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!