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12/06/2011 11:33 PM

What led to the injury that caused your RSD/CRPS?

rsdcrpsfire
rsdcrpsfire  
Posts: 2023
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I'm an Advocate

Hello everyone

This topic is about what you were doing at the time of the injury that led to your RSD/CRPS diagnosis.

In speaking to a friend, a member here, we were discussing common denominators which bring us together as RSD'rs. This isn't going to be the topic we discussed, (saving that for later) but perhaps a wee bit similar in a singular form.

At the time of our injuries we were doing what and where?

I've noticed that all of us were active prior to our diagnosis'. I don't recall ever meeting or speaking to an un active person being diagnosed with RSD.

We are people who ran, competed, played sports, danced, water skiied, sky diving, horse riding, shows, actively worked or volunteered ourside the home, students, full time students, people who worked and went to school. Usually always on the go and who lived a busy happy and fullfilling life and so much more.

Even the home makers I've spoken to that didn't have to work outside the home were active inside the home with children or chores.

This is why we've all become or at sometime became so devistated thinking and believing our lives were over. We lost our active lives and all that went with it.

I'll begin...

I was working the night shift, I only worked 3, 4 hour shifts a week at the time since our son was only a year old when I returned to work as a grocery checker. Previously I was a GM for a high volume restaurant. I also managed a bar/nightclub prior. Often working both at once. I left worked to have my son. Then returned to part time work since I worked 40-60 hours a week when the girls were young. I wanted to be home for my children finally.

For those who didn't know, our son is 9 years younger than our second daughter and 8 years younger than our oldest. So he's 14 now, and the girls are in their 20's.

I had been nagged and nagged to be an assistant manager of the store I worked at since I had the background for it. I continued to decline. I was happy being farmers little duck.

But.. I was used..

That night I was the manager on duty (even though I wasn't being paid for it) I had the keys to the store, the pass code to the safe, and the alarm codes.

I was to relieve a worker, my shift started at 8:00 pm, she was to get off at 8:30 pm.

Instead when I arrived she was already cashing out her til and flat out told me she was out of there. I told her she wasn't done, but being that I wasn't "really" a manager, I wasn't respected as such. The girl left.

She did not stock bags or put any inventory up. I had 1 girl working with me who was brand new.

I was stressed. I had to get my til ready, verify the previous drawer and count, try to get my area ready that the girl who ditched me didn't have done and the store was busy. I was training the new girl and when she got customers I often had to either leave my area to assist for verbally assist.

Boxes of inventory that needed to be stocked was everywhere.

It began getting busy, my line was getting long, the other girl was trying her best but I couldn't do both our jobs, she was extremely slow, so more and more people were coming to my line.

I went quickly through the very few bags (the plastic grocery bags nearly all stores use) and had to leave my register to go to hers where there were some located beneath her register.

I bent down to retrieve the bags and came up, I was moving fast, my line was still full and people were waiting, I came out from under her register and moved to the end to get out and as I did my blouse snagged on a fire extinguisher hanging on the side on a nail. It wasn't even enclosed.

Well (holds my breath) I swooped around it to try to get undone while still moving, I proceeded to trip, stumble, trip again, and fly across the store, I had nothing to grab onto to stop the fall. My upper body slammed into a display of Debbie treats, funny I know, but I was still stumbling, eventually I fell and landed hard on the hard surface floor.

I had a clip in my hair, a large barrette and when my head slammed into the ground the clip pressed into my head, my back also hit just as hard.

I was on the ground for a few minutes, I passed out but only for seconds, I recall leaning upward and someone offering to help up (a customer) but I declined because I was so embarrased. And being the person I am I thought I could help myself.

As I went to stand, I couldn't. I flew across the store so much that I landed back at my own register mid line, but the belt that moves groceries to the checker was still above me, I used my arms in a backwards motion to pull myself up. When I went to put pressure on my right foot it wouldn't go, so I hopped around to my own register and sat on a crate there.

I called my good friend who had taken the asst manager positon when I declined. Her and her husband were there immediately as they only lived right around the corner. I had told her I had an accident.

