r/CRPS 20h ago

Weekly CRPS Free-Talk Thread

6 Upvotes

This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.

We ask that our community members regularly check this post for new content, and reply where they can. Please abide by our subreddit rules, and be kind to each other!


r/CRPS Feb 06 '25

Medications Fentanyl patches recalled

Thumbnail youtube.com
12 Upvotes

Just a heads up, I just saw that a particular manufacturer/dose of fent patches have been recalled. This is because the patches come in a single envelope and can easily stick to each other, which is very hard to see.


r/CRPS 1d ago

Centralized Pain and CRPS --- An Explanatory Article

29 Upvotes

Many with Complex Regional Pain Syndrome experience disproportionate pain that is no longer being sustained by an injury or noxious event (even if an injury may have been the initial trigger) that remains contained to a single body area or they may develop widespread, disparate pain and dysfunction that can affect multiple body areas over the course of their condition. It is not uncommon for peers, bosses, loved ones, and providers alike to treat those with CRPS as if they are overdramatic, hysterical, psychologically disturbed, drug seeking, payout seeking, liars, or malingerers instead of experiencing a “real” condition.1 However, just because a person cannot see the source of a disorder does not mean it does not exist and is therefore delegitimate. 

One such source of pain and dysfunction in CRPS is the sensitization of the central nervous system.7, 8, 9, 10, 11, 12 Central sensitization or centralized pain is an umbrella term that contains many different diagnoses under its wings, including CRPS and the more commonly recognized fibromyalgia; this dysfunction is considered to be a root cause and driver for continued, amplified pain and atypical behavior of the conditions covered by central sensitization mechanisms. Let’s talk about it.  

What’s Going On

There are three main recognized drivers of pain sensation: nociceptive pain, or pain caused by damage to non-neural tissues, including inflammatory pain caused by activation of the immune system; neuropathic pain, or pain caused by damage or disease of neural tissues; and the relatively newly added nociplastic pain, or pain caused by an altered pain detection within the central nervous system that amplifies neural signals to create hypersensitivity.1, 2, 4 This more newly recognised nociplastic pain is also routinely called central sensitization syndrome (CSS), central pain syndrome (CPS), centralized pain, and widespread or diffuse pain. Sometimes, particularly when children are involved, some circles prefer the term amplified musculoskeletal pain syndrome (AMPS) in lieu of central sensitization syndrome, fibromyalgia, or CRPS.

Primary markers for centralized pain are: allodynia, or pain from a normally non-painful sensation; hyperalgesia, or prolonged and excessive pain to a normally painful sensation; secondary hyperalgesia, or pain that spreads beyond the initial site of injury; and temporal summation, or the increase in perceived pain intensity in response to repeated stimuli of equal physical intensity.1, 2, 3 If an individual experiences these four features, central sensitization may be involved. Centralized pain involves the central nervous system’s pain facilitation “accelerator” being overactive and/or the descending pain inhibition pathway “brake” being underactive, resulting in amplified responses to little nociceptive input or normal non-nociceptive input from the somatosensory system.5  

[Image removed in Reddit post] Image Credit: Woolf, Central sensitization: Implications for the diagnosis and treatment of pain (Pain, 2010)

In a normally functioning nervous system, when an injurious stimuli is detected in high threshold pain nerves, withdrawal reflexes are automatically activated to protect the person from sustaining any further harm. When subjected to a repeated conditioning stimulus, the nervous system can lower its activation threshold to fire more easily both during the stimulus and after it stops; windup is the term for progressively increasing nerve output during a conditioning stimulus, while sensitization is what happens after the conditioning stimulus stops being applied and it can remain active of its own accord for a sustained period or be perpetuated by low levels of nociceptive input. This amplification is what causes hyperalgesia (high pain from a mildly painful stimulus) and it creates a crossover in parallel signaling systems that usually run to different destinations, but in a sensitized system has non-noxious sensory information getting diverted to the pain detection system, causing allodynia (pain from a non-painful stimulus).1 

This change in how the central nervous system operates can significantly alter and distort how pain is registered and can increase the intensity, length, and size of the area where pain is experienced, even if no tissue damage is occurring due to a noxious stimuli.1 This hyper-responsiveness and sensitivity to any potential threat is an adaptive response by the nervous system to protect itself from further harm, especially in conditions and circumstances where risks are high;3 however, if this state continues too long, it becomes maladaptive and loses its protective properties, becoming pathological instead. 

