Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

CRPS/RSD

Apr 09, 2015 9:03 PM

This is my first time using this app I just downloaded it and I love what it's all about. My name is Sarena-Rae and I'm 22 years old. I was diagnosed with CRPS type I in September 2013 and within three months was diagnosed with CRPS type III. It hasn't been an easy road; at this point I've undergone 13 different surgeries and procedures since November 2013. I have used all these hardships to learn more about not only my disease but all chronic pain. I manage a like page on Facebook for CRPS awareness and am an advocate in the making. Some people in my area know me as well as those not so close to me. I love to help people and give positive outlooks to everything. If anyone just wants someone to talk to or has any questions please feel free to respond I'm a very open person and will answer anything that may be asked! Thank you all and I hope you're all having a minimally pained day.

Apr 09, 2015 9:56 PM

I noticed this was titled CRPS/RSD is CRPS the same as RSD? I have a frind who battled RSD for years.

Apr 09, 2015 10:46 PM

Yes CRPS (chronic regional pain syndrome) is the newer known name for RSD it's more medically accepted

Apr 10, 2015 5:42 PM

Do you use a wheel chair?
I use a cane for short distances, and a fold up walker (I use it like a wheelchair)
Have you found any treatments that have worked for you?
I just want to ask tons of questions because I'm curious.
I'm 14, and trying to figure out what I want to do when it comes to my future, whether school or job possibilities.
Was your CRPS caused by surgeries?
Have you tried physical therapy?
I'm about to start physical therapy, and I'm nervous.
What are you passionate about that you can do?

Apr 10, 2015 11:55 PM

My RSD came from a broken arm so far I've done nerve blocks and two failed spinal cord stimulators and it's been suggested to do a morphine pump but I'm not fond of the idea. So far I've refused any walking assistance although they've suggested it And I do own a wheelchair because I'm sure I'll need it if I can't find relief soon. So far I've tried physical therapy occupational therapy and Aqua therapy with no relief. Right now the only thing I'm truly passionate about is spreading awareness to RSD and other chronic pain illnesses which I do through a like page on Facebook and am an advocate in my local area. Feel free to ask any questions I'm more than willing to answer anything. Is yours only in the legs and how did yours generate?

Apr 11, 2015 12:37 AM

My RSD is in both of my wrists, and my right leg.
I've always had pain in my right wrist, and I could feel pencils grating in my fingers, all the way up to my shoulder.
People said it was because I didn't hold the pencil correctly, but the "right" way hurt worse.
I kept pushing through pain.
It was worst in 7th grade when every week we'd have to color a map with pencils.
My wrists would hurt for 2 days straight after each map.
I don't know why, and when I asked my doctor about it I heard carpal tunnel.
Near the end of 8th grade my right wrist hurt constantly so I stopped using it.
Even after months of not using my right hand at all, it still didn't feel any better.
That's when the I knew it wasn't carpal tunnel.
I started writing left handed.
It started hurting the same way.
My dad and I started doing our own research.
The burning and tingling sensations were awful.
It was obviously spreading.
I dropped Orchestra.
I tried to stop drawing and writing and playing the piano which I love.
I changed doctors after the same one said it had to be carpal tunnel, and that I should be in an antidepressant to stop worrying so much.
When I came in almost puking from my hands sensitivity, she told my dad I was faking it and said he should not support teen addiction.
My dad believed me, which was lucky.
The next doctor said it was outside of her expertise, and sent me to a pediatric neurologist.
He said it looked like CRPS, but he could not be sure.
I started gabapentin, which took the edge off my burning pains.
My dad did his own research, and gallium was found to help with arthritis.
It helps a lot.
My hands got much better, but I knew they could get bad again.
I now use a tablet for school work, and use voice recognition as much as possible.
My leg is recent.
I could feel tingling at first just near my knee.
I was dancing, and had the chance to join a performance.
I felt my keg going through the same process, from tingling to burning to cold to numb and sensitive to being anywhere.
There is a strange grinding at my knee, and a part of it is wiggling.
I don't know how it started.
I just know that I want to go back to the things I love.
I want to draw.
I want to write.
I want read.
I want to walk.
I want to hike.
I'm hopeful, but am not certain about the future.
I wonder how it'll all turn out.

