Hi, does anyone have this and could share how to overcome this. Complex Neurological Pain Syndrome
i was just diagnosed with early CRPS in my ankle after severe trauma and ankle surgery.
a support group for this would be so helpful !
thank you so much!!?
Hi
I have it in my hand following a broken wrist 3 years ago. Firstly don't panic and don't read the worst cases online, these will just scare you. Important thing is desensitization and movement. No know it hurts but it's the only way to get on with this thing. There are some great support groups on Facebook. CRPSuk is one you'll find many people who understand what you're going through.
Hello.
Yes, keep it moving and expose the foot & ankle to touch. Soft things then rougher things, a foot scrub with a brush or all natural exfoliating scrub. Wear a sock. But so important to keep in moving!
Take care & keep in touch.
Hi there. I got in left ankle too 13 months ago.
I would highly recommend you wear a sock and keep it on. My foot got used to not wearing one in June on holidays. Now it's horrific pain with sock. I need to get it back for winter.
It's a tough disease.
What symptoms do you have ?
Are you walking
Thank you so much!!
I am non weight bearing for another month for a serious pilon fracture surgery. So I haven't walked yet. I am in a boot that I can take off and move my ankle.
I have very burning and extremely tight shiny skin all along ankle up to mid shin .
Also have numbness pins and needles
Stiffness . Sometimes cold and then warm hot
Color changes
My husband and I think at times it has a slight sweat
I don't know where to go who has expertise in this. I am doing pt and trying to move ankle up and down when out of boot but Loss of range of motion.
I am so very grateful for any help!!
Kindest regards,
Colleen
Thank you so much ! I will get a sock. I think that's a great idea.
What worked best for you to get better or to alleviate symptoms?
Thank you !
Blessings ,
Colleen
Thank you so much!!
Do you take any Meds or move and desensitize?
My ankle is very tight and shiny. Did you have that?
I am grateful for any recommendations.
Kindest regards,
Colleen
Hi Colleen
The most important thing is you seem to have been diagnosed early. Personally I don't take meds as I react badly to them. You should be taking high dose vitamin c each day, they say that can help. I broke my wrist and was operated on two days later a Friday and work expected me back on the Monday, (it was only a broken wrist!!!). I've worked from that day and pushed myself, surgeon says that's been my saving grace. I had physio fairly quickly and did what was asked, was at the hospital three times a week, it was physio who thought it may be crps which was confirmed by surgeon. I'm not going to lie its a tough disease to cope with both physically and mentally, but I firmly believe you have to help yourself, keep moving it. If you can get referred then there is a crps centre in Bath which is apparently tremendous. Good luck
I'd be careful with the idea of a brush, yes desensitization is extremely important but start with something like a silk scarf, move up to cotton wool or velvet, do it in your good ankle first then bad one so your brain can realise what's normal. Warm and cool bowls of water too, don't go too hot or cold, Epsom salts in water too.
Hello Colleen,
So sorry to hear this has happened to you. You are probably already noticing that it can be hard to get good information about CRPS, as even some medical professionals don't know much about it; worse yet, some of them think they DO know all about it, but they don't; and they end up putting damaging info out there that can leave patients thinking this thing is all their own fault, or at least, all in his/her head.
I'm a registered nurse, and I had actually seen one of my patients go through CRPS symptom onset, diagnosis, treatment, and full remission in 6 months; fortunately, her post-fracture/ankle surgery CRPS never spread upward from her foot, because her physical therapist and surgeon had seen this whole scenario before and jumped on it like white on rice. She literally got diagnosed within one week of her first skin color changes.
