Before my wrist surgery, I had a chat with the anesthesiologist. I thought what he said was really clever. He said that when the brain goes haywire and won’t turn off, it’s a seizure. That’s basically the same as what is happening to the nerves in my ankle, so the way he thinks of CRPS is that my ankle is having a seizure. Makes those anti-convulsant medications I’m taking make a lot more sense!
Attempting Perfection 
You have a lot of useful information about CRPS; It is good that you are spending the time to share it.
Thanks
Thanks! I’m so glad you’re reading my blog. I just hope it can save some other people some time or avoidable pain.
Thanks Jessica…I can understand this in many ways… have been treated with anti seizure meds for over 15 years … for the chronic pain I suffer. I also own both of Janet Travell’s Red texts on myofascial pain which was my label for many years and self-treat 24/7 for the trigger points. Wasn’t till last week though, that I received the dx of Congentital Hip Dysplasia which means I am unstable in the ball/socket of my hip joint/pelvis. Now I’m wondering how much of my other pain (including feet/leg /spine/lats/ shoulders etc. etc.) was my body’s way of trying to stabilize and compensate for the unstable base/pelvis. It is interesting that my sisters dog has hip dysplasia, and whenever she dislocates her hip — she has a SEIZURE! Something to consider – the body and our nervous system is so complex. Very glad to have found you. I will be keeping you in thought and heart for healing and peace always ~ Robyn Lee
Robyn, hips are so hugely important on our bodies’ stability that I bet a lot of your other pain is related. After my injury, when my right leg atrophied, my whole body felt the effects as the imbalance of strength and work tugged at my spine and other muscles back and forth across the spine stepped in to compensate! That’s why a lot of my yoga is focussed on relaxing those muscles and building more balanced strength. Can your hip dysplasia be compensated for with bracing or extra muscular PT, or what are your options?
That’s amazing about the dog’s hips causing seizures! It kind of makes sense that such a shock to the nerves of the hip could overload the brain though.
Lots of healing to you and your sister’s dog too! Very grateful to have connected with you!
Thank you so much Jessica. I agree – the hips/pelvis are the base for everything above and below… I’m sure I hurt my spine by trying to compensate for hip disease I was unaware of. My issues started at 30 after having my second child (think giant belly on petite me)… Now I’m also dealing with having undergone a spinal fusion (L5S1) so I’m sure imbalances from hypertonic paraspinal muscles too (always rocks) ..
I so wish there was a way to rehab myself out of this.. but I’m not very hopeful after seeing that the front of my femoral head is completely uncovered. I’ve done a whole lot of pt — and love yoga –but just seem to bet getting progressively worse since having had hip surgeries 2 years ago to alleviate what they said was impingement of bone 😦 Always open though — I live in that state of full body trigger points – have them all committed to memory and know the referral pattern cold. Lately the Quadratus Lumborum are the forerunners!!
So grateful for your healing wishes… and I send same back to you … I am sure I have some level of CRPS too (one expert dxed it – and we spoke about Ketamine infusion – have you ever considered that to reboot nervous system?)
Love and Light ~ so wonderful to know you ! x R
Yikes, I’m so sorry–I really hope the doctors come up with a way to help your body mechanics–if hips can be replaced there’s got to be something they can do for you, I would hope. Fortunately that part of the body seems to be pretty well-understood. I have a yoga therapist (trained through Integrative Yoga Therapy, you can google them) who works with me to help my specific problems. I wonder if something personalized like that might be able to teach you exercises for the paraspinals that won’t put any extra stress on your hips. Your body in particular sounds like it has some extremely personalized problems that general yoga classes would not likely help with much!
I actually have brought up the ketamine therapy to my doctors here and not a one of them has heard of it. Which I find astounding, considering the ketamine coma therapy was featured on House MD which means that anyone who watched that season of the show is more up to speed on current CRPS treatments than the medical community of Guam. (We really are sort of a backwater here as far as medicine goes.) But I’m hoping to move somewhere with a more modern approach, like the mainland, in the not-too-distant future, and then I’ll be able to explore that treatment option. When it works it’s pretty dramatic, but it isn’t the cure-all that its reputation seems to advertise. For some people it works for only weeks, some not at all, and some it’s a very small improvement instead of a real reset. And it’s a pretty miserable process from what I hear. However, it could be worth a shot, as I could be one of the lucky ones who get months or years of remission out of one set of infusions. Right now I’m just so happy that my new meds are working well enough to start working on building my strength again!!
Best healing wishes to you!
I have heard the same about the Ketamine… not a perfect answer and risks 😦 I wish I could find a yoga instructor to do private customized sessions …. will research Integrative Therapy. Thanks! You just keep healing and benefiting from the more holistic treatments. I’ve been through 20 years of the med cocktails – intolerant of all narcotics but did the Lyrica/Neruontin stuff forever… taking a break right now… my pain has a definitely mechanical component… and the meds can’t aid me there unfortunately… Will be i touch – and keep you in my heart ~ Healing and Love, Robyn
Hi Robyn and Jessica.. Thought I’d chime in re the yoga therapy…. Also pays to look for a teacher from the Krishnamacharya liniage too. My teacher in NZ is doing a 4 year yoga therapy teachers training course via them and it’s all about personalisation and healing/working with what you’ve got. Brilliant.
http://www.kym.org/ is the website of the institute in India.