T

Apr 11, 2015 12:03 PM

That's horrible especially so young but I definitely understand that mine started when I was 14 and I wasn't diagnosed until I was 21 and am now 22

Apr 12, 2015 10:33 AM

It pains me to hear about others suffering from RSD/CRPS. I've had it about 5 yrs now. I just turned 31 last month, so I understand the frustrations of being so young and your life being torn apart by such a cruel disease. I was an Elementary teacher & Kennel Tech, finishing my Master's in Literacy when I first got sick. Oddly enough, this all started with an intestinal infection by Campylobacter jeJuni, which led to a Dx of Fibromyalgia, then CRPS that started in my right foot after being hit by a fly ball.
It has since, quickly spread to full body and is even attacking my internal organs and I feel like my brain because I can rarely think straight anymore and have terrible memory & cognitive problems. I've also tried many different types of treatments. Overall, I am on regular and Extended Release Morphine, Gralise (a long-acting form of Gabapentin that you take at night to decrease side-effects & LLV (Long Life Vitality Supplements) through doTERRA. I also have seizures now. I also prefer Aqua Therapy & Yoga, but can only do either in very small increments.
I have a cane, walker, Service dog & wheelchair (which I hope to never have to use again, but is there if I absolutely need it.
I use the doTERRA Essential Oils along with the LLV and find that i have less inflammation, nerve pain, flares and more energy than before using them. I hope to some day be able to get off all synthetic meds and switch to all natural. I'm also eating as much organic and natural food as possible & have found that helps as well.
I wasn't able to write, grip anything, let alone crochet for over 2 yrs, but can now do it again with limited pain & cramping since i started the LLV & oils. I miss walking, running, 4-wheeling and dancing, but keep trying to find other things my mind and body will allow depending on the moment & the day. I love spending time with my furbabies and also am an Advocate for Chronic Pain in Upstate Ny. It's mostly on Facebook, but we try to get together at least once a yr to share stories and possible specialists & treatments that we've found to be helpful.
I've also found Reiki to be very helpful & hope to see a NaturalPath Dr soon. I'll try to remember to updtae you & let you know how it goes, as I'm new to this app also. Remeber positivity is key and you are not alone, no matter what!
Sending Gentle Hugs & Wishing Everyone a Painfree Day!
Www.facebook.com/chronicpainsupportgroupofupstateny

Apr 12, 2015 10:48 AM

Wow I am definitely gping to like your Facebook page what part of upstate NY are you I'm because I am also in upstate NY. I definitely feel for you and have many questions for you that I will ask you on fb! Thank you for all the great info because I want to switch to herbal medicine and you posted some great info to look into. Best of luck

Apr 12, 2015 11:13 AM

I'm glad that the essential oils are helping
.
I don't know what these count as so far as medicine goes, but some things I've found helpful are:

-Iodine, whether concentrated or as betadine, it seems to help me. It's in seaweed and some salts
-Dextromethorphan (not sure I spelled it right) in certain cough syrups, if it doesn't have the added ingredient that can cause nerve damage, I use Delsym
-Not using anything scented
-Whole Body Vibration, when available (my step mom has a business using these machines, Reiki, and essential oils)
-Magnesium dissolved in water, I spray it on my leg and it helps with circulation
-Potassium, helps with certain spasms
-Kratom was helpful for awhile
-Low Dose Naltrexone (sometimes helps CRPS/RSD go away)
-Magnolia Bark
-Kava Kava Root
-Menthol chest rub
-Caffeine pills (I'm always tired)
-Fish oil

I'm in OR on the other side of the US.
Good luck to you both!
My dad used to live in NY.

T

Apr 15, 2015 3:16 PM

I have crps too. I was diagnosed in 2013. It just keeps getting worse. And the pains horrible. I have it in my ankle. I got it from just getting up. So I know what your going through.

Apr 16, 2015 1:05 AM

They think that I have it in my right arm now. They also say it have it in my right ankle where I had an accident. Can you tell me the difference between the different classes. If I am correct, it is more commont to get CRPD after an injury. The way someone explained it to me and I don't know if it is true is that it is a malfunction of your sympathetic nervous system. After you are healed. You may make a movement or not but all of a suddent the brain thinks you are injured again and will send red blood cells to the site for inflammation, scars will change color, Can you tell me how they diagnose it or is it like fibromyalgia. Is it a diagnosis by exclusion? Thanks for your answers in advance. I have it but nobody is addressing it right now. I have doctors giving norcotics but they never set up other avenues for help with this..

