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05/02/2012 11:05 PM

Hi, I'm Peacefrog...i have no peace only pain

rsdpeacefrog
rsdpeacefrog  
Posts: 81
Member

Hi everyone...I'm new here. I've spoken already to a couple of you and it has helped me so much to purge my pain with those who can relate. I finally did my profile and hope that I can update it in the future with more positive things about myself. I'm a female gulf war vet, that's something I'm proud of. At this moment I believe I'm in the middle of a spread from my leg up to my face, but I'm not sure. The burn is unmistakeable but it comes and goes, the headache is near constant. I dont have any swelling, perhaps a little, but my face only looks a little flushed. I just feel like my face has a bad sunburn crossed with a beesting and allergy. What does this mean, please share your spread stories with me. I cant find much about crps in the face. Thanks for being there.Ermm Ermm
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05/02/2012 11:37 PM
cindy61
cindy61  
Posts: 540
Member

There are many things RSD or CRPS can cause. You may get some of these problems and others you may not. Some don't happen right away but happen with time. For instance my pain and burning feeling came 1st in my neck, shoulder and left arm. (it started after a fusion in my neck at C4,5 and6) also my hand felt numb and like it was freezing. In time I lost all the hair on my arm and it turned red with some small sores at times. If I stand to long it turns more of a purple color and my hand is blue. It has been 10 years now and it is pretty much everywhere but the lower part of my left leg.

I hope this helps, Cindy


05/02/2012 11:59 PM
rsdpeacefrog
rsdpeacefrog  
Posts: 81
Member

Thanks Cindy......it does help to hear our stories. 10 years is such a long time to be in pain. I'm sorry and I feel your pain....although the thought of dealing with this for 10 years is just a death sentance right now. I don't deal with pain well. I often have to just lock my bedroom door and crawl into fetal position and suffer. Burning, to me, is the worst type of pain. I hope that maybe tomorro, the pain in my face will be gone.

05/03/2012 06:18 AM
mike1024
mike1024  
Posts: 924
VIP Member

Hello and Welcome to the group.18 years with the MONSTER.

05/03/2012 06:32 AM
rsdpeacefrog
rsdpeacefrog  
Posts: 81
Member

Hi Mike...I have a brother Mike...how do you bear 18 years? How do I bear another day. I don't know if my monster is spreading or if I'm stressing myself into spread

05/03/2012 05:16 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Rsdpeacefrog,

Whatever things help you the most with remaining calm, try to focus on those things right now. If you focus on the pain and where it is, it will only make things worse. Now's when you want to know how NOT to focus on pain, when pain is what screams at us for attention? That answer is different for each of us. For some it would be a funny movie or a weekend of funny movies, for another it's being with a best fried, and for another it's reading their Bible. Some might do all three or something else entirely. I say to do this because the stress really does make the perception of pain worse. I've been in a situation with a family member where my pain went from a 7 to a 9 in a few minutes. It really did. So, because you don't want to hurt more than you have to, think of everything that helps you and distracts you, and DO those things as much as possible.

I've found recently that when my feet are burning like they're on fire it helps alot to get epsom salts in a plastic bowl of cool water, and lavender oil, and it's relaxing as it seems to take the burn down some. Maybe that's something you can do in a tub. Mainly however you can calm your mind try to do it as that will help you control the pain. I don't mean to over-simplify this to tell you that intense pain can be greatly helped by watching a funny movie. I only mean that it will help you and your experience to do as many calming and positive things you can do and try to relax as much as possible. I wish I could tell you this without it sounding so silly, so I hope you know that I don't mean that it's easy or simple. But, it can help control the pain.

I know that the thought of having this pain for 10 or 18 years is VERY scary and that is something that scares me, too! That's when I try to truly tell myself that I will live with this only one day at a time. I can get through today. I can even find a way to do something good for someone today, even if it's just a smile or a nice email. It's more easy to see just getting through one day of pain and that really is all I have to bear today. The other thing is that we need to stay hopeful that a treatment will help us or that medications will be more effective for us. I don't think it's crazy to hope for a good outcome through some kind of treatment or intervention. I hope this helps a little tiny bit.

Thinking of you,

gail


05/03/2012 05:18 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Oh, I forgot something important! Thanks for your service to our country! I know you must be very proud of that as you should be!

gail


05/03/2012 09:01 PM
cindy61
cindy61  
Posts: 540
Member

By the way I forgot to tell you my son is in the 82 Airborn infantry and is in Afghanistan and Iraq before that. Thank you for your part in serving and protecting this country!!

Cindy


05/05/2012 01:53 AM
scorpioj
scorpioj  
Posts: 1392
Group Leader

Hi Peacefrog!

What a cool name!! Welcome. Serving your country is something to be proud of!! Your country thanks you!! I am in Canada, but recognize the wonderful service you provide to my next door neigbour.

I hope you do find some peace and can lower the burning with the right meds and alternative treatments that others have posted. It is a horrible "Monster " illness this RSD. I have had it for 5 years and it has spread upwards from the right knee,calf and foot to include the upper thigh. I have started to have some burning in my back, since my dad reached the end stage of palliative cancer care and his passing recently. The stress seems to have triggered a flare and possible spread.It is such an unpredictable disease that Gail's advice is the best to follow, take it one day at a time and if necessary-one moment at a time.

Wishing you pain eased days and nights,restful sleep and joy in your life,

scorpioj

PS Spreads usually travel upwards on the affected side of RSD or spread to the other limb or side of body. It can be in the face. A woman in my first pain group had it in her left hand and it went up to the left side of her face.

Post edited by: scorpioj, at: 05/05/2012 02:03 AM


05/05/2012 05:59 AM
rsdpeacefrog
rsdpeacefrog  
Posts: 81
Member

Hello My Canadian Friend and Scorpio....I'm a Piceis so we may butt heads. Butt my head is on fire right now so I'll just share a funny story: When I was stationed in Rochester, NY on lake Ontario, we shared the lake with the Canadian Coast Guard. On one of my first missions as crew on a 44 ft Motor Life Boat in 10 foot seas, my Chief told me that the Canadian CG would be sending a helocopter to lower a basket to our boat and I would play the patient and get to take the fun basket ride up to the helo. Well your fine service men chose to dip me into the freezing water as a joke. It was the ride of a lifetime. Your guys were awesome and I had a blast with them. One gave me his stripes for a souvenir. I was so jealous of the fact that your CG gets to have long hair and beards if they so choose and I had to chop mine off.....hair not beard lol.
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