Dammit pain

Okay so a foot injury that happens to be the same leg with my rsd has set off my pain. It happened back in November. I got plantar fasciitis in both feet. But of course the right was worse than the left and now the pain is back.

I need to get myself out and about again. A bike ride today has set the whole thing off like a wildfire. That would explain the post at almost one in the morning, and I have to work in the am. :(

Online registration is now open for the TOP 5K/10K!

Online registration is now open for the TOP 5K/10K!

http://www.active.com/event_detail.cfm?event_id=1837091

We are very excited about the upcoming race on May 8th 2010!!! This is our 2nd Annual event and we are anticipating bigger and better!!! Last year 100% of our funds were sent to RSDSA, a national non-profit group dedicated to RSD Awareness and Research. Triumph Over Pain is now officially a non-profit organization and I wanted to share our mission!

Triumph Over Pain (TOP), a non-profit organization, will work to further education, to raise awareness, and to increase research on Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), by teaming with the medical professional community, the general public, and those affected by the disease to bring about awareness, understanding, and cooperation within these communities so that all may strive as one to find a cure.

Come out and join us for our 2nd Annual event. This year we have added a 10K. Both the 5K and 10K courses are USATF certified!!! In addition, we have added a Virtual Walker category for those who wish to participate but are unable to attend due to distance. Each Virtual Walker will receive a free race t-shirt!!!

There are also many sponsorship opportunities for your business. Please take a look at our website for more details.

http://www.triumphoverpain.org


We encourage you to contact us if you have other questions or concerns about the upcoming race in May. On behalf of the TOP Race Committee, we thank you in advance for your consideration in supporting our cause.

Alone we suffer, but together we will Triumph!

Cordially,

Tricia Scott
Triumph Over Pain
Executive Director
(214) 724-7572

Various sections from my website

Pain

Pain when I move
Pain when I don't
Pain when I stop
and Pain when I won't
my Pain you can't see
my Pain you can't feel
my Pain hurts me
my RSD is real

Christine Leiendecker

Copyright ©2007

 

X-ray's don't show anything broken. MRI's don't show any ligament damage. I have pain though, LOTS OF PAIN. Extreme in every way. This pain caused me to go from walking around like a healthy human being, to bedridden in almost 9 months.
If you have Reflex Sympathetic Dystrophy, aka Complex Regional Pain Syndrome, then you know the feeling, the thoughts, and the emotions that my website and blog have attempted to capture.

Here are a couple of excerpts from sites dedicated to providing information for people suffering, including families and friends of those afflicted:

www.RSDS.org - The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) is a national not-for-profit organization, headquartered in Milford, Connecticut, that promotes greater public and professional awareness of CRPS, a painful neurological syndrome that may affect more than 1.5 million Americans.

We also fund research fellowships and evidence reports on CRPS. We educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers, on the disabling pain it causes. We encourage individuals with CRPS to offer each other emotional support within affiliate groups. And finally, we are committed to raising funds for research into the cause and cure of CRPS.

www.RSDHope.org - The American RSDHope Organization is a non-profit organization dedicated to increasing awareness of RSDS/CRPS. Excellent informational website for those dealing with Reflex Sympathetic Dystrophy / Complex Regional Pain Syndrome. Includes description of RSD/CRPS, Signs, Symptoms, Etiology, Treatments, Facts, Latest Medical Articles, Coping with Pain Articles, RSD videos, Brochures, information on Ketamine Treatment, Physical Therapy, and Support Groups, etc., as well as raises funds for RSD Research . Over 1.1 Million Hits in 2007!

YOU ARE NOT ALONE - PLEASE DON'T SUFFER ALONE

Me and My Treatment

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.

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. 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

July 2008 - November 2008 - Various Acupuncture treatments and Chiropractic treatments.
November 2008 - June 2009 - Got a new pain management doctor and was given a prostate/blood pressure medicine that thoroughly messed with my heart beat. I thought it was going to stop on me. I also now know what people with Restless Leg Syndrome feel like, sorry. He wanted to give me a new medicine, another blood pressure med that could very well mess with my heart and head again, I said no thanks.
Somewhere in all this I started using Medical Marijuana (MMJ) to help me get off all the pills that I was on. It wasn't until my last experience with a non-narcotic medication that I realized that I didn't want to be on any medications anymore. No more vicodin, no more muscle relaxers, no more nothings. Instead I used MMJ.
June 2009 - I started meeting with a hypnotherapist and a Doctor who does High Power Laser Therapy. Between the 2 treatments I have gotten my life back. I started with them the second week of June. About a week after starting with them I started noticing positive things happening. Pain free wasn't right away, but it started showing through. I could get up and do something that was difficult before. I was sleeping better, which we all know helps the body heal and energize itself.
http://www.doctorbarold.com/avicenna.aspx

http://hypnoworks.com

http://www.psychologymatters.org/hypnosis_pain.html
July 2009 - My goal for July is to contact Social Security and get back to work.
I want to live again. I am starting slow and getting back into life.

I hope and pray that you can take from my experience and use it to your benefit.

