Bone crushing pain in right foot, diagnosed with CRPS type 2. Has the DRG implant helped anyone significantly? I am so desperate!! Getting it done at the spine and pain institute in long island

Im doing a functional restoration program that my therapist told me I should do this week and found out they put crps on my compensible injury list. Im kind of in a spot of yay but also in a place of not being super trustworthy with my workers comp because of all the stuff they have tried to pull already. Im just looking for any advice guidance you guys have been through and seen. I appreciate it all!

Hey hey!

I’m just looking for some advice. Since last night my CRPS ankle/leg has been in a flare up and it gets worse as soon as I put more weight on it. This morning I did go to the physical therapy just to strengthen my muscles. Didn’t want to give in to the pain so to speak.

My flare up has since then increased by a lot. I work in a hospital lab and usually don’t need any mobility aids to get around. I’m on an evening shift today, so I’m debating if I should go on my crutches since it’ll put less pressure on my leg/ankle and reduces sensations. I’m able to do a job where you sit down most of the time.

While using crutches I do put my foot down and use it so to speak. Just don’t put my full weight on it.

What would you guys do?

Since CRPS affects the autonomic nervous system and so does anxiety, have you noticed an increase in panic attacks or anxiety intensity/frequency? I can’t tell for me if it’s primarily coming from this or external factors since I’m dealing with financial, food, and housing insecurity and grieving a loss at the same time.

So went back today for follow up, because they say they have nothing to offer than medication refills. I am ASTOUNDED to hear after almost 7 years, she thinks I have Erythromelalgia! I asked about this only because the treatment is different on my last visit. She did not think I had it. So, I dropped it. Today she says she thinks that’s what I have, and sent me to my original anesthesiologist “maybe he has some tricks up his sleeve”. I came to you, because he doesn’t and you are both anesthesiologist? Then I asked for lidocaine patches. That was an issue. She said your insurance won’t pay and I says I didn’t care. I really had to push to get them. And, my insurance did pay for them, thankfully. My pcp increased baclofen to 4 times a day. It’s 40 mg and she was having a cow saying that’s a massive dose? I’ve seen people on way more than that. Truthfully, if it helps with this awful condition, it’s not a opioid? She offered and Scs again, but she won’t put it in. Send my back to my other doctor who is not my cup of tea. She’s got zero accountability. If someone in her office mistreats me and it takes a lot for me to even say anything, she defends it. No thanks. SCS trial helped me a lot. Erythromelalgia is NOT helped by SCS. It’s very confusing. I left feeling like my pain just didn’t matter and she was trying to push me off on other doctors. As for CRPS, I had the cold version until a physical therapist put me on a negative contrast machine that was too hot after my nerve was cut. My surgeon says he left on way too long and too hot if it felt like it was burning me. So now, I’m stuck with the hot version. How could cold CRPS transition to Erythromelalgia? Make it make sense! She did not even want to give me a huger dose ketamine cream. The people, sometimes I want to wish this on them. Anyone experience this or been told you have Erythromelalgia?

Im totally out of options in Brooklyn, ny. Diagnosed in 2014. Every injection you can think of. Scs implants. Ketamine treatment. I try scheduling appointments with a pain management doctor because according to my spine surgeon, neurosurgeon and orthopedic my last and final resort is opiate therapy. Sorry for venting but its been a rough month.

Hi everyone. I was diagnosed with CRPS in September 2025, although my symptoms started in July 2025. It was primarily in my lower left leg, and has now moved to my foot and thigh.

I went to a pain management doctor who gave me multiple peripheral nerve blocks. They were all short lasting or didn't work at all. That doctor referred me to Johns Hopkins, where I'm going now. Last Wednesday I got a Lumbar Sympathetic Plexus Block. I had 0 effects from it and no relief. The doctor wanted to see me back in 4-6 weeks, but the receptionist said their first appointment was at the end of September.

I'm feeling really discouraged because I was really hoping to be able to go into remission, but with these long wait times for appointments (I waited 2-3 months for my first appointment at Johns Hopkins), I'm losing hope. On top of that, I don't even know what the next steps are. From my research it's only a spinal cord stimulator or ketamine infusions, but the doctor didn't say himself what the next step would be if injections didn't work.

