Newly diagnosed with CRPS in wrist following an acupuncture treatment

Brain and nerves
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I was recently diagnosed with CRPS in my left wrist that has spread to the whole hand. I am left-handed so it is very disabling. This condition makes me very anxious. I don’t know what to expect, how to resolve this and deal with the situation. Any advice, insights would be much appreciated.

I went for an acupuncture treatment on January 20 for my frozen shoulder (left) and I asked the acupuncturist to do some points for anxiety. She put a needle too deep and it hit the ulnar nerve on the left wrist. I felt a sharp pain on the spot then it seemed to go away. At the time, I did not know what was going on and unfortunately did not ask her to remove the needle. She left it there for 30 minutes.

After leaving the clinic, I noticed that I had tingling sensations when I bent and extended my hand. I also had intermittent burning sensations on my wrist and sometimes forearm, intermittent numbness at the fingertips. Then, my wrist and the back of my hand started swelling and later my fingers. Now, I have trouble moving my wrist laterally, bending my hand forward and back and raising my fingers completely because I have contractures in the finger joints. My wrist, hand and fingers are very stiff but the silver lining is that most of the time, I don’t have pain.

For the 1st month after the injury, the doctors, who din’t know what was wrong, told me to wear a wrist brace which only made things worse. Finally, I saw a doctor who suspected CRPS and referred me to a physiatrist. Unfortunately, there were some delays. The first physiatrist I saw misdiagnosed me with tendinitis. I finally saw a competent physiatrist on March 28 who diagnosed me with CRPS and started me on Prednisone and Gabapentin. It helps somewhat with the inflammation but the contractures to my fingers continue to progress and I fear it’s a little late for that treatment to be effective and reverse the condition.

I had only one physiotherapy treatment so far which was too intense and worsened the condition. I am waiting to be seen in occupational therapy at the hospital, but it will be in a few weeks. They say it is more effective if you start treatment in the first 3 months after the injury. It’s been 11 weeks now. Do you think the physiotherapy could help reverse the condition even if started after 3 months? I do some exercises for my hand and contrast baths (hot/cold) at home. Any suggestions of exercises or other treatments you did or had that help decrease symptoms and increase function?

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Hi Nathalie. Sorry to hear this but it’s early stages you might to be able to help it. 

I wouldn’t touch hot /cold contrast it would drive the nervous system insane. Never never put ice on affected limbs. 

Do you have cold or hot version of crps ? 

I agree get rid of brace. 

Use Epsom salt baths every day. Also I use basin of warm water 3 times a day I move my hands arms wrists gently in the water.  

Physio - you need someone who understands Crps and who will take is very slowly. 

Can you get to a hydrotherapy swimming pool for exercise. 

If you keep exercising even walking the blood will circulate and pain will lower 

Diet is very important.  

Cbd oil helps too for anxiety. 

Acupuncture could be dangerous if you put needles in affected limb. It could start a flare 

If you ever need bloods taken ask for a butterfly needle. It’s the thinnest. Again stops a flare /spread. 

I am 20 months in now started in my left ankle.  

My story is not good as 12 months into it . It spread to all limbs and head and face. But I am a rare patient ... 

don’t worry. 

Try read through the posts on here I am still learning 

What part of thr world are you in ? Ketamine infusion are helping me    I tried lots of nerve blocks and I think they started the spread.  So I wouldn’t recommend them.    

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Hi, sorry to hear about your CRPS. I developed mine after a fracture to my radius and ulna. I did the contrast therapy before it was properly diagnosed and I must say it made it worse. Some research out there says it’s nit good to do extremes. I am also in gabapentin but it takes a while to kick in and I take high dose of Vit C which has helped. It’s a cruel disorder and one I have had to learn to love with. Physio helped a bit as did some CBT to help to come to terms with it.  Time does help and if your lucky it will subside to an acceptable level.  Good luck x

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Oh dear - predictive text - sorry “on” and “live with it” 🤪

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Hi Vicky. Can you tell me in what way did CBt help. What kind of therapy did you do as in examples etc ? I am thinking of doing this as it’s gone full body on me and today my spine is so bad I want to amputate my back in my head. Like how can I even think such a thing ! 

