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CRPS, just diagnosed...pain intolerable--Who Else has this?

Aug 17, 2015 4:04 PM

I was just diagnosed within the past few months. I am 44 years old...I used to do Krav Maga twice a week in the dojo...I have always been active and have a high tolerance for pain...but now...My pain on most days is intolerable. I recently was put on oxycodone in the past few days...not really any relief as of yet. My pain onset on October 8th of 2014 without any warning. Does anyone else suffer from this disease?

Aug 17, 2015 10:08 PM

Hi my name is Kristen. I am 19 years old and I suffer from RSD/CRPS as well. I was diagnosed at the age of 14-15. I have been suffering with a lot of pain this past year. I am so so sorry to hear that. If you ever wanna talk just message me.
Hope you feel better!

Aug 18, 2015 1:26 AM

Hi, I'm Trinity and I have CRPS, although I'm doing a lot better than I was. I'm sorry you have to face this, my aunt was recently diagnosed, but has been in a wheelchair for the last couple of years. I have ideas for mostly alternative treatments, but I know the normal treatments can work better if it's caught early.

I had pain in my wrist, it just progressed, but I ignored it, until I had to stop using it. It spread full body within a year of the wrist pain becoming unbearable but my doc kept calling it carpal tunnel
Some things to try, though...

- Iodine, whether you speak in betadine or eat seaweed, or drink the extract, this nutrient has been taken out of common foods and replaced with bromine. It just helps overall pain, and my dad has said it's stopped migraines.

- Kava kava root - this is a muscle relaxer traditionally used as a tea. There are a lot of reports of liver damage on sites against alternative medicine, but I haven't had any issues. It can numb your mouth, so some people prefer the pill.

- Magnolia Bark Extract - general pain killer, it has stopped hallucinations (caused by CRPS pain)when taken with kava root. It gets crap about rate of death, but the plant was being replaced (accidentally because the plants look similar) with a poisonous plant in a combo drug
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- Avoid Tylenol/Acetominaphen/Paracetamol - there is evidence to suggest that this drug can make nerve damage (like CRPS) more permanent

- DMSO - usually used in horses, this helped me walk. It smells/tastes bad, but orange juice makes it easier to stomach. There is a doc who has reversed paralization with IV DMSO. Some people get no effect. It is technically an industrial solvent, but so is water. If you go to the ER, people will think you're crazy for taking it, because they think of glue. Also, it can effect how time released meds absorb into your body.

- LDN - feels like energy to me, but it helps the body make its own pain killers. It can also make prescription drugs not work. If you don't wean off of opioids beforehand, you will likely get insomnia and a bad headache. My dad and I made an instant switch.

- Tumeric - tastes bad but helps with general pain

- Horny Goat Weed - a plant that increases circulation, which is how it got its name. Blood circulation doesn't work in limbs with CRPS, but this can help if you feel hot, cold, or numb.

- Garlic - potent painkiller, best if chewed and swallowed

- Quinine - Tonic water is available at most grocery stores, and has been used to treat military wounds and also malaria. It has a ton of sugar added, because most people think it tastes awful, but by the time you've tried everything I have, it just tastes like sugar.

I hope you find something to make the pain bearable. Best of luck!

Aug 18, 2015 10:17 AM

I have been diagnosed with CRPS/RSD and it certainly is VERY painful. The pain can change over time, move, come back, etc.. Many times it manifests in an area that sustained an injury or an area where you've had a prior surgical procedure. I hope that the doctors are able to work with you with medication (or a combination of medications) and bring you some relief to the pain you are experiencing. I also hope that you find the support and comfort that you need here with our community family. I wish you all the very best and will keep you in my prayers. Remember, YOU are your best advocate!! Get printed information from your doctors or reliable medical websites (like Mayo Clinic) on your condition and educate yourself on it. See what symptoms are similar to yours and what treatments are offered along with any you may have already had. Just know, if you need support, advise, to vent or just someone to lean on, you're in the right community. There are many kind hearted folks here always ready and willing to help if they can. This group had certainly been a Godsend to me. Again, all the best and welcome to the group. 🌻🙏🏻

Aug 20, 2015 10:25 AM

My pain over the past few days has been so unbearable! I am struggling truly to put a happy face on today. I am dizzy and sick to my stomach. I am sitting here at work now as I type this thinking...why am I here.

Aug 20, 2015 11:11 AM

Praying for you Crps. Do whatever you need to do to take care of yourself today. Otherwise you may be down in the bed more than a day. (((Hugs))) 🙏🌼

Aug 20, 2015 9:10 PM

So sorry, it's definitely a horror to live with, and through. I started singing when all else failed. No walking. No art (something I love) and my dreams flew out the window. Still, there's eventually a beauty that came for me, after losing track of time. There's good times and there's bad. There's pain when I'm sad, there's pain when I'm happy. I've seen lists with the most painful conditions, CRPS is usually at the top.

I don't know how my aunt is surviving it. She's been in a wheelchair for years now, but it's somehow still humorous outside of irony. I can laugh a lot, but I'm just glad that some people have pain meds help. You might keep asking why am I here. I know I did. Even before everything else.

Depending on where you live, Ketamine might be an option.

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