Re: New to Group and Med/Work Questions/Poll (BuTrans)

[Guest guest]

,

You might find this website useful:

http://workingwithchronicillness.com/

-

wrote:

> I am trying to cope with pain and live a " normal life " and work somehow. I

> would like input from the group about how you manage working with chronic

> pain.

[Guest guest]

,

I take mscontin, morphine that lasts about 8 hours for me so I take 3 doses a

day.  It comes in various doses and I am taking 30 mg.  I don't get sleepy,

loopy or anything negative except for constipation.  I take 2 8.6mg senna

tablets a day for that.  

Not at all a costly way to deal with this pain.  It doesn't remove the pains, of

which the worst are spine relataed.  Just lets me tolerate, function better and

sleep better. 

There are times I wish I had breakthrough pills but my pain doctor doesn't want

me to have them I guess.  I do take some advil, generic, and ibuprophen from

time to time, which helps my arthritis a bit.  I'd say my pain is around a 4-6

on average with some 7-8 periods of time every week. 

Tramadol did nothing but cause rebound headaches for me.  I've never tried

patches.   Oh and I do take gabapentin, on occasion, because if I take it every

day it doesn't help my nerve pain, which doesn't bother me every day anyway. 

I'm also on citalopram, generic Celexa, Vit D3, Lisinopril for blood pressure

and a multi vit/min pill.

My granddaughter has scoliosis, diagnosed last winter age 10, using a brace

now.  We don't know what the extent or outcome will be.  She had heart surgery

to regulate her high heart rate, which was successful.  And she's on an

antidepressant.  I hope she can overcome and not let these health issues bring

her down.  Any advice you would  have to give to her?

Jennette

wrote:

>I haven't tried any of the

>morphines. Do they make you as sleepy/dumb as others? The only other

>long-acting narcotic I've tried is fentanyl and, over time, it depressed

>my breathing enough that it was anywhere from bothersome to dangerous.

[Guest guest]

Jennette

Does your doctor give a reason for not treating hour BTP (breakthrough

pain), as is standard of practice.

I HIGHLY recommend Dr. Forest Tennant's Intractable Pain Patient's Survival

Guide for ALL pain patients, caregivers, doctors, nurses, friends, and

family members. I've read it many times (10+ over the past 3 years) and I

learn more EVERY time. The book is (legally) available for FREE at:

http://pain-topics.org/pdf/IntractablePainSurvival.pdf

Best wishes to your granddaughter. Scoliosis can be he**, especially at a young

age. How bad is it? Is it causing her pain?

How is her heart doing now? What was her diagnosis? What surgery did they do?

Steve M in PA

Jennette wrote:

There are times I wish I had breakthrough pills but my pain doctor doesn't want

me to have them I guess.

[Guest guest]

Jennette,

Thanks for your reply. I think you should talk to your doc about breakthrough

med. Do you work? If so, what do you do?

About your granddaughter with scoliosis: I was being treated for a heart

infection when they found mine about age 11, interesting story. Luckily I've had

no more heart issues and I am 53 now.

I'm trying to think of something encouraging to say about scoliosis. It hits at

a time when self-image is so critical so it can do a number on your psyche. I

wish I had had some counseling or been able to see a bigger picture as a teen.

But today the braces they use are pretty much invisible aren't they? Mine had a

metal neck brace as well so it was the first thing people noticed.

I had a good attitude until I got it off in the 10th grade and this guy I had a

crush on didn't fall madly in love with me. Lol.

I had surgery for mine the summer after the 8th grade. And I did just fine after

the surgery until age 36, when I started to have pain. By age 40 I finally found

a doc who knew what he was doing and realized my curvature had been increasing

(thus a failed fusion) over the past 4 years.

I was in such pain that there was no question that I had to have surgery. The

issue was then finding a good revision specialist.

So: my advice: try to help her focus on life and not on her back, positive

things, accomplishments, goals etc. and get counseling if needed. But also

research doctors tirelessly!!! Make sure you have a spine specialist that

specializes in scoliosis and deformities of the spine. Check out the list of

docs in the Scoliosis Research Society at www.srs.org. There are some yahoo

groups for scoliosis.

The one I find helpful is Flatback Revised as far as knowing the top docs for

revision. I know you aren't needing a revision surgeon but if they can do a

revision, then a regular fusion should be a breeze I would think.

I know you aren't even to surgery yet and hopefully you won't have to go there.

Please understand that many people have scoliosis and not very many people as a

percentage wind up having to have surgery. So maybe she won't. But finding a

good ortho or neuro doc that specializes in scoliosis is KEY.

Good luck and keep me posted. Feel free to email me privately if you have more

questions.

Thanks

[Guest guest]

,

I am so glad you wrote to me about your dealings with scoliosis.  I've passed

along the information to my Daughter. I don't work, just one of those stay at

home moms who raised 4 children and made that my " career " . It paid off for my

children and was rewarding work for me. We were more bonded than if I hadn't

been at home for them when they needed me.

