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Lucky at being unlucky?
I had an accident where my motorcycle fell on my knee in Oct. 2011. By mid-Dec. I fired three Orthopedics and four PT's by natural selection of incompetence. I will say that I am a strong advocate of not messing around with unhelpful people, especially one's who have no clear plan or one's who get distracted by unimportant things (like Oxycodone prescriptions when we haven't even established care - I live in a drug area but I have no history of any addictions)
I have a major concern about my blood pressure and heart pains. I am not yet 40 with a fitness background before my accident. I have always been sensitive to changes in elevation and have noticed an increase in my heart rate being less stable. Does anyone have any experience or knowledge of the most current treatment to stabilize this as I am expecting to have my first pain clinic appointment mid-June. I am in PT twice per week, the CRPS does affect me in other areas than the injury site, I have psychiatric support, neurologic support, counseling, swim an dwalk as often as possible. I work from home using a bed since the accident as the leg does not return fluid well when sitting in chairs. I also have extreme agony when the fascia is challenged. My hope is to learn a method to keep my heart more stable or find more information on the link between CRPS and the supporting evidence of heart affect. Also I am traveling overseas in May and wonder if anyone has any experience with calling the handicapped support through the airlines? I know I cannot fly 10 hours with my heart above my leg and I will need to move around frequently. I will NOT be affording first class :eek: Any input welcome! Thank you. |
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From my readings at the NIH, NNIH, Netherlands research, Mayo Clinic and the likes any surgical procedure or puncture of any sort should be approached with extreme caution. Even the useof a standard needle should be substituted with the tiniest gauge possible. I agree with others that it is wise to seek more information about the CRPS experience the surgeon or physician holds directly and research, research, research because this is a very complicated syndrome that mobility and pain management guide recovery hand in hand. I call it the 'drama queen' response, if my body experiences the smallest of stimuli it doesn't like (standing near a spaceheater) it will flare in to 'drama queen' mode and feedback as though someone has torched my leg! Conversely, I have also seen it go from incredibly red hot and burning to absolutely no response within minutes when I am pondering something extremely difficult inside my mind (research, a puzzle, imagining how to walk a certain way or step). The neurological component of this should be foremost on the physicians mind, treating the source does help but the brain works in mysterious ways. Be careful! Good luck to you! |
Just (finally) diagnosed with CRPS
Hi all,
After 2 months of intense pain, swelling, discoloration etc. following foot surgery, my doctor finally diagnosed CRPS using data from an MRI. I am currently taking Lyrica, which seems to be helping (at least I can sleep now:). I have had a five pound in one week weight gain, while eating healthy food. So glad to have found this forum, where everyone "gets it" about CRPS. My doctor told me she had only seen one other case in her 17 years of practice. |
newbie
Came kicking and screaming to register here- self-imposed kicking and screaming. Coming to terms with my diagnosis and future with CRPS. Tried denial even while doing treatments. My story- In May of 2011, I stubbed my toe. Nothing major. Few days later it wasn't better. Went to a walk in clinic, had unremarkable x-rays but they buddy-taped my toes in case. Week later, still not better so saw an orthopedic MD. He thought I might have a subtle fracture & continued buddy taping. One month later hurt my forefoot again. More unremarkable x-rays. Still buddy taping and ortho tried a post-surgical shoe. Another month passes and still in discomfort. Ortho orders MRI and he was very surprised with the results- torn ligaments, turf toe, etc. Into an aircast 24/7 for a month. Still not better. Truth be told my turf toe wasn't bothering me at all until I'd been in the air cast for a bit of time. The turf toe injury was pretty severe (grade 3). Referred to an ankle/foot surgeon because of lack of progress. 2 more months in the aircast until the surgeon had an opening for me. He took the aircast off and put me in my shoes with a metal plate inside my right foot. F/U appt. with surgeon in 1 month. Couldn't wait that long. At the end of 2 weeks, I was dragging my foot. Unable to even lift it. Back to surgeon. He immediately noticed the blueness of my foot, said we were lucky we caught it (CRPS) so quickly and referred me to a pain anesthesiologist for LSB. It took another 2 months to see the pain anesthesiologist. And yes, I tried begging for earlier appts and was on waiting lists for both my 2 month wait with the ft. surgeon and the pain anesthesiologist. Pain anesthesiologist doubted I had CRPS because I didn't have allodynia. On my way home, confused about what was going on with my body, my "da" moment. I had lidocream oint. on foot so didn't feel his light touch. He knew I was using lidocaine. Note to self, think for oneself and don't rely 100% on specialists. Had first LSB but the temp of my foot didn't even register. 3 days later, I was feeling a little better so they scheduled a 2nd LSB for 1.5 wks. later. That one actually saw an increase in temp. of my foot but absolutely no pain relief. Terrible experience during the surgery- I woke up during the procedure, felt the needle, saw the fluoroscopy screen in action. Actually felt much worse next day than ever- anything that had pressure on my body, bed, sheets, etc. caused pain. So much for lacking allodynia anymore. Saw the pain specialist's NP who said my symptoms were more like MS than CRPS and there was nothing more for them to do except refer me to a neurologist or rheumatologist. Said if the pain didn't go away, they could refer me to a partner who could implant a stimulator in my back. (So confused as I'm sure many of you have experienced). Next week, back to my ft. surgeon for f/u per pain anesthesiologist's rec. Ft. surgeon said again that he felt I had CRPS and couldn't operate on my ft. because it would only make things worse. He got on the phone to my pain anesthesiologist. Pain anesth. said "wires were crossed, noone in his office would tell his pts. they have MS" and I needed to make an appt. to clear this up. Saw him again week later. Pain anesth. said he didn't believe I had crps because my symptoms didn't fit crps 100%. Symptoms were- history of injury, excessive pain, my joint was beginning to lock up, my foot was much colder than other foot and quickly turned blue with touch or exposure to air. Told me I should follow his nurse practitioner's advice and see a neurologist. Saw a neurologist out of state who spent a full hr. talking to me and examining me. He confirmed CRPS and adjusted my meds. Ordered aquatherapy (had been on PT) and told me to call and let him know how things are going.
