progress - says who?

[Guest guest]

Just wanted to vent. Multiple doctors and physical therapists all think there

is progress in my condition* even though I still hurt as much as ever. Doesn't

seem like very worthwhile progress to me. hmph.

*Pudendal Nerve Entrapment, over six years, just diagnosed this year.

p.s. Funny - this page is showing an internet ad for Lyrica, the drug that

several doctors and therapists have highly recommended for me, yet which my

insurance has chosen to deny.

[Guest guest]

,

Pudental Nerve Entrapment is a horrific condition! My heart just goes out to

you. My husband has lived with this for 15+ years and was only diagnosed 3 years

ago after we finally found a specialist in Houston, TX. We saw countless doctors

in search of a cause to his unrelenting pain!

Have you considered Gabapentin instead of Lyrica? They are sister drugs in that

they work much the same way on the nerve receptors in your body. Lyrica is the

newer of the two but Gabapentin should not be denied by your insurance company.

I've been on Gabapentin since my CRPS/RSD diagnosis 18 months ago and it does

give me some pain relief.

~Carol

wrote:

Just wanted to vent. Multiple doctors and physical therapists all think there

is progress in my condition* even though I still hurt as much as ever. Doesn't

seem like very worthwhile progress to me. hmph.

*Pudendal Nerve Entrapment, over six years, just diagnosed this year.

[Guest guest]

,

I've been in the same situation. The doctors, physical therapists, family and

friends think I am doing better, but I still hurt as much as I ever did. I am a

data driven person. I keep a pain diary. I showed them that I was still rating

my pain as high as I did when I started. They said look at what more you are

able to do today as compared to when you started.

I have been going to physical therapy for more than a year. My physical therapy

is usually re-evaluated on a very short schedule, 4 or 6 weeks. While I cannot

always see the progress I have been making, they do have some objective

measures. They tell me what the progress has been. Sometimes it is just being

able to do more reps, sometimes it is a increase in how far I can bend my

joints, sometimes it is more weight. Despite their reassurances, these changes

often do not feel like much to me. It is not like I can see most of those

changes month to month.

So then they physical therapists, doctors and family kick in with how much I

have changed over the past two years. Two years ago I was completely on bed

rest. I might have gotten up and sat for an hour or so before going back to

bed. Today, I am usually up and dressed. Two years ago, I was not doing email,

cooking, taking care of the pets, etc. Today I do. So while my pain has not

gone down, my quality of life has improved.

Sure, I am miles away from where I was before chronic pain and miles away from

where I want to be. Some days it seems like I am as useful as a lump on a log.

I get depressed about how little progress I have made. But then someone points

out to me how much better I am doing.

And, yes, the pain is supposed to stop. Is that not why we are going to physical

therapy? Partly. It is also to regain functionality in our lives. Ask the

physical therapists to show you what progress they think has been made. Ask the

doctors to tell you where they see improvement. Tell them about the pain and

your feelings that things are not improving. Ask them for projections of pain.

I will get off my soapbox now. Sometimes the soapbox is the only thing that

keeps me going.

Good luck.

> wrote:

> Just wanted to vent. Multiple doctors and physical therapists all think there

is progress in my condition* even though I still hurt as much as ever. Doesn't

seem like very worthwhile progress to me. hmph.

[Guest guest]

Well put . May I add, as much as I would love the pain to disappear I am

happy that I do get more relief than I did a couple years ago. I have to work

at staying limber much more than 10 years ago. However it is worth it to be

able to be functionable.

I know my pain is never going to stop. I try and stay in the moment.

I have tried to make my pain just a normal part of me rather than a enemy.

I try to be thankful for each good day and just accept the bad ones as a bump in

the road.

Hugs to all, Tami

wrote:

> And, yes, the pain is supposed to stop. Is that not why we are going to

physical therapy? Partly. It is also to regain functionality in our lives. Ask

the physical therapists to show you what progress they think has been made. Ask

the doctors to tell you where they see improvement. Tell them about the pain

and your feelings that things are not improving. Ask them for projections of

pain.

[Guest guest]

May I add in a little also, I would love to never feel pain again but I am so

use to it now that it is just something I have to deal with. My family all know

that if I have to say no to something it's because my body won't let me do it. I

do what I can because half of my syndromes will eventually put me back in the

wheelchair.

I would love to exercise and go everywhere. I can drive as long as I don't take

some of my medications. I'm in really bad pain driving, but I try hard to ignore

it just so I can drive as long as I can.

Many of my doctors and neurologists have told me that soon my body

will deteriorate to a point where I will have a really hard time trying to do

things. So I enjoy all I can do right now. Exercise will make my hip joints and

others deteriorate faster. So I take it slow and easy. Hopefully I will stay out

of that wheelchair longer than my doctors think.

Gentle hugs,

Ms.Katurah