Another new crpsie

BioBased · 06-20-2015, 08:49 AM

Littlepaw,

Reading that you now walk a mile every day after so many surgeries gives me hope.

I am just so tired and warn out. It is difficult to explain to people that stepping on a tiny crumb not only feels like a huge nail, but it can throw my balance off to the point that I could topple. The name change from RSD to CRPS hasn't helped either. Everyone thinks a doctor must have given me some magic pain pill that will solve this, if only!

I want my husband to film me taking a shower ( in a bathing suit of course

) or transitioning from the stairs to the landing and then dragging myself into a room to use furniture to maneuver myself into a standing position. I could post it FB, but while it old be a good visual, it would never show what it takes out of me. I am tired of being tired.

Quote:

Originally Posted by Littlepaw

Welcome Biobased,

I am sorry you had to come and find us but you will find good support and companionship here. I think many of us have been through the wringer as far as getting a diagnosis. It is a common problem. Finding good care can be a challenge. The RSDS website lists some doctors and members of a local support group if there is one, may have suggestions. Some of us see neurologists, some see Physcial Medicine and Rehabilitation. Those specialties may have something to add in addition or in place of pain management. I asked about rheumatology myself and was told they didn't treat it at the practice I was interested in. Get the best care that you can, with someone who has treated this and understands it, even if you have to travel.
Dr. Pradeep Chopra has a great video "CRPS Diagnosis and Management" on YouTube. Sorry I can't post links today. It has loads of great, non-invasive info and is non-doomsday. Should come right up.

There is hope. 80% of people have improvement over time according to Dr. Stanton-Hickes at Cleveland Clinic. He is one of the big CRPS specialists. Taking good care of yourself, decreasing stress, managing and treating remaining pain contributors or injuries and consistent, gentle range of motion and exercise will bring good progress. Using the limb is vital for healing, circulation and maintaining strength. Get in the pool and swim, ride a stationary bike. Do yoga or Pilates. Do everything you can without causing pain flare. Pushing too hard can set you back. It takes patience and persistence but you WILL improve. I spent months on crutches, a walker and a cane after multiple foot surgeries. I now walk a mile and sometimes more every day. Come here when you need to ask questions, vent or get a virtual hug. You are not alone.

Sending Healing Love, Littlepaw

Russell · 06-20-2015, 01:15 PM

Quote:

Originally Posted by BioBased

Littlepaw,

Reading that you now walk a mile every day after so many surgeries gives me hope.

I am just so tired and warn out. It is difficult to explain to people that stepping on a tiny crumb not only feels like a huge nail, but it can throw my balance off to the point that I could topple. The name change from RSD to CRPS hasn't helped either. Everyone thinks a doctor must have given me some magic pain pill that will solve this, if only!

I want my husband to film me taking a shower ( in a bathing suit of course

) or transitioning from the stairs to the landing and then dragging myself into a room to use furniture to maneuver myself into a standing position. I could post it FB, but while it old be a good visual, it would never show what it takes out of me. I am tired of being tired.

Hey Bio,
I want to let you know you're not alone with that. My wife has a pic of me sitting outside on a day of 91 deg wrapped in a winter coat shivering from being so cold. I even find comfort sitting for hours in my neighbors sweat lodge that he built.
This year my battle seems to be heat flashes were my body will just heat up inside and my physical control gets really bad. Although I feel really hot and sweating like a pig my original CRPS area is cold to the touch and I get so tired.
This monster sucks!!!
Be well..

Littlepaw · 06-20-2015, 07:47 PM

Pain will wear you right out! Having everyday tasks take five times the effort will wear you out! You are using muscles you didn't know you had to compensate. Sometimes it is just so ridiculous as to be comical; wearing pant seats out, hoisting onto bathroom fixtures.

When I was wiped out from dragging, hoisting, crutching, was when the pool became my favorite place. All that pesky gravity melted away.

It does get better but It takes time. Hang in there and forgive yourself for the things you can't do right now. Recovery comes in stages. I hit two miles today for the first time!

I am kind of in shock that I did it. That is a record. It took a year that started with a few steps, then a walk down the driveway, to the mailbox, etc. That first mile came super slow, but it came.

Keep up the good work! Because yes, under these circumstances taking a shower is work!

BioBased · 06-22-2015, 06:50 AM

Littlepaw,

Congratulations! Two miles, that is wonderful.

LOL, I forced myself to walk, on crutches of course, around a small Trader Joe's after my endocrinology appointment the other day. It seemed like a huge achievement, even though I couldn't push a carriage and I was dressed in double thick fleece.

