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#1 | ||
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Junior Member
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Hello everybody!
![]() I would like to share my story, I hope it helps anyone out there like me, and I welcome all opinions and suggestions too. November, 2007 I took part of a pre-requisite physical for employment, part of the physical was a Tetanus shot, my last one was in 1993. (administered correctly) I have no allergies whatsoever. As I was getting the vaccine I didn't notice any "red flags" or feel that the nurse was inept at doing her job, but due to her supreme ineptitude, she administered the vaccine half way down my upper dominant arm and parallel hitting my axillary nerve. ![]() To this day I still have this lemon sized lesion/lump/swelling at the injection site, even though my open MRI was negative. You can't breath on it let alone touch it, rolling over on it sleeping...etc For me it started out as my lump would have it's own temperature and change colors, it electrocutes the daylights outta me, along with the internal sizzling, currently my upper affected arm is 3 1/2 " larger in circumference than my other arm. In time I developed Allodynia (skin burning) My primary diagnosed me with CRPS after seeing me specifically for my injury 1x per mos for 3 yrs, unfortunately it took him 2 1/2 of those yrs to diagnose me which made my chance of any remission fade away. All of my medical records were sent to a prestigious university and they also agreed with the diagnosis. I've been through it all, I have a and always had a healthy (phobia) with pills, I even tumble an aspirin in my hands a few times to make sure it's an aspirin...lol! Still, doctors new I prefaced it but still tried to write me scripts for chronic pain, but I never let them finish writing it! I've been offered Oxycodone, Cymbalta, Neurontin, Lyrica (mayo clinic), spinal chord box (mayo clinic)...etc, a few more but I refused them all. Forget about that dangerous Ketamine as well, or any pain pumps, forget western medicine for chronic pain all together!! I also been through worker's comp, federal vaccine program, currently entrenched in a battle with SSD which as you know is a completely different animal. I tried special holistic mud treatments, anger mgmt, Integrative Pain Therapy, group hypnosis, acupuncture, aquatic therapy (helped a bit bit was very very expensive), pain patches, physical therapy, psychiatrists, on and on and on there's more but you got the gist. I saw a neurologist who showed me he was afraid to touch me because he didn't want to get involved with worker's comp, even though I communicated to him and his staff on a few occasions prior to my appointment that my worker's comp had already culminated, but I guess he had too much wax in his ears to hear properly. This doctor gave me that pin prick test and told me indeed I lost some feeling in my upper arm, and his WILD suggestion was for me to contact a "general surgeon" to have possible "exploratory surgery" to see whats inside my lump cause there's definitely something there, ALL my doctors laughed at his hypothesis and steered me away from that bologna and guesswork. I've had functional capacity tests, emg (showed a definite signal delay at my axillary nerve dead center on my lump/injection site), ekg, catscan, mri, full blood and urine, heart and lung tests, eyes and ears, nothing left to chance...etc I've been to a myriad of Independent Medical Examiner's (all IME findings favored me because they could see the injury with the naked eye), the first one I went to in 2008 said he thinks it's axillary nerve damage (prior to emg), another one said it looks like a sterile abscess, another said it looks like an organized hematoma, I can keep going trust me. I'm 41 now, my last 5 yrs seem like a complete torturous nightmare with no recourse for pain. My CRPS has made my dominant arm lose some hair, my lump/injection site as I said shocks me so bad it makes my teeth chatter, and from my elbow down my Allodynia (diagnosed by local hospital doctor) aside from skin changes and especially color (like a lobster especially flaring) burns me so bad for no reason let alone a brush by or clothing or wind and especially cold temps, that it frightens me cause it burns so bad it makes me think it will start a fire. I am lucky I haven't experienced a deformed limb, sweating issues..etc Here's how my 24/7 is like, my injection site electrocutes me dozens upon dozens of times per day/night I can't keep count and it varies in length and duration (minus flaring), my Allodynia burns me on my skin so badly and combined with the nerve shocks it puts me in a bed frequently cause of all the energy it took to fight it. I still can't believe I haven't taken 1 single solitary pill for chronic pain in over 5yrs...I'm very proud of that!!! (although my brain can use a big time vacation from this misfiring nerve) Let me preface the following with that I'M NO ADVOCATE, but in desperation I have tried high grade marijuana to combat my high levels of pains and help me sleep, just like a reporter reports the news, I'm reporting that it DOES help "me" dull down my nerve shocks a little bit, but for "me" it does NOTHING for my Allodynia, which