How are things going? I need to call my neurologist! The neudexta he put me on hasn't seemed to change anthing. He toid me I could increase the dose of dextromethorphan in the Neudexta by taking cough syrup DM. That way I would get more dextromethorphan but no more quinine. So started taking cough syrup DM also. Also on Cymbalta, Alprozolam, Tinazidine, MVI and lidocaine patches. Neurologist does not want me to have a spinal cord implanted TENS unit since I have sympathetic independent pain. He told me he has more tricks up his sleeve. My disease seems to have moved on so quickly compared to many I've heard of. My arms and legs cramp up frequently, the wind on my skin causes the burning. I have pain up my right leg that I attribute to irritated nerves because the pain follows a very distinct, narrow route. My nails are changing in texture. I'm having pain at the back of my neck that causes headaches. Major flare last weekend (Can I call it a flare if I have continual discomfort?). I cried all Fri. night silently praying to anyone I knew who has already passed to come pull me to the other side. Spent Sat. in bed. Learned here that it was probably from the full moon. Out of the blue, while walking, I have sharp pains in my toe that cause me to gasp in pain. Right ankle is stiffening up. Having trouble lifting things I used to be able to lift. (Heavy sigh- that's all I can think of that's causing pain because my mind is shutting down and blocking anymore thought on my symptoms. I told my PT I didn't want to look at my foot. (He had started me on mirror therapy). To see my blue foot is upsetting & makes everything worse. He told me I have to face my disease. (another heavy sigh). Everyone in my family dies in their 80's & 90's from heart attacks or strokes. That was my plan too- heart attacks are a rather quick way to go. I didn't exercise as much as I should have, I could lose some weight, and I love fried chicken. I'm the perfect candidate to die of a heart attack like everyone else in my family- at least 30 yrs. from now. Why did God throw this monkey wrench (crps) into my plans? Question- do many of you have a pain specialist AND a neurologist? I have an internist who is supportive but not very aware of crps. I also have a psychiatrist who wants to be involved with decisions made on my behalf but none of the other specialists have ever consulted with him despite my informing them of this and providing his contact info. Have to keep him in the loop by myself. And I have the neurologist in another state. The pain anesthesiologist's nurse practitioner told me they couldn't do anything else for me and signed off on my case. My foot surgeon has also signed off because I'm not a candidate for surgery. I also have my PT's. When I first hurt my ft. I told the ortho that I had a fractured hand yrs. ago that wasn't diagnosed for a couple of months and then only by MRI. I had seen all the physicians including a hand specialist for that injury but because of the delay in diagnosis, I now have arthritis in my right hand. I told my ft. ortho that I wanted to do as much as possible as quickly as possible with this injury so I wouldn't have arthritis in my foot. So I do everything I was told to do and what happens- no arthritis but crps. Oh, could I go back and request arthritis instead? Pretty please? My new motto is "Life is a four letter word". Having a hard time emotionally with this as I'm sure all of you have. I don't want to be a burden on my family. I know being educated about one's disease is important but the more I read, the more I don't want to know. Cry silently to myself because I don't want to upset my husband. |
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Educating yourself IS very important though. I know it can sometimes sound hopeless...but it isn't. They are coming out with new treatments all the time and remission is possible so don't give up yet. Keep fighting. You've mentioned that the neurologist doesn't want to do SCS but there are 2 treatments you didn't mention that I think are definitely worth looking into: tDCS and ketamine. For more information about tDCS pleasae read this thread, as I think you will find it very inspirational and hopefully it will give you hope like it gave me that it may be possible to have a life without this constant brutal pain: http://neurotalk.psychcentral.com/thread160980.html One of the best things about tDCS is that it doesn't come with the risk of spread like many other, more invasive treatments do. I just started a few months ago with this treatment and am over the moon with the results. I had spread after a LSB so this was a really appealing treatment for me. As for ketamine, I definitely suggest doing a search on it as many patients have gone into remission. It is expensive and has risks, but it also has a track record of good results and may be worth considering. You also might want to check out the Ketamine Klub on facebook as there are many there with personal experiences that they could share with you. Please keep fighting...life can get better if you fight for it. I know how hard that can be but things will never get better if you give up. Take care...I really hope things start to get better for you soon. |
NJ PCOS Lady