When they arrived, my ankle was red, I begin taking my shoe off and it was so swollen already it would barely come off. I got it off and my foot was black and blue, raised about 2 inches and swelling even more.

The GM arrived after I was taken to the hospital by ambulance. He assumed the accident was caused by all the boxes of inventory that needed to be put up. The store was a mess. OSHA would have had a field day. All this was left by previous shifts.

When I went to the hospital I didn't talk about my head or back, nor did I in the ambulance. Once again Twinkle trying to be strong. ~shakes my head.

They xrayed me and diagnosed me with a sprain/strain, gave me crutches and 3 days off work. By the third day my foot was completely black with blood on the surface. I was further put out of work for a week. I was put into PT for 5 sessions and on the 3rd the therapist refused to treat me further. He used ultrasound to try to break up the blood, but resisted further PT because of the way it looked and the fact I could not weight bear at all.

Come to find out the tendons/ligaments were torn off the bones between the 2nd and 3rd metatarsals so my foot was splaying, seperating as if broken in two but held together by the skin. A major mis diagnosis. They had me attempting to weight bear on a regular basis for 6 weeks prior to my actual diagnosis of the detatched tendons. My diagnosis back then was called a Mid-Metatarsal Separation.

I had surgery to attempt to repair the tendons and the rest is history even though there's so much more to the story.

My boss never denied the incident or fought it. I've never been able to return to work since. My last day of work was the same day it happened. January 26th, 2001. Exactly 3 months after my 32nd birthday.

I don't actually have RSD, I have CRPS type 2. I wasn't diagnosed until 2003 and verifed by PM once I got there in 2004. No treatment other than medication management. I didn't get my first series of blocks until 2006 due to WC and my SCS came soon after in 2006. Back when they were still thinking stages existed I was in stage 3 when diagnosed and already presented with atrophy as well. I still have it.

My chances for early intervention never existed and that's why I progressed so badly. Since then I've been diagnosed with several other conditions secondry to CRPS.

I wonder if anyone else was having stress or similar emotions at the time they were injured. I wonder if "emotions" or a stressful situation somehow triggered RSD.

Looking forward to hearing from you..

Wishing you pain eased days and nights,

~Twinkle

P.S. I came really close to calling in sick that night... but that wasn't my nature. It caused a lot of "what if's" for a long time.

Reply

12/07/2011 10:21 AM
Mrsmike
MrsmikePosts: 153
Member

I don't even know where to start because I didn't have an injury like Twinkles.

It started the summer of 2010 when I was getting alot of pain in my right elbow. Me being me decided to ignore it and cope with it on my own.

We had a few extra days off around Labor Day of that year and went on an extended weekend camping trip. I always loved camping. We would take the dog and go for long walks, sometimes taking a hiking trail and kept walking (even though we were thoroughly lost) until eventually it brought us out on the other side of the state park. Lots of really having fun with other campers, sitting around the camp fire at night. Camping gave loads of time to really relax and catch up on my reading (was working full time at my job then). Gosh, I miss those times.

Well, anyways went back to work and went to reach for something on my desk, patients insurance card, really can't remember. But, agonizing pain. Went to my PCP and was diagnosed with lateral epicondylitis (tennis elbow). Out of work for 2 weeks to rest the elbow. Did not help. Was sent to orthopedic. Cortisone injection and out of work for 2 more weeks. No sucess with that either. Next step was a full arm cast. We are talking from fingers to the shoulder. For an entire month. Out of 6 weeks for this.

All of the above gave me no relief. He decided to try an experiment. He injected lidocain (I think it was lidocain) directly into the nerve near my elbow. He said the lidocain would disolve within 24-48 hours and to see what happens next. Lo and behold, no pain for 4/5 days. It felt great. But, the pain came back and worst than before the shot.