Conditions that have responded to Laser Therapy

Conditions that have responded to Laser Therapy
Partial List of Conditions that have Responded to Laser Therapy (given to me by Dr. Barold at his seminar)

Arthritis
Osteoarthritis
Rheumatoid Arthritis
Neck/Back Injuries
Whiplash
Low Back Pain
Herniated Lumbar Disc
Sciatica
Neck Pain
Herniated Cervical Disc
Shoulder Pain
Rotator Cuff Injuries/Tears
Headaches
Carpal Tunnel Syndrome
Knee Pain
Injuries of the Knee Ligaments/Meniscus
TMJ Dysfunction
Repetitive Motion Injuries of the Hand
Hip Bursitis
Patello-femoral Syndrome
Tendonitis (Biceps, Achilles, Elbow, etc)
Tennis/Golfer's Elbow
Plantar Fasciitis
Ankle Sprain
Chronic Non-Healing Wounds
Peripheral Neuropathy
Ankle Sprain
Diabetic Ulcers
Burns
Pinched Nerves
Diabetic Neuropathy
Fibromyalgia
Trigeminal Neuralgia
Muscle Strains/Sprains
Hamstring Pull
Myofascial Trigger Points
Shin Splints
Morton's Neuroma
Stress Fractures
Bunion Pain
Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome

2009 – August

08/21/09 – Conditions that respond to Laser Therapy

Partial List of Conditions that have Responded to Laser Therapy (given to me by Dr. Barold at his seminar)
Arthritis
Osteoarthritis
Rheumatoid Arthritis
Neck/Back Injuries
Whiplash
Low Back Pain
Herniated Lumbar Disc
Sciatica
Neck Pain
Herniated Cervical Disc
Shoulder Pain
Rotator Cuff Injuries/Tears
Headaches
Carpal Tunnel Syndrome
Knee Pain
Injuries of the Knee Ligaments/Meniscus
TMJ Dysfunction
Repetitive Motion Injuries of the Hand
Hip Bursitis
Patello-femoral Syndrome
Tendonitis (Biceps, Achilles, Elbow, etc)
Tennis/Golfer's Elbow
Plantar Fasciitis
Ankle Sprain
Chronic Non-Healing Wounds
Peripheral Neuropathy
Ankle Sprain
Diabetic Ulcers
Burns
Pinched Nerves
Diabetic Neuropathy
Fibromyalgia
Trigeminal Neuralgia
Muscle Strains/Sprains
Hamstring Pull
Myofascial Trigger Points
Shin Splints
Morton's Neuroma
Stress Fractures
Bunion Pain
Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome

Pain Free...

I have been receiving 2 new treatments for the last 3 weeks and have seen a great benefit from them.

The 2 treatments I have received are High Power Laser Therapy and Hypnotherapy.

High Power Laser Therapy (HPLT): This is a class IV laser that will go into your body up to 7 layers deep. It goes into your cells energizing them and getting them to heal themselves.

First, the laser, which on high gets warm but not hot, is placed above my main blood vessel for my right lower extremity (right leg) to get the blood flowing again. Which in turn makes my leg warmer.

Second, the laser is ran up and down on the nerves in my leg to get them to energize and open up and not constrict anymore as is the case with RSD/CRPS. Then the laser is ran directly over my initial injury site, my knee, to help energize the cells there to heal damage that has been done as a result of the injury and the result of the RSD/CRPS. Lastly, the laser is placed upon my stomach which reaches through to my back to energize the sympathetic nervous system.

My doctor is Dr. Barold. He has been trained to use the laser on patients with RSD/CRPS. His website is http://www.doctorbarold.com/avicenna.aspx


Hypnotherapy: This is where I am most worried about my readers being offended and confused. This does not mean that RSD/CRPS is in our head. Please continue to read.

I will tell how my CD plays: My hypnotherapist and I came up with a vision of how I see my RSD working through my body and my brain. I came up with a spot in my brain where the "fire alarm was going off, even though there wasn't any smoke/fire" and a suggestion was placed in my head to have little men go and fix the broken alarm system.

Then we talked about how it felt when the pain inmy leg was bad. The way I describe it to her was like on a heartmonitor when the heart beats there is a beep and the little line shootsup to show the heartbeat, well that is how I see my pain acting. Whenit starts it's small lines with time in between them. When the paingets bad the monitor shows many jumps in extreme intensity. The suggestion placed was that the group of little men then went to my legto flatline the nerve that was jumping.

The last suggestion placed wasfor my brain to again act and think like it did before my accident.

The chemistry in my brain changed after that day and she is helping me get it back to straight again.

Here is a site found online to help explain hypnotherapy and pain:
http://www.psychologymatters.org/hypnosis_pain.html

I realize that there will be many people who balk at this form oftreatment because it implies that our problems are mental related; butthat is not the case. Obviously our bodies have been reprogrammed withthis new set of pain facts and maybe some of us can benefit from beingreset.

Here is the example I gave to a friend, Jason with USARSD.org: USA: ... doesn't the premise of hypno...suggest its in the mind? ME: Ina way it is. Cause if nothing is wrong with your limb then where is it being manifested. This is another reason i am afraid to mention it
I have always told people that my nerves turned on and never turned back off well what controls the aspect of pain
Its definitely diff than saying you are mental its more like saying that your brain controls all functions in your body so why not teach it to control differently


I am hopefulthat studies can be done to see if these forms of treatment are beneficial to us sufferers. We have definitely tried everything else under the sun.

Please email, comment, anything to let me know what you think. I am curious if other people have tried this. Is this something you would try?

2009 – May

05/02/09 – Sex and RSD

How can an act that feels so good, Cause a flare that feels so bad?
How do you handle it? Have you given up the act all together? I refuse. I
have given up so much for this pain (hiking, tent camping, etc) I cannot
give up something that deepens our connection to each other.
Let's just say that last night the pain started, no sleep, and has continued
into today. Hopefully the flare won't last too long.

05/10/09 – Followup on caregiver sites

I recently received a comment from Tigerlily about her Caregiver website.
She too was on the lookout for sites relating to caregiving and was not able
to find what she needed. So she started her own.
Here is her website information:
http://caregiverscove.org
As always I only pass this information on because I feel it's important to.
You must choose for yourself if the information you find is relevant to your needs. I can only pray that you find what you need on the various sites that I have given.