CRPS - anyone suffering with complex regional pain syndrome

I have it & had it a long time, back when it was called reflex sympathetic dystrophy. It was caused by a steroid shot into my ankle, it turned blue & mottled & cold and started the burning stabbing shocks thereafter. Mayo Clinic in Minnesota got it under control with a sympathetic block, and the pain stopped and my foot & ankle warned up within 15 minutes!

Hello all.

I’m Jeff, a 66 year old who has been dealing with chronic pain for nine years. Just over five years ago, I was given the diagnosis of CRPS.

Right now I’m not going to go into all the drugs I’ve used or that I am currently using. It’s an exhaustive list of ones that didn’t work at all, provided some pain relief, or worked well but then stopped working at all. Then there is the cocktail of drugs I currently take. Maybe later…

I did want to share a list of the alternative treatments I have received. Most of the listed treatments provided some relief for a period of time - and then just stopped working in any positive manner. I listed the clinical and group therapies because there was tremendous benefit to those options.

The treatments I’ve had to date include:

Acupuncture
Therapeutic Massages
Cortisone Injections
Chiropractic Treatments
Interferential Current Therapy [IFC]
Physical Therapy
CBD Tinctures
IFC In-Home Treatments
Stellate Ganglion Nerve Blocks
CBD Topicals
Behavioral Health Therapy
Meditation
CBD/THC Edibles
In-Home Meditation App
Clinical Virtual Reality Treatments
In-Home VR Treatments
Pain Group Therapy via Zoom
Infrared Therapy Treatment
Ketamine Infusion Treatments

To date the ketamine has been the most successful, with one series of infusions providing pain relief for 45 days.

What are ketamine infusion treatments?

One year ago Ketamine was given orphan drug status by the FDA, for the treatment of CRPS. I’ve had three rounds of five two-hour ketamine infusions over the past year. The second series resulted in 45 days without my CRPS pain. Here’s some info from the Cleveland Clinic:

What were the side effects

No major side effects after the first couple days. Until then doctors recommend no driving, no drinking, no major life decisions and no shopping on Amazon. It’s similar to coming down off any psychedelic drug.

Hi my name is Darryl and I"ve had CRPS for a little less than 2 year's. Unfortuneently I'm having a rough pain night so I will have to make this short. I posted this information on the cronic pain site yesterday but it is more important for this site. I found a site titled " rsds.org " a few days ago and they are already helping me out. They help peoplr with CRPS nation wide with help finding doctors of all kinds of other helpful information. They even have a clever little gift shop for people with CRPS. I have already bought a CRPD covid mask and a bandana for my companion dog. The most important thing is that I would highly reccomend looking at this site " rsds.org ". Thank's Darryl

Hi. I woke from back surgery in 1979 with what was them called "causalgia." Then morphed to RSD tho they actually represent type 1 and type 2 but only what caused it. Symptoms etc are identical and really, it's only an insurance code thing - if even that anymore. It doesn't matter how you got it these days so that seems a moot point.
I've lived with it in my left for for 43+ years. I've been on crutches since I was 24, which is when it occured. I'm now 67. It spread to my right foot about 12 years ago after a fall and got worse and spread in my left foot and leg after a knee replacement that the doctor didn't even consider could happen. My gastro says I don't have ISB, I have CRPS in my intestine. That practice is very aware of CRPS. Even asks a separate question about it on their intake form.

I got COVID in June 2020. It spread up to my hips, to my rib cage and to my larynx. I have had long covid and sleep with oxygen now and constant pain from my hips down esp my outer thighs which feels like a bees nest lives on my skin. My voice is much deeper and cognitively, things are bad. All things that can happen from CRPS and COVID. Together, terrible. I have the teeth problems people get but we aren't told about usually and over the years I have been shamed by dentists when I've been able to afford to go. I've been on SSDI, Medicare since 1981. I am vaccinated etc. I got COVID again in August of this year. (I barely left the house in 2020 and 2021.) Now I go to PT twice a week, psychotherapy 2ce a week with a chronic pain psychologist. I am about to start pool therapy per the long COVID clinic it took me 2.years to get into but even once I got an appt, it was an 8 month wait. The pool therapy is supposed to help with my oxygen level which is about 92 and drops into the 80s even on oxygen.

I have also started speech therapy which is used for brain food and helping find works etc that occurs with CRPS and long COVID.y whole life is doctor appts esp since I am now back.on crutches post covid.