It was at that time that he diagnosed me with RSD. That is what the experiment was for, to see if I responded to the nerve being blocked. Almost like a sympathetic nerve block but on a smaller scale.He sent me to a PM for ganglion nerve blocks. Had a TIA during my 3rd block, no more blocks for me. That is when they started me on all the medications. Had surgery on my right shoulder at the beginning of this year. We did a block prior to surgery but to no avail, the RSD spread. So now I have RSD from my fingers, up into my right shoulder. I keep saying I think it is spreading to the left because I feel pain and burning (to a lesser degree than the right though) in my left shoulder and upper arm. Just had a MRI of my neck to make sure that is not what is causing all the shoulder pain and to rule out everything before they call it a spread. That is all I know is that whenever I have anything done (even the area near my breast biopsy hurts badly) the pain is tri-fold after, some goes away but some stays. Are these spreads??

I have always said jokingly (now I wonder if it wasn't true) that I relaxed so much that weekend that going back to work and having the work stresses again is what injured me so badly.

Hugs, Mrsmike

Post edited by: Mrsmike, at: 12/07/2011 10:34 AM


12/07/2011 06:51 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

I hope everyone will tell their story. The time of my little injury was a time of stress for me but is goofy. I do wonder the relation of stress, or over stress which is distress, in what happens that causes RSD. Just don't know.

First, I was married for 23 years and there was violence from the beginning. Sometimes it would go away for awhile and I thought we were beyond the violent part, but we never were. There is a cycle of violence. He pulled a gun on me once. I thought my arm was broken but was not allowed to get help once. Once I was thrown across the floor and into the wall and my face was all bloodied. I couldn't leave the house for a week. I was bitten, almost pushed out of the car when it was racing down the freeway, thought he was going to push me over the balcony, spit on in the face, arms were twisted violently and strangled. There were more things. I had to leave to give my kids a chance of having one sane and sober parent. Many times we had had to leave in the middle of the night and go hide out in a hotel or somewhere. He found us once and it was terrifying. Once he held us (me and the kids) hostage for a whole day and we couldn't leave the room... I was very concerned if we would survive that day.

After leaving there were still times we had to go hide out for our safety. Once my "ex" (the divorce was final) called me crying and begged me to come over. He was suicidal. I felt like I should go. On the way there I called our former therapist who was very afraid for me to go there. He called my "ex" who was sitting there with a loaded gun as I was driving over. He had lied to me about that. If I had shown up before the therapist had him empty the gun, I don't think either of us would be alive today. There is a long scary story about that night when I thought he was coming at me to kill me. I had no way to get away. I thought those were my last breaths. But, they weren't. We (my ex neighbor and myself) got him to a hospital that night per his requests.

The next day he called me to tell me that he was going to kill me. The doctor there had committed him for 48 hours against his will because he was a threat to himself or others (me). But, since my "ex" had money and was friends with the mayor of Dallas and the governor of Texas (who became the President) he was able to get out in a day. When he did the psychiatrist from the hospital called me and told me that in 25 years of doing his job no patient had been able to get out like that. Also, he told me that although he was not suppose to call me with this information he felt like he had to because my life and the lives of my children were in very serious danger. He told me to get the kids at school immediately and disappear. I did for several days until we had to come back. You have to. There's no way not to come back to your lives.

So, the injury that finally led to the RSD? I was home alone one night, running the water to take a bath and relax. I was always in a hurry and rushing around. I got distracted and then realized that the bath might be about to overflow. As I rushed into the bathroom, I stumped my toe on the edge of the wall. I stumped my toe! THAT was what changed my life forever.

It is such a stupid story and after all I had been through it seems unbelievable that stumping a toe into a corner of the wall in the bathroom could do this. Now, it was a really, really bad stumped toe. I knew immediately that it was broken. What I didn't know for months was that it was shattered down in the joint. So, after the stump in June I had elective surgery in December to get rid of the lingering pain. I could wear shoes and go hiking in Colorado, but it hurt. The surgery would cure that and within 2 weeks I would be back to "normal" and with NO PAIN! Only I got worse pain. Even though I followed the doctors orders exactly and only walked to go to the little girls room, I just got worse and worse. The surgery was Dec.3 and in Colorado. Over Christmas back home in Texas I was at the ER twice in terrible pain. They didn't know why. No one knew why until summer when I saw an ortho. surgeon who diagnosed RSD. He sent me to a pain doc who immediately started doing lumbar sympathetic blocks but to no avail. They were helpful for about 12 hours only. He said they confirmed the diagnosis. I've seen 4 pain docs, 4 ortho. surgeons, 5 podiatrists, 2 psychologists and an infectious disease specialist. The last one was because one ortho. doc thought it was a deep bone infection. After over $1,000.00 in tests, it was confirmed that it wasn't. All the doctors confirmed the RSD eventually. It took me most of 2006-2010 to fully accept it which is why so many different doctors were seen. I just wanted someone to fix my TOE!

