Need a little advice, daughter struggling
 

Hi everyone. I know with the wealth of experience on this board I will get some good advice....My 15 yo daughter has been struggling with RSD for 2 years. She was doing OK for a while but the past 4 months have been going downhill quick. She has pain in both legs, her ribs, and her shoulders...and headaches EVERY day. We have an appt with a pedi. pain mgmt in another city in about two weeks. We are kind of in between doctors at this point. As usual, we thought we had a good one until he said he was out of ideas time to move on. Anyway, my daughter is asking for a wheelchair. She is laying on the couch or bed about 90% of the day. She "can" walk, but obviously it is excruciating. I feel like a wheelchair might at least get her off the couch more. I know "move it or lose it" but she's not moving it at this point because she's never getting up.

What do you all think about using a wheelchair....are they necessary at some point?

Thanks for our opinions.

dear Mom,

First my heart goes out to your daughter, yourself and your whole family!

I have internal RSD that was caused by 2 surgeries i had. I have been ill for 6 years and just got diagnosed 9 months ago. I also have a herniated L4 disc that causes me to walk bent over with a walker. i am mostly bed ridden and can still get to the bathroom with my walker. I get out side about once a week and i use my walker to get to the car. if i have to go any further then that, i wont make it and my hubby pushes me in my wheel chair. I am getting very weak by not using what i have but like you said it hurts to move.

SO because we cant feel eachothers pain but we all know that we have it, I say do all you can to be as comfortable as possible. have the wheel chair accessable for your daughter so she knows its there if she wants it. it doesnt become a crutch for her, she needs real help. Until you can find a better pain management situation for her, help her all you can. Being trapped in a body filled with pain...I will sometimes hold my urine for hours until i just cant wait another second because it hurts me to move more than it does to hold my bladder. i didnt mean to be gross ....i know exactly how many steps to my front door and how many more to my car...until i can sit and rest my body and the pain from each step i had to take stops radiating through out my body. I have a letter to hare with you...I posted this a few weeks ago.....maybe you could print this off for your family and friends. It was written so eloquently by a wonderful person who did not put their name on it....read below and maybe it will help you understand your daughters pain a little bit more. Also, I just think it is amazing of you that you have come here looking for help....I know its hard to watch someone you love suffer!

Here was the post i mentioned:

Passing this on from a friend on face book She did not write it. I do not know who wrote it but this says it all better then I could ever explain how it is to live with Chronic Pain...

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me - stuck inside of this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please respect the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable", and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "but you did it before!" or "Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are -- to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would?

Another statement that hurts is "you just need to push yourself more, try harder ... “Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out ...

Sometimes I need you to help me with the shopping, cooking, or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

-Author unknown.

I am so sorry to hear that your daughter has this monster and she is not doing well. It is a tough decision about the wheelchair. My daughter who is 17 has had RSD for about 2 years also. At first it was in her left leg and she would use crutches all the time. She had lost so much muscle in her leg and she was in pain all the time, the color of her leg was a deep purple and looked terrible. I would highly recommend the Boston Pain Rehab Program PPRC. She was there for 4 weeks and was off the crutches in two days. They have a great team and I have seen amazing results. She got her life back for almost 3 months, she was running, going to school, hanging out with friends, it was a wonderful time. She was still in pain but learned to be fuctional. To our disappointment it didn’t last very long but they taught her lifetime lessons. During those 3 months it spread to her left arm/shoulder, but she never wanted to go back to any device to help her (walker or wheelchair) and I have offered them to her because it was so hard to see her in so much pain when she would weight bear. PPRC teaches these kids how to cope and not to go back to the things that will make the RSD worse. Slowly she did get better and is able to go out with friends and family events, sometimes even shopping.

The current condition your daughter is in, yes I would get her a wheelchair, staying in bed is not where she should be. But please look into a rehab program for her. Boston, Philly and Cleveland Clinic all offer a rehab program and it sounds like you daughter could really benefit from it. My daughter still struggles with this disease every day, she is home bound from school at the moment but she gets out of bed every day. She does PT twice a week and just keeps moving. Yes, she has her bad days and flares seem to happen more than often than we all like.

I hope and pray your daughter gets better; our kids are just too young to have this monster in their lives.