It is hard for me to believe that in less than a year I went from being a person who could in a flash get up and down from a squat without holding on -to this uncoordinated, slow, grimacing and groaning hot mess. For several months I literally did not have the energy to brush my hair. I stopped wearing make-up, jewelry or carrying a purse. And my clothes-pathetic! I cannot risk wearing zippered pants.

The podiatrist put me in very heavy, built up sneakers with inserts and lifts. I hate them, because I cannot feel the floor and the weight is too much for my CRPS leg. He told me never to walk barefoot, but I am not heeding this advice, because I think it is wrong.

I have a pain specialist meeting this week, but after reading the negative reviews about this doctor I am concerned. I don't know if it is a good idea, but I am going to bring a list of recommended meds from one of the RSD specialists.

Quote:

Originally Posted by Littlepaw

Pain will wear you right out! Having everyday tasks take five times the effort will wear you out! You are using muscles you didn't know you had to compensate. Sometimes it is just so ridiculous as to be comical; wearing pant seats out, hoisting onto bathroom fixtures.

When I was wiped out from dragging, hoisting, crutching, was when the pool became my favorite place. All that pesky gravity melted away.

It does get better but It takes time. Hang in there and forgive yourself for the things you can't do right now. Recovery comes in stages. I hit two miles today for the first time!

I am kind of in shock that I did it. That is a record. It took a year that started with a few steps, then a walk down the driveway, to the mailbox, etc. That first mile came super slow, but it came.

Keep up the good work! Because yes, under these circumstances taking a shower is work!

visioniosiv · 06-22-2015, 11:17 AM

Hey Bio,

Good for you on following your intuition re: going barefoot. Proprioception is a big deal! It really helped me in the healing process. I know that for a fact.

I too was a former athlete that lost it all - at one point I was not able to walk and didn't know if I ever would again. The 24/7 pain and insomnia was what scared me the most though.

I can sprint barefoot pain free now.

Full recovery IS possible.

Here's a list of all the stuff I did that helped me along the way - feel free to pick and choose whatever resonates and leave the rest. Some of it's kinda weird, but for me, weird was the way to go.

http://neurotalk.psychcentral.com/thread205597.html

All the best!

Littlepaw · 06-22-2015, 03:29 PM

Good for you on getting around in the Trader Joe's! Did you get any of those fruit jellies from Greece? yumm.

Depending on your foot issues and doctor's advice you might consider trying a rolling walker too. I used one for a while after surgeries two and three. It seemed to allow a more natural foot motion and did not stress my upper body as much as crutches. It does allow a little more weightbearing. When I had enough I would prop on my knee or just sit. I think we have to try everything that works!

I remember well the zipperless pants days. I lived in Yoga gear until lately. Just made it into jeans in the last couple of months. I made it a little more fun with bright colors which is easy in athletic clothes and does lighten the day a little. You'll get there. I am back in cute skirts and am actually considering painting my toenails for the first time in two years.

on going barefoot - If you need the support for bone issues or keeping things aligned as they heal then minimize diversion from your doctor's recommendations. If they are just saying no bare feet because they think going barefoot is bad in general that is different. I found walking in grass to be awesome. It provides nice cushion and lots of texture and temperature differences in shade and sun. Packed sand is nice too. Any recovery you can do outdoors meets two needs. You need relaxation, restoration and lots of non-painful input. Being outdoors gives you so many things to focus on besides pain. Do the things that keep your pain down.

Good luck with the new doctor. This is an important relationship. We don't necessarily have to like our doctors but we do need to feel confident in them. Make sure it is a good fit and you feel your needs will be met.

Take care and keep up the fight!

SandyRI · 06-22-2015, 07:01 PM

If you can make it just over the border to Pawtucket, Rhode Island, I highly recommend Dr. Pradeep Chopra. 401-729-4985. He and his staff are the best....

BioBased · 06-20-2015, 07:55 PM

Russell,

It cracked me up on Friday that the endocrinologist I saw did not notice that I was inappropriately dressed for the season, wearing a long sleeved, winter fleece jacket when everyone else was in summer clothes.

Wouldn't it be great to have a personal, climate controlled space surrounding you?

Quote:

Originally Posted by Russell

Hey Bio,
I want to let you know you're not alone with that. My wife has a pic of me sitting outside on a day of 91 deg wrapped in a winter coat shivering from being so cold. I even find comfort sitting for hours in my neighbors sweat lodge that he built.
This year my battle seems to be heat flashes were my body will just heat up inside and my physical control gets really bad. Although I feel really hot and sweating like a pig my original CRPS area is cold to the touch and I get so tired.
This monster sucks!!!
Be well..

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