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.

Hi Kemily18,

Like the others have already said, I am so sorry you are dealing with this at such a young age!! Bravo to you for such a strong desire to return to school. Regarding the irritability after the dose of Lyrica changed - this is something I would strongly suggest you get in touch with the physician who ordered that for you. It may be that you need more time for your body to adjust to the new amount but, there are also often timing changes that will allow you the benefits of the meds without feeling the side effects during the daytime hours when you would like to be alert and not irritated. Please contact your doctor and express how it is making you irritable and ask about dosing times to see if there are better options. Also, if you haven't tried Gabapentin or Gralese these work the same way as Lyrica, each person reacts differently to these so it is much of a trial and error in getting the one that works best for you.

Regarding your Dad - have you had a sit down with him to ask him why he isn't scheduling your appointments? I'm guessing he is overwhelmed with CRPS and the effects it has on you and not intentionally preventing you from the care you need. Please sit down with him and express your desire to return to school and the need for proper continuous care. You need him to help you get the tools (meds/treatments/counseling etc.,) you need so that you can get as much of a normal life back. If that doesn't work, I would reach out to a doctor, another family member and ask them to step in and help your dad understand.. like a mediator of sorts.

Personally, I think if your desire is to go to school and you think you can then that is the absolute best treatment you can have at this point. Anything you can do to distract yourself from pain will improve your life. That doesn't mean the pain leaves you but joyful things distract you from it making it more bearable. Don't lose hope on that goal..please. You can do this.. it might not be easy and it might cause hurt feelings but, you can do it.. keep focused on your goal!!

Regarding holistic approaches - I would gladly send you a great book on the many different holistic approaches for pain relief that was written by a doctor at the University of Washing, Seattle. This book is invaluable in my opinion to the daily pain fight we all face. If you send me your email address through a PM I will gift it to you through amazon, that is of course if you would like it.

There are many great treatment options for people your age - have you done much more that what you shared above? The medications you are on are not opiods/narcotics so I would ask why the need to stop them? They are specifically for neuropathic pain and spasticity rather than pain specific medications. Finding out the rationale behind the suggestion may allow for healthy conversation and clarity - please discuss this with all involved in your care.

Try not to worry about new trauma causing CRPS to spread. Sure it is a risk but not everyone has this happen. I have fallen countless times, burned the cwap out of my hand, cut myself etc., and none of those things caused the CRPS to spread to those areas. Living a little more carefully is smart but living in fear everyday of a bump by an unknowing person or heaven forbid you trip is not healthy and will only increase pain/brain connection.

Wishing you the best Kemily18,
Tessa

rough for one so young.
 

i feel so bad for you...God bless you

I don't have any sage advice about your father and dealing with that situation. It sounds rough and others have posted lots of advice already. I can say though that if he's pushing for more natural approaches there is one thing I discovered recently that helped some. I thought that the whole essential oils thing was complete quackery and frankly completely stupid. Then I was with my bff the other night and she saw I was in a bad state and called a friend who does the whole oils thing. She came right over and trialed them on me. I know it wasn't a placebo effect because I thought it was dumb. It's worth looking into, even though they can be pricy. As pointed out, the longer I can keep myself (more or less) off serious drugs, the more I'll have available later. Looking into alternatives to hard hitters is a great idea, but keeping away from the daily dose things like lyrica, cymbalta, gabapentin and the like that have the potential to be really helpful just doesn't seem to make sense to me.