Please get the shots. If you think the shots hurt, you sure don't want to get COVID itself. Read about cytokine and bradykine. If you have CRPS, you already have a high level. COVID increases the level in healthy people. In fact, it's a cytokine storm that causes death in ICU.

I'm about to go back on a strict antiinflammatory diet that will also involve even making my own bread so it can be flour and sugar free.

I take no addictive medication except 1mg of ativan at night. I use trazedone to help me sleep. I am allergic to all opioids except I can take tramedol on occasion tho it's causing hives now too. My doctor lets me inject myself with toridol (I'm a nurse) of the pain is so bad I'm about to end my life. I've done that once and attempted several times. The typical CRPS patient thing of "the suicide disease." 43 years is an entire lifetime. I was disabled from nursing at 24, after only 3 years. My back surgery that caused it initially was from an on the job injury. I am currently on Prednisone after another wide spread after getting COVID a second time. I'm titrating down from Prednisone but when I get to a certain point, I get bedridden. Highly recommend an adjustable bed if you can get one.
So, hang in there folks. I've been in bed mostly since getting COVID again in August. Long covid is real and when you add a CRPS spread and doubling your already brain fog...well, get the vaccine, wear a mask and stay distanced. If someone in your life says they have a cold, my doc says assume it's COVID and stay away. I am not sure I can survive getting it a third time.
My best, Betty

Do any of you have so much stinging it's like there are bees on your skin and inside, for me, my thigh. Can't get away from it. It wasn't there until the COVID cause spread. It's horrible.

A bees nest lives on my thighs.

Back twenty years ago when CRPS was new for me I went through odd sensations where it felt as if my leg skin was crawling. It was so bad that I'd wake up from sleeping and tossing the blankets off because felt like insects crawling on the leg. I don't have the severe sensory issues anymore like bugs crawling but know what you're talking about. These days depending on the pain it can cause garment pain such as light brushes and/or a tightness due to wearing pants even when the pants I wear are not tight. Life is weird.

Saw a doctor recently who did an ultrasound on the fibular nerves and noticed they may be squeezing together due to trauma around area. January 3rd I am doing the injection (up to 6). It's called Common Fibular NU Injection. I assume NU is neuropathy ultrasound injection. I'm out of options at this stage in the CRPS game. If anyone has interest, here's the link for a description of what that means. It is not at this office, but locally for me. https://bostonsportsandbiologics.com/procedures/nerve-hydrodissection-boston#:~:text=Nerve%20hydrodissection%20uses%20fluid%20to,entrapped%20nerve%20using%20ultrasound%20guidance.

Thank you so much for this validation. I am ready struggling with validation right now. Friends on all these years have never even looked up CRPS, my mom who understood as much as she could died of COVID in 2020. I've had long COVID since then which I may have already said but don't have the umph to reread above.

People can't relate or say "my knee hurts sometimes so I know exactly what you mean."

But mostly, I have not worn jeans hardly at all since my covid spread plus not leaving the house I bought a bunch of light kind of not stretch but loose soft pants. I leave for FL on Wednesday and feeling like those pants make me look fat and I should just buck up and wear jeans in front of family who haven't seen me since I put on Prednisone and COVID weight.

But from what you said, yes, I'm hurting and jeans make me hurt more. Even tho they do t understand, why should I hide it from them. Already I have to have oxygen delivered to my sisters house (at 70 she's in much better shape than me.) I can just explain that tight, rough material pants hurt.

I had not thought that I wouldnt have to buck up and literally put on my big girl pants. You have said it's ok to hurt and not have to hide it and dress for MY comfort, not their judgement. And it's probably all in my head. They have seen me overweight, I'm embarrassed but doesn't mean I also need to be in pain!

Thanks for a dose of reality. I am one of 10% who are helped by cold. My favorite thing about being at her house is to sit by their pool and put my feet in the freezing cold water. (It's FL so it's probably 70 but cold on your feet. In a bucket here, the water gets warm too fast. At a pool, I can sit for a long time and it stays cold. I feel fortunate, very, that cold helps me. It that it doesn't also hurt, but after, no burning and numb skin. It's a beautiful thing. I al.osg look forward to that more than Xmas with family. Lol.
Thanks for responding. Sorry you have experienced the same bugs, bees, whatever and I wish you the best with the injections. Remember to watch for CRPS symptoms getting worse after the injection esp near the injection. Even needle sticks can cause CRPS esp when we already have central sensitization. Wish you the best. Happy holidays everyone.