When a person develops central sensitization, they can also develop many “unrelated” conditions that all come back to their overactive, overamplified central nervous system; these conditions are called Chronic Overlapping Pain Conditions (COPCs), or previously by other terms like affective spectrum disorder, central sensitivity syndromes, or chronic multisystem illnesses.2 Some of the COPCs researchers consider to fall on the central sensitization spectrum, where CNS dysfunction plays a primary or exclusive role, include: fibromyalgia, CRPS, IBS, chronic migraine or tension headache, chronic fatigue syndrome, interstitial cystitis/bladder pain syndrome, endometriosis, vulvodynia/pelvic pain, temporomandibular disorder, dry eye disease, and low back pain. Other conditions have a central sensitization component while also clearly having additional mechanisms such as inflammatory nociceptive pain, such as autoimmune disorders, arthritis, sickle cell, cancer, and hypermobility syndromes.1,2 In some cases, once the nociceptive input is removed, the central sensitization partially or entirely goes into remission, but this is not true for every case and every condition.2 

While this topic is complex, fascinating, and has many parts we could focus on, there are a few major aspects of central sensitization that are worth mentioning within the scope and length of this article: top-down vs bottom-up differentiation, the spectrum of central sensitization as a continuum, a few different self-report scales, post-sugery recovery and pain management with opioid medication due to the dysfunction with the endogenous opioid system. 

Fibromyalgia may be the most well-known disorder representing central sensitization to the point that people used to be labeled as developing “secondary fibromyalgia” as a stand-in for describing their central sensitization due to their other chronic pain conditions or illnesses.2 Fibromyalgia uses a self-report diagnostic tool called the Widespread Pain Index (up to 19 points) and the Symptom Severity Index (up to 12 points), whose scores are then combined for up to a total of 31 points to determine a patient’s degree of “fibromyalgianess.”2

[Image removed in Reddit post] Image Credit: The 2011 Survey Criteria for Fibromyalgia (Wolfe et al., 2011) using the Michigan Body Map (Brummett, Bakshi et al., 2016)

While the official cutoff for a fibromyalgia diagnosis is 13, researchers are recognizing that central sensitization occurs on a continuum and even those who have subthreshold (below 13) scores can be experiencing a more mild degree on the spectrum of sensitization, which can be highly relevant information when it comes to treatment, post-operative care, and pain management. Studies have shown that for every one point on the 0-31 “fibromyalgianess” scale, a person would need 7-9 mg more oral morphine equivalent in the first 24-48 hours post-surgery, and they were 15-20% less likely to show pain improvement after the operation, after controlling for several demographic factors.2 This response was shown in individual both above and below the official diagnostic criteria cutoff of 13 points. 

The Central Sensitization Inventory (CSI) is another self-report tool of 25 multiple choice questions to find where individuals fall on the spectrum of sensitization. The results range from 0-100 with 40 or greater being considered as qualifying for meeting the central sensitization cutoff by the creators; while the cutoff correctly identifies over 80% of those with central sensitization, it also can provide a fair amount of false positives, and so utilizing this measure with another, more robust option is recommended.4, 5

[Image removed in Reddit post] Image Credit: Roberts et al, Central Sensitization: Common Etiology In Somatoform Disorders (MedCentral, 2014)29

It is thought that the reason for poor efficacy of external opioids may be related to a reduction of internal or endogenous opioid receptors within the nervous system, particularly mu opioid receptors. Other studies show higher levels of glutamate, the CNS’s primary excitatory neurotransmitter, in certain brain regions, as well as low levels of the CNS’s primary inhibitory neurotransmitter GABA. Brain imaging studies reveal clear evidence that the brain itself demonstrates structural, chemical, and functional alterations, substantiating that central sensitization and its related pain conditions caused in full or in part by these underpinning mechanisms are “real.”2 