Hello everyone, NJ, PCOS Lady dx'd 2003 with PCOS, Metabolic Syndrome, IR - Insulin Resistance, PreBorderline Diabetes, Rosacea ... Hypertension comes and goes depending on stress level... All my PCOS symptoms are minor... My whole life i assumed they were normal til i went on Glucophage XR and many symptoms went away! I felt whole with my hormones in line... RSD is popping up in women with PCOS now... ~ The levels and duration of pain you experience is horrid! ~ I'm surprised research has not proven the root of it all by now... RSD was cured in a woman diagnosed, by a specialist, with a Epsom Salt bath a month later... She was magnesium deficient... ~ Makes me question if doctors are checking mineral and nutrient levels ... ~ Iodine & Magnesium deficiencies cause so many medical conditions! I am a firm believer in having a hair sample analyzed for what all your body has and is lacking... A base line to start from... I'm reading and gathering knowledge on RSD... My blogs are enlightening, informative, research, forums, groups, blogs, 1st hand experiences are all crucial in helping others in their (PCOS, RSD, LUPUS, CELIAC DISEASE, FATIGUE, ABUSE, MISDIAGNOSIS, etc...) Journey to a better lifestyle... FYI: Parasites cause many medical conditions too! Many go undetected and are never checked for since Quest and Lab Corp only check for 4 types! There are thousands+ known to man! IBS, anyone dx'd with it? Most likely it's parasites! ~ Parasite Testing site ~ Cure Zone site Symptoms count ~ Your medical history counts ~ You know your body ~ You are in control of your body ~ Knowledge is POWER! Christie |
New here. My daughter has CRPS
Hi
I'm am new to CRPS. My daughter was diagnosed just under two months ago so I have spent a great deal of time reading up and continuously being shocked at what I have learned. I had never heard of CRPS nor had I known anyone who had it (or at least was never told). Very quickly, my daughter is 13. She broke her leg 8 month ago. It didn't heal in the expected time frame. She had considerable pain....mind you it was a bad break (spiral into the tibial joint at the ankle). She also blew out her knee and hip at the same time. Was told we wouldn't worry about those other injuries at the time because she had to rest for the fracture to heal and hopefully they would resolve themselves. The hip is much better but not the knee. Anyways...I'm jumping ahead. 6 months post break, her pain skyrockets. She is waking up every night, her lower leg and foot are swelling, they are cold and turning blue and purple. The Dr. identified it immediately. He prescribed Gabapentin 900 mg and Elavil 225mg. Of course, I thought he had gone insane with those kind of doses for a child. Told me to work up to them. It wasn't until after I read up on CRPS and spoke to friends in the trauma field that I relented and agreed to medicate her. The pain is better although she still does wake some nights from it. They tried cortizone in the knee and guess what? The ankle area flared up! Just continuing with therapy. Tried some anti inflamitories but they are killing her stomach. She is gaining considerable weight from the other meds as well. I am terrified for my daughter and what her future will be like if we don't get this under control. Any suggestions and advise is welcome. Also, just curious....does CRPS elevate pain in other parts of the body? For example, she has been suffering from a sore throat this past week. Most likely a virus. But she seems to be in more pain with that than what is normal. Any relation? Thanks and God Bless all of you who are suffering |
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From everything that I have heard, I think that you should look into getting her into a hospital program specifically for children with RSD. I think there are some Children's Hospitals and maybe the Cleveland Clinic that I have heard of. If you do a search I am sure you will find some. I think these are great because they focus on the therapy and less invasive forms of treatment rather than what some docs do which is jump into blocks and surgery and stuff. The physical therapy is SO important and also to be in a program specific for those with RSD. The generic outpatient physical therapy is often not enough. As far as other pains throughout the body...it's hard to say. I CAN say that when you have RSD the pain is very intense and you definitely have more awareness of your body and the pain levels. So maybe that's why she seems to be more sensitive to the sore throat. You want to try and get this under control as quickly as you can because the longer you wait with RSD the less likely the chances of remission (but it still does happen). I would look into hospital programs first I think (maybe your doctor even knows of some good ones). Even if the programs require travel...it will be worth it if they can put your daughter into remission. Other than those I would focus on the physical therapy and also recommend trying tDCS (this is a non-invasive treatment which is why I would recommend it early on). There are also mirror therapy, blocks, ketamine, etc that you could look into down the road which get progressively more invasive. You want to make sure you educate yourself fully about any treatment options before agreeing to them. Many carry their fair share of risks and you need to weigh those risks vs the possible benefits and success rates of each treatment. Take care and feel free to ask as many questions as yout need to. There are several moms on here who have children with RSD, as well as some younger members who could also answer some questions for you I would guess. We all know what it is to live with this monster called RSD and we're always happy to help and share what we can. Best of luck to your daughter...I hope she finds relief soon. |
Scared Mom