A year after I cared for her, I took a slip/no fall on the icy steps of a patient's home, and within 6 weeks the sprained knee that wouldn't stop hurting, started tingling and burning. It spread to my foot and lower leg. The color changes were fleeting at that point. I had to start wearing sweat socks and sneakers to work, because my foot was so wet from sweat that it would slip around in any shoe that couldn't be snugged up with laces or Velcro. Because my knee was getting unstable and increasingly painful and swollen, I finally had an arthroscopy/chondroplasty 5 months after the original injury. The good news was, for a couple of days after surgery, the knee felt less painful and more stable than it had since I sprained it. The bad news was that the color changes and burning pain/tingling came back with a vengeance on post-op day 4, and rapidly spread to my right leg, then my forearms, hands, and the left side of my face. All along, I was reporting my symptoms to my healthcare providers of all disciplines. All along they were telling me it couldn't be nerve damage or it would have shown up immediately after the injury. I had two physicians do testing and tell me to my face that "One thing's for sure; this is not neuropathy". I had multiple providers tell me that for sure it was NOT CRPS because of the spread of signs and symptoms from the original location. I had to quit working, because the symptoms spread to affect my central nervous system; I was dizzy and had blurry vision. I couldn't stand loud noise or bright light. I would scream when people came up behind me and put a hand on my shoulder; first, because of the startle reflex, but within seconds, the burning pain was so severe that I could hardly breathe or speak. And there was a rumor going around at work that I was faking all this stuff because the original injury resulted in a work comp claim. The insurance company refused to pay for any more doctors or treatments. I started paying out of pocket, because I was scared out of my mind that as bad as things were, they might get even worse without treatment. Finally, I found Dr. Lubenow at Rush in Chicago; he did a skin punch biopsy in 3 places on my left leg, and the results came back proving I have severe, non-length dependent small fiber neuropathy. This turns out to be a very common underlying condition in CRPS. He wanted a bunch of labs done to rule out the other possible causes of my symptoms; the insurance company finally authorized the testing and a neurology consult 10 months later. Only when all the test results were available, could Dr. Lubenow finally confirm that this was definitely CRPS.
Too late to make a long story short 
but just to let you know, there is nothing you did to cause this. I'm a healthcare professional and it STILL took me over 2 years to get a diagnosis. And as we all know, the sooner you get treatment the better; in my case it just wasn't in the cards, I guess. But here's some good news: I researched the available literature on this baby like nobody's business, because I was determined that just because I wasn't having much luck getting anybody to believe me, didn't mean there was nothing I could do. So I concentrated my efforts on finding ways to help myself that didn't involve prescription medications or expensive equipment, etc.; in other words, what could I do at home with basically no money, and limited energy and (on flare days) limited mobility?
I learned from the medical journal articles on the mechanisms of CRPS and the process of central sensitization that a big baddie for us is that like a lot of other inflammatory conditions, CRPS actually gets worse in part when high levels of circulating inflammatory chemicals eventually mess with glucose metabolism. This results in the thin skin, swelling, and thickening of small blood vessels everywhere, but worst usually in the affected extremities. You end up with bad circulation to the area, which just sets you up for more inflammation, and ultimately, the problems with glucose metabolism affect your body's ability to manufacture the proteins that provide your energy on the cellular level. This is why you get the rapidly-growing nails and hair thing, often followed by hair loss and nail cracking/breakage. You end up having changes in your skin, circulation, and bones and joints that look pretty much like what a poorly-controlled diabetic would get, and that's because on a cellular and vascular level, your body doesn't know the difference between the inflammation/glucose metabolism/mitochondrial protein synthesis of diabetes and of CRPS; same crap, different disease!