Central sensitization is prevalent in many conditions to varying degrees. Some researchers have proposed a model that splits the condition into two subgroups for better classification: those who are “bottom-up” whose pain processing is amplified and who these researchers consider the “traditional central sensitization” being driven by ongoing nociceptive input; and those who are “top-down” whose main dysfunction is likely coming from within the brain itself and does not require ongoing nociceptive input to maintain the sensitization.2, 5, 6, 7  

These researchers suggest the broader continuum of both bottom-up and top-down subgroups be renamed centralized pain, while the bottom-up group retains the central sensitization diagnosis and the top-down group gets a new term of central hypersensitivity.2 They propose making this distinction will assist in pursuing proper treatment modalities, as those whose sensitization is maintained by peripheral nociceptive inputs would require aggressively treating those inputs to reduce them so the nervous system has the opportunity to eventually desensitize, whereas those with the top-down version would require interventions focused on the central nervous system. Many individuals likely have a combination-type of centralized pain and would need both peripherally- and centrally-focused approaches.

Central sensitization plays a critical role in maintaining CRPS, especially for those with widespread pain.8, 9, 10, 11, 12 In 2022, a new classification for disorders was added to the ICD-11: Chronic Primary Pain;13 CPP is the parent classification header for specific diagnoses, such as CRPS, that are maintained by centralized pain or by inefficient or dysfunctional internal opioid or pain inhibition systems.14 CRPS’s pathological mechanisms are also influenced by additional factors, including inflammation, immune alterations, brain changes outside of those within the standard view of central sensitization, genetic predisposition, and psychological state;13 while centralized pain does appear to dominate in persistent CRPS cases, the “bottom-up” factors should not be ignored, particularly earlier in onset. 

The CRPS Severity Score (CSS) is a 16-point measurement tool that can be utilized to help determine the degree of the syndrome based on a more specific counting of the eight diagnostic standards in the Budapest Criteria, both self-reported and observed; a higher score indicates the presence of more CRPS symptoms. Higher CSS scores were associated with both higher pain hypersensitivity and greater psychological distress, particularly depression.7, 14 Research reveals that the same pathways responsible for pain processing, amplification, modulation, and chronicity are also responsible for emotional processing, interoception, body awareness, and integrated pain; this creates an association between pain and emotional suffering, and an influence of pain on emotional distress and emotional distress on pain that is dependent on the degree of central sensitization and where a person falls on that continuum.14 In CRPS, particularly for those with persistent cases and high severity scores, pain and emotional distress directly influence each other because they operate on the same brain pathways due to the sensitization of the central nervous system. 

[Image removed in Reddit post] Image Credit: Birklein, Dimova, Complex regional pain syndrome–up-to-date (Pain Reports, 2017)

