Im a 16 year old girl and I have had CRPS since I was 12 due to being hit by a car and my Dad not believing I had 3 fractures in my foot for 6 month without treatment. My CRPS is now all over my body and severe. My doctor is awful and they literally do NOTHING. I take 200 mg Lyrica 3 times a day, 100 mg of Lamictal twice a day, 25 mg benydril at bed time and ibuprofen/Excedrin migraine as needed. I am now home schooled and willing to try anything, home schooling was pressured upon me because my dad thinks I cant handle high school. I am extremely irritable ever since my dose changed to 3 times a day and Im depressed enough as it is. My dad has failed to make another appointment with my former doctor. I just started acupuncture and he told me I should go to an osteopathic doctor and try to get off my medication. Has anyone had any success with holistic approaches? Gotten off all pharmaceuticals? I have to get this under control by August, I HAVE TO GO BACK TO HIGHSCHOOL.

Emily this is really hard to answer. You're 16 which is really old, but you're 16 which is also really young. I'm sorry you have had to deal with this.

My experience is that drugs can certainly be beneficial in masking the pain, but they will not make it go away permanently. And the effects vary person to person, and can be negative as you are experiencing.

Have you and your dad looked into hyperbaric oxygen therapy?

My heart goes out to you!! So young! Are you being seen by
a really good Pain Mgt. Dr.? Does your Dad have insurance coverage for you?

I'd like to see you be offered more pain mgt. options. There are nerve blocks,
spinal cord stimulators, types of infusions etc.
Good, aggressive treatment at your young age has a much better
chance of remission than us older folks.
I'm sure you already know about taking lots of Vitamin C & some Magnesium
citrate.

Hi kemily

I'm so sorry you have this at 16 - being 16 is hard enough without CRPS to deal with! You must be a very strong and amazing young woman.

The likelihood is that you won't be able to completely get rid of the CRPS pain you are feeling. I know that's a hard thing to hear, but it is very possible to deal with this disease and still have a good life. Not just a life, but a good one

It sounds like you and your dad have some issues, and I can understand your frustration if you're feeling even a little bit that he doesn't 'get' what you're going through. If he will, find some information about CRPS like the Wikipedia site, and ask him to read up on it. It's very important that he know what you're dealing with, but the truth is that no one who hasn't had this can understand what it's like.

Have you been offered counselling of any kind? You soukd have been. I'm sorry your primary doc isnt great, is there any chance of finding someone else? If not, then your best bet is to learn about CRPS yourself by reading good sites like rsdhope, Wikipedia, the NHS site etc, and maybe print off a sheet of info to take to your doc and ask him to read it. You could maybe ask your dad to find some income on it to give to your doc - then both of them would learn something about it, and maybe have more understanding of you.

Finding non-med treatments for this is a good plan. I only take lyrica now, having tried a few meds, and I use massage, meditation and movement as my treatments lol. It's much better than it was. My first year was the worst, and things are definitely more manageable now. Look after your body as much as you can by eating as healthily as you can, moving about as much as you can without making your pain too bad, and staying positive. Avoid ice on your skin altogether, and ask in your chemist/health store for unfragrances Epsom salts. Use a couple of tablespoons in a warm bath or wrap some in a damp cloth/sock and put it on your skin when it burns. The magnesium in it is very good for you, and helps cool the burn long-term.

Good for you on wanting to go back to school. So many people think being off sick is a treat of some kind - but it isn't when you're feeling rubbish and want nothing more than to feel normal again . I think school is certainly possible, it just might take a little while to get your body ready.

Never give up hope of something better than this, and keep up the good work with your school stuff until you can get back there. It'll help distract you from the CRPS symptoms - and any distraction is good!!

Good luck and keep posting x

Bram.

Hi There,

I'm a relative new-comer, but also on the "youngish" side (I'm 28 ). Here's what I'd share with you that I've figured out thus far:

1. I find that my symptoms are definitely intensified by my mental state. I think the illness has deep psychological roots. I know that I developed mine while going through an insanely stressful period of my life. I had been injured plenty of other times and not developed CRPS (one time I even broke 4 ribs and was fine in a month!). I'm not a physician or anything, but I can tell you that without a doubt, I'm confident that this disease absolutely has a relationship to one's mental state. I think stress + traumatic injury kicks off pain sensitivity. The key s figuring out how to calm that down -- and I think exhibiting personal control is a key factor. I've just recently started talking to a pain therapist and I can tell you -- I'm already making leaps and bounds when it comes to pain. Sure, I'm not pain free and I still have bad moments, but man am I noticing a beneficial effect.

2. Do anything that takes the pain away. Personally I've found a that a key therapy is reducing pain at all times as much as possible. It sounds crazy, but I literally took a foot bath to work and I soak my feet in it while working. Since starting this (two weeks ago) I've noticed a definite improvement in symptoms! It simply relaxes my nervous system / body in a way that helps avoid flares.

3. Have hope. You're young. You're healthy. You are GOING to beat this. The prognosis is fantastic for people in your shoes. I'm actually on the "old" end of the scale, but my doctor compares me too a teenager since I'm an athlete and in fantastic health -- so he thinks I'm going to beat it to. We've got this! We're going to to kick CRPS right out of our lives! Trust me!

If you're located in Seattle, definitely look into Seattle childrens hospital. They have a fantastic program for CRPS patients. At this point, screw waiting for your parents. If needs be, contact them yourself. They'll help you, I promise.

If you're not, I'd simply suggest contacting the nearest pediatric (childs) hospital. It'll be hard to arrange an appointment on your own, but I know you can do it -- get in there and get this taken care of!

