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I don't know what to do

Oct 16, 2015 7:21 PM

I have CRPS and it is currently my entire body. I live with my boyfriend and it is taking a toll so badly on him. I feel like I'm the reason he is always upset. But I can't do anything because my doctor isn't doing anything that is actually helping. I'm getting severely deppresed lately. All I want to do is sleep but I can hardly do that from the pain. I can't get up and walk I can't do anything at all.

Oct 16, 2015 8:30 PM

JennaReimer, I'm sorry you're having a hard time. Have you tried to talk with your boyfriend? Is there a support group locally that you two could go to, that would help you both? Our community hospital offers support groups of atop types; ADHD, cardiovascular, Alzheimer's, depression, etc. Hugs & a prayer! 🙏🌼

Oct 16, 2015 8:41 PM

Hi Jenna,
I have (had...?) CRPS, and mine spread full body so I needed a wheelchair, and basically dropped out of my 2nd semester freshman year. I'm 15 now, and have been fortunate to gain much function back. I always have a few questions, if you don't mind me asking.

How long have you had it, how long since diagnosis?
Do they know the cause, or is it an unknown injury?
Which limb did it start in?
Is a limb broken?

Okay, first off, I totally understand the guilt of being help with everything. I needed my new roommate (who I'd only lived with for a few months) to take me to the restrooms. My dad had to dress, feed, and carry me. My friends would take shifts pushing me around the school.

Strangers were willng to help push me around, even when some of my friends ditched me. I couldn't walk, failed all my classes, except for a C in theater, and felt like crying every single day. Depressed, and wanting to die, I could only lie on the couch singing and watching the dust drift throughout the room.

Anyway, I eventually got some treatments from my dad, which are what helped me get better.

Please, if you can bare it, try DMSO. You can find it at a farm supply store, and it's fairly cheap. Be aware it says not for use on humans. However, I would not be walking without it. Also realize, I did have a lot of pain, learning to walk. I just had to get through it, but with DMSO the pain was about equal to being still.

Things to try:
Kava kava root
Magnolia Root
Quinine (tonic water)
Lemon Balm

I have more info on these, if you want it. So sorry you're facing this disease. My aunt and I have it. I you have the chance to get better!

Oct 16, 2015 8:53 PM

Hi ferret
I have had it for 7 years since I was 11. It started in right leg and was injured from playing when I was 11. And what is DMSO?

Oct 17, 2015 7:21 AM

Hi Jenna, welcome to the community. I am sorry that you are in such pain and having such a hard time. When you are in pain and living with someone, it takes its toll on everyone around you. It is very hard for someone who cares for you to watch you suffer and know that there is nothing they can do to help you. Perhaps if you sit down and have a conversation with him and let him know that you have noticed he is upset a lot and that you are feeling that it's due to your pain issues and what the pain has taken away from you. Be honest about how you feel and that you know he can't help you but that you need his understanding and that if you're having a bad day, you may need to have him just hold you or chat or simply just chill out and watch a movie together to help you feel better. Let him know that you certainly didn't expect to end up like this (nobody expects or wants to be sick). Know that you can always come here and there will be many folks who will be right here to keep you company and try to support you through crisis. Also that we all understand. Sending you {{{{Hugs}}}} and you'll be in my prayers. 🌻🙏🏻

Oct 17, 2015 12:58 PM

DMSO is the acronym for dimethylsulfoxide, an industrial solvent sometimes used to treat arthritis in horses. That's why you can find it at a farm supply store. The US has not approved for human use, although there are some doctors who have had success treating patients with DMSO. One thing to remember is that, technically, water is an industrial solvent.

There are different strengths, I use the 99.9% purity, 70% by volume type. At first, I got a slight rash, but alternating the liquid kind with a rose-scented version helped my skin not dry out. You can also drink it, but it tastes/smells bad.

My worst side effect has been people thinking I smell bad. I only got a skin rash once, and was fine after that. It was similar to (if you've used) hot and cold, menthol/aspirin rub. The first times the worst, feels like a sunburn, but it gets better. Plus, DMSO doesn't hurt like that does.

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