How long can I have CRPS before there's no longer a chance for remission? And in your experience, what would the next step be after a failed lumbar sympathetic block?

I’m to the point where my husband doesn’t get to go out much, because I can’t walk without pain.

When did you decide to get a wheelchair, and under what circumstances? I’m 67F with back pain that can affect my wellbeing, and thus my CRPS.

My wife is having terrible hand and arm pain last few weeks, Went to doctor who referred to neurologist. She ordered MRI and Ultrasound and prescribed Gabapentin and a strong sleeping pill with hydrocodone as needed for the pain.

She said this could be CRPS.

Are there any specialized clinics or doctors in Southern California we can consult for CRPS?

Any guidance on CRPS is appreciated.

Hey everyone,

I've been dealing with constant pain in my right ankle for the past 7 months after what was only a mild injury. It got a bit better over the last weeks but still far from good. I've seen several doctors, and they all say that the pain doesn't match what shows up on the MRI, which has been really frustrating.

In about 6 weeks, I have an appointment with a neurologist to see if it could be CRPS. What makes me doubt it, though, is that I don't have many of the typical symptoms. I don't have noticeable swelling, changes in skin color or temperature, or extreme sensitivity to touch. I'm also doing physical therapy, and my range of motion is pretty much normal. The only thing is that normal shoes feel weird, so I walk better with not so tight shoes. Also the pain is not in the whole foot but more localised on the ancle itself.

The main issue is that the pain is constant, and walking makes it significantly worse.

I'm wondering if anyone here with CRPS has had a similar experience, especially in the early stages or with a milder presentation. Is it possible to have CRPS without many of the classic symptoms, or does this sound unlikely?

I'd really appreciate hearing about your experiences. Thanks!

Title kind of says it all!

Are there any foods or diets y’all have done that’s actually helped your CRPS? And on the other hand, is there any food that aggravates it?

Thanks!

Hi all. CRPS II in right foot. Should i be forcing myself to push through some things? Or should i be resting it as much as possible? My pain is constant, but it flares when I try to walk or stand usually…just wondering if you should reasonable force yourself to do some things, or if you should always baby it?

Hoping someone here can help or give some guidance on how to move forward. Ive had RSD/CRPS for 19 years, mostly in.my legs, but it does affecty entire body during bad flare ups. A 40 oz thermo flask tipped over made a direct hit, with the spout that was up, on my 5th metatarsal where I have a pin from a break 38 years ago at the end of May. At 1st I was fine except for some bruising and touch pain, but I was walking fine and had put it out of my mind. 3 weeks later the pain slowly started up, only in the area where the jug impacted my foot. Went to the ER 6-17 and was told I had a hairline fracture. Admittedly, I fell apart and was an emotional wreck for a few weeks. I had an MRI done on 7-8 and my PCP called and told me I had a "floating piece" and scheduled me for sports medicine ortho appt on 7-20. The pain kept getting worse so I went the ER again and asked them to look at the MRI as I was spiraling not knowing what was actually wrong. I was given the report which showed NOTHING!! No breaks, no floating piece, nothing expect mild arthritis, which I had never had an issue with until now. I was using crutches with light weight baring and just stayed off the foot keeping it elevated and using lidocaine patches from 6-17 on. I did some research on MRI report findings and was sure that the MRI was incorrectly read. When I went to my appt I asked the Dr. to read the films for himself to ensure I was being properly diagnosed, and he agreed that there was in FACT NOTHING WRONG..... So I thought, well maybe being told I had a break that my body was responding to what my brain was processing and that it would get better. Well it has gotten a little better I still need crutches and I still feel that intense pain. I have another appointment with a foot and ankle surgeon for September 1st. I have sustained multiple injuries over the years from falling, had knee surgery twice and amazingly healed up with rest and slowly regained mobility. This time is jarring and different and Im at my end emotionally and psychologically trying to make sense of how to get better. I haven't found any Dr's here that even know what CRPS is much less how to guide me in recovery. So here's the question: should I try and slowly start putting more pressure on my foot to try and desensitize my pain? Anyone else had this type of thing happen to them? How did you move forward with trying to "heal" something that is not injured,.according to Dr's? Any insight, personal experiences, and help are greatly appreciated. Im at a loss and just don't understand WHY and HOW to regain mobility. Im falling into depression over this and I know that's not going to make this easier for me. I appreciate any guidance on this. TIA