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I am so sorry to hear about your daughter. I am very familiar with your feeling of fear when it comes to RSD and a child. My adult daughter has Rsd as well and although she is an adult there is no age cut off date when it comes to mothers and that protective instinct we have for our children. There has been many a time as I tried to educate myself about RSD I would think I was truely living a nightmare and my fears would become so intense I would have to put it all aside and take a breather. However as time passed I was able to quickly take up the search for solutions. Both you and your daughter will get through this. You will get through this through the power of the love inside you. Each day that power and confidence will grow. Meanwhile Catra 121 gave you some excellant advice. I do not know the background of the Docs now treating your child but programs in various hospitals who work with Children who have RSD are a plus. You have two good things going for you, the high rate of success with children with RSD and a fairly early determination. However time is of the essense. :hug:Joydee |
Oficcially Diagnosed with CRPS
Hello,
I would like to introduce myself to the community. I was officially diagnosed with CRPS yesterday. I am so happy to finally have a name to this monster. I have been suferring with this for close to 9 months already. It all started back in September 2011, I had severe knee pain and lost the ability to walk properly. I went to visit an orthopedic and we did some test including an MRI and nothing was detected only a miniscus tear and broken cartilage. We decided to have surgery to repair it, that was done in Janurary 2012, little that we knew that it will get worse from this surgery. I have been in extreme pain, swollen, muscle trembeling, temperature changes, insomnia and using crutches ever since. Severeal months ago the ortho DR was a concerned becasue I was not healing properly. More test were ordered MRI, CT Scan, Bone Scan, Lots of Blood Work. All test were normal with the exception of MRI and CT. They showed damage to my pattella, femur and tibia. I was sent to and ortho oncologist and rheumatologist. After carefull review of my history and the sequence of events it was concluded that I have CRPS. Yesterday was the first time I took any meds for the pain, and let me tell you it was Awsome to have a little break from all this pain and suffering. I know the jurney is long and hard, but I have faith in GOD that he will give all the stregnth that we need to continue foward. Thank you for reading. |
Introduction To Thor--New Member
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Hi there, My name is Thor & I live in North-Central Massachusetts with the love of my life; Kevin. We've been together for 11 years now, & I {stumbled} on this site & instantly found that I had information that nobody offered me before! I thought I'd introduce myself so that--if Thor happens to say anything that is confusing via a Thread/Reply or Chat--I can have somewhere to say, my story is here! My highlights could easily fill volumes, but I've condensed it to the best of my ability. I have been experiencing stabbing pain in my Left knee which recently descended into a whole collection of effects, worsening pain--though always "Through the roof" agonizing. With the pain, my major-depression has spiraled out of control, seemingly affecting a large portion of my capability to understand & form coherent sentences the way I once could, particularly with my Angel, which is more painful & confusing, then the physical pain that killing me more than the physical pain! For background, I've now been battling HIV-related major-depression--which {WAS} under control before THIS physical pain. Now, however, that is overwhelming that control. The orthopedic surgeon that we were referred to thru BWH in Boston explained that I likely have RSDS as opposed to anything related to the joint/bone. It is always worse with movement, though it DOES hurt all of the time, in spite of unheard of amounts of the last available narcotic that I know of, after having either been allergic or maxed out on dosages. To help alleviate some of the exuding depression/angst/couples issues, we're both seeing a therapist & we share a couple's therapist as well. In spite of this intervention----seems like I'm dying from the disassociation of the pain & how it's affecting even the simple pleasures, eating, drinking, talking to friends has all become difficult as hell. I think, if the pain can, somehow, be dulled; we both believe that--along with an increase in one of my anti-depressants will help! I wonder if this type of disorder is really common in avascular necrosis scenarios, & am I alone w/ this "un-viewable" feeling & is the pain ever going to be manageable? {those are a couple of questions I have!} But, MOST IMPORTANT TO US {are] OPTIONS. Yours, Thor {For us both too!} :wink: |
Thor,
Welcome to the forum. Feel free to look around, ask questions, rant or vent. We are all here and have experienced the pain of RSD. There are many treatment options, medicine options and alternative options to try alleviate part or all of the pain. Some of us are at different stages with our disease, but with each others support we all have been encouraged. Quote:
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Dearest Thor and Kevin
For you are God's beloved in this regardless of the seemingly overwhelming pain. I write not because I experience exactly what you know, but because my sister-in-law Terri suffers from the Long Lasting effects of RSD, diagnosed over a decade past, and the gangrenous effects such a disease brought to her through what has become the ever increasingly popular scoping of a knee injured in her work as a chef. Wondrous cook she remains, although chef no more.
