator? Feel your pain and frustration. The medical community does not have a clue and if your body looked like it felt I think you'd get much more attention and willingness to do something. My arm look like an arm but feels cut open and on fire. No one gets it but others with the same thing Good Luck |
It's a long story, I hope you don't get bored
I am 19 years old, and I was diagnosed with RSD on May 22, 2014. The day before Easter April 18, 2014. I was at work, I sat down at break time, and when it was time to get up and go back to work. I collapsed, so I got back up (pretty embarrassed) so I tried again, and fell again. It felt as if there was no heel bone in my foot. Thankfully it was closing time, so shortly after that I headed to my car and went home. When I got home I tried to get out of my car thinking, "it was probably just a one time thing, i'll be fine now." Boy was I wrong, I couldn't make it any further than the door of my car. So, I called my mom to come help me get inside, I told her I would sleep it off then we would go to the hospital after all the Easter festivities were over. By this time I had my walking boot (which I had used from 3 previous surgeries on the same foot) and my crutches, my foot was swollen like a sausage and looked bruised, and all sorts of weird colors. And the pain was so bad I couldn't sleep, for weeks, I couldn't sleep.
When we got to the ER Easter morning, they ran X-rays and took blood.. the normal work up. They told me I had a sprained ankle. LOL I've had plenty of sprained ankles, this wasn't a sprained ankle. I then went to my foot doctor, whom I have had quite a few surgeries with... When I was younger I had grown too fast, so my muscles and bones didn't have time to catch up with each other. So I had to have reconstructive surgery on both feet. To fix my bunion, draw an arch, and fix my soulous muscle.) He ordered me to get a bone scan, MRI on my foot, leg, knee, and lumbar. After all the tests came back negative, I was sent to a local neurologist in Lima, Dr. Kuhlman. Dr. Kuhlman was concerned by the amount of pain I was in.. You know how they ask you, " Rate your pain on a level from 1-10" in my mind I'm thinking uhhhh 15!!! He ran an EMG from my toes to below my knee, and I'm sure all of you other RSD patients know those are just AWFUL.. after a little talking he then looked at my mom and I and told us he thinks it's best if we go somewhere bigger, like OSU Medical or Cleveland Clinic. So when we walked out of the office we made an appointment for the 22 of May at the Cleveland Clinic. He also prescribed some pain medicine to help this God awful pain syndrome. May 22, 2014 we arrived at the Cleveland Clinic to get this all straightened out. We got there around 7am. My appointment was at 7:!5. After our first initial consultation with the doctor, she wanted to run another EMG. They had their very own wing of rooms designated for these EMG's. I will never forget this day.. Because the man who did my EMG started at my foot, and went all the way up to my lower back. When I say it was the most awful hour or so of my life. The doctor struggled to keep my foot at the right temperature for the first part of the test, so we kept putting my leg into warm water to keep it at normal temperature. After the EMG was done we went to another wing of the hospital for a Sweat Test. Which was pretty cool actually, if any of you have had one you will know what i'm talking about. But for those of you who don't.. They put these sensors, the first part was to make my feet sweat. And the second was to draw the sweat off. It was actually really cool. The tests results couldn't be given back that day because I guess the sweat test takes some time to read. By time we left the hospital, it was around 5 or so. She gave me a prescription of amitripilyne (or however you spell it) ... I took the medicine for about four weeks, and yet had no relief. She then told me to go to a pain management doctor. Either locally or there at the Cleveland Clinic. But since we live near Lima, we decided to try to go locally. I started desensitation therapy for the INSANE sensitivity, and physical therapy because I had lost all movement of my foot during the month from hell. The therapies helped tremendously with my sensitivity and range of motion. The next step was to find a pain management doctor. So, I am currently seeing Dr. Hogan in Lima. We had a consultation with him and he decided we would try to do some nerve blocks to try to make the RSD lay dormant. I was scared, but also all for it because I wanted nothing more than to be healthy again and get back to playing volleyball. Of which I had a spot on my college volleyball team. The first block, a lumbar sympathetic nerve block, went well. I unfortunately had no relief but I wasn't expecting it to come that fast. The second one, MAN WAS I FEELING GREAT!! I went and played volleyball TWICE and wasn't feeling too bad! So at my follow up appointment from the block, I told my doctor I was feeling a lot better but was still having quite a bit of pain sometimes, but not as often as usual. He decided we would try one more to see if we could shut it off completely.. .. This is where my problem comes back.. The day after the nerve block, October 10, 2014. I was feeling ROUGH and I mean ROUGH. my foot was killing me, (was hurting worse than before the block) my knee hurt so bad I could just cry. I was so confused, and frustrated. So I waited a few days for the pain to go away, like I figured it would. A week had gone by and my