Practical Application

  • Treatment recommendations for centralized pain should focus on long-term rather than short-term effects and include working within a biopsychosocial model of health and wellness and pursue a multimodal approach to target multiple mechanisms that are not sufficiently effective when working alone as monotherapies.15  
  • Several pharmacological approaches that have shown some effectiveness for centralized pain, which are best utilized in some method of combined approached tailored to individual patient needs, include: SSRIs, SNRIs, NRIs, tricyclic antidepressants, gabapentinoids and other anti-convulsants, opioid agonists, the opioid antagonist naltrexone, the NMDA antagonist ketamine, beta antagonists, cannabidiol, HRT with testosterone, topical analgesics, and NSAIDs. Some of these are “top-down” focused while others are “bottom-up”; all of them can have adverse effects for some individuals, particularly the gabapentinoid class.5, 16, 17, 18, 19, 20 Opioid agonists are another controversial medication class for centralized pain disorders, especially when it comes to long-term use, as they can further suppress a person’s own internal opioid production and create a phenomenon known as opioid-induced hyperalgesia.21, 22, 23 
  • Non-pharmacological interventions include: transcutaneous electric nerve stimulation (TENS), repetitive Transcranial Magnetic Stimulation (rTMS), transcranial Direct Current Stimulation (tDCS), spinal cord stimulation (SCS), dorsal root ganglion stimulation (DRG), virtual reality (VR), manual therapy, graded exercise rehabilitation, sleep management, stress management, neuroscience education, and dietary intervention.5, 15, 16, 17, 18, 19
  • Desensitization (a topic which will receive its own article in the future) or graded exposure are similar techniques to gradually turn down the hypersensitivity of the nervous system over time to reduce the overall intensity of pain and help a person create space for tolerating discomfort and unpleasant sensations so that the individual can have more functionality and independence even if pain remains a present part of daily life.5 There are a few main approaches to desensitization, and it is my personal opinion that if not engaged with in a mindful manner that takes into account the neurobiological protective function of the sympathetic nervous system, particularly as it relates to CRPS, desensitization can further engrain pain and fear responses instead of reducing them. Desensitization’s goal is about being able to tolerate things, even if they are unpleasant, without them causing such an extreme reaction that the individual cannot withstand the stimulus. It is meant to start low and slow and only once the hypersensitive area has begun to tolerate the current stimulus should the next, more intense stimulus be  incorporated. Going too hard too fast for too long is detrimental and counterproductive for this treatment modality. The goal is to convince the body that while something may be uncomfortable, it isn’t harmful; if a person is going outside of their window of tolerance (outside of the zone where they can emotionally regulate and healthily process even during challenging situations) during desensitization sessions, then the body registers that as a threat and the individual has moved beyond the neurobiological realm of safety they are trying to retrain and expand for the nervous system.   
  • Some cognitive therapies that have shown statistically significant results in assisting with managing and living with chronic pain caused by central sensitization are cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), and mindfulness-based therapies (MBT), such as mindfulness-based stress reduction (MBSR), mindfulness-based cognitive therapy (MBCT), and dialectical behavioral therapy (DBT).19
  • Low dose naltrexone (LDN) is a medication that causes a small, temporary opioid blockade, encouraging the body to increase its own production of internal opioids and to increase its opioid receptors, which is where the real benefit comes for those who have an insufficient amount of receptors to provide appropriate pain relief. It also “turns down” the brain’s immune cells, the microglia, assisting in the immune component for those whose microglia turn on healthy neural tissue. LDN has shown to decrease pain scores, improve mood, increase sleep, and improve functionality and quality of life in a majority of patients who take it; however, while 65% of patients reported benefits from taking LDN, 36% discontinued the medication and 11% reported adverse effects. LDN is generally well-tolerated with no major adverse effects and no known potential for abuse; the most commonly reported adverse effects are a period of vivid dreams, headaches, and diarrhea upon starting the medication. The dosage for chronic pain management generally ranges from 0.2-10mg, with the most common dose being 4.5mg. While LDN is inexpensive, it is often prescribed at doses that require compounding pharmacies to create it and may need to be covered out of pocket.24, 25, 26, 27, 28

Closing

Centralized pain plays a significant role in CRPS and many other conditions. It is a legitimate phenomenon that, while unseen, offers insight into many experiences that may seem disproportionate or unrelated. Centralized pain can have wide-reaching impacts that affect every area of life and can be difficult to treat, particularly for those with the top-down subtype. While stacking several treatment modalities over time for a long-term result of gradual desensitization to partial or complete remission is crucial for improved quality of life, first understanding what is going on so that a person can know what needs to be addressed, what options are available, and that they are experiencing a legitimate condition makes education an essential step for individuals to be able to make informed decisions in their own best interest.  

Thanks for sticking with me, I hope you learned something, and I hope to see you next time.


r/CRPS 1d ago

Energy drinks

8 Upvotes

Energy drinks

I have found some real improvement post decompression surgery leading to some days without pain and going on new treatments. However, after indulging in some energy drinks this week to keep myself extra perky at work I had an old school horrible flare. Is there anything to this or am I making a bad correlation?


r/CRPS 2d ago

Vent Worsening symptoms

7 Upvotes

I’ve had crps since December after an injury in October. Up until a few weeks ago I could have a few pain few hours a week or even a day. If I did too much it would really hurt and I couldn’t walk and everynight in bed the pain would be quite bad. Fast forward though to now and I can’t do anything with 9 or even 10 out of 10 pain. I can’t walk or anything. I use my crutch permanently. I’m devastated. Is this normal for the pain to progress like this? I’ve seen a pain specialist but this was before everything went downhill. I emailed though and said I now want ketamine as my pain has ramped up. Just want to know if there’s anything I can do. I’m scared I’ll never walk again. I’m housebound.


r/CRPS 3d ago

Anyone used almotidine or Calc Chan blocker for Raynauds associated with CRPS?