Last summer one podiatrist did. He cut it off with part of my foot. Now the RSD is in my foot and ankle and leg. For a couple of months it was in my other foot, but that got better. That's my story of how my little toe almost destroyed me. Why couldn't I have been snow skiing or something?

gail


12/08/2011 04:44 PM
freddysmom
 
Posts: 198
Member

I will tell my husbands story. I do believe stress, per-existing conditions do play some part in this syndrome. My husband had surgery for a bone spur back in Feb. of this year. Pain started increasing over several weeks and finally they realized he had internal bleeding in his foot from the first surgery. The doctor had sliced an artery in half and didn't realize it until a month later. A second surgery was performed to seal off the bleeding artery end of March. Mid April he was diagnosed with RSD. My husband has PTSD from going overseas....Iraq and Afghanistan. I do believe that there is a link there between the emotional and the physical. With PTSD your body is in a constant heightened state....fight or flight. I tend to think that is what is going on with the nervous system and RSD. That is our story and my two cents on the subject. I hope more people will post with their stories! Smile

Jen


12/08/2011 06:21 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Jen,

I'm so glad you shared that and let us have that information. I was also diagnosed with PTSD and was fighting that when I stumped my toe. My body was also very heightened to stress due to withdrawing from the Xanax I had taken for a few years for the PTSD. I decided to stop taking it due to it's side effects but the withdrawal was terrible. In that state this happened. So, it makes sense to me from my experience and other things I've read. I'm sure not all would agree. It would be hard to prove at this point. I hope more people post, too!

gail


12/08/2011 08:27 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
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I'm an Advocate

Jen

You hit the nail on the head in my opinion. It's seems to me that stress and or heightened emotions at the time of our injury activated our basic instinct which is

Fight or flight. The Sympathetic Nervous System is the Flight or Flight.

I was also diagnosed with PTSD due to flying across the store before I landed on my head.

I hope people keep posting because I think this is a really important topic. So many similarities already.

