My daughter Tess is 13 y/o and is having an episode of severe nerve arm pain in her ROPI elbow. She has had this in the past a couple of times a year and iv morphine always works but this time is hasn't. Of course, they have sent us home b/c they don't know what else to do. Tess had five surgeries in Texas and has seen docs here at hopkins and phili in the past but they don't seem to know what to do either. Any suggestions?
Thanks,
Sharon and Tess
Severe arm pain
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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: Severe arm pain
Hello Sharon,
I've recieved alot of pain relief from sitting in a hot tub for 15 min. at a time. Also deep tissue Massage has been successful for other adults who have shared here.
Please let us know what works for Tess.
Fyi, the only surgery I've had was a tendon transplant from my leg to my foot when I was in my 20's, so I have several pain issues at this age.
HUGS,
Carolyn J
LOBPI/age 69
Message was edited by: Carolyn J
I've recieved alot of pain relief from sitting in a hot tub for 15 min. at a time. Also deep tissue Massage has been successful for other adults who have shared here.
Please let us know what works for Tess.
Fyi, the only surgery I've had was a tendon transplant from my leg to my foot when I was in my 20's, so I have several pain issues at this age.
HUGS,
Carolyn J
LOBPI/age 69
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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
Re: Severe arm pain
Sharon,
It sounds like to me that she has growth spurt pains . I remember those all to well. Try like Carolyn said and see if massage could help. I used tapping. I would just constantly tap my arm where it hurt. I don't know why but it seemed to help. Give Tess a hug for me.....Judy
It sounds like to me that she has growth spurt pains . I remember those all to well. Try like Carolyn said and see if massage could help. I used tapping. I would just constantly tap my arm where it hurt. I don't know why but it seemed to help. Give Tess a hug for me.....Judy
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Severe arm pain
Can you get hold of a TENS machine? Or interferential machine at PT? What kind of pain is it? Can she decsribe it? It may be neurogenic pain and in that case narcotic meds won't touch it at all. She would need either Neurontin (gabapentine) or Lyrica (pregabalin). These are anticonvulsant drugs BUT also work for neuro pain and is what is given for those who get this pain. The types of pain sensation for neuro pain can range from stabbing, pins and needles, squeezing, tight feeling,..
Good luck, let us know what happens.
Marieke (31, LOBPI)
Good luck, let us know what happens.
Marieke (31, LOBPI)
Re: Severe arm pain
Hi Sharon
My son Frankie 14yrs old has had the same pain his goes from his wrist to his elbow and he says its like being shocked along with a deep burning. His occurs when he is having a growth spurt, or getting sick/ running a fever. Frankie has found that heat works best to stop the pain hot towels, parifin wax dips anything hot also advil Good luck Mare
My son Frankie 14yrs old has had the same pain his goes from his wrist to his elbow and he says its like being shocked along with a deep burning. His occurs when he is having a growth spurt, or getting sick/ running a fever. Frankie has found that heat works best to stop the pain hot towels, parifin wax dips anything hot also advil Good luck Mare
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Severe arm pain
Sharon
I think she may be growing as Judy said and boy that was a rough time for me.
I also tapped and it seemed to help distract from the pain. I still tap when I am uncomfortable and I don't know why I do it or if I was taught to do it as a child. I just do it when I am in pain.
Has Tess been tested to make sure nothing is out of place or broken?
I find that a Hot Tub was a big pain reliever and also used Napraxon 500 mg twice a day sometimes.
I find if the pain in not as severe Aleve gel caps work well.
I have had Myofacial Release, Active Release Therapy and massages to help with the pain but the jets from the hot tub seemed to work the best.
I'm so sorry she feels so bad. Please keep us posted on her condition and what works for her.
Kath robpi/adult
I think she may be growing as Judy said and boy that was a rough time for me.
I also tapped and it seemed to help distract from the pain. I still tap when I am uncomfortable and I don't know why I do it or if I was taught to do it as a child. I just do it when I am in pain.
Has Tess been tested to make sure nothing is out of place or broken?
I find that a Hot Tub was a big pain reliever and also used Napraxon 500 mg twice a day sometimes.
I find if the pain in not as severe Aleve gel caps work well.
I have had Myofacial Release, Active Release Therapy and massages to help with the pain but the jets from the hot tub seemed to work the best.
I'm so sorry she feels so bad. Please keep us posted on her condition and what works for her.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Severe arm pain
Thanks everyone for the advice. Tess was diagnosed with Mono this week and they think that triggered it. She says it feels like lightning shocks. She has actually bruised it from pinching/hitting and twisting it so much today. She tried ice and heat. She finally is responding to the high dose of advil they have her on and I think the percocet has knocked her out enough to sleep. I have an appt. at the Johns Hopkins pain clinic and the Curtis hand center at union memorial hosp. here in Baltimore. I will ask about all the things everyone has mentioned.
Thanks again for all the great advice. For 13 yrs. we get the best answers from everyone here. Tess says it's what has made her injury "not so bad".
Thanks again for all the great advice. For 13 yrs. we get the best answers from everyone here. Tess says it's what has made her injury "not so bad".
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Severe arm pain
Poor kid! It is neurogenic pain and that is no fun at all. Mono sucks too... I had that at age 9, not sure how I got it at 9, but I did.
Good luck!
Marieke (31, LOBPI)
Good luck!
Marieke (31, LOBPI)
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Karen McClune
- Posts: 746
- Joined: Wed Sep 10, 2003 4:58 pm
Re: Severe arm pain
HI Sharon,
So sorry to hear about Tess. I sure hope she finds relief real soon. We missed you both at camp this year.
Keep us updated on how Tess is doing. Mono is the pits I had it as a teenager also.
Hugs to you both.
Karen
So sorry to hear about Tess. I sure hope she finds relief real soon. We missed you both at camp this year.
Keep us updated on how Tess is doing. Mono is the pits I had it as a teenager also.
Hugs to you both.
Karen
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Severe arm pain
Sharon
Mono stinks and I can understand why Tess is punching and pinching herself. Cold kills me and causes more pain and heat helps a little. I hope she will soon be on the mend and maybe these pains will lighten up. Mono will contribute to all her aches and pains. I had mono as an adult. One of my children was 7 and the other 18 both were so exhausted and achy and they are not obpi.
Besides all of the normal problems of being a teenager, I think OBPI kids have a real problem with just carrying their books. I use to carry mine in my robpi just so I could look normal... That caused more neck, back and arm pain. Is she carrying all her books to classes this way because it will add to her normal problems with her neck and arm.
Let us know how you make out!
Mono stinks and I can understand why Tess is punching and pinching herself. Cold kills me and causes more pain and heat helps a little. I hope she will soon be on the mend and maybe these pains will lighten up. Mono will contribute to all her aches and pains. I had mono as an adult. One of my children was 7 and the other 18 both were so exhausted and achy and they are not obpi.
Besides all of the normal problems of being a teenager, I think OBPI kids have a real problem with just carrying their books. I use to carry mine in my robpi just so I could look normal... That caused more neck, back and arm pain. Is she carrying all her books to classes this way because it will add to her normal problems with her neck and arm.
Let us know how you make out!
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi