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Posted 9/11/2013 12:29 AM (GMT 0)
Hi

I am new here and wanted to join a group with other people who under stand.

Heres a little bit about myself.   I am 38 and have Complex Regional Pain Syndrome and Gout.  I also have Cerebral Palsy.

I first got diagnosed in 1997 in both legs after I fell awkwardly, but a couple of months later they said I didn't have it.  Left me confused because I was still in severe pain.  Two years ago I fell out of bed and badly broke my hand in 4 places.  Went through 4 casts in a week because they couldn't put one on properly.  Then I got diagnosed with CRPS again.  I have now got it in both legs, right arm and neck.  This has stopped me dead in my tracks.  I was in my final year of uni when I broke my hand.  I was doing a teacher training degree.  I managed to finish my degree,  do know how as I was on morphine for the most part of it.  The pain was horrendous.  Tho now I am on the sick because I am in too much pain.  I don't want to be on the sick and want to get a job.

I was referred to one of the top specialist in the UK.  Dr Andreas Goebel who works at The Walton Centre near Liverpool.  He is talking about putting me forward for two Spinal Cord Stimulators.  One in lower back and one for the neck.  I was wondering if anyone else has been fitted with one.  I am currently taking Gabapentin, paracetamol, celecoxib and use a Buprenorphine patch.

This has really been hard for me. before breaking my hand I could walk around with crutches a little bit.  Now I am reliant on a motorised wheelchair which the hospital gave me.  I have been feeling really low and fed up with the whole situation.

Posted 9/11/2013 1:06 AM (GMT 0)
Welcome..

Have found being here 'with' others who feel pain - chronic, ongoing pain - an honest sanity saver..

This is a safe place to be - for me it was first because family gives me a hard time about finding some pain relief using meds.. but I have found so much info too.

Again, glad you are here
Posted 9/11/2013 3:37 AM (GMT 0)
Teghan,

Just wanted to stop and welcome you to the CP forum of HealingWell. Glad you found your way here.

I'm off to bed after a LONG day - so I'll write more tomorrow.... but at least wanted to welcome you.... and hope to get to know you better.

Take care, Tina
Posted 9/11/2013 6:02 AM (GMT 0)
Teghan Welcome to Healing Well Chronic Pain Forum. I am sorry to hear all that you have been through, but I am glad you found this forum, your no longer alone with your pain or your or your CRPS, we have several folks with this condition on this forum, and I am sure they will be by and Welcome you and say hello, and give what advice that they may. We have some very caring and compassionate people on this forum, and we are all willing to lend you our ears and listen to you, and give what advice that we may have, but always give you our support! I think you will find this is a great place to come and vent your frustrations about your pain and condition, folks here understand those feelings, and can definitely empathize with them!

Again I Welcome YOU, and do hope that you stick around and become an active member of our Chronic Pain family!

White Beard
Posted 9/11/2013 11:12 AM (GMT 0)
Just wanted to stop in and welcome you to the forum. If support and understanding is what your seeking then you're in the right place!

We have lots of information on SCS and if you use the forum search you will be able to read all past threads concerning the subject.

We also have members who have SCS and I'm sure they will be stopping in to say hi.

Welcome and hope you will stick around.
Posted 9/12/2013 1:54 PM (GMT 0)
Hi Teghan, and welcome.

I've had CRPS since twisting my knee while hiking in 1999, but it took me until 2005 to get a diagnosis. I have one SCS implanted to cover my legs. It doesn't help much with the deep burning or bony pain, but for me it has reduced my sensitivity issues greatly... I struggled badly with clothing, shoes, socks, breezes and that has changed a lot. I've also had a lot of problems with lead migration and very poor healing from surgery that makes me unwilling to try the same for my upper body.

I think at least you are in very good hands with Andreas Goebel... I've read a lot about him because of his trials with IVIG for CRPS. He was even good enough to email with me and my specialist when we were seeing if that might be an option for me.

Have you tried other medications or med combinations at this point? I'm thinking Lyrica, Cymbalta, Topamax. Are there other options to explore before you look at the SCS? Has it also been explained to you that even if the stim implant is 'successful', you may still need some meds to keep your pain manageable?

I also wonder if you are doing any physiotherapy? I know it can be very difficult with high pain levels, but it's crucial for CRPS that you stay moving, and keep your movements as normal as possible.

If you've got any specific questions, please feel free to ask :-)
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