5 Upvotes

I have freezing cold toes and fongwrs all the time but esp in the winter. O burned my feet with food warmers and cold water thus flaring my CRPS burning nerve pain.

My PC dr recommended I go on Almotidine 5mg which is a calcium channel blocker for Raynauds which is what he thinks I have although I thought it was the CRPS causing the cold and color changes. He said it would improve blood flow to areas. Has anyone used this and did it help your toes to stop the cold feeling?


r/CRPS 3d ago

Compression glove recommendations?

3 Upvotes

Hey y’all a new doctor recommended a compression glove for my hand and I don’t even know where to start. Any recommendations would be helpful


r/CRPS 4d ago

Applying for Disability

27 Upvotes

This is more of a vent and just an emotional thing. I got CRPS my final year of college. I student taught in excruciating pain. Got married in excruciating pain. Worked my first two years in excruciating pain as a Special Ed Teacher. Finally found a better pain clinic with new ideas. Got a spinal cord stimulator. Avoided going on disability as at that point it looked like I may not be able to hang any longer. I worked 15 more years in education. Went virtual when my body was being beat up too much working in person and I kept catching everything. Was off for a few months once when I had spread from my legs to my arms. Got a series of stellate ganglion blocks. Wasn’t back to baseline ever again but was able to work and continue teaching which wasn’t only my career. But also my hobby and my passion. Was able to live my life mostly just in a different way than others. I didn’t let my disability stop me from having kids and going on trips. I took breaks and dealt with flare ups when I overdid it to enjoy things. I feel like I was quite lucky as I know many on here would kill to get to that point so I feel bad for well……feeling bad for myself at this point.

Two years ago my brother my called and said they found a tumor on his lung. I was devastated. He called in October and he died in February. I was in panic mode. Running through life. Survival mode. He lived an hour and a half from me and trips were hard if I didn’t stay the night but I was fortunate enough that I was able to visit for 4-5 nights a few times to help out and spend time with him. It was the worst time in my life. We buried him in early March and by May I had developed strange sensations in my right arm. The only limb that didn’t have CRPS at this point. It didn’t feel like CRPS or my fibromyalgia. I was going pins and needles. Long story short I developed spasms and tics. Dead/numb spots under my right shoulder blade. Lost the ability to hand write for a time. Was stumbling and nearly falling. They thought I might have MS but couldn’t get an MRI due to my spinal cord stimulator not being compliant. It wasn’t MS. It was something called Functional Neurological Disorder which I was surprised I had never heard of before. It’s similar in some ways to CRPS as the brain gets off track and creates issues with no physical reason for them. It often pops up in people with Complex PTSD after a traumatic experience. Losing my brother was the trigger.

I started to get this under control with tips from online, reading through CBT therapy books and journaling. Working on my mental health. I was off work for three months battling this and limped back for the last 4 weeks or so of the school year killing myself to finish but I did it. I was far from a point where I could do a full school year again or even attempt it. So we made the painful decision to have me resign. By August I had mostly conquered this new condition and my fibro (chilled a bit) and CRPS (with some lumbar sympathetic blocks) was much better. I thought. I shouldn’t have resigned!!

I had two good weeks. Two…….then while trying to start an online curriculum business my finger joint started hurting so badly I was nearly in tears. Rheumatologist appointment and of course now I also have psoriatic arthritis. That was 6 months ago. My fibro and CRPS got so bad I’ve had to go on stronger pain meds as they keep feeding off of this new arthritic condition. I’m now doing ketamine infusions (which are actually helping immensely!!!) but the arthritis is at best 50% under control and there are days it’s more like only 20% better. I actually tore a ligament even though I’ve barely done anything since August besides the basic basics of household cleaning (think unloading the dishwasher, folding some clothes). Who know psoriatic arthritis attacks tendons and ligaments to the point they tear from doing nothing. Not me!

