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Does anyone have CRPS?

Oct 25, 2014 8:32 PM

Does anyone have CRPS? I have good days and bad days but feel alone sometimes..

Oct 26, 2014 11:58 AM

Well, you have come to the right place, even if we don't all share the same diagnosis.

Nov 04, 2014 8:08 AM

My daughter was dxd as having migraine with crops! Then at a later stage her neuro dxd fibro also

Nov 04, 2014 8:31 PM

i have crps

Feb 21, 2015 3:09 PM

I have CRPS as a result of Cauda Equina syndrome.

Feb 21, 2015 8:33 PM

Yes, I have been diagnosed with CRPS... I have so many thing wrong that have so many symptoms that mimic other disease, it would make your head spin. Thank God I found this wonderful community. Great people, ears to listen, hearts that care, info sharers, etc... I'm sorry for yout suffering. Just know you are not alone.. We're ALL here for you.

Mar 22, 2017 6:51 AM

Hello I have CRPS

Mar 22, 2017 4:06 PM

That is one of the many diagnosis that have been placed on me. Sometimes I think it was just a catch all because my doctor could not figure out anything else. I really do not know since many symptoms cross over.

Apr 02, 2017 1:15 PM

Yes, I have CRPS. It is one of several diagnosis like the others. It happened after an accident.

Apr 03, 2017 6:48 PM

I have crps

Apr 05, 2017 4:43 AM

Hi! I have CRPS which has recently spread very quickly undiagnosed for over 2 years been diagnosed for 6months. Ah waiting for a spinal cord simulator now!

Apr 06, 2017 9:10 AM

For those with CRPS. Has anyone considered a spinal cord nerve stimulator?

Apr 07, 2017 7:35 PM

I have CRPS. It started in my hand after a compound wrist fracture in an auto accident. In the same accident, I broke my C1 & C2, skull, facial bones, ribs, collar bone. Before I left the hospital, I was symptomatic of CRPS in my hand and knees, but we didn't know what it was at the time. Now, it's also in my feet. Unfortunately, I also had a full thickness tear to my rotator cuff in the accident and my C2 fracture never healed. So when I talk to my doctor about pain, I just sing that kids' song "Head and shoulders, knees and toes, knees and toes!"

Apr 13, 2017 10:18 AM

By no means is CRPS funny, but when ever I see the title to this board my mind automatically sees "Does anyone have craps" and I can stop laughing 😂 I honed mean no disrespect at all ❤️❤️

Apr 13, 2017 10:43 AM

Well, I'm new to this app. All I saw was affiliation with others who share this rare disorder. I spent a lot of time thoughtfully typing out that initial comment. I was so excited when I saw that someone had replied. Then I opened your comment about "crap." Suddenly, that is how I feel. Disrespect not intended. ❤️

Apr 13, 2017 11:08 AM

Oh no please don't feel that way. We all have crappy disabilities and diseases, I personally have been going through so much yucky stuff with just myself, family, pets. This name of the board would just make me laugh and honestly that's a good thing. By no means is the description of your issues funny. We all know pain,pain is not funny. I truely am sorry. If I knew how to remove it I would, and I will. Again I am terribly sorry

Apr 13, 2017 11:21 AM

Just at a raw place right now. Consider it deleted. ✌️

Apr 13, 2017 11:29 AM


Apr 13, 2017 2:08 PM

Could someone explain to me what Crps is 🙏🏻I have cervical pain issues An been on lyrica I take 150mg morning 200mg at night sleep good cause of all the other meds on top of the lyrica but I have suicidal thoughts every day while at work I can control them better but when on my own or stressed out it's worse

Apr 13, 2017 2:23 PM

Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

CRPS is divided into two types: CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome). CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury. As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorders will always be divided into two types. Nonetheless, the treatment is similar.

CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.

Apr 13, 2017 2:24 PM

The key symptom is prolonged severe pain that may be constant. It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.

People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.

Other common features of CRPS include:

changes in skin texture on the affected area; it may appear shiny and thin
abnormal sweating pattern in the affected area or surrounding areas
changes in nail and hair growth patterns
stiffness in affected joints
problems coordinating muscle movement, with decreased ability to move the affected body part
abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.

Apr 13, 2017 2:27 PM

Thanks that seems intense somebody is always worst than ourselves that's what I try to remember 🐶

Apr 13, 2017 2:29 PM

True true

Apr 16, 2017 3:28 AM

It usually starts after an injury and can cause chaos all over your body. It is very difficult to get under control. Kinda like riding a bike you know how to do it but your nerves get a messed up signal and keep telling your brain I hurt, I hurt. I hope that made sense. Whenever we damage a nerve it immediately starts to regrow and find a new path. Sometimes the new pathway is very bad. I suffer with this and it can be very cruel. PM me if you would like to talk more.

