Dear DreaB
I was a rural mail carrier and was given much stuff i couldn't take and drive or even work. Made my doc mad but he also said if I was hungry enough I could work. I had to cut everything out of my life but work, because it took the rest of the time to recover.

I finally decided one day I couldn't do it anymore because it had spread to my right foot, ankle, and leg and my sense of time was so distorted. I thought I was moving at the same time as always, but I was slower than snot.

I've had 3 and am ready for my 4th block. The second was almost miraculous, the third a bit disappointing but I did get results. I have had to cut everything out and save up steps if I want to do something special. My husband does the groceries shopping, laundry, vacuuming, filling the bird feeders, most times the dishes. I'm trying to just take a shower, get clean clothes on, cook for myself and an evening meal and take care of the mounds of paperwork that comes with a car accident while working. Now I have SSDI, Retirement Disability, WC, 1, possibly 2 lawyers, dr appts, union rep trying(?) to help, HR person, Supervisor from work, Dr billing dept because WC isn't paying the bills, WC accepting my injury but not approving compensation, not working for 16 weeks and not getting any pay, etc., etc., etc.,.

Not a pretty picture when condensed down to black and white words, but I am able to make a life with my husband, and we like soup. My grandchildren are great entertainment, and netflix comes to the door and I can sit here and pick out my movies.

My life is 180 degrees different than it was before the accident but isn't bad. It is really wonderful as long as I stay within the new boundaries that have been set for me.

I don't know your personal situation, but incorporating chronic pain into your life is an ongoing, difficult thing. It changes the rules for everything. But the many on this forum are proof that it can be done, and that joy can be found. Just when you can see no light at the end of the tunnel, a right or a left turn appears and there is light again. I've even learned to stop talking constantly about my pain. I didn't want to before but I was so letting it controll my life, and me not living and having pain. The pain is a bitter pill, but filling your life with so much more beauty and joy will put it in perspective. When I've had a good day with one of my children or grandchildren or my husband, I remember the good parts, the fun we had. I don't remember the pain, don't have to, it followed me home. I'm still learning my limits and I exceed them at least once a week if I'm not careful. And somethings that are not physically difficult are mentally stressful and I've had to withdraw from that also.

Finding the balance. Everyday I ask the Lord to help me be the best me I can be that day. Whether I'm confined, or whether I'm up, I want to be the best I can be.

You have to find your own system. Takes work, no pill, disciplining your heart, soul and mind. Takes time too.

The wounds your Dr inflicted, maybe some of them, after the pain has eased, you can use to help you deal with this horrible thing that has taken up residence in your body.

with prayer and hope for the future,
GramE

DreaB,

Sorry to hear about your situation.

Confusing isn't it? Maddening? Absolutely. And awful darn painful!

I would recommend doing as much of your own research as you can. YOU are your best health care advocate. Especially with such a misunderstood condition as CRPS. Heck, about half of the doctors I talked to knew almost nothing about it.

Don't be afraid to seek many opinions. I think I saw close to a dozen professionals before I was comfortable with my diagnosis and treatment plan. And yes, CRPS can be misdiagnosed; not uncommon actually......

This is a slow process. As is dealing with chronic pain. But there are things that will help; you just need to find out what works for YOU! What works for one may or may not work for the other. Lots of experimentation necessary. And patience, even though that comes with difficulty when you are in pain. It took me about a year to sort this condition out and another year for me to fine-tune my medications and management routine. Today, my life is much better than it was the last two years........

As for the neurontin, as I mentioned, what works for one may or may not work for another. But it is widely used as the first drug to try for CRPS and neuropathic pain in general. It actually works quite well for me and is the "cornerstone" of my medications. Give it some time to work. But if it doesn't, don't be afraid to ask to try something else.

Remember, even though they are doctors and you are the patient, YOU need to drive the bus!

Good luck to you!