The key thing to finding a teacher is trying a few out and going with someone you trust. Listen to your body and see how your body reacts to the practice.
Good luck out there!
Hmm… I really like what he said, thanks for sharing. My doctors say my nervous system is in overdrive… I’ve been saying it has a hissy fit. Either way, the onset to my episodes of acute chronic pain are almost always a quick onset (not unlike a seizure).
I’ve been taking the anti-seizure meds for a couple of weeks and while they make me feel like crap, they’ve made a huge difference to pain levels, circulation and discolourisation. I’m hoping the side effects will continue to reduce in the next couple of weeks. 🙂
Have you been advised to take your meds long term? Or when your symptoms settle are you able to stop taking them?
Oops… My WordPress account goes to my travel blog. Here is a link to my hip/chronic pain blog: http://healinghips.wordpress.com/
My big pain flares often feel like a wave breaking–it builds and builds and at some point it gets to where there’s no turning back and the full-body pain gets set off, like a sneeze or [that other thing that works like a sneeze] or that same kind of nerve response. Given that there are dogs that can sense the onset of a seizure before their humans can, it’s probably very similar. I’ve found if I can take the breakthrough pain meds before it goes past the point of no return, I can sometimes head off the flare before it truly happens.
Most of my meds are for as long as I have active CRPS. If I were to become one of those lottery winners who have spontaneous remission, I’d be able to stop, but otherwise I expect to be on them forever. Although I am tapering off of my slow-release morphine right now because my Lyrica is working so well I don’t think I need the morphine anymore (I don’t think it’s doing all that much anyway since my body is so used to it by now.). One of my meds, the Cymbalta, causes severe withdrawal for several years after it is stopped. But I decided to go with it because it helps the pain enough to make it worth it.
The seizure drugs like gabapentin or Lyrica are so heavy-duty that you can’t just stop them, you have to taper down (every 3 days with the gabapentin) or else you risk getting seizures from stopping them, even if you never had seizures before. The goal is to find a dosage that is high enough to help your pain but low enough the side effects aren’t too bad. For me, switching to Lyrica from gabapentin reduced the side effects and increased the pain help. For others, it could be the opposite–it gets very personal. However, the amazing lady who taught me trigger point therapy did wean herself off of all her previous maintenance meds, and was able to control her pain with trigger point work and NSAIDS like Advil. I think she is an exceptional case, though.
I’m also taking a ton of supplements–the stress of chronic pain depletes certain hormones, vitamins, and amino acids. Adding a lot of that stuff back in has made a big difference for me too, and even though it’s expensive I’m happy to pay for them because I really believe they work. Some time soon I’ll make a list of all the supplements I take and why =-)
I am a follower on healinghips and also enjoyed getting to read about some of your travels. We have a lot in common, Julia!
Holy crap we live in a drug/pain filled complicated world! I’m so glad to have met you and the others floating around in cyber space with similar health issues.
Thank you so much for your support and advice, it’s nice not to learn everything the hard way. Which seems to be how I’ve been operating for the last few years!!!
I know, everything we can learn from each other is one less thing we have to learn the hard way. Thank goodness we live in the internet age, as CRPS is rare enough that it would be unlikely we’d run across more than one other person with the same condition in our lives without the help of the internet!
I’m checking out your yoga therapist’s website right now. I love IYT but always like to learn more. Four years, though! I just don’t understand how people can afford those lengthy trainings. Although when money is needed, sometimes amazing things happen and people get gifts from other amazing people and it comes together. I’ve seen it happen. And if I’m ever going to get to train as a yoga therapist it will have to be funded interstingly. =-)
A website I found really useful when I started the gabapentin and Cymbalta was crazymeds.us, which is a helpful site and also very entertaining–people don’t take themselves too seriously and it sure helped me relax about some of the wackier effects of my pills and CRPS itself.
This certainly makes logical sense on so many levels. I was baffled as to why and how I was a recipient of a frozen shoulder and how it had to be worked though. Also why stress can cause reactions in so many parts of the body in trying to heal itself. Great info! Thanks for sharing…………
You know, the guy that wrote one of my trigger point books got into the whole thing because he was a piano tuner that got a frozen shoulder. He wrote another trigger point book that was more focussed on frozen shoulders that you should really buy a copy of:
It is amazing how the parts of the body all have so much influence over each other. The yoga helps with this a lot–it uses this interconnectedness to get good stretches and build strength. I think that is one of the reasons it works so well for people having pain.
I’ll have to check this out. For some reason I didn’t get a notice that you replied. Thanks!
To get notifications of a response to a comment, you have to check the little button below your reply “Notify me of follow-up comments via email.” It is a downside of wordpress, though, because you either get notice of every comment on a post, or none. Other systems let you subscribe to just one thread, but I like wordpress other than that =-)
Thank you!