Jennifer,
Like you, I walked, with a scissor gait... at about 34, I began to have the most EXCURCIATING pain in my legs! It was more than a 10 on a pain scale, truly off the charts. My leg muscles felt so tight it was all I could do not to scream. I saw a spasticity specialist and we went through trying many different meds. I had been taking feldenkrais lessons since I was 24, and they really helped me a lot, it is a very gentle therapy that retrains your brain to move in easier ways. But this pain was too much for it. My doc told me about a new pump that they were putting under the skin, and the med in it is sent to the spinal fluid a dozen micrograms per hour. But because it was a new thing, I didn't want to be a guinea pig. soi I suffered for a few more years.
In the meantime, I went on pain med and used the hot tub at the gym. Got a scooter, then a wheelchair when I began felling too much. Then at last, I got the baclofen PUMP PUT IN. Oh my god, it helped so much! My legs which had become so tight from spasticity that I could not straighten them out,
went 70 percent straight, but it still was painful, my hips were showing signs of severe deterioration, and were as loud as a creraky door. So I went and got new hip, and wow! it helped so much!
Thanks,
Tamar Raine
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It is not our differences that divide us.
It is our inability to recognize, accept, and celebrate those differences.
Audre Lorde
~
________________________________
From: reJennifer Bartlett <[log in to unmask]>
To: Tamar Raine <[log in to unmask]>
Cc: [log in to unmask]
Sent: Tuesday, May 6, 2014 2:55 PM
Subject: Re: Pain?
I didn'tthink it did before but as I age, I realize it does. I have always been a very active "walker." What I get is a series of rotating mild to pronounced aches and pains. They largely manifest in my limbs, feet, and stomach. I wake a lot with pain at night.
I have a premenatly dislocated left need either from my gait or an accident in PE 30 years ago. Often, I have no pain in the knee at all, but sometimes it is excoriating. I get a lot, a lot of cramping in my feet. But again, I live in New York and take the subway with heavy bags and I think this all adds stress on my body. I also choke often which leads to vomiting. Does anyone get that?
What helps you guys? I find yoga helps a lot and consciously relaxing each muscle. I started going to the Russian baths with saunas and that helps so much. Aslo massages and aspirin. What do you guys do???
I suppose it varies with age, life-style and mobility?
On Tue, May 6, 2014 at 5:47 PM, Tamar Raine <[log in to unmask]> wrote:
YES! due to very tight muscles, AND due to abnormal movement our joints and spine take a beating!!! It can cause scoliosis and lordosis which are curvatures in different directions.
>
>also sitting all the time can hurt our butt, low back... all kinds of pain!
>
>
>Thanks,
>Tamar Raine
>
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
>It is not our differences that divide us.
>It is our inability to recognize, accept, and celebrate those differences.
>Audre Lorde
>~
>
>________________________________
> From: Kathy Jo Pink <[log in to unmask]>
>To: [log in to unmask]
>Sent: Tuesday, May 6, 2014 10:42 AM
>Subject: Pain?
>
>
>
>is pain associated with Cerebral Palsy?
>
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