Her legs were long ago removed at a point barely below the hips, availing of a slight platform by which to sit in her motorized wheelchairs [for there have been several over the years as they wear out]. Her Doc long ago gave over to the notion of providing her paliative care as agony in unrelenting pain, both bodily and phantom sought to erase her existence to a bed ridden imprisoned soul. Not to be dissuaded from life, she takes now dosages of Morphine which, by titration up over a LONG LONG time, have seen her pass the line of a dosage known to be fatal among other humans. Doc remarks with incredulity at her indomitable spirit..... and when I was visiting two weekend past, she motored up in that small town to the tiny church to hear me sing for worship. It was precious to know, she in pain, would share such moments with all of us. An appreciation plaque mounted there for her reads "Terri, long our inspiration." Unwilling has she been to give up, painting t-shirts for oncology patients in a nearby hospital. Pain filled? Definitely. Seemingly wasting away? Yup at less than 90 lbs now. Nevertheless, she gives God glory in all she is able to share with her spouse, her family, her community, her love of God. She inspires me. Grateful, and welcoming you to this special place, Mark56:grouphug: |
Here for my husband
On March 1, 2012 my husband received a tetanus vaccine. He had pain and initial redness, a bit of swelling for about 2 weeks. He then had a blood draw from the same arm 3 weeks after the tetanus and he experienced horrible pain at the draw site that then went up and down the arm. Two weeks after the blood his arm would turn a violent color of red/purple (like a BP cuff had been squeezed too tightly and left on) with white blotches. The pain was so terrible that he ended up in the urgent clinic where they thought he had a blood clot and sent him to the ER. The ER diagnosed him with ascending lymphadenitis. The next day he saw our PCP who diagnosed him with neuropathic pain syndrome. For the next month his arm would turn this horrid color and the pain would literally bring him to his knees. We were sent to a neurologist who performed an EMG on his arm and this was normal. Now for the past month/month and a half the horrible pain has subsided, the color has returned to normal, but now he has pain and numbness in both arms and muscle twitching/fasiculations in his legs along with numbness/tingling around his neck, jaw and mouth. He has substancial weakness in the original injection/blood draw arm with a bit of atrophy. He says it feels as if his arms are wasting away. He had MRI of his head (to look for MS) and his neck (looking for pinched nerve) last week and both were normal. Prior to March 1 my husband was an avoid outdoors man...hunt, fish, canoe, kayak, hike. Now he is sleeping 12 hours a day just so he can go to work to continue to provide for his family. We are going to see a neuromuscular rehab pain specialist in 3 days and hoping for a diagnosis more specific than 'neuropathic pain syndrome' and hoping that something can be done to stop the weakness, numbness, tingling, creepy crawling feelings in his arms. He does notice that if he lays his arm on a cold surface (metal computer table at work) or cold water, his left arm goes crazy with humming, tingling feelings. Just here for support and some ideas of what this might be. The more I read about multifocal motor neuropathy (esp. with the reaction to cold) I'm thinking perhaps this is it. I have been directed to this forum for advice. Thanks for listening. Linda from Michigan.
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Dear Linda
I realize this may seem trite, but the horrific turn this has taken surely seems to call out for the best of the best rather than being bounced from one to the next each with different, and apparently not relevant DX which do not lead to care. Seeing the neuromuscular rehab pain specialist sounds as though a good walk in a more positive direction for answers. My pain specialist is every bit my go to person for the issues which plague me.
Frankly, the thought which came to my head first when I read your developing nightmare was either Mayo Clinic or Johns Hopkins. Why think in terms of turning in such a direction? Simple, the clear development from a simple innoculation has been horrific results which escape answer to this point. When my cousin had four children, each of which turned out to be affected with Autistic Disorder, she being a hospital floor nurse made a bee line to Johns Hopkins. When my sister in law was first diagnosed with RSD after a purportedly "simple" [there is no simple about any surgery] knee scope surgery, and the ultimate impact was gangrenous limbs heading toward amputation, Mayo Clinic was given the big consideration. Your husband's situation seems the more difficult of the hard cases determining what to do..... but given the direction in which the neuromuscular rehab pain specialist directs you, questions whether there is some special clinical diagnostic program anywhere which may prove to be answer driven and detail responsive may be more in the direction of patient advocacy your husband needs. In fact the specialist whom you see may well be former clinically trained in such a program..... ask. Get answers, deeper answers than "here is a script for a procedure." Prayin, Mark56:grouphug: |
Crps type 2
Name is kristina im 24, here is my strange but true story.
