nyt wrote: If you have ever seen pictures of individuals with swollen contracted limbs from RSD, it will break your heart.
OMG, nyt, YOUR story breaks my heart! You have been through so much. Why do you think your RSD developed? Do you think it was an immune response? Did it start in the pelvis and move down into the legs? This is what terrifies me.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
I know this is different from CRPS, but I have been told by several doctors I have central sensitization of the CNS. I know this is not Complex Regional Pain Syndrome, but I think some of the symptoms are similar. About 3 months after I couldn't sit I developed horrible pain in my feet/burning. Then it spread up to my shoulders/neck which bad muscle pain and knots in my muscles. I sometimes get headaches. I had burning in my hands for a while too (but higher levels of Nerurontin seemed to help this). I have muscle atrophy of my left gluet (the more painful side). Basically every muscle in my body hurts at times if I am not careful to keep the balance of not over doing things, yet doing something (I can't just lay around all the time or I hurt worse)! It's basically like my CNS became overstimulated due to the chronic pain. Doctors don't seem to know why this happens in some people and not in others. I guess some peoples' CNS is just predispositioned genetically to get CNS sesitization or maybe it's autoimmune and they just don't understand it yet. Maybe that's true for CRPS too. Because my widespread CNS pain started post PN pain I am hopeful that if my PN pain gets better so will all the other pain one day.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Thanks for this thread. I have had a variety of distant pain from PN. These "additional" symptoms are height when I have bad flares. When I had expressed these to my many specialists, the symptoms usually led to more tests with no conclusions and them to thinking I was a just a head case . When I finally made it to a pain management doctor (March 2011) he explained the sympathetic nervous system in more detail and wasn't suprised or alarmed by my pains, which made me feel much better. My primary pains were related to PN & were right side of the sacral sac, buttock pain, perineum burning, & obturator burning. Then, came heel pain in both feet, right shoulder pain and pins & needles in both arms & legs -- I thought I was going to die and wanted to at times. The most freigthening was numbness that was added in the right side of my face and chronic goosebumps. All the seams of clothing hurt all over my body. Normal "air" or movement of air made the goosebumps hurt. The more it woud go on, the more upset I became and for every specialist that said he/she couldn't see or find a physical lunderstanding...just created a hopeless life. I couldn't sleep as the meds they gave me to help with nerve pain created insomnia. In general, I am very sensitive to systemic treatment. My peace, from this weekly grind came with finding a PN specialist that has been able to take some of the tension off the pudendal canal. As the pain became more managed, so did the distant pains. Today, I still have sacral pain and my heels ache and I have a lot of myofascial pain but not all the other "distant" stuff mentioned above. It was terrifying and I hope my story helps others know that it can be temporary and is a sign your body is in despair.
Symptoms started 7/2010 following Cellulitis infection
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
. When I finally made it to a pain management doctor (March 2011) he explained the sympathetic nervous system in more detail and wasn't suprised or alarmed by my pains, which made me feel much better. My primary pains were related to PN & were right side of the sacral sac, buttock pain, perineum burning, & obturator burning. Then, came heel pain in both feet, right shoulder pain and pins & needles in both arms & legs -- I thought I was going to die and wanted to at times. The most freigthening was numbness that was added in the right side of my face and chronic goosebumps. All the seams of clothing hurt all over my body. Normal "air" or movement of air made the goosebumps hurt. The more it woud go on, the more upset I became and for every specialist that said he/she couldn't see or find a physical lunderstanding...just created a hopeless life. I couldn't sleep as the meds they gave me to help with nerve pain created insomnia. In general, I am very sensitive to systemic treatment. My peace, from this weekly grind came with finding a PN specialist that has been able to take some of the tension off the pudendal canal. As the pain became more managed, so did the distant pains. Today, I still have sacral pain and my heels ache and I have a lot of myofascial pain but not all the other "distant" stuff mentioned above. It was terrifying and I hope my story helps others know that it can be temporary and is a sign your body is in despair.