surprised me to say the least. A few of my doctors without outright showing their advocating, have conveyed to me not only is med marijuana the SAFEST choice for me, but they are in favor of it, but I HATE Hate hate smoking to begin with, science should come up with something safer. I've been trying to go for walks and eat better so my stamina is not always low cause I am always fighting off pain. To me, the letters CRPS/RSD/RSDS/ABC/XYZ are frivolous to me, why?, because even if my diagnosis is incorrect, I have way too many symptoms that mimic CRPS, all I can do is report what I'm experiencing to my doctors...etc, and it's over 5yrs now and still kicking the crap outta me. That so called nurse ruined my life, however I am grateful that I'm still alive and I still have an arm. Other doctors have speculated I might have Macrofagic Myofasciitis, Brachial neuritis, on and freaking on, all before my diagnosis of CRPS. My range of motion is bad, lifting any moderate to heavy weight is so hard to do, impossible to lift it above my shoulder, and behind my back is very difficult to do, to this day you can see my lump/injection site is black n blue on the inside and it feels as fresh as the day I got it. I was in the hospital last month and the doctor looked at it and told me the vaccine was delivered COMPLETELY in the wrong part of my arm, funny, to this day my former employer (who dropped me from their worker's comp cause they felt I was having an allergic reaction) won't tell me the nurse's name whom administered the vaccine to me. I really don't know what to do anymore, if we have a bad winter I'm in trouble flaring wise, lots of bawling on the way and depression, in a normal to harsh winter I can even for some reason feel my Allodynia on my left foot which is the same side as my injured arm, coincidence? One holistic type of doctor did some small test on me and told me "I have been stuck", or "That I have an energy block as a result of my injury". I hope I wasn't misdiagnosed, I think the doctors got it right, all I know is I am reporting my day to day experiences. The Federal Government didn't even fight me one bit regarding my vaccine program, basically cow towed, worker's comp folded as well, SSD has a ridiculous criteria and still in play at the federal level (real real slow process at the federal level), but I've been given a life sentence of pains and a condition that's incurable. I have to watch when I go out so nobody bumps into my arm or that I don't bump into anything...etc I am currently looking at this machine called "Calmare", it's creator has a shady past, I hear it's FDA approved for testing, and it's at the Mayo Clinic for trials, but it's not available where I live (it should be, why aren't all the doctors signing off on it?), have to make sure it's not a ultra expensive gimmicky tens unit. And have to make sure it's safe cause I don't need any extra pain. I know this is a long read, but believe it or not I left out quite a bit. If anybody can help me in any way regarding my chronic pain, even if it's something you may think might not work. If there's anybody like me whom developed CRPS from a incorrectly administered vaccine PLEASE let me know, your not alone!!!!!! I even called Sinofi Pasteur with the batch #, I mean I don't know what else to do, geographically I live in an area that doesn't have all the resources I think I need. Thank you for your valuable time, all the very best! -Paul |
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"Thanks for this!" says: |
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#2 | ||
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Junior Member
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By the way, I put the "P" by my thread title for my name which is Paul, but when I put my mouse over it, stands for politics...oops No idea how that happened lol
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#3 | |||
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Grand Magnate
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WELCOME to NT !
![]() Thanks for sharing your story! This is a wonderful place of support and understanding. Make yourself right at home! Feel free to post in any of the forums. You'll find a caring soul around every corner and it's a very down-to-earth atmosphere. Looks like you are finding your way around pretty well! Just holler if you have any questions It's great to have you! Rae ![]() |
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#4 | |||
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Co-Administrator
Community Support Team
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I'll fix that for you..
__________________
Search the NeuroTalk forums - . |
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#5 | |||
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Legendary
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Paul,
![]() Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. ![]() ![]()
__________________
. "Life without God is like an unsharpened pencil -- it has no point.
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#6 | |||
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Senior Member
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Hey, a BIG WELCOME FOR YOU ! ! !
