Saturday, March 08, 2008

Avoid the vicious cycle of "over doing" and "paying for it later".

Sufferers of crps have this unique symptom of not only having an altered perception of the affected limb but also physically protecting the limb and therefore developing physical problems due to lack of use or altered use. The brain is the problem here as it is telling us clearly by pain that something is wrong when usually nothing is wrong. Other chronic pain sufferers also develop this altered perception of the affected limb. I think we are given the message by professionals too, that we need pain relief in order to do physical therapy when the more urgent need is move and move bilaterally all the time to maintain condition. We can retrain the brain by moving in a normal way, being mindful of how we move. The more we move normally the more we reinforce the "OK" message. Where we have to be careful is to do it in small steps and often, instead of overdoing it and "paying for it". We get into a vicious cycle of too much and too little. No one said this was going to be easy.

4 comments:

kinzkid said...

Jessica: Thanks for your post. I was just diagnosed with RSD/CRPS and received a lumbar sympathetic block and it was a miracle. Right after I could feel my toes and move my foot. I started immediate aggressive PT and am now using stairs (not every other yet) and am trying to walk normally (after 4 weeks of inactivity). I cannot imagine how anyone could withstand such severe pain. I was mad at my various drs. for not considering any other options other than suck it up. Everyone needs to demand doctors time and keep going if your body hurts beyond what is expected for an injury. The best description is a knife stabbing you all day. Now my question is how much is too much. Should you try and bend even when the tingling starts and shooting pain. Will it subside more quickly with more stimulation? Has anyone done aggressive PT and found positive results? How much do you push yourself? Also if the first block is so successful should you push for another immediate block or is it better to wait and try and resolve the remaining symptoms with therapy. Will see and ask dr these questions as well but know they are busy with scheduling and just wondering how pushy I need to be to advocate for myself. Any bloggers out there with positive results who can share? Thanks and good luck to all.

jeisea said...

Hi Kinzkid
Great to hear your block worked. I had a Phentolamine Infusion seveal years ago, before I couldn't tolerate meds. It worked like a miracle and I'd forgotten what it felt like to be normal.I suggest that you need to be aware that what ever you do with physical therapy do bi-laterally (means what you do to one side you do also to the other). You need to retrain the brain that movements are normal by also being mindful of posture and normal movements. We tend to protect and not move the painful part normally. I'm going to repost a video of a young lady in the UK. She had fairly agressive physical therapy which worked for her. I don't know if you know the UK News group, World Health News. It's owned by Tony Tobin whose grand daughter has RSD. Aqua therapy has put her into remission. Tony was interviewed by How to Cope with Pain website. Here's the link
http://www.howtocopewithpain.org/blog/93/how-pain-affects-families-a-grandfathers-story/
How Pain Affects Families: A Grandfather’s Story | How To Cope With Pain Blog
For more on physical therapy click on the "tag" - "physical therapy" to the left of this blog. This will bring up my other posts on this topic. If you have a chance I suggest you take a look at some of my other links. Eating well and looking after yourself will give you a sense of control over what for all of us is a very difficult situation.
Take care and feel free to ask if I can help you further.
jeisea

kinzkid said...

Jeisea:Thanks so much for the reply, resources and links. I already checked out your links and watched the video. You can see the importance of using both sides of the body in that video. I told my doctor about it and he said don't start doing some of those exercises yet but he also told me he trained at that hospital in Philadelphia and that made me feel very good. In the meantime, I will begin to educate myself more with additional links and sites. I am
definitely favoring one side and need to work that out. I have a spinal block tomorrow and am looking forward to it, as bizarre as that may sound!! Take care and tahnks again. Lisa

jeisea said...

Hi Lisa
Hope this block works. I knew nothing before I started searching the internet. When I couldn't understand or needed to know more I asked on websites and found people very helpful. I hope this block works for you. Let me know if I can help you further.
jeisea

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