Apr 16, 2015 9:15 AM

It was diagnosed by exclusion for me.
I think it's more common to get diagnosed if CRPS results from an injury, but if an injury happened that no one knows about it seems like it could get misdiagnosed.
The malfunctioning of your sympathetic nervous system makes sense with the Reflex Sympathetic Dystrophy version of CRPS.
I've been on narcotics, but they've never helped the CRPS pain.

Apr 16, 2015 4:37 PM

Ferretbandit, (I love that name so much because I also have a ferret).... You would not get any relief from your RSD symptoms with narcotics because it's nerve pain. I know narcotics are pain relievers but they are not for that type of pain. For that, they try to give Neurontin, Gabapentin, Lyrica and such. Ive been dealing with it for so many years because I would NOT take these meds with the horrible side effects that they have. If it doesnt help, I am very sorry that I was not able to give you something useful. I hope that you and your doctors will be able to find something that helps you heal and feel better

Apr 16, 2015 11:31 PM

I love ferrets!
My family took care of two until we moved to a place without pets.
I still miss them.
I knew I wouldn't get pain relief for RSD, but my doctor kept caning it carpal tunnel and serious tooth pains.
I wish that the Neurontin would go by the drug name, gabapentin.
It would be less confusing.
Today I had my first physical therapy appointment and the lady there has experience with CRPS.
I'm walking a bit, and am hopeful about getting better.
T

Apr 17, 2015 11:30 AM

I pray that they are able to help you. I am in horrible pain today as it's raining. I also have burning nerve pain and it feels like I have white hot coals touching me under my skin, going deep inside my leg and left side of my back. I can't take Gabapentin because the side effects were drastic and the benefits were none. So, I exist on pain killers like Morphine but try to meditate, listen to music, see my neighbors and get out in the sunshine.... When it shows up... LOL!!!! I love my Ferret as well and she just turned one year old. She is a little sable mitt and her name is Mischief and believe me, she lives up to her name... I adore her. It gives ME someone to take care of and get my mind off myself. They are truly fun to watch and she gives me kisses every single day when I take her out of her cage to go in her playpen. I hope that all goes well for you. You will be in my prayers.

Apr 17, 2015 1:24 PM

AlwayZ, what side effects did you have on the gabapentin?

Apr 17, 2015 2:55 PM

Ferretbandit,Alwayz,and Flappsy I have been using Gabapentin since 2000 started out for Migraines,at 300 mg x 4 day, my PCP raised dosage to 600 mg 2 months ago, 2 weeks ago my Neuro increased up too 800 mg 4 x day. About 4 yrs ago I saw a specialist in Houston that treats Syringomyelia put me on Savella 50 mg 2 x day for my lower body's nerves, and it works great. If I run out I get to where I have trouble walking. I believe if I hadn't found this Dr in Houston that I would be in a wheelchair by now.Don't give up keep fighting. Keep you in my thoughts and prayers.

Apr 19, 2015 11:49 AM

When the doctor put me on the Gabapentin, I felt very tired, I couldn't think, I was feeling unwell in general. They started me off on a small dose of 300mg 3x/day, then they moved it to 600mg 3x/day after about a month and then 900mg 3x/day after that. The effects just kept getting worse along with my memory and always felt like I was stoned or something. I can't remember the other symptoms but the doctor said I had to come off because not only was it not helping and making me weird, it was making my blood pressure fluctuate from high to low and I'd pass out. Now, even on all the drugs I take my blood pressure is 120/73 and my heart rate is usually between 57 and 62. (Not bad for someone who is carrying WAY too much weight for my 5'4" frame.). I also was on Neurontin which I was told is basically the same thing and I was on something else but can't remember what it was... OH... Cymbalta. I didn't feel like erasing a whole sentence... LOL!! None of them helped me.