I was a cake decorator at Vons. While i was making butter cream i was pushing the solid 50lb block of icing into the bucket of a commercial mixer " meaning its big" and it only fits in the bucket if the paddle that mixes it is positioned a certain way. Ive done this many times before i manually moved the paddle and i crushed my left hand between the paddle and the bowl keep in mind the space is less than an inch wide. it sounded like every bone in my hand was broken. I was in shock i had to collect my self and move the paddle back off of my hand. i took it out and it was bleeding from my palm and the top of my hand. i ran to the front of the store and quietly told the first co worker i seen that i had hurt my self bad. as she ran to the phone to page a manager i started crying i couldnt believe what had just happend. i had done it so many times before and did not get hurt. i got taken to some urgent care center they said i was FINE. i went back to work a few days later. i went back to the dr my self and told him somethings wrong my hand feels really weird. he gave me light duty. three months later my hand turns purple and i tell my manager that this isnt right im going to see the dr again. he sends me to a hand specialist. he gives me PT and accupuncture and then doesnt see me for months. i request a new dr. she tells me THERE IS NOTHING WRONG WITH YOU. she gives me a cortazone shot in my ring finger and gives me PT also. the PT is so intense i cant take it. the PT notices that i had been complaining about my shoulder hurting and it being hot all the time. like its on fire. she tells me that i need to make it clear to the Dr that it is my shoulder now that is hurting. so i go to the dr and tell her look im not *edit* crazy im young and i want to work but there is seriously something wrong. i told her my fore arm my upper arm and my shoulder up to my neck feel like they are burning. she tells me its because i hold my arm close to my body and that i need to use it more...and releases me back to work. i was so ****** off when she turned around and told me well if your going to get mad ill change it to light duty instead of full duty...why would she say that? anyway i go back to work after 8 months of being out. i start my cakes i do 80 of them " thats normal work for a Cake decorator" and i do my normal stuff. im off the next day... talk about pain i couldnt get out of bed i wanted to go to the ER i was in intense pain. i go to work the next day i life one tray of cakes and i start to cry. my manager noticed that i was struggling and asked me to leave that it wasnt safe. so i requested a QME appointment. the dr says that i have symptoms of CRPS so he sends me to a specialist. they do x-days of my arm neck and back. he said that im not crazy and that he agrees with the QME dr that they need to look into that. So last week after a year and a half of thinking im crazy i get diagnosed with CRPS type2 and its getting worse. i havent started pain management yet i have an appointment on the 24th and im nervous. i missed my last one due to anxiety. im depressed and just so lost. im taking tremadol and i cant sleep. my mother actually committed suicide when i was 15 she sufferd from fybromialgia for 6 years and couldnt take anymore. this reminds me of all that i witnessed when i was a teen. she was on so many meds shed sleep all the time. and i dont wana be like that. im freakin out my gf and its starting to freak me out. kristina |
Kristina,
Welcome to the group. First off, you are not crazy. Unfortunately, like so many we end up with dr.'s who don't know what rsd is or the fact that we are not faking. going to the pm will be (hopefully) a good experience as long as he has experience in rsd. You will be able to get on the proper medications and start different procedures to help with the pain. I am sorry to hear about your mom, that must be rough. Make sure you get on an antidepressent as well as pain meds and you will definetley see a difference. Just remember, there are many meds out there so if 1 or 2 don't work don't get frustrated. Be honest and truthful with your dr. and they can make adjustments to help you. Good luck and welcome. |
A little bit about me.
My name is Candice, i am 21 , and I was working as a 911 dispatcher, I am no longer able to work. Fortunately, I have a wonderful family that had been really supportive and loving through everything. I was Diagnosed June 26,2012, after months of being in pain and not understanding, and being passed doctor to doctor. My rsd/crps is in my right hand. I dont have a lot of people who know what this is, or what it has done and is doing to me. I am so lost in this.. I have some many questions, and no answers :( |
welcome Candice to the group. You will find your answers here in this wonderful bunch of people. I am sorry about hearing you have rsd, but glad to meet you.
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Pamela 36 Diognosed June 27,2012.... Im blessed with hope today. First SGB in a week and half and wondered if anyone has experienced relief from the block?
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Welcome to the group. Sorry to hear your recent diagnosis of RSD. But glad to have you here.
There has been people here who have gotten relief from SGB. Personally I had an LSB, because mine is in the foot. Quote:
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I found that I didn't get any long term relief from my lsb. (lumbar sympathic block) (more then a day) when the dr. did injections every 3 weeks. But when they did 3, one a week for 3 weeks. I got relief for 6 months. (it was great) I recomend that you ask your dr. to be aggressive as possible.