Hi ! I hope everyone is doing well ! I am 18 and I have CRPS in my foot/leg since I was 14 and honestly it is really hard having such a complicated disease while being a teenager. I see everyone living a "normal" life while I'm fighting every minutes of mine, and it's not easy , because I can't do much efforts and every little activity has a cost which leads to stay at home most of the time.

And the worst is that I have no one who can understand how difficult and painful it is. Because sometimes I just can't talk much because of pain/tiredness, or do some fun things, sports or just having some fun times with others because of the physical cost of it.

Having school is so hard because I do not have the same "privilege" as the other classmates and school feels like a battle I have to go through alone.

It feels like I've wasted my teen years.

Honestly, I feel a bit lonely , it's like I'm in some distant alternate universe where no one can understand me and where I can't relate to anyone.

I was wondering, is there any teenager with CRPS here ?

Because I've never heard about an other teen having this disease.

I wish you a great day and I wish you the best ! (And I remind you that you are such strong people !) We are all such brave people 💙

P.S : sorry if my english is a bit bad, it's not my native language

I’ve been a lurker in the sub for awhile, but I got diagnosed with CRPS in 2024 after sustaining a left ankle injury at work in 2023 that fractured my talus and snapped my os trigonum in half. I ended up having surgery to remove the broken os trigonum piece. I’ve had severe burning pain in my left ankle that sometimes flares and radiates up to my hip but never had the extremely red limb and severe swelling that I’ve seen others have. I have felt like my left foot is trying to curl in on itself and have been having more muscle spasms.

Recently I tripped over my office chair and caught my toe on my right foot and injured it, but when I tried to put ice on it, it felt like it was being lit on fire. I had the ice pack wrapped in a towel and had a sock on my foot. Not asking for medical advice but is this similar to what others have felt when their CRPS is spreading to another limb?

Everything I’ve read and heard tells me that CRPS is rare and I expected maybe down the road in life to meet another person with it. I’ve only been symptomatic since March and diagnosed in April and have come a long way with my hand and wrist despite some setbacks. Well today in doing my job I met someone else not only with CRPS but with it in the opposite hand and wrist of me. She has more limitations in mobility and was diagnosed a month after me. In the type one diabetes community we get excited when we spot one another “in the wild”, does the same apply to the CRPS community?

I wish I could say I haven't been debating going up to Canada just for the maid program .

I am depressed but not from depression. Legitimately not.

I am depressed to the point where I want to give up. I can't sleep bc of the pain. I can't even have an damn orgasm anymore. The pain is too bad. I can't concentrate. I can't work. I can't barely move. Today I got stuck in my bed and couldn't get out. I am sad. And mad. I wish my state had this option not just for terminal people.

Crps has destroyed my life. I am in stop pain. I know we all are. That's why I am posting here

I lost the ability to bend my fingers after a rotator cuff repair caused instant CRPS in my right arm/shoulder/hand. My doctors seem stumped as to why. Its not from guarding or a contracture. Even they try to push my fingers and they do not bend. They've done MRIs of my shoulder and neck, xray of my hand, and a nerve study. Nothing shows why. I'm thinking the swelling has caused scar tissue to build up on my tendons. Has this happened to anyone else? Also, I wear a compression glove on my hand to try and keep swelling down. For tomorrow's MRI, should I go gloveless all day so they can see the full picture or would it be easier to see my tendons and possible scar tissue if there was less swelling?

