No pain

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

No pain

Post by Judy-T »

I have replied to post on the tbpi board on this subject but someone pointed out that I never talked about it here. I have been pain free for over a year. At the last camp I listened to a talk with Dr. Belzberg and it has changed my life. He had suggested a pain management doctor. I pursued that and have been on a very small dose of methadone. It just takes the pain away without the feeling of being on a narcotic. I go for follow-ups with my new doc every 3 months. It is a very cheap drug also. If anyone has any questions feel free to ask away.I hope this info will help some of you that are in pain. Judy
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: No pain

Post by admin »

Judy

where do you find a pain management doctor?
i am currently seeing neuro. who has put me on gabapentin 1800mg/day since feb.05. It seems to be making me weaker more fatigued than i've ever been!!!
Plus it is not helping with pain. Kath wrote something very interesting to me she said that often times doctors treat the symptoms rather than getting to the root of the problem.(can't wait to tell my doctor this). It is very frustrating to tell the doctor all of my "symptoms" and him looking at me like i am crazy. I have another appt. July 6th-- I am currently printing posts of other people(never knew there were this many--it just blows my mind)to show him i am not crazy. When I went in May--told him I was researching obpi--his response was not to believe everything I read...kinda hard not to when i can see soooooo many similaritries. I live in Tennessee ---cannot find bpi specialists.

I'm wondering what kind of pain you were having prior and at what part of the body?

Thanks. Would love to be pain free!!!!

Tracy in Tennessee
tracy1972
Posts: 52
Joined: Mon Jun 27, 2005 9:35 am

Re: No pain

Post by tracy1972 »

Judy

Where do you find a pain management doctor?

I am seeing a neuro. who put me on gabapentin 1800mg/day(which has made me weaker and more fatigued than i have ever been.) The pain has not stopped either. Worse in hip and leg.

Kath wrote something very interesting to me --doctors often treat symptoms and never really get to the root of the problem.

I find it frustrating telling the doctor my symptoms and then him looking at me like i am crazy...when i saw him in May I told him I was researching obpi--he told me not to believe everything i read on the internet...kinda hard not to with all the similarities.

Currently printing some posts of people who have the same "symptoms" and just happens to have the same birth injury.(can't wait until July 6th--next appt.)

Also, the May appt. he told me I would have chronic pain the rest of my life--that I would just have to deal with.

Just wondering what kind of pain you were having and at what part(s) of the body you were experiencing prior to methadone?

Thanks and congrats on no more pain.
Would love to be pain free
Tracy in Tennessee
tracy1972
Posts: 52
Joined: Mon Jun 27, 2005 9:35 am

Re: No pain

Post by tracy1972 »

Sorry I thought the first one didn't post!!!!
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: No pain

Post by Judy-T »

Tracy,
Look in your phone book under physicians then under pain management. I would first ask your doctor to refer you to a pain management doctor or clinic.My primary doc referred me to a pain management specialist. I had an mri and an emg. If he told you you would have chronic pain all your life and to deal with it, I would deal with it by finding a new doctor. After hearing the seminar at camp I learned that I did not have to live in pain and there were choices out there. I was experiencing pain in my shoulder, arm and neck. The worst was the indention on my shoulder.
tracy1972
Posts: 52
Joined: Mon Jun 27, 2005 9:35 am

Re: No pain

Post by tracy1972 »

Judy

I looked in my phone book-only thing under pain was chiro-which i've been to with no positive result! But i will ask neuro about it-I suffer from robpi-- have had mri(on right lower back only-where knot is)--he says knot is just my hip bone. I guess I don't have a left hip there is no knot there-- my way of making fun of him. I have also had emg-he says everything is o.k. but I am still in pain. The last emg/PT sessions I was 2yrs. old. I am bringing in the big guns(my mom)with me (the doctors told her when I was 2 they had done all they could for me)to next visit and I think you are right on target if no answers next appt.-- time to find someone who knows more about my injury.

I have pain in all of affected side--unaffected side getting weaker.

Can't make it to this year's camp--But making it a priorty for next year!!!

Thanks for your suggestions.

Tracy in Tennessee
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: No pain

Post by Carolyn J »

Hi Tracy, my 2cents:
You've been getting fabulous advice from all the posters before me. I urge you to follow thru on Labor & Industy Comp. for yourself at this time,actually ASAP, it can pay for alot of diagnosic stuff especially will you need documented diagnosic assessments when you persue Soc. Sec. Disability. PLEASE take care of your "good" side limbs. I didn't and I'm paying for it.
~Hugs, Carolyn J
Carolyn J
Adult LOBPI
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: No pain

Post by Carolyn J »

Tracy...I forgot: You might look into going to the nearest University Medical Center for a specialist in Pain Management. Even if you woild have to travel a ways to get to one, it is mighty worth it to do do.
Hugs~Carolyn J
Carolyn J
Adult LOBPI
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