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.

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.

Kemily - don't let the wounds thing freak you out - this is extreme cases. After 4 years, you've probably had the odd skin injury already and know how your body reacts and heals. BUT we do need to be careful with things like needles (ask for paediatric ones, and only in a non-CRPS limb if you can), BP cuffs (non-CRPS arm if poss.) and being careful with wounds until they heal. Daily vitamin C (500mg daily) has been proven to reduce the risk of spread, and I think quite a few here take it (not recommended if you suffer from kidney stones though).

Bram.