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A Posting Between RSD Friends on Live Journal: jesdenm’s Story and Update

Posted Nov 30 2008 12:21pm

From:thematrix777 - LJ Comment (
Sent:Thu 9/11/08 5:58 PM
You replied to a LiveJournal post in which Afflicted with RSD/CRPS ( jesdenm ) said:

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 newdoctor 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

Your reply was: Subject: Your updateGreat post. I didn’t realize all of this happened in only 1 1/2 yrs. You got on treatments so fast I am surprised you didn’t go into remission.

But, as we all know, everyone is different. I got treatment fast too, it just happened to be the Wrong treatment and it damaged me worse! I got the infamous “hot/cold challenge” which made mine spread like a wildfire. Then they did the old “No pain, No gain” on me…. I was in so much pain and so out of it mentally I didn’t stop them.

Now I’m getting my first wheelchair. My arms/hands are useless. Oh, well, live and learn! That’s why I blog… a warning to others.

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