Apr 17, 2017 8:55 AM

Hey, coppermary, I am so sorry you are going through this pain and anguish. I hate I didn't see this post until now. I was on Lyrica in 2015 and had to be taken off of it because of suicidal ideations. Here's the thing though, you can't just go cold turkey, you have to do it with MD supervision because of withdrawal. But depending on how severe the suicidal ideations you might need more supervision, if you catch my drift. That said, suicidal thoughts are just awful and you don't want to assume it's just the medicine. Pain is a horrible thing to deal with day in and day out even without the usual trials and tribulations of life. I hope it helps knowing that there are people out here who are your comrades in arms, holding you in our thoughts. There is always help at 800-273-8255 (TALK).

Apr 17, 2017 8:58 AM

"On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%. And that’s pretty good."

- Someone Wiser Than Me

Apr 19, 2017 7:11 PM

I have crps and I would like to know how you deal with your pain. How did you get crps?

Jul 04, 2017 7:08 AM

I wish I could just get a diagnosis I've had multiple doctors say that I have tos from a compression in my shoulder and crps in my left wrist both caused from an injury to my wrist which causes colour changes to my left hand ranging from really pail white to red and to dark purple, pins and needles, intense aches in my shoulder and arm like someone had given me a dead arm but the effect never wore off, numbness, electric shocks, burning in my should but having extremely cold purple hands but not one can confirm. no matter where I go or how many tests I do. No one will confirm. Its frustrating when no one listens especially when you are made to work as well as go to appointments with Physio , specialists, psychologists, gp's and then have to deal with work cover not excepting the claim and your managers and boss continuing to have a go because of not being able to work normally

Jul 11, 2017 1:06 AM

I have read about this recently because after almost 11 months now, no doctor has been able to determine exactly what is wrong with me and they just keep giving up on me and sending me to another one.....so of course I researched.
One day almost 11 months ago, my knee hurt and felt like it needed to pop and when I tried to pop it by squatting down it hurting like hell and has been ever since. They did x rays and then ultrasounds for blood clots, then mri and found a cyst underneath my kneecap. They drained the cyst, but the pain came back along with the swelling and sensitivity to touch that was so bad I couldn't bear to have any fabrics or anything touch it. Then I went to a neurologist and had a nerve conduction test that was horribly painful, but proved there was no nerve damage. I tried a rheumatologist who injected cortisone in my knee even though he said that he didn't believe there was any auto ammuine disease present, but it didn't work. Eventually they did another mri which showed the cyst had actually come back so they did surgery to remove it. For a min there I thought I might be getting better.....but it ended up just getting worse to where I couldn't even work anymore. The pain spread and moved up more as well and they did another mri to see if the cyst had come back yet again; however, the mri showed everything looked normal. The surgeon then informed me he could no longer help me. Now I'm waiting to see my next "specialist" who can hopefully help me. I read about crps when I goggled " unexplained knee pain" one day. I honestly am hoping they can rule this out for me after reading everything I have already on it, but almost all the symptoms seem to fit and I'm scared to death right now. My skin keeps peeling, just where it hurts on my knee and no where else....it's hot to the touch most of the time and very sensitive to touch. It's always swollen and either red or purple or bluish in color where it hurts most....especially in one spot that just stays dark purple all the time. I live upstairs with my 6 yr old daughter and my dog and my family all lI've out of town, so this is very hard! I'm not really writing this to get any response, but it might be nice, I'm mainly writing it to just get it out! I am going to that new doctor on thursday and I'm terrified that they won't be able to figure it out either. If you actually took the time to read this whole thing, thank you and I hope you are having better luck than me right now and if anyone has any insight, I'm open to just about anything at this point.

Jul 27, 2017 12:22 AM

RSDSA.ORG is excellent place for information. If your newly diagnosed or have had for many years, always pisting updated information on EVERYTHING. if you haven't checked it out yet, you really should. Also, FB has several great groups to get connected with other CRPS WARRIORS, thats what we are, Warriors, and we help eachother however we can. Im new to this site, and was hoping to get same results here, hope you all have a low pain day/night😘

Nov 27, 2017 5:14 PM

You're not alone. It may feel that way someone because other people simply don't understand. You don't have to go through this alone.

Nov 27, 2017 5:23 PM

I have CRPS. I’ve had it since I was 6 I’m now 14 so I have felt with it for a while now

Nov 27, 2017 10:44 PM

I have CRPS 1. Among many other things.

Nov 28, 2017 1:37 AM

Hello, New and not sure how all this works, but I saw CRPS and had to reply.
I too have RSD/ CRPS for over 20+. Anyone need to talk, get advice. Let me know. I've been there and back. See that people have pain maps, need to find where to do mine.
Take care and keep on going even when you don't, can't, won't.
Prayers to all.

