Lisa Folsom's CRPS Story

Listen in as Lisa details how a 2015 injury of her left pinky finger caused her CRPS, her diagnosis, education for friends and family, treatments, and much more. This video also includes subtitles/closed captions.

#RSDSA #CRPS #RSD

[coldhibiscustea]

I'm another CRPS warrior chiming in 👋🏼 Your description of not being able to have a schedule, even your skin hurting, not being able to be touched, etc. is just so 100% what I go through too. I have it all over my body too but I have been so wary of ablation and SCS making it worse and have avoided them so it's good to hear from someone who did.

[cruzan]

Thank you for the information I have crps and am taking it one day at a time

[natsofatso]

I just found out my niece has this CRPS . Thank you for the information.

[Donkarnage]

i was just diagnosed with CRPS. I had never heard of it until now. I thought it was a bad ankle injury that would not heal. This is not fun. Thanks for the video!

[Chelbells]

Thank you for sharing your story. I've had CRPS for about 7years now. The last couple of years have been better thankfully than when it started. Hope you are doing well ❤️

[pipsnmeeples]

CRPS since Sept. 2017.
Thank you! Sometimes it is hard for me to put into terms my pain, my brain fog, my temp. regulations, total exhaustion& inability to get out of bed when flares strike. Regarding my self pity days, I cry, do my poor-me, etc, but I don't live there. I have no desire to make camp there!
It really feels like internet & soc. media, are bringing more people's stories out to share💕 Learning through others.
Thank you! Take rest when you can warrior. ~ pam siloti

[elizabethtorres]

I was diagnosed with RSD Syndrome as well, I'm sensitive to temperature and just about everything even my clothes at times. I torn a ligament in my right Wrist, which feels like you hit your funny bone.. Well it starts like that. Then pain, burning inside and outside if your skin. Electricity like sensation out towards my fingers and up towards my arm, right breast and right shoulder blade. If my roommate turns on a fan or air conditioner and it hits my right arm area, the pain is intense. I was told that my surgeries were denied.. I was also diagnosed with Carpal tunnel as well. Outside need to completely cover it, cause the outside breeze also hurts. My meds only work for 6hrs.. I walk around like Cinderella, trying to see doctors, do some food shopping before it wears off, and before the Supermarket cold air goes through my clothing.

[wclawyer]

Thank you Lisa.. you have inspired hope for the day. Once again I am blessed by the courage of another Warrior.. we are not alone. I hope to finish a song I have written for all Warriors in the coming months and hope to post it as my way to give back hope to face another day of this horrid disease.. We overcome CRPS daily! Bless You!

[santanajordane]

Due to an accident I had at work year and now I stuff with CRPS/RSD disease. I was on medication for 6 months and than they lower the dose. To come off the pain medication 💊. I can tell you that I got real sick over the winter season 🤧. For two to 3months. In the summer time I'm ok until rain 🌧 set in . I can tell you it's not easy living with CRPS /RSD disease. I can't enjoy going out to night life 😪 . I understand but my family find it hard to get there head around this . From this accident I had I broke my right wrist and damaged my finger s . Now I have noticed my right hand is very short. I can't work as a AIN NURSING .

[erinfirst]

Thank you for sharing your story! I have lived with RSD/CRPS for 29 years since the age of 16. I've tried all kinds of meds & injections. I have a spinal cord stimulator, sacral nerve stimulator and an intrathecal pain pump with Prialt. I have a neurogenic bladder and gastroparesis because of CRPS. The pain is no joke. I have to advocate for myself all the time.

[michellebaker]

Thank you. Here I thought for some time I was the only special person out here to have CRPS/RSD .
Some years ago I got it from braking my wrest in 2 places but since then I was told to never have surgery but I had to have another back surgery ( which was my 4th and that’s when it jumped ) and my back Dr pretty much called me crazy because I said IT JUMPED, I worded it wrong for him.🤨back to my journey..after 4th back surgery I seen signs of it in my left foot. As time passed sure enough!! So I set here with the blue leg and hip down of pain ( still getting blockers ) and a jacked up hand . Trying to get through my days. I’m 56 years old and have and am raising 3 grandkids by myself. This is a tough life the Lord has chosen for me. But we must keep going. Many days we just don’t want to or don’t think we can. Because here comes more needles, I hate those things 😉.
I think you for your video and you nailed our pain . It is different for everyone and every day it’s not the same/ or it’s the same however you look at it .
Just trying to keep it light so we don’t cry. I have those days way to often.
I’m here if anyone needs to talk .
Keep the fight spoon bunny, and thank you for sharing your story with us .

[HonJennCoffey]

Thank you so much for sharing your story! You Rock!