I feel so sorry for you. 24/7 is hell. I lived through 7 1/2 years of hell. My posts are long, too. First off, I do believe you. I, too, refused pain meds, muscle relaxers, sleeping pills(to this day don't take anything but Tylenol PM or OTC-!!!!- and I must confess, they do help me get a better night's rest, a few more minutes, hours...) I know now that was not good "medicine" by the medical community's statndards. You must break the pain cycle. Life keeps coming at you. It don't help to be saddled with this. I often ponder about that headstrong choice. Like, if the effects of a sleeping pill would have been as bad for me, over 7 years, as sleep deprivation. I think the sleep deprivation is harder to withstand. And now that I do get some rest and can sleep with aids, my pain level is down just by the mere fact, I got some shuteye. The rest of your body might really thank you for a night's sleep. Our body's decondition quickly. So many examples for you... FYI: I have bilateral TOS, scalene involvement, bilateral arms, elbows, wrists, thumbs, bulges and herniated discs in cervical and lumbar, right hip and leg, and yes, anxiety, sleep disturbance and now depression as a kicker. I am much wiser this round. I know what I need. I was rear-ended 12-2011, which has exacerbated my old symptoms that I thought were much better. It's not as bad as the first round, but second round is no picnic. Still, not as bad as the first round. #LIVINGHELL@24/7!!!! ????interesting???? it turned blue ![]() ![]() Keeping my left arm fleece warm helps tremendously. I wrapped the fleece blanket back to my scapulas and up to my ears. Scalenes are tough. You may be able to make a canopy or tent around sensitive site. I also found balloons to be quite helpful in propping myself up. For my armpit, 3" inside forearm, 3", neck, 3" - 6" back 7" or bigger... Oversized tennis balls, in your doggie pet section, for shoulder, back, hip, neck, arms... Harriett Carter is a book you can order things from, online, to help you with challenges around the house. There are others online sites with many, many helpers. like a hairdryer on a stand... #LIFESAVER4MYARMS I did find LED and infrared light therapy pads to be a wonderful aid to improvement. I am now trying to get approved for another one from the 12-2011 accident. Here is my personal vendor for the lights. You may find them cheaper but I don't know if they're the same healing quality as I experienced. I want so bad to start a business with these, to help others... http://healthlightz.com/HealthLightz.html They do have some heat, but the newer models are better because they don't have as much heat. Heat on a microscopic basis causes swelling. swelling causes pain. #fact Also I used Kinesio Tape. Maybe you can't for the red, swollen site, but other parts of your body that are being affected by your debilating condition. Here's a link for that: https://www.google.com/search?num=10....1.-9Zm8jylf_o Physical therapist introduced me to the tape. You may need some personal instruction as to the taping technique that would best serve you. I don't think you will be better overnight. You will have to peel the onion away, one layer at a time, as my pain management doctor told me. So many things here to try. I judged things by positive and negative. Your body will know, or if you quit you can tell a difference. Keep a diary for future reference. There's just too many things to remember. You're certainly not alone here. We do understand. ![]() Quote:
__________________
(Broken Wings) . . |
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#7 | ||
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Junior Member
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Thank you all so much for the welcome!
If only there was a way my brain could just take a vacation from crps pains WITHOUT medications. Would be nice if there was a healthy shake that blocks pain receptors...lol! Or maybe a special spice, or vegetable...lol...guess I'm hungry. |
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"Thanks for this!" says: | (Broken Wings) (11-23-2012), Mark56 (11-15-2012) |
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#8 | ||
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Junior Member
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I see what your saying about weighing out the pros and cons, like me not favoring chronic pain medications, but at the same time my BRAIN never gets to rest and feel normal again, even for a little while. Plus anxiety from not feeling well in over 5 years is bad because it breeds STRESS, which I believe is one of the worst things for the human body and psyche.
So, It's either go on a regiment of something that the safest, but what's considered the SAFEST medication for the type of chronic pain I have? When one of my doctors tried to give me (forgive spelling) Neurontin, I said forget it, I could care less if it has an innate ability to "possibly" block chronic pain...it's freaking seizure medication, I DO NOT want to be bothered with that stuff, forget it. Cymbalta? I say no. Lyrica? Not a chance. Ketamine? Never in a million years. Maybe chronic pain medications are a waste of time for a person with my mindset. A jacuzzi that stays a consistent 92 degrees, with of course under water exercises along with that is a good idea but costly aside from regular maintenance, especially one big enough that I can take if I ever move. Do you have any suggestions maybe on the holistic side of things? Aside from aquatic therapy, I did a complete course of group hypnosis, but I find that because my misfiring pain signals hurt so bad and in different ways, fighting it makes me tired, I wind up foregoing self hypnosis like I was taught, and falling asleep instead which is quicker if my pain is at that level. Eager to hear yours and ANYBODY'S opinions. -God Bless |
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"Thanks for this!" says: | Mark56 (11-15-2012) |
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#9 | |||
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Grand Magnate
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Hi Paul.... Hey Wings...... I am saddened Wings to read you were injured anew in 2011.... that has GOT to be hard hard hard......