Now, what to do? I found one diet that has been used for almost 100 years to keep patients in ketosis. That's a normal metabolic fasting state that naturally reduces inflammation, thereby stopping the vicious cycle above. This diet was originally used by a pediatric neurologist at Johns Hopkins to help epileptic children who couldn't tolerate the drugs available at that time. And it worked! I eat a low-carb, moderate protein, very high-fat diet; I have an 8-hour window every day, in which I eat two good meals, and maybe a snack. You would think I'd be hungry all the time, but I almost never am. I drink 12 oz of coffee with 4 tablespoons of unrefined virgin coconut oil and 3 tablespoons pasture-fed butter. I often go 6-8 hours without feeling any hunger after this, and my energy level is steady, all things considered. I concentrate 95% of the time on consuming greens, brightly-colored veggies and berries, nuts, seeds, small servings of beans, and very occasionally, whole grains. I confess I eat about 1 oz 70% chocolate most evenings, as well. You might wonder if I'm like a big blimp now, since I eat so much fat; nope; I'm back to my usual size 12 and my weight has been stable for almost a year (I did blow up while on (Pre-ketogenic diet pain med) Neurontin 2 years ago, mostly because I was nauseous if I didn't have something in my stomach at all times).There are a lot of good books about versions of this diet; the Dr. Joel Fuhrman "GOMBS" diet is probably the best I've seen in terms of nutrition; I give the underlying science an "A+".The Bullet-Proof Executive/Bullet Proof Diet has a lot of convenient and time-saving hacks, but as an RN/BS, I find the science only rates a "B".
Does this diet work?? Oh, yeah!! If I go off the diet for more than say, one meal a week, I pay through the nose. And skin, bones and joints! Aack! I only take one prescription med these days, and that's low dose naltrexone. If I forget my daily dose, it's pay through the nose time yet again, so I only forgot once; hopefully won't be that stupid again. Despite my CRPS being full body, I still walk, work in my yard on good days, go shopping with my husband about once per week on average, and haven't had a fall in a year. I use a walker and sometimes even wear headphones when I'm out walking on hard pavement or where the noise and chaos can be extreme. But honestly, though the central sensitization symptoms and the pain wax and wane with some factors like cold weather, barometric pressure and my husband being unreasonable and stubborn (NOTE: He often feels the same about me!)I can still get a lot done in the average day; enough to keep from feeling discouraged. Enough so I can go to bed honestly physically tired, instead of wired on nervous energy. Don't know if this will work for everyone; but so far, it is definitely working for me! Good luck finding your path through this... It CAN be done. And there's a lot of exciting clinical research being done even as we speak, about other ways to stop the inflammation/glucose/protein synthesis errors problem in its nasty little tracks as well!!
Hi Coleen, which county are you in ?
If possible ask yr gp to refer you to pain management. Mine has helped a great deal from medication to nerve block injections through to an SCS (spinal cord stimulator). Mine was in knee after an operation in 2013 unlucky for me mine has spread. I have been to Bath Mineral Hospital for a 2 week in patient stay and they are fantastic gave me a great insite to CRPS. Try Hydrotherapy. Or go to a local spa with a warm pool and try walking in the water. Also try mirror therapy where you mirror your good foot and your brain thinks it's your CRPS foot your looking at and have positive thoughts. Yes try desensitisation therapy even if it starts with a few seconds of tolerance in yr ankle. Some touch is better than none. I am on fb if you ever want to private chat first name above then Barnett wedding photo picture of me n hubby. And yes please don't read things on the internet, I did that when first diagnosed and scared the living daylights out of me.
My gp gave me capsicum cream to try using on crps area which can help also. Gentle hugs xxx
Hello.
By brush, I meant a soft bristle brush. But only use it after you have been desensitizing with other things. Work up to a soft bristle brush. And when you do, use it genlty.
Start desensitizing with something soft until you are used it then go to something with a little more texture until you are used to that then so on and so on.
I did this and it does work. I have CRPS in my right foot and leg.
I will leave a longer message later.
Gentle hugs.
Thank you so much! I am on Facebook and will contact you. I very much appreciate your helpful post.
It gives me hope and encouragement!!
i live in USA but I would travel anywhere for help. i will try to get that cream too.
This forum has been so wonderful. I am so appreciative,
Blessings,
colleen
thank you so much!! I very much appreciate your help. I will start gentle desensitization, I have been trying soft clothes and just tried socks.
This is a big help to learn ways to fight this.
I am so thankful for this support!!
Hello.
I have done physical therapy in a warm salt water pool. I go into the deep end and use a pool noodle under my arms to support me and do range of motion exercises. You are in the deep end of the pool so your feet do not touch the bottom. I did range if motion exercises like scissor motions out to the side and back to the middle. Scissor motions one leg back and one leg forward, then switch, back and forth, back and forth. Then I scissored my legs across each other below me.