[jillwyatt]

Dear Lisa! Thank you so much for the sharing. I had a total right hip replacement (at the young age of 57, due to extreme pain, had to walk w/crutches) February 2016. When I asked the hot shot ortho surgeon about the possibility of the CRPS I got after a severe broken foot in 2000 (7/1/2 months in a boot because my body wouldn't tolerate a cast, bone growth stimulator, fighting for a diagnosis) moving to the surgery site I got a wave of his hand & "you won't get that in there, everything will be fine"! All he needed to do was LISTEN and perhaps do some research, because in my world the doctors don't know much, or anything about this! I knew something was horribly wrong from the beginning, even though I was told I'd just had a very extreme surgery. Months & months, being tossed around by doctors, tests, being treated horrifically by the doctors went by. Demanding another opinion from neurology, knowing what I had, actually asking neurologist why they wouldn't give me a diagnosis, he pulled his chair close to me & gave it to me. Then the fun really began! Fighting medical beurocracy & trying to find an attorney & a treatment plan. I was treated completely awfully by pain management, even though they verified the diagnosis. Can't do ketamine as I have such a sensitivity to drugs. BAD reaction to anti depressants, no nerve blocks as they were fearful I'd get CRPS in my back at the site, so same with pump. I'm on gabapantin, & norco, as they say the only thing they can do is help manage my pain. Also was told my presentment is quite unusual, which was told to me in quite a challenging way, even after the specialist confirmed diagnosis. I've tried to get a referral to an outside specialist which they will not grant. I walk with a crutch. My horses, hiking & lots of other physical activities are gone. I broke my hand 2 years ago & got the beast in my hand, which, thankfully, has for the most part resolved itself. In the last few weeks something is going on. I know the beast is now around me and up my back, down to my knee, but now the pain is through me, inside me, like a giant stake being pounded through me, into my bones. Isn't it strange to have such pain that may seem like it's in my hip joint, but it is prosthetic, so how can that really be? Recently I was trying to find information on how "full body" CRPS is diagnosed and had no luck. Oh, this summer I severely sprained my left ankle, which I'm still having issues with. I tried weaning off gabapantin and was completely debilitated. I'm hanging out here with no care. I'm very active, huge vegetable gardens, was taking ceramics before Covid, not one to give up my life! Sorry this is so lengthy. Sometimes I think I would like to speak publicly to help others, to keep moving, to find a creative outlet. The lapse into the newish & horrible pain is most likely stress induced, with how affected I am with the state of the world at present & little body very susceptable to "fight or flight". Just needing to talk, as I need to go haul firewood and get some chores done. I have 5 1/2 acres, my dream, that looks like a disabled single woman lives here! Thank you for helping others.

[barbaraearl]

I have had CRPS for the last 5 years also, from spraining my ankle. It has since jumped to my other ankle as well. The best thingI have found to help is not eating any inflamatory foods. No sugar, no white flour products. It really helps, I can go weeks now without a flair. If you want to give it a try, you have to go at least 2 weeks in order to see if it will work, then eat some sugar. I can tell within 15 minutes after eating sugar. The pain comes right back. Hopefully it will work for you. God bless.

[DrWelp]

21+ years and still going. CRPS has changed my life dramatically. It now affects my heart. The constant pain caused Prinzmetal’s Angina. It sucks. I wouldn’t be here without gabapentin and Cymbalta.

[tomkatz]

Thank You for sharing this, I have RSD and it's the most painful thing I've ever had in my life., But I refuse to give up. I have a nevreo nerve stimulator implant.

[anne]

Thankyou for sharing your story & I’m sorry you have been & going through so much extreme pain! I too have Crps2 but of the face/head & my journey slightly different to yours, but the same.
To hear your experiences with Crps has personally validated for me, this is quite the frustrating whilst in debilitating pain, a definite ‘learn as you go’ process for us all. Thank you again for sharing your difficult experiences & your wisdom! Stay strong warrior sister!! 💜🙏🏻

[tamarawuerzburger]

I feel you 🤗 l to have dealt with such pain I woke up with my right leg completely Numb could not get out of bed 2yrs ago and CRPS has taken over my r leg is still numb up to my knees almost I can't wear socks or shoes most the time people do not understand CRPS because of the weird symptoms I soak my clothes sweating 🥵 so much more to this!?!!!! God bless you will keep you in my prayers 🙏

[dannjordan]

I have had all of your procedures and have had the same result. I lost my husband to divorce because he couldn’t handle seeing me in pain anymore. I had to recently move and my new foot doctor just brushed me off as I am a hypochondriac. I am now a single mother trying to raise two boys. I wish more was known of this disorder. I have been dealing with this since 2004 and still haven’t found what works for me, as each new doctor wants to do the same things all over again, even with my records from previous doctors thinking this time it will miraculously work. I have an internal nerve stim and it does help and it stays on 24/7 as I am afraid of how much more I will hurt when it is off.

[sharonsocoloski]

I get it! I injured my right ankle back in July 2020. It hurt constantly and was told nothing wrong. It is "deformed" swelled & I must use walker. My bf found a foot dr/surgeon to cut my nails. He said immediately you have Reflex Sympatetic Dystrophy. I need to see a neurologist. So, here i am. Exactly, I can't always make appointments. I also have "2" sets of "13" stairs that are excruciating! I get, the pain. I also have an old back injury mid thorax compression fracture. I'm on pain & no one understands.