Apr 19, 2015 1:46 PM

AlwayZ, our bp runs about the same. Mine can range 70-84 on top & 118-128 on bottom. My heart rate use to be in the 60-70 range. Then I started having the shortness of breath in January. I ve been put on 5 new meds this year alone. Now my heart rate runs anywhere from 88-98. I thought that was too high. But after my cardio tests, finding the mitral regurgitation & low-norm (barely norm) ejection fraction of the left ventricle, and the fact I have passed out, my cardiologist said he prefers me where I am now.

Apr 21, 2015 11:38 AM

Flappsy, I can sure understand that!!! I have passed out myself. My resting pulse is usually below 60 and if I am up and around it will still be less than 90 but will go up. I also had an issue with being out of breath and feeling funny in the chest and when I went for my workup there were no leaky valves, no rhythm issues and my heart and lungs are healthy. It was after the echocardiogram and the chest xrays that they told me I have costochondritis. I was really worried because so many areas of disease cause pain in my chest, I asked the doctor, how the hell would I even know if I was having a heart attack and she laughed and said, don't worry, you'll fall over and you'd know... Of course she was joking but wanted to lighten my anxiety. The whole thing can be so distressing

Apr 22, 2015 11:18 AM

That's funny, sort of. But I understand wondering how you'd know. I've felt the same way. I have the costochondritis, GERD, a hiatal hernia, asthma, muscle spasms that wrap around the left side of my chest, and now the angina. It's crazy!

