Replies to 'Living with Chronic Pain'

Hi Mel,  

I know what you are going through with your RSD, your depression and your son. I to have RSD in my left hand which gets me upset because it causes my fingers to flatten, my nails to fall off, and just causes me to be embarassed all of the time. I was hurt at 29 and now I'm 38. My son is now 14 and still has a hard time dealing with my condition. There are times that my pain is sooooo bad that I can't even bet moving but when it comes to him, the pain has to take a back seat. I will be in the worst pain but my son and his events comes first. I have gone for pain management but they are only like a bandage, temporary. We have to learn to fine what helps us the best, sometimes on our own.I have a small sponge ball that I use to keep the blood flow moving for my hand, maybe there is something simpleout there that can help. I get bad in the Winter months because of the depression and the entire ordeal. They do have meds for BiPolar if you would like to try them or get the special uv lamp that helps so that your body doesn't lake the light that causes BiPolar. Check with your doctor and see what he/she offers for help. If you would like to talk more about this condition, or just want to talk in general, please email me. Best of wishes and my thoughts with prayers go out to you. 

Hi Mel,

I'm new to the boards and was scanning through messages and your message was the first I've seen with my primary diagnosis, CRPS or RSD (Complex Regional Pain Syndrome or RSD.)  Like you stated in your message very few people know anything about this disorder.  Very few even KNOW about this disorder, I was one of those until I was diagnosed.  Now I know quite a lot.  I wouldn't call myself an expert as things change daily as does my disorder, but I seem to know more than most of the "doctors" who attempt to treat me.

I've had CRPS for 5.5 years.  Started in my right foot after I broke it and was misdiagnosed for almost 3 months.  I should've been in surgery within 24 hours but by the time I'd finally convinced the "doctor" that my injury was much more than "a bad sprain that always hurt worse than a simple brake," my foot which was completely black and looked like it belonged on a dead persons body" was now 2.5 months post injury and 1.5 months post the latest date they could do surgery.  The foot specialist took one look at me and said "I know exactly what you have and it's one of the worst foot injuries you can have.  If you were an athlete you'd just ended your career.  She didn't need x-rays to know damage but she did them to have the proof.  The original x-rays done by my 'doctor" were all the wrong views, plus she'd sent me home with no wrapping or boot to support my injured foot.  She simply sent me home and I'd been walking on the injury for 2.5 months, not good.  The official injury is called a Les Franc Fracture with damage to all the tendons, muscles, ligaments in my foot.  I  destroyed my foot.  Since then the disease has spread to up to just above my knee in both legs, it's in both my hands up to my elbows, as well I have symptoms on the front of my face and on top of my head.

My husband doesn't believe in any of my conditions, he thinks I'm making them up to get out of housework.  I've lost my future career, as I've been unable to complete my college and my job.  More crushing to me was when I refused to get a Spinal Cord Stimulator, a major surgery (which is a last resort for CRPS people as surgery makes the condition worse and spread faster) my husband decided that meant I was a drug addict and forged forward with his personal attack on me emotionally, mentally  and before demanding a divorce, in which we are now embattled, he did the ultimate betrayl and got involved with another woman he works with.  Currently he plays "family" with this woman and our 3 children.  Unfortunately, because I've refused to play by his rules and due to false allegations, lies and the running of a dirty nasty ugly divorce I've been made homeless, lost custody of my children (which no one can believe) still have no maintenance to liive on and despit being the primary parent to my children for 16 years I was told I was the danger to them.  The parenting therapist is on my side is beside himself.  No one can understand what is going on.  The prejudice against chronic pain patients in the court system here in Washington State, at least here in Snohomish county is unbelievable.

Anyway, I understand your frustration and your pain.  Gentle Hugs to you!  Karen