Best wishes to you and your husband,

~Twinkle

Will post more later


12/09/2011 06:31 AM
DeputyMom
DeputyMomPosts: 12
New Member

I have told my story to many people, I think only half know what to say! It's a strange story, but some of us lead strange lives... This all begins in 2000, I was in the Marine Corps, stationed in Jacksonville, NC. Going to work, running, and exercising everyday like all Marines do. I LOVED my life! My unit was deployed to build and protect sand castles for a year (well observe for chemical activity near sand castles anyway) or so, saw some pretty bad things, and had some pretty close calls, but my four man team arrived back home safe and unharmed. I was offered an opportunity to transfer to a different position, and work as a teacher of new Marines at the School of Infantry, and I accepted. In my new position, I had a lot of extra time, so I began working with other Marines in my area training to run a marathon. I also volunteered to assist in other training areas to fill my time, but more about that later... We ran ten miles Monday, Wednesday, and Friday, did weight training and shorter 3 mile runs on Tuesday & Thursday. I was in the best shape of my life, aside from some minor tendonitis in my knees (Navy doctors called it "Illeo-tibial band syndrome"Wink, shin splints, and stress fractures in my tibia's, fibula's and the 1-3 metatarsals on my left foot. All just minor aches and pains really, I was prescribed Motrin (grunt candy) and told to slow down for a bit, which I totally did NOT do (pain is weakness and all that...). This went on for a while, didn't really slow me down much. It was August 2002, black flag conditions (meaning too hot to train), and we were humping (marching with heavy packs) back from a field exercise. I went to my room to change out and shower when I discovered my left calf was EXTREMELY swollen, and pitting. Having some medical knowledge from my time as a paramedic before enlisting, I knew this was probably a sign of something bad. I went in to the clinic, and the Naval doctors were stumped, so I went back to doing what I did and the swelling eventually went down on its own. I kept taking my Motrin, pushing myself, and soon had my first marathon under my belt (placed somewhere near the middle, I was proud!). A couple months later, I was working as a range safety on the grenade range (yes, every Marine handles, and throws a live grenade during training, scary right? Just imagine giant cement block cubicles, called pits, all lined up facing a field.) My purpose was to walk back and forth past the pits and mark down the names of the Marines that had completed the task, simple right? I had done this numerous times, and actually enjoyed it! (It's almost over, I promise) Well, this day was pretty "normal", until the accident happened. It's a little fuzzy to me, but I was told the story a few times by a few different people, and this is what I think happened... I was walking by a pit, when about 12 feet in front of me a Marine missed the throw, his grenade hit the wall and bounced back. The instructor in the pit did exactly what he was trained to do, he grabbed the young Marine and launched the both of them as far away as possible while yelling for everyone to take cover, I have no memory of any of this. The only thing I know, is that I woke up several hours later at a hospital about 40 minutes away with my legs in splints up to my hips. I was pretty heavily drugged, but I do recall the doctors telling me that the percussion from the blast had exacerbated my stress fractures and caused my tibial bones to split like tree branches. They decided to allow the bones to heal on their own, and fit casts on. (The Marine and his instructor received pretty significant injuries, but fully recovered in time) Time went on, weeks actually, and I went from casts to splints to walking boots, but wasn't really walking... At eight weeks, x-rays showed the bones had healed, however, bone scans still showed over 50 stress fractures in EACH tibia, and several in the tops of my feet. The naval doctors diagnosed me with a chronic stress fracture disorder and told me I would probably never walk again. That made me very angry, and I decided they were wrong. I worked and trained and forced myself over the next few months (while my discharge was processing) to stand and walk. After a while, I worked from walking to jogging, and from jogging to running. All I needed to do was pass a physical fitness test and I could stay. Six months post injury, I completed a three mile run in 19:50, and managed to stay in the Corps. The pain however was growing unbearable. I went off base and began seeing civilian doctors, as thus far the Navy had done more harm than good... A year or so later, I left active duty and came home as a reserve and civilian instructor. Still in unbearable pain, I sought out any and all treatment options, and in the many years that have followed I have seen over 40 doctors. Last September, I was referred to my first pain management doctor, who within 5 minutes diagnosed me with a severe case of RSD. I cannot move any of the toes on my left foot, I'm losing function in left ankle, and have no sensation other than burning pain below the knee. My condition is deteriorating, but we are doing all we can. I have been off work since September 17th, and 4 surgeries and a second SCS trial later, will return by February 1st. I have always worked full time, and do not plan to stop any time soon. I have been experiencing pain in my right wrist, elbow, and shoulder, but I'm not willing to admit that it could be the RSD spreading yet... That's about all I have on this subject, thanks for reading!

12/09/2011 08:17 AM
revvanbus
revvanbus  
Posts: 2032
VIP Member

I had always been very active, cross country races for 11 years, white water canoeing, hiking, diving, dog training and more recently on a dog drill team where we danced as a team in formation with our dogs.I was losing feeling and use in my hands, so went to a spinal orthopaedist to see if we could figure what was wrong. The spinal discs were collapsing and spinal nerves entrapped and the spinal bones collapsing on themselves (I have had osteoporosisi for years, just slowed down by the newest medicines). Surgeon decided to save feeling and use in my hands/arms a fusion was required. That was successful. All was fine for a few months but only one hand was better.