Chronic pain pretty consistent here as well... I will not go into the meds, because, goodness, I read your posts; HOWEVER, how about talking on cost of aquatic therapy a bit. I have had a LOT of therapy and the aquatic side as well. The stuff is almost... almost like magic. After all, being dipped in 92 degree F water for a couple hours or more [ yes, you did read that correctly ] has a therapeutic effect no matter what. If you have had enough sessions to get down a routine of the exercises to perform, then ditch the therapy part since it can be done on your own. My own therapist after a while, and recognizing I would just go into the therapy pool and exercise withdrew over time to allowing me to work unmonitored.... this worked for me because I work HARD and used the pool to the max. This is where the cost of aquatic therapy becomes less intrusive. Deduct the therapist from the solution if they concur, then the therapy cost drops precipitously to the mere cost of use of the pool. In my case, since the therapist concurred, the cost went from $150 per hour to a dollar fifty to access the pool. I used the pool for the same two plus hours and paid minimal fees for the privilege. Then there was the convenience factor. Therapy at the center was across town. Therapy pools are abundant around the area in rec centers, fitness centers, the Red Cross center which primarily serves handicapped folks... hey wait, I am one of those too.... ![]() Everywhere a pool exists, I have found folks willing to allow me to use the facility. Cost is usually very minimal. The exercises, as I alluded, are already burned into my mental hard drive, so, there I go. and you can too, I reckon. Kinesio tape? Yeah that stuff is neat, and if its support helps by lightly binding so your tissues are not harmed, your doc may not disagree with its use. The mumbo jumbo of using infrared, and ultra sound have both been part of my gig, so it is possible you may find help as well. One does not know without giving it a try. Most I can offer since I am a car wreck victim and not an injection victim, is chronic pain CAN be endured, conquered, and life may occur in spite of its hindrance. Mostly, I have found helping others, even here in this special place, by reaching out to give encouragement lifts me with even the minimal naturally occurring endorphims of the brain squeezing that miracle of joy into our lives. I will pray for you as well, OK? That is part of my gig as well. Get in the pool. Talk to someone about being able to use it without the trimmings.... you need not build one at home. Those are too expensive anyway, and if you do sell the home, they do not generally appreciate the home value anyway. Yeah, I am kind of a "run off at the mouth typist as well" sorry if this was too long. ![]() Prayin for ya, Paul, Mark56 ![]() |
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"Thanks for this!" says: | (Broken Wings) (11-18-2012) |
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#10 | ||
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Junior Member
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Thank you very much Mark for your reply and suggestions!
This is why (in desperation) I came to this site, aside from the fact that for over 5 yrs I've been trying to find people like myself, and for the past few years have been trying to find a support site like this one. ![]() For me Mark, my aquatic therapy was via my local hospital, even though I get an automatic 35% discount on ALL my bills because I don't work, my aquatic therapy bill was a little over $500 a mos, BELIEVE IT. I was going around 6-7 times per mos if I remember correctly with an instructor and his helper. My local YMCA has one, but I can't use it because people like us need the water to be at 92 degrees, theirs was 81 degrees max, and I asked them if they can make it hotter and they can't for many valid reasons, like it's the YMCA...lol! What exactly does the "k-tape" do? How would it help me? Would the tape have to be wrapped around my lump/swelling/injection site? The following is just my opinion, I hope that people understand that my situation is very unique on how I became injured, I'm not trying to steer folks away from immunization's, just be VERY WARY on whom's delivering the needle, and MAKE SURE it's being administered properly. I think cause I'm a big guy with big arms might of threw this god awful inept nurse a curveball, in hindsight I wish I would of sensed her inability before the permanent damage was done. -God bless |
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