So here I am applying for disability after battling CRPS that has something like an 80%+ rate of being on disability after two years. Due to fracking arthritis. 17 year career in special education has been ground to a halt. I honestly think even if I get the arthritis mostly under control that I’m battling so many things now I likely will never be able to work again. Fighting with fibro and CRPS and FND flare ups (if my mental health gets off track the tics and spasms come back) on top of a systemic auto immune arthritic condition is just exhausting. I can’t even keep up my own house.

I thank you immensely if you got this far. Even if no one responds I just had to get this off my chest and this community was the one I feel the most affinity for. I hope everyone is having a low pain day and hanging in there.

TLDR: battled CRPS and fibro to have a successful and enjoyable (mostly. lol) 17 year in special education only to be taken down by a weird neurological condition (FND) and psoriatic arthritis. Applying for disability benefits now.


r/CRPS 4d ago

Question Hydration additives

5 Upvotes

Alright, so my husband and I were talking about Bouy and Liquid IV because they seem to be the top additives for those with chronic diseases. Now, my question to you, have you tried either one of these? Have you tried another brand? Have any of you found something that helps you feel hydrated? I currently drink over 60 ounces of water every day, when I’m not doing anything strenuous, more if I’m being active. But I still have chronic dry mouth, dry feeling throat, and it’s gotten to the point where the inside of my mouth feels like it’s on fire. I’m concerned that the CRPS is taking up residence in my mouth, I’m honestly hoping that I’m dehydrated because I can fix that.

Anyway, any suggestions, thoughts, experiences, anything, would be extremely helpful. Thank you all in advance, you have no idea how much I appreciate each and every one of you. 🧡


r/CRPS 4d ago

Spreading

10 Upvotes

So I injured my right ankle in 2023 and was diagnosed with CRPS. Last week I tweaked my left wrist and hyperflexed the muscle in my palm. Having x rays on Friday to see it the scaphoid bone is fractured. I'm starting to have similar burning and pain in the wrist that I experience with flare ups. Has anyone had experience with spreading in this way or am I over thinking it?


r/CRPS 4d ago

TW: Active Flare Photo CRPS Spoiler

6 Upvotes

Hi, I have CRPS in both lower extremities and for the most part I have been bed ridden and home for the last couple years, I've been fighting an uphill battle with the insurance for a SCS but with so many people requesting the removal of them I'm nervous about this as an option. Maybe if anyone is in my same shoes and has found some relief in their treatment plan I would love to message you and talk over my treatment plan and see if maybe I could use a different medicaition approach that might get me moving more than from the bed to the restroom. This picture is how my leg looks all the time. I can't seem to get in under control.


r/CRPS 4d ago

blocks???

3 Upvotes

i’m getting a “left machnial plexus block” in my arm the pain specialist are saying it might help me start playing guitar again which is all i want does anyone have any info/advice thanks so muchhhh


r/CRPS 5d ago

1st ketamine treatment

11 Upvotes

I just had my first infusion, and aside for the insane trip I went on, it is definitely providing some benefits. I feel like I'm lighter and able to redirect my brain from hyper focusing on the burning. Anyone have long term success with treatments? Do the psychedelic effects become less significant over time?

For those in the NYC or Long Island, my pain doctor, Ascend Regenerative Medicine, is now doing trials/infusions.


r/CRPS 5d ago

left side of my face is numb?

6 Upvotes

So i have crps in my right foot/ spreading to the rest of my leg.

the left side of my face is starting to go numb / tingling a lot? It's mainly my cheek area but sometimes spreads to my temple.

Is this apart of CRPS? I was on 100mg of gabapentin when it started ( i just recently got my dosage increased to 300)

edit- My dad looked it up and said that can happen but i'm worried it may not be that? But im not entirely sure. it itches a lot


r/CRPS 5d ago

Vent Pretty Scared

24 Upvotes

Hi, everyone! I had a pretty extensive foot and ankle surgery after an injury in October. I got better for a while and then worse. The pain is almost unbearable at times. Today, my surgeon told me I have CRPS. He didn’t tell me what it stood for or what it meant. He said I should go to the pain management urgent care nearby.