pain was not how it was from the 10th. It was worse. WAY WORSE. I noticed each day it got worse. And I had a deep pain in my knee, front and back? And I noticed I was starting to lose a little bit of range of motion in my knee, and some weird feelings I had never felt before were coming back in my foot. So I called the doctor back.. He pushed my follow up appointment up and Saw me on Tuesday, October 21. When the doctor came in, he heard my story of what was going on, he felt around on my leg, especially where I told him the most pain was.. Then he stopped and just looked at my mother and I. He told us it would be in our best interest to go right to the hospital because he felt something behind my knee and thought it may be a blood clot, and since it had been quite a few days since my pain first started, he was worried the clot may have traveled already. When we got to the ER they ran test after test, even a chest X-ray and an EKG because of how high my blood pressure and heart rate were.. It was like deja vue.. the doctors came back in and said I had an infection somewhere because my white blood cell count was high. Gave me an antibiotic and Tramadol, and sent me home, he said to follow up with a family doctor in 2-3 days. Instead, my mom and I made an appointment at the Orthopedic Institute of Ohio with a knee doctor. On Thursday, October 23 We saw Doctor Sanko at OIO. He felt around and noticed that my pain had gotten way worse than Tuesday, even lost more range of motion since Tuesday. He noticed how diffused my pain was, and stated he believed it may be my RSD traveling up into my knee. he ordered an MRI and said he doesn't think anything is going to show up on the MRI but it was just to rule anything else out. He said with the way things have progressed so quickly, temperature differences, and a little discoloration. He believes it is RSD. My MRI was this past Saturday. Now here is where I need all of you. Thursday I have an appointment to get my MRI read, an hour after that I have an appointment set with my pain management doctor. I'm praying so hard that something will show up on this MRI. Because I cannot take anymore bad news. And I want this to be something that can be taken care of. But right now.. my pain level on that "scale from 1-10" is about an 11. It sucks, I can't walk right. I look like an idiot walking to and from class. And on top of that, I can hardly EVER sleep. I just want answers. My mom and I are thinking maybe going to OSU Medical or Cleveland Clinic for this now may be in my best interest. Those of you who live here in Ohio, where do you go for your pain? Are there any doctors you would prefer/recommend? Or a certain hospital? Cleveland Clinic's neurology department was great! Do any of you know of their pain management department? Any recommendations, advice on how to cope, things you have learned to help you relieve pain, things that keep your outlook positive.. ANYTHING AT ALL. Please, let me know.. I know this was really long:( but I hope you had the time to read it, because I really just need some help and advice. I'm trying to stay so strong and be positive but it's so hard when you're in this much pain.. Thanks in advance!! Bailey |
You might want to copy your story onto the main RSD section with a thread of your own for most replies.
http://neurotalk.psychcentral.com/forum21.html New thread - http://neurotalk.psychcentral.com/ne...newthread&f=21 |
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New Here
Hi, I stumbled across NT when searching for information re: 5 day Epideral treatments and SCS for CRPS. I live in the Chicago suburbs and Dr. Lubenow is one of my Doctors at Rush Medical in the city. He is pretty well known for treating RSD/CRPS.
My Sciatic nerve in my right leg was damaged in a hip surgery 2 years ago. I was temporarily paralyzed in my right leg. I've gotten most of the function back but My foot is still struggling along. I have only partial movement but signs of life still seem to be there. I was diagnosed with CRPS about 8 weeks after the surgery. Pain in my right leg kept increasing to a number 9-10 pain especially at night and after several emergency room visits they admitted me. I was placed on IV pain meds there until they figured out what to do next. Several nerve blocks later, I entered a full day outpatient rehab program that was fantastic and I got back on my feet again. I still go to therapy, 3times/week. The biggest challenge in all of this is managing all the meds I'm on. Very,very high doses of Fentynal, Roxie, Lyrica, Amatryptilyn , and others. Though these meds keep me out of the emergency room and allow me to rehabilitate at therapy, I've begun to realize what the Docs have been telling me all along, that living life on these meds may not be a sustainable plan. But if not this route, where do we head? I'm scheduled for a 5 day Epideral ,on Dec 16th in an attempt to switch from the Fentynal patch to a long acting pill. I'm very skeptical because they tried giving me the hydro-morph pill initially when they were weaning me off the IV pain meds way back in the beginning, and that strand of Opioid didn't work. I know between now and the 16th, I need to change my thinking on this. In order to get the CRPS to retreat, I need to convince my brain that it's possible. My attitude will need to get a lot better between now and then. (I'm working on it). I'm here in the Forum to learn and discuss options with like minded folks. We'll talk more soon, I'm sure. |
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