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Hi Brenda! So sorry to hear about your condition! In my case, I started seeing a psychologist this week. His practice focuses on assessment and treatment of chronic illness, chronic pain, mood disorders, anxiety disorders, trauma, and other co-morbid conditions. I got his name through my physiatrist. If you want, I can let you know later on how it goes. Hang in there! I hope you find relief soon for your spine. I saw that you posted on my thread 11 hours ago. but I can't see your answer. It says that it is waiting to be moderated. I wonder why it is taking so long.   

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Hi Vicky! Thank you for your reply. I find that contrast therapy helps decrease the swelling. I use water not too hot and not too cold. I am taking vitamin C as well, also vitamin B complex, vitamin D, magnesium and cod fish oil, What dose of vitamin C are you taking? I read that it helps prevent CRPS for those having surgeries. I wonder what the benefits are once you have the condition. How did it help you?  I started CBT last week. I hope it will help, because I have not come to terms with all that happened: the acupuncture treatment that caused the injury and the delays before I was able to start treatment. Best of luck to you too!

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I don’t know why. There wasn’t anything bad in it !!  I hope they realesse soon. Thanks I was seeing s counsellor but not a specialist in pain. Need one of those.  

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Hi Brenda. I am very sorry to hear what happened to you. I read your story and all you went through... but I am glad to hear that the Ketamine infusions are helping you.

It feels like my condition has worsened in the past few days and seems to have spread to both my forearms (but not yet my right hand). I have some degree of numbness in my forearms.

I received a call this morning to start occupational therapy at the hospital this Wednesday. I am also going to try gentle aquafitness classes and leisure swim in warm water when I can.

I followed your advice and have stopped using contrast baths and now only use basin of warm water with Epsom salts two times a day and warm showers as well.

I don’t have cold or hot CRPS. My skin temperature is normal.

I cut sugar from my diet after an episode two days ago when I ate a piece of Easter vegan chocolate and both my forearms started to feel numb for a couple of hours. It subsided after I put my arms in a basin with warm water and Epsom salts but the numbness has now returned. It seems to be on and off now. Should I cut bread, pasta and cereals from my diet completely as well? Are fruits OK in moderation? I will have to consult a dietitian.

As for acupuncture, I will never do it again! It is the cause of my CRPS. She misplaced a needle or put it too deep and it struck a nerve and she left it there for the whole treatment. The pain subsided so I didn’t ask her to remove it. I was also told by another acupuncturist that she should have used smaller needles for the wrists.

I will ask my physiatrist and other specialists about CBD oil.

I luckily don’t have to take pain medication as I am mostly pain free. I do have a sore spot on the side of the wrist. It was triggered a few days ago when I exercised my wrist too much. It triggered pain, crawling sensations and pressure in my wrist and I think it worsened my condition further.

It’s my second week on Prednisone and Gabapentin and my physiatrist hoped the treatment would reverse the condition but now I feel disheartened that it does not work as expected and that the condition continues to progress.

I hope you feel a little better.

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Hello Nathalie,

Here is the big problem with PT/OT as the main treatment modality for CRPS: Your problem with anxiety would seem to indicate that to some extent your pain process has become centralized. That means, your central nervous system has been affected by your pain impulses coming from the injured hand and wrist. Whether you already had some of this going on related to the frozen shoulder, is for an experienced and up-to-date CRPS pain physician to determine.

I'm just a biologist and registered nurse, so more like the waitress than the head chef; I also have full-body CRPS that started out from my left knee to toes after a knee sprain, and subsequently just spread like wildfire after a surgery to "fix" the cartilage in my knee. HA. Anyway, I'm not a doctor, so I offer the following as points to ponder/check with your medical care staffers, as they have helped me find my way. If your staffers look at you like you have suddenly started speaking a foreign language, I would seriously consider looking for new (And more up-to-date) CRPS treatment people. Uninformed medical personnel can make you worse over time, or at the very least, delay you finding effective treatments. The understanding of what drives the pain and physical/neurological changes in CRPS has exploded in the last decade, and continues to do so. If your therapist or doctor last boned up on this condition in say, 1999 or even 2009, they are now seriously behind the times in terms of their overall understanding. Just saying. Check out the YouTube videos of Dr. Jay Joshi and Dr. Pradeep Chopra; both very current and knowledgeable. Dr. Joshua Prager and Anne Louise Oaklander are also good. Lots of other good ones too, but some BAD ones still making the rounds, who are not up to date and still want to do procedures that can do more harm than good for some patient populations.