Apr 22, 2015 5:09 PM

My CRPS story:
I have never posted anything EVER, but one of my dr's suggested that I should read other people's stories & maybe understand that I am not alone, not crazy for how I feel. & maybe I would open up, I never thought I would ever write about my CRPS or share my story, but here I am writing so I must be ready & this seems to be a safe place to open up. So here it goes!!! I apologize now for how lengthy this might get, I am writing this from my heart. So just bare with me.
I to have CRPS. It's in my right hand/arm. I have had 4 hand surgeries in less then 2 years all from the same injury but every surgery has been different.. The 1st surgery I ended up losing all feeling in my index finger which is now partially paralyzed. I suffer everyday. Both physically & emotionally. I am at dr's at least 2x's a week if not more. ( occupational therapy, cognitive therapy, neurologists, orthopedic surgeons, medication dr's etc..) I can't drive as I am in a splint almost 24/7 as well as being on pain meds so I have to use cabs to get to my appointments. I am sure you all can relate, that the pain is unbearable, just taking a shower is pure torture...when the dr's ask "what's your pain level?" "1-10" (well I am sorry but that scale needs to change. I am always past a 10. I am at 40 sometimes or my 40 is I guess the10 on the scale)
I have been a numerous amounts of medications. Gabapentin made me suicidal, so they won't even try me on lyrica or cymbalta etc.. I had a terrible reaction to Keppra, & all my other meds don't always work. Maybe my pain meds will take me from a 40 to 30, for a few hrs or help me get through occupational therapy. The dr's want me to take them every 4hrs, I probably do more harm then good to myself by trying to fight taking them, so I don't feel like a drug addict that can't form a sentence, but I always have to cave in because of the pain & by the time I take it I am already suffering but then again when don't I suffer? The meds I take for tremors, doesn't get rid of the tremors it maybe calms them down but doesn't get rid of them. The side effects sometimes are worse then the meds but if you don't take them you are in the hospital in so much pain you want to die. I have developed insomnia from all this & I am now taking meds for that too! (Joy!) at least I now sleep on a good night 3-6 hrs vs 10 to15 mins. This is my life now. CRPS SUCKS!!!!
Let me give you a briefing about me. ( I mean if I am going to do this might as well do it all the way right?) I am a 36 female who used to be an esthetician( skincare specialist). About 3 yrs ago I tore my tendon after work & it's been hell ever since. Needless to say I had to move home to my parents house, as financially & physically I couldn't live on my own anymore, & to have everything taken away from me has not been easy. (I am sure everyone can relate)
I have struggled my whole life emotionally, always struggling, never leading a "normal life" nothing emotionally came easy for me ever, until finally as the lost girl I always was, looking for that "normal life." Looking for what everyone wants, Happiness! I had finally figured out what I wanted in my life, career wise. I LOVED my career, it wasn't about money it , it was what I was passionate about. Most people don't always find that, but I did. I loved doing skincare as well as being a professional makeup artist. Then I got engaged, & I was for the 1st time in my life truly happy, I felt blessed, I was looking forward to the next chapter in my life, looking towards the one thing I always wanted, to become a mother...Then in a blink of the eye, everything changed yet again. I called off my wedding 6 weeks before it, & all I had left to keep me going without having a nervous breakdown was my career, my family & my love of yoga. Then I came home 1 day from work, stretched my hands & felt a pop. The rest is history. (Now I have lost all the above) ( it kills me that I will never be blessed to be a mother, to be pregnant, to be "normal ")
I was diagnosed with CRPS type II stage 3 in October 2013 & it's been such a struggle in so many ways. I have lost friends, my career & my independence among other things.. It's been frustrating for me because no one seems to get it or they don't believe that I can be in the amount of pain I am always in, or that I am using it as an excuse ...or ( the next 2 are my favorite) "your mind can control your pain" " you control your disease not the other way around" ha if only it was that simple! When people say these things I think to myself or say to them,"(Yes! "you're right" I want to be in bed all day, I want to not work, not drive, l want to not enjoy a shower, I want to go to dr's every week, I want to be exhausted all the time, I want to be in pain, I want to cry myself to sleep, I want to be antisocial "etc.) when the truth is I would do anything to be pain free. If the dr's told me today that if I cut my arm off I would be pain free I would do it. If the ketamine infusion actually worked 100% I would voluntarily go into a medically induced coma. The list could go on forever...
It sucks as I was the girl who used to always make plans, to always be there for everyone in my life without question, with out hesitation, when you needed me I was there..If I said I would be there I was there... And to go from that to now not being able to make plans, not being able to physically be there when my niece or nephew want to see me, or for the true friends I still have left. It simply sucks! It sucks not knowing hr to hr whether I will feel good enough to even talk on the phone, or leave my bed etc.. & you can't explain it to people. No one really gets it. Some people get mad at me or say things like "you're different" you have changed"! Well yeah I have! That's what pain does it changes you!! I am not the same person, I can't promise anyone anything as I can't even promise myself. However the one thing that will never change is my heart. Maybe that's why I am so sensitive, when people hurt me or say these things.. People don't understand that this has sucked the life out of me. I look in the mirror & just see a shell of myself.. For people to get upset with me for how I have changed, well they should stop & think about how much that hurts me to hear as I already know these things & I don't need to be reminded constantly. Not only have I lost myself & my independence, but to lose some of my friends, as well, it just goes to show you who are your real friends vs the one's that are only a friend when they need something from you, or friends of convenience. But when you need them, they aren't there. I guess you could say that's the only good thing to come of this. I have found out who my real friends are & who I need to remove from my life..
Sadly it's also put a strain on my family as well & those relationships. I know my parents struggle watching me suffer & knowing they can't do anything to take my pain away.
See I to live in New York, I was born & raised in Long Island & now live upstate where it's completely dark & destitute. You don't see people unless you call or they call. This place is meant for the summer, that's when people emerge. The winters are terribly hard on me, besides the weather, causing me unbearable amount pain, I also have the added stress of being alone as my parents are snow birds & go to Florida for the winter so it's even harder to get around or take care of myself, I have to rely on everyone for everything & I feel like the biggest burden & hate asking for help, for someone to take me to the grocery store, or the pharmacy, I feel like a child having to be driven everywhere. so on top of the loneliness in the winter, the cold & the massive amount of pain that I cry everyday, I scream & yell & ask myself "why am I being punished " haven't I been through enough?" or I find myself questioning if there is really a God because how could God be so cruel? People tell me to have faith,& believe, but believe in what? Have faith in what?
Again I apologize if this is the longest letter ever!!! Or for my rambling or going to in depth, but again I have never done this & this is partially my story.!

Apr 24, 2015 7:32 PM

I have CRPS type 2..(causalgia for me not RSD). Right foot, leg, ankle, hip, hand, arm, shoulder and left hand. Its spreading...its spreading like the fire it feels like! I hope you all feel better. There is no pain (that I have ever personally experienced, and I got hit by a jeep while I was walking!) that is worse then this. It is indescribable. Good luck!

Ready to start relieving your pain?

Join Community