UPDATE (and ReCap): on me
UPDATE: Let me at least give this synopsis of my life since my injury, treatments and medications:
12/2/06 - Injured
12/3/06 - Emergency Room (Prescribed Vicodin)
12/8/06 - Primary Care
12/14/06 - Physical Therapy - only 3 sessions
1/1/07 - Emergency Room - My knee collapsed and hurt more than EXTREMELY (X-ray, nothing found)
1/2007 - Back to primary - referred to Ortho and for MRI
2/2007 - MRI (nothing found)
2/2007 - Orthopedic (informed me he would like to have my knees, really upset me cause I hurt so badly)
3/2007 - Physical Medicine - prescribed Cymbalta for nerve pain
3/2007 - Water therapy - here I learned about RSD, went home and did LOTS of research (keep in mind, in January I was online frantically looking up why my knee could hurt so badly - I found chondromalacia, I found patella problems, I found ripped tendons, EVERYTHING BUT RSD - guess putting into Google EXTREME KNEE PAIN wasn't enough)
3/2007 - Requested referral to pain management - I wanted to get in quickly so that I could get my problem turned around - to keep it from becoming chronic
3/2007 - Still in water therapy - Hurt like hell - but I could also feel that my muscles were responding well - The water was good for them (then I got a bill for $400.00 out of the blue and couldn't afford to finish or do more (I would love to go back to this, and will one day)
4/2007 - Pain management doctor - GREAT DOCTOR he listened to what I had to say, he asked questions that properly follow process of elimination, etc.
5/23/2007 - Nerve block done - PM called it a diagnostic tool - The relief lasted about 2 days - They were GLORIOUS 2 days
7/2007 - Fitted with Trial Stimulator - it was wonderful, until Friday when I wiped my butt and the lead moved, so I had to turn it off
8/20/2007 - Fitted with permanent stimulator - I started moving around doing things to try and make me stronger - well I moved too much and by Sept/Oct my lead had popped out of place
11/2007 - Saw psychologist and psychiatrist - put on depression medicine
01/08/2008 - Lead revision done to fix lead in spine
1/20/2008 - Scar on upper incision got infected went to Emergency room
04/23/2008 - I was very depressed and was told by many well wishers that the narcotics could be making my depression and my pain worse. So I weaned off all of my medications. HEY I HAD TO KNOW, I had tried most other things. It didn't help make my pain better, I was in LOTS of EXTREME pain. It did, however, help to clear my mind. I still take my Norco, tizanidine, and trazadone. I don't take as much as I once did. I believe it is because my head is more clear AND I am able to fight harder for me.
I am still in pain. I am learning to live with SOME of the pain and will NEVER be 100%. I HAVE REFLEX SYMPATHETIC DYSTROPHY / COMPLEX REGIONAL PAIN SYNDROME - I have an Invisible Illness.
In July 2008 I suffered an extreme flare that kept me bedridden for 3 weeks. Which only makes me realize more that this fight will be continuous and never ending. Stress is definitely a factor with RSD/CRPS. I now try to control how much stress I am actually put under. My family helps with that as they too realize that stress can bring the giant down ![]()
I continuously do acupuncture. If I am suffering from a bad flare she sees me more. However, currently I am scheduled to see her every two weeks. Acupuncture helps. It helps me relax. With RSD/CRPS you need to relax. The stress of pain and even the idea of pain can make a person very nervous, and those nerves do NOT need anymore encouragement to act up.
I started with physical therapy again. The doctor said the first thing we need to work on is my core muscles. I agreed as I am weak everywhere. In August the health insurance I was apart of, employer health insurance from when I worked at Walmart, canceled me. So my treatments are on hold until I can flip over to another insurance. Finding a new doctor will definitely be stressful. We'll see what happens.
It is now September and I have had quite a few good days and quite a few horrible days. My son going back to school caused me some stress until Lisa Copen, founder of Rest Ministries, and founder of Invisible Illness Week, informed me that it would be good for my son to get away from my illness as he has been in earshot of my moans/groans/cries for the last year and a half now. I found comfort in viewing his going back to school in a different light.
I am starting to lose a few pounds here and there. The Lyrica alone caused me to gain 30 pounds at least. Please try to be more considerate to overweight people you hardly know, they could be suffering from an illness that causes them to gain lots of weight and their self esteem is already on a downhill slope from not being able to function like they once did, and the medications don't help the self esteem cause most of them play a huge role in causing the weight gain.
I am grateful to have my Spinal Cord Stimulator. First off, it is hard/difficult to classify my pain, however, for this blog, it is probably best to label it as major, medium, and minor. My SCS cannot handle the major flares of pain. It cannot handle the 3 week flare up I had. It can however handle the minor pain. The minor pains that I get daily, hourly. The daily jolts and spikes and pricks of pain that hit whenever they want and knock me on my behind. They hit and my SCS jumps in and they are over sooner than they ever used to be. The medium pain is not a continuous flare, nor is it jolts, spikes, and pricks throughout the day. Medium pain is the pain that I get after grocery shopping and I start walking hunched over limping to the car. Now you may say, "That sounds major to me." It's not because after a dose of medication and about 3-6 hours resting in bed, I can get back up and go about with my normal constant minor pains. In between each of these I use my Lidoderm patches. Per the box I can use 3 patches for 12 hours then I must not use them for 12 hours. I cut my patches in half and 2-3 of those go around my knee, 1-2 go on my upper thigh, 1 goes (when it sets off) on my SCS battery spot, and the last remaining go onto my right elbow (when a flare hits, my elbow suffers too now). I look really funny when all 6 cuttings go on my right leg.
