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CRPS out there?

May 22, 2016 6:56 PM

Does anyone have CRPS? Complex regional pain syndrome, also called Reflex sympathetic dystrophy. I was diagnosed with it 14 years ago at age 22. Because there were no treatments, cures, or medications that worked for me, I did not believe the diagnoses. It was my way of fighting to hold on to hope. I am 37 years old now and am working on accepting life with chronic illness instead of angrily fighting inside. Please respond if you know anything about this illness and/or can give support. Thank you!

May 23, 2016 1:02 AM

Welcome to the group, you will find there are lots on here with CRPS/RSD, who have a wealth of knowledge. Hope you can connect with them......They're all lovely๐Ÿ˜Š

May 23, 2016 9:21 AM

Hio invisible pain, sorry you're dealing with such a tough illness. I'm 15, and had CRPS, it's mostly in remission now...
I've tried a lot of things to deal with my pain. A couple things that helped a lot were DMSO (used on horses, can be found at a farm store) and kava kava root.
DMSO made my nerves stop taking out as much, so I could do physical therapy without screaming. The kava just helps with pain.

May 23, 2016 11:09 AM

Hey there I've had crps since I was 11, so a little more than 8 years now. I've been in a "flare" since early October of 2015. And can't seem to get out ofz, so I dont think I have any advice to help but I'm here if you want to talk

May 23, 2016 2:25 PM

Thank you for responding! I think the trauma that started my CRPS was a steroid shot from the top pain management doctor at UCSF. So many years later, I can walk a little if I'm having a good day but have constant pain. I have been doing a number of medications, creams, laser therapy. I just started TENS which helps but the relief doesn't last more than 30 minutes. I found an Omron unit that I can use at home. I have "cold CRPS" and may try other medication that I have been researching but not yet found a doctor who specializes. So frustrating!
Does anyone think that continuing walking on my CPRS foot would actually not cause a flare-up one day? I read that the affected limb needs to stay active but I continue to get flares when attempting to walk, even short distances. Thanks in advance!

May 25, 2016 11:23 PM

I have had crps since I was 7 which is really rare for someone to get at that age I'm 12 now in the middle of a 4 almost 5 month flare up.i hope that us Crps people can be better friends and help eachother with our experience

May 26, 2016 1:41 AM

Yes, I am here and I believe others are too. I haven't ever known anyone personally with this illness before. Feeling understood here is so helpful. I keep trying all sorts of supplements, medicines, treatments also, if anyone wants to talk about that also. Grateful to have all of your support and understanding!

Jul 05, 2016 8:04 PM

Hi invisible. I posted a post already in a topic titled 'New Here CRPS Diagnosed'. Please read it if you can find it? I want to copy and paste it into here, but I don't know how to do so or even if it is possible.

Jul 05, 2016 8:05 PM

I know it may sound like I'm being lazy but I can't stop crying because pain so bad and I can't rewrite it. I'm really sorry to be a pain. x

Jul 05, 2016 11:23 PM

Ice, please don't feel badly for apologizing about being in pain or crying. I've learned that this is a SUPER supportive group and will offer all kinds of ideas of things to try. Is there anything you can do to distract yourself from the pain to get some rest or until you can take your meds again?

Jul 08, 2016 8:09 AM

Absolutely!!! Thank you Southern Sweety for saying what I was thinking, I am catching up on feeds and am just seeing this now. How are you doing now IceQueen?

Jul 08, 2016 9:36 AM

Invisiblepain, I don't have crossed but many here do. And I'm sure they will be able to offer supportive suggestions. Just a thought I had, concerning the question you had about walking on your foot...I have problems with my balance and the bottom of both feet (surgery on one already), and I wear special molded to my feet Orthotics. Is there some type of foot/ankle support orthotic that could help cushion your foot from pain? I'm thinking it would definitely need to be soft material touching your skin. I've found that I have to buy the expensive supportive shoes to wear, with wide tire boxes, for the best support and comfort. Hugs & prayers you can find ways to help! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Jul 10, 2016 6:10 PM

I was diagnosed with fibromyalgia and RSD last year. Mainly in my left leg. None of my pain meds work anymore. I even attempted suicide because I couldn't take the pain. In the hospital they lowered me down to percocet from dilaudid and I was so sick, scared and in unbelievable pain. I am now trying to take less dilaudid, but today and good friend told me that I looked terrible, grey was the word she used. I feel terrible but I am trying to move so I can't really just relax. If you ever need me, just to vent. I am here. I hate this disease, it has ruined the life I once had. Still I know that helping others with RSD will mentally help me. I am 43 and walk with a cane. What comes next? Sorry to vent, but I am here for everyone who suffers from this hellish disease! Sending light and love.