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Good morning.......My plan is to speak with her (dr) and be aggressive. Thank u. The relief will be a blessing. My family thinks this is the cure and I keep trying to tell them it may to be, but they don't understand. Sometimes I feel like they think this all I Can talk to them about but don't realize it is Always present and any moment rearing it's ugly head.What am I suppose to do? I'm so happy to meet you both and hope I can get this under control soon or bearable.
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Hi Alt
Can you tell me what LSB is. I only recently have been told I have RSD like symptoms in my foot. I thought it was just PN. Sorry I don't know this term, but I am seeking relief other than pain killers. I read where RSD doesn't like narcotics. thanks for helping. ginnie
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Lsb..
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Im really not sure if Im doing this right but I wont know till I try. Im very sorry for all of you who have RSD. I really dont know what to say or how to Im at a very low right now with it. I dont even know how to use these forums so this is my test post. Its hard for me to sit here so Im not going to get into my long drawn out story till I know I can even post right. But Ive been suffering from RSD since june 8 2012.
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christine,
welcome to the forum. this is a great place to learn and share information on our disease. You did great on posting so go for it. :hug: Quote:
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Hi Christine
Welcome to Neuro Talk. You posted just fine. You will get alot of others stopping by to say hello to you. This site has lots of compassion. I also have RSD in my left foot and ankle which is new to me too. I most certainly understand what has happened. I will pray it does not spead. Hope you can find the very best doctors to help you through this. I go see my own pain specialist tomorrow. She is also a Physiosist, which is a branch of medicine, that deals with issues at a cellular level. I take B12 shots and some other suppliments. I will be here to talk to. I found NT about two years ago, and never wanted to leave because of the good friends I made. You will make some friend here too, and get support while you deal with the condition. Again welcome to NT. keep posting just like you did. ginnie:hug:
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Hi, I'm Jen,
I got CRPS in my left foot six years ago after fracturing a small bone in my foot. It wasn't diagnosed for five years, and it has now spread up my leg, to halfway up my thigh and is starting to spread to the other foot. I work in the medical profession and I've yet to meet a single colleague in General Practice that has heard of CRPS/RSD. |
Hi Jen
I was lucky, my doctors all three know what RSD is. I am being treated for it. Have to find those doctors who know what they are doing to relieve your pain. There is help for it if you just keep looking. Call offices, and interview by phone to see if they know anything about it. Also the local hospital may have referances for you to find approiate physician. I do wish you all the best. ginnie
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New CRPS
Hi I am Danyiel, 34. I was stabbed in the lower arm in September 2011. All three nerves, both arteries and 8 tendons were completely transected. After months of agonizing pain I have finally been diagnosed with CRPS Type II. I'm a single full time working mother...trying to keep it together. At least now after reading all of the great info all of you have posted I do not feel totally insane anymore. Thanks:)
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Hi Danyiel
I am so sorry an act of violence came into your life. The results with CRPS is horrible to have to endure. I have RSD in my foot and ankle so I do know some of what you are experiencing. You are not alone. People on NT do care alot. Keep strong, and know that people also pray for you. ginnie:hug::grouphug:
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Thank you Ginnie:) Praying for others also:grouphug:
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Danyiel, Welcome to the forum. Sorry to hear about your violent crime. You have come to the right place for help. Everyone is great here and we help each other pretty much on a daily basis.
Feel free to chirp in, rant, rave, or just ask questions. :welcome_sign::welcome_sign: Quote:
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Newly diagnosed, CRPS with severe dystonia/spasms
Hi all. I am 31, newly diagnosed with CRPS after a strain to my left achilles tendon while running. At the time it seemed minor, walked it off, but progressively became more painful as the day went on until I was no longer able to walk. I have always been very active and the injury stopped me in my tracks. For the fun of it, and because I have nothing better to do, I'll give you a detailed timeline of my situation.