As long as your medical staff/therapist is on board with this, just keep VERY gently working your arm,hand and fingers, to the limits of your range of motion. Now, this is important: NOT to the point of significant increase in pain. Only YOU know what point that is on any given day; might depend on weather, temperature, your stress levels, and even how you slept the night before. Even if you can only lie down or sit up, close your eyes and imagine that you are moving these affected body parts, that actually lights up the parts of your brain that correspond to those body parts, and helps more than you might think. You may notice that even this "thinking/imaging" exercise of your affected body parts makes your pain a bit worse: If so, know that you are most emphatically not Looney Tunes; this is just human neurological functioning for better and for worse!

This is not a "no pain, no gain" situation. Additional pain in your situation will just increase Central Sensitization. Ditto, "Desensitization" therapy activities: Too late. You are most likely already "sensitized".

Look for a doctor and/or therapist who understand about Central Sensitization. You are going to need help mobilizing the fluid in your affected hand, and managing your pain and anxiety. By the way; anxiety just basically comes along for the ride when you have centralized pain. Doesn't make you weak, silly, or a drama queen; it's one of the most common symptoms of a centralized pain process. Virtually 100% of CRPS patients complain of it, at some point in time. One of my doctors calls it "Brain on fire syndrome".

Ketamine infusions and a ketogenic diet, plus low dose Naltrexone daily, have been the most helpful to me so far. I am by no means cured, but in the first 3 weeks after a Ketamine IV treatment, I feel almost like my old self. I was on gabapentin for awhile too, but I gained over 20 lbs in 4 months, and was nauseated and dizzy much of the time, so that scotched that. It worked to take away half the burning pain, but I was at greater risk of falls, not to mention splitting my pants up the back!

Everybody's different, but in so many ways we share common experiences too, with CRPS...

Wishing you relief, and soon!

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Nathalie,

Just putting this out there, in case I forgot to cover in some other post:  The rapid spread of CRPS signs and symptoms after a trauma can be non-length dependent small fiber neuropathy. This isn't really an alternate diagnosis to CRPS, as small-fiber neuropathy is eventually seen in most CRPS patients who don't recover spontaneously in weeks to months after symptom onset. And it sure sounds as if you fit the diagnostic criteria of CRPS, per what you've already heard from your medical team. But it just so happens that the non-length dependent small fiber loss often seen on skin punch biopsy with what you are describing, is often better treated with immune therapies such as your prednisone, and the sooner the better, and if that doesn't work for you, you may need to investigate TPE and or IVIg... That's total plasma exchange and intravenous Immunoglobulin, respectively. You can think of this spreading of your signs and symptoms as an autoimmune response, much like that seen in Lupus and MS, say. So far, I've only found one MD who doesn't look at me like a deer in the headlights when I talk to him about this. Dr. Pradeep Chopra at Brown University in Rhode Island has a presentation on YouTube where he actually talks about the recent uptick in CRPS patients being diagnosed with MCAS, or mast cell activation syndrome; which is basically what we are talking about here. It turns out that the rapid-onset, rapid spread-type CRPS is often autoimmune, and affects the dorsal root ganglia of the spine early on, and so can be treated like a flare of any other systemic autoimmune disease; this greatly enhances your chance of good outcome compared to the conventional CRPS general treatment for pain, insomnia, and anxiety management alone. Google it! Used to be that in the CRPS literature, there was a heck of a lot of "this condition spreads by unknown mechanisms" and "nobody knows why some trauma patients develop CRPS while others don't...Maybe a psychological component?", but now, there is a preponderance of evidence that the mechanisms for a subset of patients are actually autoimmune in nature. That being said, I don't know if it will change things for you immediately; much depends on your medical team and how up to date they are on the literature, or alternatively, how open they are to their patients dragging in medical journal abstracts for their reading pleasure. One of my faves, and the abstract is a quick read: Gorson KC et al, Journal Neurosurg Psychiatry, 2008 Feb; 79(2)163-9. Epub 2007 Oct.2. The article is titled: Non-length dependent small fibre neuropathy/ganglionopathy.