Dear DDD15,
Trust me, I am not 15, but accepting the limitations is a long process. I still won't get on the electric cart in the grocery in my town, somebody might see me. I have used out of town where nobody knows me.

So I guess I'm saying I can't even begin to imagine a fifteen year old dealing with the pain, the limitations, the stigmas of being different, the changes and life choices that are going on in her body and mind.

Rachael's Daughter's advice serves a double purpose then, by giving her opportunity to overcome the fear of the stigmas and yet helping her to cope and giving her hope. Maybe the two could correspond and R'sD could offer yours some encouragement that might touch a nerve she's tuning out with you 'cause as all fifteen year olds have a tendency to think-"You are just the mom, you don't know how it is!".

I will be praying for both of you, because I know you would take this from her in a heartbeat.

One day at a time,
pat e

Thank you all so much. I feel much better about looking for a chair today...now, where to begin on that! I'm thinking Craigslist? I know I could get her a prescription for one, but it would probably end up costing me more due to awful insurance.

I love the anonymous letter. I have read that before, but it really helps to read it again. I'm printing it out this time. Sadly, I have had family members read this type thing before, but they still refuse to get it. My daughter is VERY strong, she rarely cries with pain and is even laughing at times. She puts on a good front for the family/friends for a couple of hours and when she gets home it's always hell for the next 2-3 days. It's hard to see your child miserable, but it's ALMOST just as hard to see family so oblivious to her condition. They say, at least it's not cancer....well, cancer can be cured, people have heard of it, there's more "hope". (please know I don't take cancer lightly, my best friend died of cancer less than a year ago...that still hurts!)

As for the PPRC. My daughter actually did go to Seattle Children's, but at that time she wasn't as severe. She did "get better" for a while, but it has recently become so much worse and has spread. Right now we are taking her to a program in Dallas. it's not as well known as the others, but it's close to home and we're going to at least check it out. Our next step would be Cleveland.

Again, thank you all so much. I know you all know how validating it is to talk to people that "get it". If you have any advice regarding purchasing a wheelchair I would love to hear it!

You are very welcome about the letter...sometimes i read it to myself to remind myself i dont have to pretend that i am fine...im not fine. but i can have a positive attitude, I can be kind to my family and not give them a hard time just because im sore.

please check out your insurance even though it suks. Mine does too...but when it came to durable medical equipment, it was great. i got a 300.00 walker for about a 20.00 payment! that shocked me...i thought it was going to be 50%.

so a phone call may just put your mind at ease, and it wont cost anything to ask.
hugs
Lori

Dear ddd15,
My heart goes out to you and your daughter. I was diagnosed with CRPS when I was 19 years old. I know what it feels like to be young and have this disease. Sometimes all I wish is that at least God could have given this to me after I got to live a full life. I know at any age it is horrible, but I want to get married, have kids and have a career! I'm still hoping it is in the cards for me (I'm 27 now). Please tell your daughter that there is hope, I went into remission after a year and a half and had a normal life up until 3 years ago when I injured myself again. So there is definitely hope!
I know there is much controversy with doctors regarding walkers and wheelchairs. I think if it allows your daughter the opportunity to get out more than it is worth it. We have to cherish those small moments of happiness any way we can. I don't know what your daughter has tried, but when I was 19 I did water therapy which seemed to help a little and I've had some temporary relief with Myofascial release, Cranial sacral therapy and Feldenkrais classes. These are more holistic/natural approaches, but since I've tried every med on the market I had to start thinking out of the box. Please let your daughter know we are rooting for her and that we support her!

Dear ddd5,

Have you ever heard of Dr. Sherry? His program is in Philly. I hear he is tough really tough but they are getting great results. I don't have a number but if you google his name it should come right up.

I hope your daughter feels better she sounds like a very strong young lady.

Good Luck,

Gabbycakes

ddd15, my sister who lives in NJ asked me a couple of weeks ago if I knew anyone who wanted a wheelchair. It belongs to a good friend of hers who has no need for this chair any longer and wanted it to go to someone in real need, not some company wanting to make a big profit. I'll asked her about it today to see if it is still available. If it is I'll get the specks on it an see if it is something your daughter can use.

jim

I talked with my sister. Sorry, the chair was given to a local church in their area. I hope your daughter gets the treatment she needs.