The day after my injury I saw my PCM (hubby is Air Force) who immediately sent me by ambulance to the ER on another base (we live in Okinawa Japan which complicates things a bit) to check for a blood clot since my pain was "out of proportion to my injury"...sound familiar?? ha. Blot clot was negative so the ER told me stay off it and follow up with my PCM in a week. I was on crutches unable to bear weight at that point. Followed up and was given a boot to wear and X-rays taken which were normal. I wore a boot for 3 weeks, during which my foot swelled to epic proportions, turned all kinds of purple and red, and hurt like a you-know-what. Referred to ortho. It had been 4 weeks at this point. Leg had to be elevated AT ALL TIMES or pain was unbearable. BTW, the military does not like prescribing pain meds so I was on Ibuprofen 800 only. Ortho said I was definitely not their problem and ordered a million blood tests and sent me to neurology. Luckily I was able to be seen the following day. Neurology said they aren't sure whats happening BUT they want to do a nerve conduction study the following week. Blood work is all normal. In the meantime, I suddenly developed severe muscle spasms and what I've now learned is dystonia. From toe to hip, my leg does whatever the hell it feels like all day long. I come close to kicking myself in the face a hundred times a day. The pain is relentless. Seeing this, I was referred to Internal Medicine who (luckily once again) was able to see me the next day. Turns out, my file is flagged as priority---sometimes the military does things surprisingly efficiently. IM says we don't know but prescribed Prednisone, Valium, and Neurontin. When I went back to Neurology for the Nerve conduction study, the Head of Neuro was the one who saw me and refused to do the test knowing it would exacerbate my pain. He diagnosed me with CRPS on the spot. 7 weeks, 8 vials of blood and 9 doctors later, I had an answer to my problem. Still not getting pain relief, hubby drug me to the ER where they gave me a mild narcotic and flexiril which did absolutely nothing, then sent me home. 2 days ago I had an MRI of my ankle. EXCRUCIATING because they basically locked my spasming leg into some sort of torture chamber for 20 minutes. MRI shows my achilles has healed nicely but that I've torn 2 ligaments in the front of my ankle because of the severity of spasms. No wonder they hurt so much!! So yesterday I saw a new Internal Medicine doctor who was WONDERFUL. Prescribed Lyrica in place of neurontin, Elavil, Baclofen, Vicodin, told me to stay on the prednisone, exchanged ibuprofen for Mobic, Ambien for sleep issues and Prilosec to protect my stomach. I now have a sympathetic nerve block scheduled for Aug 9, a followup with the doc on the 13th, a 2nd block scheduled for the 20th. And a TEAM of doctors--Pain Management, Neurology, Internal Medicine, and, when I can tolerate it, Physical Therapy. Currently my swelling is 80% under control. My foot sweats like a beast, and is growing hair like something out of a horror movie. Baclofen isn't helping at this point but I was told it had to be slowly increased so I'm hoping that it will eventually. By far, the spasms and dystonia are my major concerns. I can't drive and my ankle is positioned oddly so I couldn't walk even if I were totally pain free. It's locked in place. My leg swings wildly all day everyday. The only time it stops is when I'm asleep. With two kids, this has been beyond devastating. I don't even make dinner anymore. After missing a day of neurontin as I switched to Lyrica I realized it has been working well to control the burning pain. I am able to tolerate touching it, but don't wear a sock and can't get a shoe on. QUESTION: Does anyone have any experience with nerve blocks and dystonia or spasms? The doctors are unable to tell me what (if any) relief it will bring, and the literature I've found on it doesn't look promising. I feel very blessed to have been diagnosed so quickly and I know that's half the battle for a lot of people. I'd love to hear from anyone who has spasms or dystonia and how they've controlled it or are trying to. Also--thank you to all the people who've told their stories. This gives me much hope! |
Hi askcb
Welcome to Neuro Talk. Oh boy have you been through the grind mill. I do understand what you are going through. I do not have the full blown CRPS but do have RSD in the ankle and foot. I go to a physiasist. this helps the whole body. I have Volteren and another compound made from the pharmacy which has Ketamine/clonid/ gabap./imipr/mefen. These hurt to rub on but help. One required a full minute of rubbing it in. If I use too much I get a rash. However this helps along with all the other medications. My RSD came from injury too, torn ligaments, archilles, colapsed foot. Can't do surgery to correct it. Had to ganglion cysts removed which triggered the whole shebam. If you would ask your doctor about these two compounds, there may be a bit more help. I do also take a narcotic, and do my best to take as little as possible. I wish you all the best. sorry this happened to you. ginnie
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In terms of my spasms...there's nothing that stops mine...at random, I kick out or my leg goes flying into the air. Extremely painful. I've been on a variety of different muscle relaxers but nothing works for me. I can go a day or two without a twitch during my "alert" hours but I've been told when I sleep, my leg goes nuts nightly. Don't give up hope though. We are all different in what works and what doesn't work. I wish you the best of luck in your treatments. It's not easy to have this disease but that's why there are groups like this. I've found a few support groups that without them, I doubt I'd be here today. I've been through hell and back so many times, I wonder where the strength comes from. Not just because of the disease either. |
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Best to all of you. :):hug: |
Welcome to the forum. It sounds like you got to see all the dr's. in a very short time. I am glad to hear your IM gave you medications in the end, including something for your stomach.
For some reason, these dr.'s don't seem to think that all these medications tear your stomach up. I have had lots of blocks. They give you a little anesthisia, but your awake, give you a needle in the back. If it is rsd your foot and leg may immediately to a few minutes, feel and turn bright red. I have found I got my best results when they did them one week apart. Good luck and feel free to post. |
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