I am Happy some people on this site can do just fine without any medications and live almost pain free. However it looks like the majority of cases can't. I have tried the no meds route and nearly tried to kill myself , do not let it get that bad if YOU want to try the no meds route. But this needs to be your decision you are the one suffering not your dad, even if you need to contact a child advocacy group to help support your decision.


In my opinion there is NO reason you should have to be in pain loverly. None at all especially if there are treatments out there that can help you both narcotic and alternate. Being in pain does not improve anything, suffering from this is pointless, suffering day in and day out does not develop strength of character or some other bs I have heard aimed at me. The initial 6 mo. ya maybe but after that its nothing but pain. So if you need pain meds do not let anyone shame you or make you feel lesser, your not because each person is effected so differently by this.

Dear kemily 18,

First, welcome.
Second, you are impressive that you have sought out information for yourself.
Third, I am so sorry that you are suffering.

Now to my comments.

You are not only young but also at a very precarious age as you are old enough to want to make decisions for yourself about your medical care but are under the age of 18 and not yet considered an adult. That makes you somewhat subject to the wishes and decisions of your parents and a bit limited in your quest for medical care.

You appear to be a very mature-minded 16 year old and should be commended for it.

I agree with Brambledog that you need to have a frank discussion with your parent(s) about your medical care and need to seek out what is best for you.

Any chance you can have some input about your care with your parents? Is there any chance they may be receptive to suggestions from you?

You ARE an amazing young lady. Please keep in touch with us and let us know how things progress.

A lot of us here are "old" (I am speaking of myself) but there are also some young people, too. I hope you can find comfort and help with us regardless of any age differences. We all have one thing in common,..... PAIN and no one should have to deal with that alone. We are here for you.

Good luck to you and hope you can get the help you need. Please keep in touch.

Kemily ,sorry to heard that you are going through such of awful pain,and so stressing situation,is hard for us,mostly we are all adult,I can't imagine how hard is for you live your teen years with this terrible condition,But I'm really amazed of how mature you are,you are able to understand and manage your condition the best you can,you are so brave,if I was one of your parents I definitely will be so proud of you. I had rsd/ crps for more then two years now,let me tell you is been a roller coaster ,highs and downs suddenly everything is different you just try to adapt to the situation,the hard part is get the right pain management dr and your own family support. I think if you feel like trying school go ahead that might distract you but if you definitely feel like going out is bad idea than talk to your parents seriously and make them let you stay at home and get homeschool, like a parent that's my opinion but all is in your hands and stand up for what you feel,show you parents pictures,videos from the internet,you tube, rsds.org is a crps community of America,you can find a lot information there,don't be afraid ,speak up, you need medical treatment ,rsd is real,people think that because they don't see a fracture or a physical injury you are not sick,there are many conditions that you can't see and is doesn't mean you are not sick,if they don't take you to the doctor,call the dr yourself and see things will change,you don't have suffer alone,there is people and places like here,you can learn,talk,listen ,and live less stress because some one care, we all care for each other,especially for someone like you,don't stop the fight,is a long fight but try,keep trying and do research,a lots of research ,rsd can be keep in control,takes time,but you will be able to control the flare ups as long as you take your meds,if you have side effects tell the dr they will try a different combo but tell him/ her what medication is not working so they can adjust your treatment,also physical therapy is essential if you can but if you can get hurt avoid it,hope you get better soon and speak up,don't be afraid or think is wrong ,you are too young to depend of medications to live day by day,you don't need that,changes need to be done,do more research,print then and show then to your family so they can learn to.
Sweet heart,I hope the best,I will pray for you,and blessing to you and your family, we are all here whenever and anytime you need us,your friend Jesika

Llynnyia, I'm not taking umbrage here lol, just responding
I have come to my Lyrica-only med state simply because other meds, particularly pain meds, haven't worked for me. Either because they're not effective, or because the trade-off between pain relief and side-effects just wasn't worth it. I certainly am not 'almost pain free', but i can manage my pain fairly well for the most part at this stage of my CRPS journey. I know that things might change...

I said that kemily may not be able to eliminate all her pain simply because CRPS pain is notoriously difficult to treat - which of course she knows all too well after four years of it. Even with pain meds, I don't think there are many of us without any pain at all. And I completely agree with you, being in pain isn't a good thing in any way! I dont judge anyone for taking whatever meds they take, goodness knows we would all take a wonder drug that took this away but we all have to find our balance of meds and treatments for ourselves. Narcotics and similar drugs have serious side-effects, and long term use can dull their effect. I'm 42, much older lol , but it's one of the things I took into account - I might have another 40-50 years of this, so I'm trying to save the big guns for if (big IF) things get worse.

Kemily, i hope you can find your balance, and a mixture of meds and other treatments that give you the life you want. There's so much that can be done. Having had this for 4 years, and having it severely, must seem incredibly unfair, and I've no doubt that the frustration of your age meaning you still need parental involvement in your medical care is huge. Here in the UK, at 16 you do not have to have your parents involvement, I don't know how it works in the US. But if it is 18, then do look for a child advocacy group near you if you feel you're not getting the support you should - they usually work out of a hospital or centre. But going this alone is a tough road, so keep your relationship with your dad as good as you are able. Family can be rough at times, we all know it.

There's loads of support and kindness here, and usually people in a similar situation who can make you feel not quite so alone...

Take care of yourself, and hope today is a better day for you.

Bram

Emily the no meds route is not a nice experience, I have a neuro-receptor disorder which means I get instant immunity after one dose of any medication. They stopped prescribing anything for me in Nov 2010. believe me you don't have a life without them just a constant struggle to keep going. If you want a chance to survive in High School you need some sort of pain relief, you also need to make sure the school knows that the slightest trauma can cause this to spread and any wound may never heal.