Jul 10, 2016 11:58 PM

We are here! Yes, CRPS is awful! Until this group, I did not know anyone else who has it. Emotionally, it's a huge difference. ๐Ÿค•โค๏ธ

Jul 12, 2016 10:53 PM

I have CRPS too since 13yrs ago in my arm. Now I supposedly have Fibromyalgia too. Except that pain started right after 2 rose thorn pricks and roses carry a fungal infection that can cause joint pain. No one will test me for that and they just say it's fibro :( I also had a bad spinal block before surgery (5 missed sticks) and now have severe back and hip pain. Supposedly that is just about RSD flare...
It really sucks! I had gotten to a good point with the RSD and felt really good about how I was doing. Now I ask for help at the grocery store and wonder which day I will fall down the stairs because my ankles locked again.
Luckily there are wonderfully supportive people here!! It does help to be able to vent and talk with people who understand.

Jul 13, 2016 10:22 PM

Hey everyone! My name is Melissa. I am 25 years old and was diagnosed with CRPS 5 years ago. I currently have a neurostimulator with a percutaneous lead. Shortly I will be switching to a paddle lead for coverage of both legs. In the year and a half since I had my stim the CRPS has spread from my whole left leg (it started around my left knee) to now both whole legs.

I am a medical/surgical nurse at a regional medical center. I work 3 to 4 12 hours shifts a week. If you have medical questions don't hesitate to ask me. I will respond within my legal abilities and scope of practice. I will always suggest seeing your doctor for definite help.

Jul 13, 2016 10:41 PM

Wow, thank you! What is a Paddle lead vs a percutaneous lead? Have you heard of the local stimulator that doesn't have to be implanted?

Jul 13, 2016 11:52 PM

Local stimulators are what they use in physical therapy. For CRPS patients they usually don't work because they are placed at the site of pain not on the nerves of the spinal cord. CRPS is a central nervous system defect so stimulators will only work if they are applied to the base areas of the central nervous system...which is the brain and spinal cord.

Perc leads are small cylindrical string looking things that are surgically dropped in the epidural space of the spinal cord. They are held in by scar tissue only and are a good first step and for people with only one limb affected.

Paddles look like a paddle. They have multiple leads woven in them (how many depends on the size you get). The paddle lead requires your pain doc and neurosurgeon to place. The neurosurgeon has to do some vertebrae work so the paddle can attach onto the bone.

There are also MRI safe Stims and non MRI safe stims.

Jul 14, 2016 6:58 AM

Welcome RSDNurse! Thank you for sharing this info. I don't have CRPS but I be had a doctor mention neurostimulator treatment. Thanks again! Have a blessed day!! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Jul 14, 2016 6:10 PM

Oh wow, thank you for all of the information you shared RSDNurse!

Jul 15, 2016 8:05 AM

I have had crps for 19 yrs and finally got approved to try ketamine. Chomping at the bit to get in now. I will let you know if it helps but looks like it won't be until November.

Jul 15, 2016 4:34 PM

I've been given ketamine several times in the ER. While not at the dose the trial recommend it did help some

Mar 07, 2017 7:00 PM

Hi invisiblepain28 I am new to this app but also have CRPS.
I was diagnosed after a car accident at Christmas 2015.
I don't have much to offer for advice but I also just joined this Vecttor group that uses a machine developed by a Dr who suffers from crps personally....not sure of all the details but seems to be amazing and helpful to many people.
I suggest looking this group up on Facebook (picture attached)
Wishing you a pain free day โค

Mar 07, 2017 8:15 PM

Have you considered spinal cord stimulation? Please direct message me
If you have questions

May 08, 2017 12:58 AM

I was diagnosed with RSD/CRPS in 2006 so in April I officially rolled into year 11. Mine I have been told has been unusually aggressive and is now full body and involves several organs as well. You know how they say that only 1% of the people will have this or that type of complication. I have consistently been in that 1% over the last 11 years. Now if that only worked as well for me with the Lottery I would be sitting pretty LOL.
If there is one thing that I have learned your mental health, your outlook towards life is every bit as important to pain control as your medications and activity.
It took several years to climb out of the black hole of depression caused from pain and being informed just 8 months after I was hurt at work, 7 months after my diagnosis of RSD/CRPS, Iwould never work again as a nurse and I would be in a wheelchair full-time in less than 3 years. I started trying to change my outlook by finding one thing each and every day to be happy/thankful about and I could not repeat what I had previously used. I have to admit that it was a lot harder than it sounds. Some days it might only be the sky was blue or the sun was out. Eventually I started to see more positive things in life than negative things. The more my moods truly lifted the easier it was to deal with the pain.
I have been through the gamut of medications. I am still on Federal Workman's Comp so I am unable to try any of the THC based meds, oils or pot. I have had tens units, the old style SCS, Spinal Cord Stimulator and the new style as well. I also had a pain pump for a few years.

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