PLEASE KEEP IN MIND: With RSD/CRPS anything can bring on each pain - grocery shopping is just one of many examples.
The muscles are a different story. The SCS cannot handle the muscle pains. If the muscles are tight, if the muscles start twitching, if the muscles hurt so badly that you cannot even touch me with one finger than I must rest. Strengthening them helps some. Which is nice. I walk even though it hurts. I garden. Anything to try and strengthen them. Another thing to note: my muscles twitch. I will be sitting somewhere and can watch them under my skin jump around. Do I have muscles right above and around my knee? If not, then something is twitching there. I get these twitches in my knee, my thigh, my hip, my battery area, my back, my elbow area - AND, all on the right side. After the twitches, I must prepare for the pain, it almost always follows, and it's bad.
I hope and pray that you can take from my experience and use it to your benefit.
I may have missed some stuff above, but you get the idea - If I remember more I will post it. But for now this is me and this is what I have been through in the last year and a half learning to live life with an incurable condition.
Love, Me





Christine,
I am so sorry that you are suffering. I have had RSD since 1994. The back stimulator made it worse. I go for nerve-blocks - needles into the throat that numb the nerve roots, numbing out the entire area (I broke my right shoudler) and even THEN I get phantom pain.
I have pain in my arm, numbness in my hand (which doubles in size and turns purple), and horrible secondary pain in my jaw, neck and scapula from scar-tissue from non-use. I live near Milford, so I've been there; I've been to Europe, oh - you don't need to hear it from me - YOU understand!
As my symptoms get progressively worse over the years (with some GOOD days in between), I have found that a psychiatrist who deals with PTSD has been my saving grace. At least he gives me skills to COPE day-to-day. AND, if I can't make it in for our weekly meetings, he understands - and we talk on the phone!
Thank you for contacting me. I have been to all of the sites that you recommend (and others that no longer exist). I would like to go back through your archives, if that's OK.
I am SO grateful not to be alone in the blogosphere -- yet I wish that you were not sufferering at all.
THANK YOU for being in touch!
Rita
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I commend you for going so long with this. I had one nerve block done, the doctor used it as a diagnostic tool. I have come to a point in life where I am more accepting of this being my life. My family is wonderful and gives me great support. I would be lost without them. They are what helps me cope.
Please feel free to go through all my old posts. I have written some in my darkest times and my brightest days. I fight for me and I know that my blog shows that. I am hoping that by having my blog then someone else can learn to fight for themselves too.
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And I DO LOVE YOU. My children GREW UP with my pain. Grocery shopping? I haven't seen the inside of a supermarket in 8 years! EVERYTHING IS DELIVERED!
I SO want to tell you to get well, I do. But I don't lie. I've been through this a LOT longer than you have. It doesn't work that way.
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No it doesn't work that way, but wishing good thoughts and low pain days is not a bad thing either
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Hi, sorry, but I'm back. I noticed that you were "fighting social security." If you were employed when the accident occured, get to a psychiatrist and go out on a "MENTAL DISABILITY" like PTSD or "chronic stress depression" (there's another name for it). I was told, in '94, that SS would NOT cover RSD because it is "invisible." My pain specialist, who dealt ONLY with arms at Columbia Presbyterian, got me hooked - up with this PTSD Psychiatrist (it was right after the Gulf War, when the governement was taking PTSD seriously). I applied for SS once: they put me on for short-term 6 months. After the 6 months, I had to be re-examined, and I was immediatley put onto Long Term - as were my children. We could NOT have made it financially otherwise.
I've never heard of a person getting disability for RSD, but for chronic depression or PTSD, they should put you on immediately! Only psychiatrists can get patients on SS without a "physically obvious" diesase!
Good luck!
Rita
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Christine,
I got my 3 hours of sleep tonight, and was thinking about you. I've been through your resources - hell, I could have WRITTEN most of them at this point! You are providing a great service to RSD - and other "invisible pain" sufferers.
I was wondering if you had any luck with Social Security? It's wonderful that your family is so helpful, but those SS checks for myself and my children, were the difference between my husband having to get a second job - at a time when I needed him the most. He was going to be a grocery clerk at night in the deli counter if I was denied Social Security - and he has a PhD in mathematics! Though I have always hated "living on the dole," I had no choice. WE had no choice. I was also able to get a lifetime handicap pass, which made it possible for me to go to stores, without worrying about whether I could carry a bag of deodorant through a parking lot without falling, or taking an hour to get to my car!
I believe that I am going to blog about RSD today, as it had a HUGE impact on the events of this past weekend. I hope that if I am able to do so, that you will come by and leave your address in a comment. I'll see how I feel later, and whether I can blog today.
May today be better than yesterday.
Best,
Rita
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Hi,
I think your blog is terrific, and I would like to feature you on Wellsphere (http://www.wellsphere.com). Would you drop me an email?
Good health!
Geoff
--
Geoffrey W. Rutledge, MD, PhD
http://medblog.wellsphere.com
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Thank you for the compliment I really appreciate it. I have stopped by and signed up for www.WellSphere.com It looks to be a very informative and interactive site.
Thank you for stopping by.
Christine
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