So a second fusion was scheduled and done. Within a week after, my right arm started burning like someone pored lighter fluid on it and lit it afire. And the elbow started feeling like I had bumped the funny bone with the burning, feeling of being electrocuted, paralysis and deep bone pain but unlike hitting my funny bone, it never stopped. Orthopods labeled it "tennis elbow". Shots to the elbow, full arm casting, braces, physical therapy were of course not helpfull but were hurtfull. Finally, 7 months in, I was refered to a neurologist. He said RSD. Sent me home to look it up, Back in a month, no meds and stopping PT, I was still in tremendous pain, now also in my hand, could not stsnd anything to touch my hand/arm, not even softest cloth.

Neurologist sent me to a pain clinic, now month 8 1/2. The pain doc still tried the Stellate ganglion blocks 10 days apart and intensive PT but it was probably too late to even have a chance of helping. So we started going through his bag of tricks to see if any would help,

I can't even remember everything we tried. I remember the Sympathectomy (cutting the sympathetic nerve to the right hand) which worked for 3 months until the nerve regrew. The surgeon was not happy, said my body was a freak. Didn't see him again. A third cervical fusion was done to keep function in left inner arm (thumb and forefinger). RSD spread to left arm. Pain doc put in SCS with two leads so both arms were effected which helped until something (lead movement, new nerve [my body is really a freak] whatever)so now I had only SCS helping my left arm. For 8 years, the left arm was almost pain free and the RSD did not progress in that arm.

For the right arm /hand/shoulder, I was on morphine (increasing doses because in RSD the dose has to increase to keep helping), Neurotin (gabapentin), physical therapy, occupational therapy. my spinal surgeon did surgery on lumbar spine to try to relieve disc and bone collapse in those spinal units and the RSD spread to my feet, then legs.

Pain doc twice tried implanting pain pumps but both times both the implants to the spine and the implanted pump quickly got inflamed and then badly infected and had to be removed. So no more pain pumps. (I told you my body is odd).

Finally, after many meds, treatments, highest level of morphine which was not working, me in a power wheelchair, hands/arms, feet/legs totally insensitive to everything including needles into bone, falling and having SCS leads move so far down the spine that the unit had to be removed; my pain doc and I agreed that because our monthly meetings evolved to him just asking how I was and writing morphine scripts, we had run through everything he had to offer.

So a year and a half ago I moved to another pain doc with his blessing. This doc helped me get off morphine and neurontin (almost done, sorry for the length.) But he doesn't believe RSD exists and thinks he can resolve all other medical conditions I have by I don't know, magic? So I now have no pain doc. But still going to the pain psychologist, on Lyrica and no other pain meds. His techniques help, especially in the day.

I concentrate on emailing, art work, dogs, cooking, reading to keep my mind off the pain. Night is still my worst time by a lot. I sleep little like many others here and have feet/legs and hand/arms that burn, burst out shooting electric arcs (at least that's how it feels) and deep bone pain. Just like it started almost 12 years ago but affecting way more parts of me. My dogs and my avocations; painting, reading, cooking; keep me slive. I found this group about what, 3+ years ago? And don't know how I survived before found you. Thank God for You All!!!

Hugs and blessing for everyone. You help me stay sane (well relatively)

Rev.


12/09/2011 04:33 PM
Jen28
Jen28  
Posts: 108
Member

I know I post a lot; I probably have some kind of PTSD from the experience that got me here, and I've already had generalized anxiety disorder for 10 years prior. I've tried to handle the anxiety without meds for the last few years, except I wake up panicking during the night, so I take a little bit of Xanax before bed. In July of 2010, my husband and I were inspired to start running. We had listened to Christopher McDougall's "Born to Run," and we went out and bought the Vibram Five Finger shoes and started walking/jogging. It was so wonderful. Every day I could do a little bit more, go a little bit further, a little bit faster. We started participating in local 5K and 10K runs, and the camaraderie within the running community is amazing. The socializing/beer drinking after the races was finally a chance for me to get out, cut loose, and meet people like me! Well, in Feb. 2011, we did a 9-mile race, and it was such a tremendous accomplishment. It made me feel like I could achieve anything I set my mind to!