Dec 22, 2017 12:07 AM

I have crps, have had it since 2014.

Dec 22, 2017 3:23 AM

I have CRPS II, Phase 3.
I've lived with the degenerative process the past 13 years.
It's been rough but each bump in pain I push on and acclimate. Not pleasant but it's life.

Jan 05, 2018 3:20 AM

I have crps. January 10th will make 4 years. It has been horrible. Now I have in addition to pak. Tremor like seziuees, my legs get paralyzed, my balance is way off and everyday my pain intensifies.

Jan 21, 2018 9:00 AM

Me! On 70% of my body...

Jan 21, 2018 9:04 AM

CRPS II, phase 3 or 4. Had it in 2011. Went on remission a year later, but an operation to my hand in 2015, reawaken CRPS. It's been almost a year since i'm off work and now it has spread to 70% of my body. A real nightmare every day!

Jan 30, 2018 12:02 PM

I also have CRPS/RSD prefer RSD as it is much more descriptive. I have had it for over 19 years and as we all know it sure ain't fun. Mine fluctuates and has spread over the years. Just started this app and will take time to learn, but at least I am seeing others with the same disease and that is a good start.

Jan 31, 2018 12:43 AM

RSD/CRPS here!!! I have been diagnose with RSD. They changed the name again, because there are a lot of people who don't fit as RSD1/2. So, the name CRPS is a basically anyone with nerve damage(layman's terms) Told by Stanford researcher.

Mar 10, 2018 8:27 PM

Diagnosed 7/17. Left foot, now both feet. No history of injury or surgery. Type 1. Wouldn’t wish this on anyone!

Mar 11, 2018 12:33 AM

I have CRPS stage 2 along with alot of other things. I've been going through this for about 7 years now and it's getting worser day-by-day. Now my pain doctor is telling me it's time for surgery (spinal cord nerve stimulator.) I am freaking out. What started in my wrist now is bothering my fingers, back, legs, arms and hips.


Mar 19, 2018 2:36 PM

I also have CRPS and am scheduled to have a SCS ‘installed’. I would be interested in hearing about the experience of anyone who has been fighting CRPS with a SCS.

Does anyone have advice on how to find a doctor and surgeon with experience in CRPS? It took a year and 17 different doctors for me to get a diagnosis and it seems as though a high number of medical professionals are unfamiliar with the syndrome and the elevated risks associated with surgery.

I also wonder how others are able to afford treatment. My student insurance dropped me last month because I can’t attend classes. I can’t work and don’t have family or friends in the position to help out financially. I am getting through disability paperwork, but the pain is a constant thought-interrupter that I’m sure many of you are familiar with.

Thanks ahead of time to anyone willing to share their experiences!

Apr 26, 2018 6:40 AM

I also have CRPS/RSD and have had 12 sympathetic nerve blocks, a trial for the nerve stimulator (failed) and a pain pump trial(succeeded but I developed a severe headache) so they didn’t want to do the actual pump. That was two years ago and my head has hurt on the left side ever since. I woke from a double mastectomy with a burning, skinned feeling on my upper arm and shoulder, that was eight years ago. It was never diagnosed so I had a foot surgery that developed a similar burn and it was diagnosed after a year as CRPS/RSD, I don’t know if my head is just it spreading but so far nothing is working on my head. Whenever I suggest it, my doctors say no they don’t think that is it so we keep trying injections, surgery(removed a piece of my artery in my temple but it was negative, Botox and medications but still no relief. I’m tired to my bones from this medical nightmare. So sorry to be meeting you all in pain. Hope your day is a low pain day.

Oct 01, 2018 12:18 AM

I have it as well, as a result of a traumatic injury to my right hand. It now affects my entire right side of my upper body.

Oct 01, 2018 12:20 AM

I've been trying different things for relief but CDB oil has been the most effective thing so far and I've been on opioids and gabapentin and Lyrica for several years now.

Oct 01, 2018 2:03 PM

Yes I do.

Oct 03, 2018 2:05 PM

Yes, diagnosed 2 years ago in my right hand/wrist 😢

Oct 10, 2018 2:00 PM

Yes, as the short answer. As the C stands for the whole issue is complex. Some of my pain is due to a shoulder surgery and post PT in 2012. Some though is from arthritis in the spine and at times the meniscus tear in my knee, at times from my MS and then a separate category of chronic migraine. They all cause mild to intense pain depending on the day, but besides the migraines they are really treated in very similar ways. The ting I have found with CRPS besides being a difficult diagnosis is it can spread to areas past the original injury/trauma.

Oct 11, 2018 9:38 AM

I have had crps since I was seven after I could barely walk at school and I would cry and shake from the pain every one thought it was for attention until my sister barely touched me and I was in tears. I have had it for 8 years now and can’t go to school most days even though I am extremely medicated

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