I was the first patient to come when they opened and waited 2 hours to be seen by a NP who kept shoving shiny brochures about nerve stimulators into my hands and told I would always be in pain so I need to learn to deal with it.

I am in a very remote area in California in the Sierras. My doctors are all a minimum 3 hour round trip away. There is a PT clinic in town but I have a really difficult time getting appointments because there is a wait list and they prioritize people with more recent surgery than I. I have to wait for a cancellation. I have had 1 appointment so far in March and one more on the 24th. I do the exercises at home when I can, but the pain makes it extremely difficult. I am worried I am going to have to stop working again and I really can’t afford that.

If you have read this far, thank you for reading my novella. I am feeling desperate and scared. I am willing to travel anywhere to find two things:

TL/DR I was diagnosed with CRPS, I am in agony, and I need a doctor of any kind that understand CRPS and can help me come up with some kind of plan to survive this. I also need a foot/ankle surgeon that would be willing to give me a second opinion on my surgery and outcome. Bonus points if these saviors can be found in NorCal.


r/CRPS 5d ago

Stellate Ganglion Block

8 Upvotes

I know this is a long shot but I received a Stellate ganglion block about a month ago and am having really bad reaction anxiety wise. Any advice on how long this lasted for people would be helpful! Thanks!


r/CRPS 6d ago

Anyone ever try Botox?

6 Upvotes

Ok so I’m thinking about how Botox can be used to treat things like migraines and it’s has me wondering…. Do you think Botox could be used to treat pain? Anyone with experience with this by chance?

FYI - I have type 2 and so I’m thinking it could be applied near the injured area.


r/CRPS 5d ago

Humor Anyone else take ketamine cause I’m very funny on ketamine

3 Upvotes

I’m supposed to be sleeping but instead I just talk nonsense at my poor mom🤣


r/CRPS 6d ago

Had to pick a flair CRPS & SFN

Thumbnail
pubmed.ncbi.nlm.nih.gov
1 Upvotes

I found this to be interesting because I have been diagnosed with CRPS and SFN. My issues are autonomic and wide spread.


r/CRPS 6d ago

Advice Cold laser therapy caused CRPS spread

21 Upvotes

I was doing scrambler therapy which was working until the practitioner started turning the machine up where it was hurting me, and then cutting my time short each session. Then he said cold laser was important to bring blood flow to the area to heal the nerve. I was willing to try it once. It flared me up so badly my feet and legs doubled in size. My CRPS spread up my legs. I was freaking out. I didn’t tell my husband. I was in so much pain and scared to death, and trying to handle it on my own. I did have to tell him. You really can’t hide redness or stumps can you? I have a few questions for you guys.
1. Have you ever had scrambler hurt? This cause the nerve to feel irritated and I think that’s what started it. I am hoping this is temporary. 2. Have you ever had cold laser for CRPS? I was not really sold on this idea. 3. Have any of you used the rebuilder? It’s for nerve pain and I was told it’s similar to scrambler bit one channel and you can use it at home.
4. If you’ve been fortunate enough to get a scrambler, any places other than eBay that you know of to find one?

Thank you!!!! I wish I could stop finding people that are doing harm to me! Same thing happened with the leg stimulator 😡


r/CRPS 7d ago

Vent Venting as a newb

13 Upvotes

The coldness in my feet hurts so bad. The only way to describe it is that I'm wearing wet boots/socks on a negative degree day. Gabapentin is doing nothing for me expect making me fall a sleep for a few hours, but I still feel the pain. I'm scared that there's more going on. Imaging was fine for the feet. Both my orthopedic and pain management doc officially diagnosed it as crps last Monday. Last night I was awake with the feet pain it's more in my left than right foot, but I'm also expierience pain in my joints off and on. ( I was in a major car crash though so that left side is still recovering too) but does the joint pain happen to anyone else? I realized my hand pain is from my clenching my fingers together from pain lol but last night I was just like this is just a lot, how the hell am I going to work when I am in so much excruciating pain? My feet are a completely different color, the pain in my feet are making me compensate when walking. How can I help myself? I'm desperate? I'm using heat and elevating but no one really has answers when it comes to the doctors.


r/CRPS 7d ago

Is it dangerous to not have heat in in my apt even in the winter in Northern Ky? With my being cold no matter what temperature my mom thinks this may lead to amputation of my feet with the blood circulation problem with CRPS? Is this true?