Doesn't so much matter if you haven't had skin punch biopsies done... It's the pattern of sign and symptom spread that is more significant, though biopsy could objectively confirm what you are feeling/sensing at this point, and might encourage a reluctant practitioner to refocus his or her attentions if necessary for you, if you need to investigate other possible treatment avenues after your prednisone treatment is completed.

A big problem right now is that most doctors are oblivious to the fact that whereas most CRPS patients have spread of their signs and symptoms that is predominant first in hands and feet, known as length-dependent (most everybody thinks of this as the pattern in diabetic patients who have had trouble managing their blood glucose levels, and they're right about that), meaning your small-fiber nerves are damaged all the way at the very ends before maybe spreading to other body parts(ie: hands and/or feet first, and later to the arms, legs, gut, etc.) a subset of patients has signs that don't necessarily follow the pattern: I am one of the rare ones myself: I had the symptoms and the color changes in my forearms prior to my hands becoming affected. Turns out the way in is to treat the autoimmune component; not just the pain, and preferably by the 3 month mark; looks to me like after about month 8 after symptom onset, you have missed the window for best therapeutic effect, per the literature, though. But even though I didn't get Ketamine IV's until 2 years plus after symptom onset, I STILL get a lot of benefit. That may be because just like TPE and IVIg, Ketamine modulates immune system function; normalizes the "over-kill" response, basically. Wishing you luck in your journey!

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Thank you so much Sabrina for all the info. It is really eye-opening! Sorry to hear about your condition but happy you found therapies that seem to help you a lot! I printed your two messages and read them. A lot to take in! Very important and useful info. I do have problems with my immune system. I found out about two years ago that I have high levels of blood Antinuclear Antibodies : 640, pattern : nucleolar which lead to speculation that I might had an auto-immune disease at the time that was later ruled out. But I am still being followed by a rhumatologist. As for a good physiatrist, your posts made me realize I really need to get one at the rehab centre at the hospital here. I believe they are the experts here. I will keep in touch. Thanks again so much! It's really appreciated!

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Hi there     

Can I ask how you can have crps and be pain free ? I thought this was number 1 symptom with it ?  Or is it you might be going into remission already and it’s going 

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I did not have pain in the beginning. I did start having nerve pain just a couple of days before I started Gabapentin and it subsided with the medication. I also have a sore spot on the side of the wrist that can be triggered with certain movements or exercise. I think it is possible to have CRPS without the pain although probably rare. There is a person in this forum who doesn't have pain:  

[david80207] david80207★2CRPS without pain?

I had wrist surgery six months ago and almost immediately develop CRPS symptoms. I had abnormal swelling, abnormal sweating in the affected wrist,  abnormal hand color and stiffness.  My doctor diagnosed my condition as CR PS. I have lost the swelling but the other symptoms prevail. I...

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I was diagnosed with CRPS last April in my right hand, which is also the hand that I write with. I suspect it was related to a fall I suffered the previous October. The "on fire" feeling in my hand was unbearable, and the immobility frightening. My neurologist confirmed lots of reception in the hand, and my pain management doctor prescribed medication (increased dose of opiates that I'd taken prior for fibromyalgia, and added gabapentin. Not long after, he preformed 2 ganglion nerve blocks on the right side. The pain subsided quickly, and the mobility gradually returned to normal. He said that they could wear off as soon as 4-6 months, but only now, a year later, am I being too experience questionable symptoms. From my understanding, the nerve blocks are most successful early in treatment. I'm still taking the gabapentin, and and pain medication in what he says is a small dose.