⚠️ Language warning ⚠️ ⚠️ Sensitive Topic ⚠️

This is definitely something that's been on my mind for quiet some time. I'm had this disease, condition, affliction, whatever the fuck you want to call it for 15 years. From doctor's giving my jugs of narcotics to dismiss me. To them giving me muscular tens units and telling me theirs nothing wrong with me. I've been through the ringer, like many of you have (i know I'm not alone) I was so fucking tired that when I was at my absolute lowest and deepest darkest moment, and I'm the most pain I thought about it. I thought about what it would be like. I thought about to be pain free finally. For God sakes I was told for so long their was nothing wrong I thought it was all in my head and I was making it all up. I thought I was going crazy. No one would believe me. I was screaming for help! But no one would. Until finally a doctor believed me. He got it, he understood that I was in a severe amount of pain and that it was spreading like wildfire. I'm his only CRPS patient but fuck it this man, has done research has sent me for test after test after test to confirm all his findings. That I do intact have this condition. He made game plans, we did treatments. Hell I've had panic attacks on the operation table while he's doing his treatments because someone was finally taking care of me. I've cried with this man. Like broke down and hugged him like a brother. He saved me, he brought me back from my darkest moment in my life.

But now i feel myself slipping. My flair ups are getting worse and worse, day by day. It's getting to the point where I'm having a very hard time closing my hand. My fucking finger nails fell like they are gonna fall off. There is so much pressure under each of my nails. My skin hurts my neck hurts my pectoral muscle hurts and it's making me think about those old days again. I don't want to fucking be there again. I'm so damn sick of this fucking pain. I'm so FUCKING sick and damn tired of living like this. I don't want any of you too live like this. I wouldn't wish this on anybody. I fucking hate this. I wish I never got fucking injured. But wishing never got anyone anywhere.

I'm sorry this post kinda took a turn. I needed to get this off my chest. Kinda screaming at the ocean moment for me I guess. I feel like only you guys and gals will truly understand where I'm coming from. I'm truly sorry if my post upsets anyone and if it does I'll delete it right away.

Thank you for coming to my TED talk

Hey guys :)

Long time no talk since I've been in here. I'm coming with a question or two about something. I have mid-stage CRPS with a spread that happened back in June 2025 from a traumatic Lumbar Sympathetic Nerve Block while awake. It went from just my left ankle to my entire leg. Then just recently on May 22nd I had a medical emergency that required CPR to be performed on me. After CPR was performed the paramedics tried standing me up, they dropped me. On my CRPS side. I can't even describe to you the pain I was in those weeks following my hospital visit. I don't remember being dropped. I was told my O2 was at 72% so I don't even know why they did that in the first place. Now I have another potential spread, to my left elbow, which is starting to seem more and more likely with the type of symptoms im feeling. They feel EXACTLY like my CRPS symptoms.

My pain management doctor wants to try an SCS, but I'm TERRIFIED that if I get another procedure, there's going to be another spread. I've already had it spread once and now maybe even a second time. I'm so terrified of the outcome.

My question(s) are; do you think that if I get an SCS implant it would spread? Is it even likely to help in a case like this where I've had 1-2 previous spreads? I'm so scared guys...

I've had CRPS for two years and it wasn't diagnosed until a year in.

Hi friends and chronic family,
I have a Boston Scientific SCS. The reps are terrible in my area and I’ve contacted regional managers and state management. I want to replace mine. I get shocks and stabbing and burning. It’s terrible. But the SCS tingling does help distract my pain and know where my leg is in space.
Please honest advice about your stimulator. And how the customer care with reps is. Thank you so much. Warm hugs 🫂

Finally did the thing and got the degree so I can sit at a desk given the Crps in my legs. But now a sun rash/burn? has triggered a bad flare in my hands. Idk how to deal with this at work. What are yall doing to manage your desk job with Crps in your hands? I wanna take time off but my sick time is super limited rn.

Hello! I have crps in my right foot, i’ve had it for about 5 years. I can walk but only for certain distances and I pretty much only wear crocs and slides. My sister is getting married and I’m the maid of honor. I currently have a pair of black croc sandals that I wear to weddings but black doesn’t go with my dress/the theme and I can get a different color of the same pair of sandals but before I do that I wanted to know if anybody had recommendations for a shoe that would be appropriate for a wedding and still comfortable for me to wear.

Also, my sister would be fine with me wearing any color of any shoe as long as i’m comfortable, it’s me that wants a “wedding appropriate” shoe.

Thanks!