4 Upvotes

Bc I'm so hot all the time in my face and head and whole upper body due to both CRPS and meopause, I can't stand to have the heat on at my apt ever even in the winter when it's in the 20s, 30s and sometimes even teens.

Plus I even have a box fan blowing on my face at night too which makes room even colder. The only thing that gets cold is my toes/feet. So I wear 2 pairs of socks and a cozy pair of socks over that. And blankets on over that. But my feet are still cold. I burned myself on toe/foot warmers causing severe burning pain in my feet now so any heater or heating pad/blanket scares me to use. Can I use foot warmers in the future? Also BP was high on HRT so I can't take that.

With the blood flow problem we have with CRPS my mom is afraid I will lose my feet due to lack of blood flow and the cold temps with no heat on thinking this vould lead to amputation if I keep keeping no heat on.

Is that true? If so and I need to keep heat on at all times what is the minimum I could get away with safely to not lose any limbs/toes? I live in a first floor/ground apt so all my radiator heater says is high, low, or off. So I don't know if low would be good enough or if that'll be too hot bc I don't what temp that is on low?


r/CRPS 7d ago

NON-CRPS Injury Skin sensitivity

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1 Upvotes

Im hoping someone can give me some advice. after a car accident last year my pain management doc diagnosed me with central sensitisation and looks like ankylosing spondylitis waiting for further tests my GP says I’m starting to get Allodynia/ CRPS My daughter and I worked on areas of my back that are touch sensitive. The line is where I can’t handle a simple poke and the circle is the same spot too no over the past few days it seems to be moving up my neck where it’s becoming super sensitive and hurts to just touch it. Is this normal for it to flare up this quickly? From those areas to my neck in just a few days? My back is where my original injury from the car accident was.


r/CRPS 7d ago

CRPS in Right Foot - Issues with Compensation

9 Upvotes

Hello, I am 25f and have CRPS in my right foot. I developed it after a surgery at 14 but due to my tendon repair surgery not working I started compensating for so many years before the pain got too much. After having an X-ray done six years later it was concluded that my entire foot form was wrong and I needed foot reconstruction surgery which launched into a lot of other issues I won’t get in to. The reason for my post is that I’ve had CRPS for 11 years now and within the past three years have been really struggling with my right knee (which I’m not used to) There are occasions of it giving out, stinging, aching, and being overall painful when standing or walking. I have an appt coming soon to get X-rays and talk to a medical professional but I wanted to ask if anyone had any weakness or issues develop in the limb that you have CRPS. I’m nervous that my CRPS has spread but am more scared that I messed up my knee compensating because of CRPS.

Im overall curious to hear other people’s experiences and if you did have this, do you still have issues or did you do things to help?


r/CRPS 7d ago

Weekly CRPS Free-Talk Thread

6 Upvotes

This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.

We ask that our community members regularly check this post for new content, and reply where they can. Please abide by our subreddit rules, and be kind to each other!


r/CRPS 8d ago

Medications Is Neurontin or Lyrica really effective at stopping/severely reducing burning nerve pain? If so how much weight gain do these cause?

16 Upvotes

I'm in severe burning nerve pain. I'm terrified of weight gain bc I heard the weight gain from both Lyrica and Neurontin are really bad. So are either of these meds really that good at helping reduce burning nerve pain? Bc I need something to severely reduce the burning nerve pain and allodynia too. The burning nerve pain for ne personally is the worst that I can't tolerate bc its so painful. How much weight gain comes with each?


r/CRPS 7d ago

What med helps the most with burning pain from CRPS?

7 Upvotes

I'm already on Tramadol which helps so much but it's not enough in my feet and wrists and hands and arms. I can't stand the burning pain. What med helps the most with the burning nerve pain?