United Brachial Plexus Network, Inc.

Christina,
...You are entitled to Vent & Cry. What better place than here. We love and support you.

HUGS, & a Prayer for your relief of pain,
Carolyn J

I think that you are just overusing your arm. Don't get me wrong, I know you can't help it as you have too small kids. I know that if I tried to lift babies with my ROBPI all day it would be pretty sore. If you can't get to any PT then I would stretch out that elbow as much as you can (but not so that it makes it hurt more!). Keeping it bent all the time can cause muscle contractures which is also painful and not easy to reverse.
Try really simple modalities like a heating pad or store bought topical creams like icy hot( or something less intense if your hypersensitive).
Also, you could think about asking your doctor about lidoderm patches.All they are are patches that you stick on your body wherever it hurts. They are perscription strength so you need a script to get them but I find that they make by painful BPI shoulder feel better.

Also, please stop downplaying your symptoms. Living with pain, especially as bad as yours everyday, is VERY hard and wears you out. I know when I had an MRI of my shoulder the report came back as "nothing remarkable" for my soft tissues. I remember thinking, how can that be when it hurts so bad! Sigh
Becky

You are not making more of the pain or wimping out!
It hurts when you are lifting babies all the time.
When my kids were small it seemed as if all I did was run to the doctor.
I could not stand the pain in my robpi arm or my neck and back.
It was from over work the doctor would give me flexril and tell me to go to bed.
I found that drug knocked me out and someone had to care for the kids.
But I had no one, so I had to deal with the pain and it was soooo hard.
No one understood why I was always hurting my back and neck not even my family.
I never realized it was all on the right side and due to the bpi injury.
I never connected my arm injury with the rest of my body like my scapular and neck... nor did any doctor mention it.
I find when my arm is painful keeping it bent and close to my body does help.
It is not good for us but our shoulders feel so heavy and supporting it and bending the arm still gives me some relief.
I have 5 grandchildren and with the last granddaughter I found I could hardly hold her. I had to be seated and my arm propped up to feed her a bottle.
You should never feel bad complaining to us because we TRULY UNDERSTAND YOUR LONG TERM OVERUSE PROBLEMS.
I am sorry for the pain but sometimes just having others who understand make the stress of the pain a little less.

Kath (robpi/adult)

You are NOT wimiping out. Being a Mom is hard on a BPI Mommy. How many times has my heart broke to tell one of mine "No, Mommy can't pick you up" They don't understand. My arm has never been strong enough to hold one of mine. I could only hold with my left when sitting with it propped.

And the pain. And the meds that I can't take, cause like Kath said, they knock me out, and I have to take care of the family.

I too hold my arm bent, and to my body when it is hurting. It just gets worse if I don't. The pain is real, and you are not whining or whimping out. It is hard, and sometimes overly difficult to live with. Vent away!!:)

Thank you ladies. I actually worry so much about being a wimp because my case is so minor compared to almost everyone on this board that it's actually something that is stopping me from coming to camp. I'm terrified of meeting everyone and having everyone look at me like I'm a nut because I complain so much about my arm when most people don't even realize I have a problem. I'm totally embarrased even telling you all this. All of you have gone through so much more than I have.

Kamren...I totally get what you are saying about them not understanding that we can't pick them up. My daughter has been very clingy lately and constantly wants me to pick her up. I feel terrible telling her I can't because she is too young to understand. But I have been trying to sit down on the couch and let her crawl in my lap when she wants to be held. Now if I could just figure out how to get them in and out of their high chairs and cribs.

Kissy

OBPI is not about how we look.
People rarely notice my arm unless I have to grab something.
I don't have elbow contracture's but I have very limited function.
I don't look as if I have had all my nerves injured.
My arm hangs straight down so it's not noticeable.
Just because your arm may not be noticeable does not mean it is not injured and you should not complain.
It still limits you ability to function with daily activities.
I was shocked when they found the bright white spot in my MRI I was told that is a an avulsion.

As far as pain goes... that has nothing to do with the extent of your injury.
I really thought I had a mild injury until I met so many people and bpi MRI and it was more severe than I thought.
That did not change my pain issues.
Each injury heals in a different way.
Some people with severe injury may have less pain then those with mild injuries.