I worked with horses, training and riding, also trained and showed dogs till the

pain slowed me down. I am not able to be reliable because I never know how I'm

going to feel. The way I have to adjust around the pain has become my

normal. Some days though, I'm down for the count and ask for assistance from my

oldest daughter who lives at home and my husband who is retired. They are so

used to me pushing and doing to keep everyone fed in a clean house with clean

clothes that they are kind of at a loss when I take a day off.

We have a little piece of property with chickens, a horse and goat, some dogs

and cats to help me cope and keep moving.  I'd be lost without my animals but

they are a burden sometimes.  Thankfully my husband picked up on the routine of

caring for the animals outside.  I always feed the dogs and care for

them. Grooming and training and soaking up their heat. Only people who live with

dogs understand how a hairy dog can be such a pain reliever. Stress reducer too.

I see my pain management doctor Monday and will ask her what we can do when the

pain overrides the morphine.

Thanks,

Jennette

> wrote:

 

>Jennette,

>

>Thanks for your reply. I think you should talk to your doc about breakthrough

med. Do you work? If so, what do you do?

>

>About your granddaughter with scoliosis: I was being treated for a heart

infection when they found mine about age 11, interesting story. Luckily I've had

no more heart issues and I am 53 now.

[Guest guest]

wrote:

>> I am trying to cope with pain and live a " normal life " and work somehow. I

>> would like input from the group about how you manage working with chronic

>> pain.

,

I try to find out all the information about my conditions I can and there are

many Foundations for each, i.e. Fibromyalgia (American Fibromylagia Association)

Spine Universe, Spine Health, and others.

Over the years I have narrowed down to a few tried and true websites that

condense the information needed for pain. They are PainTopics.org, and my

favorite,Survival Guide for Intractable Pain Patients which can be downloaded

at

pain-topics.org/pdf/IntractablePainSurvival.pdf

The author Dr. Forest Tennant has been a pain specialist for years and dedicated

his life to research and assisting pain patients. He is a co author of a pain

journal and other articles he has written can be found under his name.

These websites lists numerous articles and resources and the paintopics.org has

a link under resources and has over two hundred sites for subjects related to

pain. Please check them out and see if they have something that might help you.

I deal with the pain day by day using resources such as myofascial physical

therapy, topical pain gel, opoid therapy, biofeedback training and cognitive

behavior therapy (I like Glasser's Reality Therapy but there are many

types), pain journal, and this group is and has been my lifesaver.

When I was really down and trying to accept my disability a member e-mailed me

personally (Thank You ) and helped me to know about getting FMLA (Family

Leave and Protection Act), how to protect myself in my job until I could apply

and get Social Security Disability. She was right, I was subjected to them

trying to fire me but I did my job exceptionally and they could not substantiate

it. So I told them I was going to apply for disability and resign.

My family support, husband and son are exceptionally but Sisters and Father (who

is 94) don't accept it as I used to be so energetic and take care of everything.

The main thing for me is controlling the stress and not allowing toxic

relationships effect me.

You will find very supportive members here in different phases of their pain

journey which have provided great information and support for me and others, I

am sure.

Welcome again.

Bennie

[Guest guest]

, Jennette wrote:

>

>

> My granddaughter has scoliosis, diagnosed last winter age 10, using a brace

now. We don't know what the extent or outcome will be. She had heart surgery

to regulate her high heart rate, which was successful. And she's on an

antidepressant. I hope she can overcome and not let these health issues bring

her down. Any advice you would have to give to her?

>

> Jennette,

I think just making sure she sees a scollops specialist (we have a great

group in our area) and rehab specialist and learning all she can about her

condition.

Joining a forum would allow her to see others with she has and the

experiences they have. I did an internet search and there are many websites but

this link is for her age group www.scoliosis-support.org/ .The National Scollops

Foundation is an adult group but would give information for those older.

I noticed you take Vit D, I recently found my level to be dangerously low

and caused me an ICU visit. The deficiency caused me weakens in my legs where I

couldn't walk, altered thinking, and the worst bone pain I ever had. The

endocrinologist put me on fifty-thousand units weekly and after two weeks, I

felt I was raised from the dead.

Research shows that low Vitamin D causes increased pain and my Doctor

says it is an epidemic and going in the sun doesn't cure it.

I wish that all pain patients had a vitamin, mineral, intrinsic factor,

and hormone levels checked so that the patients can address those deficients as

many medications we take can cause these low levels. Instead of worrying about

urine testing, they could do blood surveys.

I hope the best for your Grand Daughter and if she could talk to others

or find a support group, many states have lists of support groups. One that I

found for support groups was

http://www.findingdulcinea.com/guides/Health/Scoliosis.pg_02.html. It had

information for young and teenagers. Check it out.

Welcome again. Bennie

>

>