I also did different types of walking exercises in the pool.
I also did these exercises at the local recreational center pool. But their pool chemicals eventually started hurting my foot.
Look up aquatic exercises for CRPS on the internet.
I avoided ice on my foot as ice is bad for CRPS. Please avoid ice. It only makes it worse. If my foot feels like it is burning hot, I run cool water over it or hold it in front of a fan. If it is burning cold I put a soft fuzzy sock on and put the foot under a blanket.
I have found that an antihistamine like Benadryl has really helped my pain. I take a prescription antihistamine now. I also take Gabapentin and Pristiq.
Prescription pain medication does not work for me. I must be immune it.
I have acupuncture once a week to help me with sleep, anxiety and just over well being.
I watch comedies and laugh. I do things I enjoy, like working jigsaw puzzles, crossword puzzles, reading, coloring in adult coloring books. The coloring books are creative and fun and really do relieve stress. I felt a little silly when I first started coloring. Like I was indulging in a child's toy. But I really started to enjoy it and found it took my mind off the pain.
I try to get sunshine and fresh air everyday day.
I try to eat a "clean" diet. I try to avoid any food or drink that will over stimulate my nervous system. I try to avoid processed foods and franchise restaurant foods since they are full of chemicals and toxins.
I don't put lotion or any substances on my foot as I have found that it causes pain in my foot.
I use all natural shower wash, soap, laundry products, shampoo and conditioner, deoderant, toothpaste etc.
I try to have a good attitude. I look at it as something to overcome.
I hope this helps. Take care.
Gentle hugs.
Thank you so much! Your message helped me so much, 😊 I will do this, funny I liked the fan too!
I can't do swim therapy yet because my surgery is still repairing, I am 3 months non weight bearing which makes it harder to work on this.
i was wondering if you ever did nerve blocks? Did they help?
Also, I note cited my skin has become shiny tight and glossy. Is this a symptom and. Have you experienced that? What can I do to lessen this?
I tried to find you on Facebook too. But couldn't, I had hoped to maybe talk more.
Thank you again for your uplifting messages. It has been so helpful
blessings,
colleen
Hello.
I never did the nerve blocks. They can help, they can do nothing or they can make things worse. I have Fibromyalgia and my health is fragile and I don't have good luck with medicines and therapies. So, I decided, along with my family to not do nerve blocks.
From what I understand, they are effective for a while but each subsequent nerve block helps less and less and then there may be one that will cause more pain & maybe make the CRPS spread. So, that was a deterrent for me too.
The skin on my foot did get tight and shiny and on my shin too. It is a symptom of CRPS. It did pass for me. I'm not sure what made that better.
I will get back to you with some more tips.
I will private message you.
Hubby is bugging me for attention:-)
Gentle hugs.
Tell me it's not so!!!!! I've been in pain for almost 5 years. I have found that more drugs makes my head feel stupid not less painful. I have a dr that believes me. I've had blocks with out result. I have hypoglycemia which means my body doesn't process glucose.
I fall all the time (it's in my feet and knees) my RA dr suggested a walker. Get that a WALKER as a solution.
I can't live like this. The family doesn't understand and neither does my job.
I am so sad to hear all your struggles with this. I appreciate your message so much. I am scared and can't find help. Do you know where anywhere in USA or anywhere where they specialize in this? I pray it did not progress.
I am going to start this clean diet too.
I am praying for all the wonderful caring people on this forum who need love care understanding and direction.
It is a lot for me to handle, I feel do blessed to have this support.
thank you so much!!
Colleen
❤️🙏😊
thank you so much! I look forward to your message. I am thankful for your support and advice that issi helpful. I must admit I am scared, I do not like this shine in my ankle
I was wondering if you had a pain clinic or doctor who has been helpful for you too?
Thank you so much!!
Blessings and hugs,
colleen
xo