Please come to camp with your family.
It would be great for your husband, children & you.
You will not be judged at camp... you will be Welcomed, Supported and even find the humor in our injury.
When I met Nancy B, Judy T in Fla in 99 I was so amazed at how different each of our arms appeared.
Please come... it will really help you, especially with the feeling of being alone with this injury.
I did not want to go to camp the first time because I thought my husband would be bored.
Now he helps with Camp and is very into it.
He was always good about my injury and really did not notice it when we met.
Now he is able to advocate for prevention and understands my little quirks and pain problems.

In the meantime come here to vent or complain we all understand.
Those of us who raised children really remember the problems we had when our children were small.
I have to tell my small grandchildren to climb up on me because I can't pick them up anymore.
Children really don't care if we pick them up or not!
They just want to be close to us sitting or standing and all they need is our kisses, hugs, love & attention.
My children are all grown up now and if you ask them, and I did, my injury never impacted their life at all!

Keep your chin up -- we are all here for you.
Kath (adult/robpi)

PS
I had to change the statement about pain...
I am not sure what a mild injury really is...
Even a mild injury causes pain for some and changes their ability to function as a two handed person...


Message was edited by: Kath

I was not sure how to reply to this the first time I read it but I am now, you totally have every rigt to cry. This pain sucks!!! I just had to admit to my OT that I screwed up two weeks ago by holding my nephew too long while standing up and have been in pain since. I only had him for a couple hours and he weighs maybe 8lbs. But I did not have my tape on and my muscles got tight and they are hurting a lot right now. Thats only one baby for less than a day. You have two every day! That has to be painful! Never feel like a whimp or whiner when you are dealing with pain, every one hurts differently.

Pain is never something to look down on some one for! You should definitely come to camp! My injury is not very noticible except that I still wear splints and have circles for my e-stim drawn on my arm. I was a little scared to go to camp the first time too but after getting there it was so awesome!

I really hope to see you at camp!!!
Hugs,
Amy 19 years old ROBPI from MN

One of the hardest things, I think, to live with is that so often our injuries are not obvious to the casual observer. This is great because we, especially as kids, can feel like we don't look any different, even though we know we are.

It is bad, though, because it makes us feel like since nothing looks terribly wrong, then nothing must be wrong.

I have never once laid a sleeping child/baby in their crib without waking them up. My left arm will not reach. I have always given them to someone else to lay down, or woke them up to do it myself. I keep my babies in bassenettes as long as I could because they were shallow enough for me to lay my baby down.

I can not get them out either. They must be able to stand. Then I can wrap my right arm around them and lift them out.

Same thing goes for the basket at the supermarket. I kept them in the carseat with the carrying handle as long as I could, cause I can lift that one handed. Once I had to pick them up and put them into the cart, they had to be able to stand up and lean against me so I could wrap my right arm around them. More than once I have been in the parking lot saying "Come on, sweetie, please stand up, you know Mommy can't get you out unless you help." I have seen people stare at that one, because they don't know.

Don't let how severe you think your injury is or is not keep you from camp (or anything) We are already limited enough by the injury itself, none of us need to limit ourselves even more. I haven't been to camp. But that was $$, not my arm. I live in hope, though, we can save enough to go to this next one.

Kimberly
Oh my goodness! Your description of putting the babies in and out of the crib and shopping carts just blew me over.
That was me! My children had to climb in the car and onto the seat when they were small.

Now I have a problem with my grandchildren, if I have to lock in place the 5 point harness on the carseats...

I forgot that part of the "good old days" when the kids were small.
My girls were only 14 months apart. I had my son 4-1/2 year later it was still hard to lift.
Carting the kids and doing the grocery shopping exhausted me.
When my kids were small the stores were not open here at night so I had to take them.
I thought I was a wimp because it did not exhaust my friends.

Thanks for posting this...
It helps to know that others faced similar problems and we survived.
It helps more, I think, to be able to express the frustration of trying to do it all!

Kath (adult/robpi)


Message was edited by: Kath

Gosh Kimberly and Kath,
You are talking about me too 35&+ yrs. ago with my dear Angel son,Scott! I did not have a car, & carted a claspible umbrella-type stroller, diaper bag, my purse(why didn't I combine purse with D-bag??!!) on public buses and Subway in Philadelphia 1971 thru 1976. VERY RARELY did anyone offer assistance and when I did ASK, it was not a pleasant experience!

BUT, we BPI-ers are very T-O-U-G-H and are Survivers!!!
BTW, I wouldn't trade those days and memories for even Gold!!...[but I would take care of 'good side' better!]

HUGS & Keep on Keepin' On all!
Carolyn J,
LOBPI,68 & proud of it!