Unfortunately, my left foot started getting a little achy after that run. Before that run, I had noticed some numbness in my toes while training. My arch starting becoming really sore, and then the ball of my foot started feeling a sharp, stabbing pain when I would roll forward onto it with every step while walking. I thought I fracture the ball of my foot! I was eventually diagnosed w/Morton's neuroma between the 2nd and 3rd toes - it is a growth of scar-type tissue on the nerve as a result of it getting pinched and squeezed. Probably from running and wearing too narrow of a shoe. An MRI also revealed a stress fracture in the 2nd metatarsal (in the forefoot) and a little spec of something in the 2nd toe joint. Had surgery 5-18-11 to cut out the neuroma (removing a section of the nerve!) and clean out the joint.

I woke up from surgery with the burning pain of RSD. It's documented in my op report - "burning pain in 2nd toe." I ended up with so much swelling inside the splint that I had some compressed nerves that resulted in lots of zapping and zinging sensations in the foot. There was discoloration immediately, and some weird looking bruising lines. All of this was ignored during my post-op visits, my stitches were taken out a few days too early, incision started coming open, had some oozing, got antibiotics called in... I was non-weight bearing for a month, and the surgeon demanded I start wearing a shoe and walking. A few weeks later he told me he didn't know why I was in pain, and then he dismissed me.

I went to my primary care doc for help and referrals. There was still so much pain in the ball of the foot when I put weight on it, on top of the burning skin and toes. It hurt for sheets to touch the foot. It was the mother of one of my daughter's friends who told me, "That sounds like RSD." She's a nurse. When I asked what RSD was, she just shook her head and said, "You don't want RSD; it's reeeeaaaallly bad." Of course, I immediately looked it up and was heartbroken to see all of my symptoms matching perfectly. My primary care doc agreed and sent me to a pain doc who gave me the formal diagnosis and did a block. It helped, but as most of you already know, he didn't do the serious of 3 blocks in 3 weeks. I only had one more sympathetic block, and it was 6 weeks later. They both helped, but not enough.

I'm at almost 7 months now, and in the last few weeks, the RSD has flared back up and started spreading up my ankle and into my lower calf. I'm hoping a new pain doc might be able to get me into remission, but I'm trying not to get my hopes up too much. Of course I want to keep teaching and get my life back. This painful neuroma in my foot is still there, though. The surgeon left it there, and I walk with a horrible, painful limp. I'm afraid of a spread if we try to treat it. Injecting it caused the flare/spread.

So here I am... my husband continues to run without me. I am too traumatized to attend a run; I can't even cheer him on at the finish line. Once he locked his keys in the car, and I had to bring him his keys. Just being there, seeing everyone happily doing the very thing that led to my RSD - the very thing that had given me a new-found, healthy love of life and a healthy social life, too - it was too much, and I was just crying hysterically. I have taken up swimming for exercise, and I don't like it even half as much as I liked running. It's hard enough to work out, but it's a real pain in the you-know-what to work out when your face is under water and you're trying to breathe without drowning! Now my incision has started coming open from 6 months ago, and it's turning into a kind of lesion, so I haven't been able to swim anymore. I'm going downhill, but still trying to fight this and not let it ruin me! New doc and more blocks coming next week Smile Right now, I think it will be a miracle if I can even finish out the school year teaching. The pain makes this job really hard, as if teaching high school in a 'poverty' area isn't stressful enough already! I need to work on taking things one day at a time, and that can be a hard thing to do. Well,that's my story and where I'm at now. I'm fighting to hold on to my 'life as I knew it,' but I'm in the process of accepting my new limitations and letting things go - the things I can't do anymore, like coach or play volleyball or run with my husband and kids, and so much more. Thanks for reading, and good luck to all of you who have come to this site because we sure need it!


12/09/2011 07:28 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Oh my goodness, your stories have me tearful again. So much life and living has been lost! Whenever I see the posts on the topic "Will I ever be normal again?" I just want to write "No."

How can this happen? I was also in the best shape I'd been in for years when I hurt my toe... doing the treadmill for an hour a day hard and had lost 80 pounds. Looked good, felt great. Was leaving for Colorado in a week and very excited about it. It just doesn't make any sense!!! And, it makes me so mad for you guys to suffer.

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