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Hello Nathalie

I also broke my right wrist in 2016 and got cprs. I was referred to physio

Hand therapy dept. My hand was very fat and fingers were all swollen. I was worried that hand would be no good.

I was given one to one with therapist who manipulated hand and pulled my arm which I really felt helped me loads. There was exercises to do.

I was given some playdoh stuff to squeeze in my hand and this helped me. There was hot wax to put my hand in and that was nice. There was different textures to touch to desensitize my hand . When I went my hand was swollen very hot and shiny. I was given pregabalin 100ml approx twice a day this enabled me to get my hand working. This was reduced to 75ml twice a day.

I went once a week. I bought pack therapeutic hand balls from Tesco and squeezed them. I did daily exercises they taught me of bending my wrist down and then turning it the other way . I did hot and cold bathing about four times a day. I got a bowl of rice in tub and filled it with objects then had to get objects one by one out of tub. My hand liked the feel of the rice and I think it helped. I was unable write for some time so had to learn to write left handed . I had trouble shopping and doing change .

Gradually my hand improved. My fingers and hand lost its swollen appearance . My hand now is much better.

I'm able to function normally and write and do change . It sometimes feels stiff so I do keep up exercises and start bathing in hot and cold .

I no longer take any tablets for my hand I wish you success but you must work your hand in order to get back movement. You must go to physio and do all the exercises . I wish you luck

.

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I luv hearing good news story 

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I'm so glad you had such success! This is the ideal outcome, of course!

Unfortunately, at least in the U.S., the average patient doesn't get the CRPS diagnosis for a couple of years, and may see 5-7 healthcare providers before getting answers about the condition.

Early, aggressive, multi-modal therapy with desensitization obviously worked for you. That's best possible outcome!

In an ideal world it would be like this for all CRPS patients (About 80% of whom eventually recover significant function over weeks to a couple of years after symptom onset), but a major problem is that healthcare personnel often don't make a distinction between the cases that are early, confined to a single limb, with no significant signs and symptoms of central sensitization... And cases where the condition has obviously become centralized throughout the nervous system, as evidenced by the spreading of signs and symptoms from one limb to another (or maybe all of them), and increased anxiety, insomnia, digestive distress, and short-term memory problems, muscle spasms, etc.. Sometimes the spread is due to a very late diagnosis; even 10 or more years is not so unusual; or it can be just a trauma or infection-induced, autoimmune-mediated, rapid onset of signs and symptoms in which the process becomes centralized within days to months instead of months to years.

CRPS that has already spread is just a whole different animal to try and treat; at that point, a nerve block is by definition not going to be successful, and may just cause a big flare of pain and debility. A nerve block under these circumstances is like shutting the barn door after all the horses already ran out. What nerve do you block if you already have central nervous system sensitization/centralization, where the abnormal ebb and flow of pain impulses has reached your spinal cord and brain?

It would be great if healthcare staffers, not just the specialists but the generalists too, learned to recognize the signs and symptoms of CRPS early on, so they could treat as soon as possible, and make early referrals to specialists if the localized/desensitization protocols were not working for a given patient. But at least historically this hasn't happened.

Fortunately, the younger doctors and nurses/therapists are coming out of school now with better (if not entirely complete) knowledge about conditions such as CRPS and Fibromyalgia, autoimmunity in general, etc..

Unfortunately, there are still healthcare providers out there who think these conditions are all, or at least partly, "in your head".

On this site, I'm impressed that most people have been proactive, asked (and continue to ask) questions, keep looking for more and better answers. I feel sorry for people who get CRPS and have no idea what's happening, and their medical staffers also have no idea. You can see under these circumstances, depression can become a huge problem. Nothing like being in pain, and having those around you tell you repeatedly that this is all (or mostly, anyway) in your head. How they think we can change our sweating patterns, or the color of one or more limbs at will, is a mystery, right??

One of the things that gives life meaning with this condition, is to try and get the information out there: If we can change even one CRPS patient's life, by giving them the knowledge they need to get faster/better treatment and locate good resources for care, then that is making a needed difference!

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I agree. To say it’s in your head is the highest insult and so ignorant.