Posted , 11 users are following.
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!!?
0 likes, 72 replies
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maddy1234 colleen_36473
Posted
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.
colleen_36473 maddy1234
Posted
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
Struggling50 colleen_36473
Posted
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.
colleen_36473 Struggling50
Posted
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
maddy1234 colleen_36473
Posted
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.
brenda_savvy colleen_36473
Posted
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
colleen_36473 brenda_savvy
Posted
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
maddy1234 colleen_36473
Posted
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
sabrina51474 colleen_36473
Posted
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!!
Gogee123 sabrina51474
Posted
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.
colleen_36473 sabrina51474
Posted
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
??🙏😊
Struggling50 sabrina51474
Posted
Hello, Sabrina.
I am sorry to hear that you have full body CRPS but glad to hear that you have gotten to a place that you can handle the pain and disability.
I have had CRPS for 2 years and 2 months.
I have CRPS in my right foot and leg. I was in an ATV accident that crushed my right foot. The cuboid bone, the 5th Metatersil & seasamoid bone were broken but the breaks did not show up on the initial x-rays. Sorry, if my spelling of the bones is incorrect. But a month after the accident, I was back in the ER. During that month I was in horrendous pain, having ankle & foot spasms I couldn't control and could not sleep. What finally got me back to the hospital was, my leg was tremoring so hard it was bouncing off the couch, my foot was twisted inward and I was not right in the head. Foggy headed and confused.
Fortunately for me the ER doctor knew what is was by just looking at the foot. He took one look and said, "that looks like CRPS." My husband and I had never heard of CRPS. The doctor gave us a printout on it. My husband read it and said, " I really hope you don't have this!" I didn't read it. I didn't need to be completely freaked out at that point. They also did x-rays and did not see any breaks.
I was able to see an orthopedic foot surgeon 2 days later. He had an MRI done. The MRI showed the 3 breaks and showed the unbelievable amount of inflammation and marrow oozing out of all my bones. I not only had broken bones but a severe crush injury. After all a thousand pound ATV threw me then landed on top of my foot, crushing it and pinning it to the ground and hyperextending my ankle.
The doctor confirmed the CRPS diagnosis. And a few weeks later a neurologist did tests to confirm the diagnosis and he added that it is Type 2.
I was put on Gabapentin. I was also given prescriptions for opiods and an old school antidepressant. I was already on Pristiq because I have Fibromyalgia.
I took the Gabapentin but did not take the opiods or the old school antidepressant. I had already tried opiods after my initial doctor visit. The opiods did nothing for my pain. I didn't want to become addicted to them so I quit taking them.
I did research as well and found there was a clinical trial for Neridronate in Denver. I live in Colorado. I talked to them over the phone. I was accepted even before I filled out the paperwork. They were interested because I was so newly diagnosed. They sent the paperwork and I started filling it out. That's when I discovered the trial was only for Type 1. I have Type 2.
So, my research and trial and error treatments and protocols continued.
Since I live in Colorado, we have a legalized substance. It did help with pain, spans and sleep.
I also was doing physical therapy in a warm salt water pool. That was going well until one therapist had me do jumping jacks. Even though I was in water up to my chin, the pounding on the bottom of the pool reinjured my foot and spread the CRPS up my leg. Now I had pain in my shin and knee and atrophy and burning in my thigh.
I quit physical therapy and coughed it for a few months.
I finally decided I had to take control, as best as I could, of my treatment.
I joined the local rec center and did my range of motion and walking exercises in their pool.
Now, I had been on crutches since the accident. Unable to touch my foot down.
After doing my own physical therapy I was able to put my foot down while walking with the crutches. I was able to swim laps using just one leg. I started riding a recumbent bicycle set on the lowest setting.
I did this for 7 months at the rec center. Until a crazy guy started sexually harassing me. I reported him to management. They had had trouble with him before but not something as serious as sexual harassment. They banned him from the facility for life. I was so embarrassed that I didn't go back.
But after a few days the burning was better. They did use A LOT of chemicals in their pool. I went through SO many swimsuits. The chemicals just ate them up.
At this same time I started taking Benadryl. I noticed a reduction in pain. I started walking around my kitchen without the crutches. It hurt but I did it. Pretty soon I was walking around the house then outside then in public. I had a limp and it hurt but I was walking again!
The pain & spasms & swelling & skin discoloration got better and better.
I have been walking without crutches for a year and a month.
I now only take Pristiq XR 50 mg once a day, 600 mg Gabapentin 3 times a day and 12.5 mg Hydroxyzine HCL (prescription antihistamine ) at bedtime. It is funny that when I started taking an antihistamine I started having less pain and was able to start walking again. And antihistamines are anti-inflammatory. And you found in your research that inflammation is a key factor in CRPS.
Thank you for your post. It made a connection for me.
I also watch what I eat. I avoid sugar, carbs, alcohol, processed foods and franchise restaurant food. I do avoid caffeine. I eat almonds, meat, lots of colorful veggies and fruit ( rainbow diet), eggs and some diary. Drink lots of water.
I get acupuncture once a week for sleep, relaxation and overall well-being.
I have considered tamany Low Dose Naltrexone before.
I really want to get off the Gabapentin and the Hydroxyzine.
I have weaned from 2700 mg of Gabapentin a day to 1800 mg a day.
I have weaned from 25 mg Hydroxyzine a day to 12.5 mg a day. But as I have lowered my dose of Hydroxyzine I have noticed an uptick in pain in my foot & shin and a little swelling and discoloration. I had been almost pain free and sometimes pain free when the dose of antihistamine is higher.
I will try your suggestions of eating more fat. I have good quality coconut oil.
The Gabapentin has made me put on weight.
Would you private message me his to wean off Gabapentin completely and is it safe to come off of it completely? Same with Hydroxyzine? How do you think the Low Dose Naltrexone is working for you?
The protocol I am using is working for me but I hate being on so many drugs.
Thank you for your suggestions.
Take care. Gentle hugs.
Struggling50 colleen_36473
Posted
Hi, Colleen.
I understand your fear. When my foot acts up, I feel that fear again. But I get a hold of it. Don't dwell in it. Don't read the scary stuff on the internet, it will just make everything worse.
Try to keep an upbeat positive attitude. It is difficult but you have to control it not let it control you.
CRPS changes how your treatment for the surgery is going to go. Conventional physical therapy is not going to work for CRPS. You have to take control of your treatment unless you can find someone who knows how to treat CRPS and do physical therapy for CRPS.
The medical community doesn't know much about CRPS, what causes it or how to treat it. You must be proactive. If they want you to do traditional physical therapy you have to stand up to them and tell them that it doesn't work for CRPS. I had to do this on more than one occasion. Until I was hurt by physical therapy and i quit going and started doing it on my own.
You can get control of this!
Paula Abdul has CRPS in her neck, shoulder, arm & hand. She went to a clinic in California. Google Paula Abdul has CRPS. There is an interview with her about the treatment.
I know the Mayo Clinic has a program for CRPS.
Look on the internet forNeridronate trials near you.
It is trial and error. You have to find what works for you.
I'm praying for you.
Gentle hugs.
colleen_36473 Struggling50
Posted
You are not going to believe this but I live on Colorado too coincidentally! C I live in mountains in beaver creek area. How amazing! Maybe a God moment!!
Can you share which dr you might recommend or pain clinic in denver or in surrounding area in Colorado of where you go?
There is no one here that understands this syndrome. This might help !
Maybe we could even meet. Too ! I think it is a beautiful coincidence . 😊🙏 truly amazing!
I read about your injury in your post above and I am so very sad with all you have gone through and it was so major. You are an amazing inspirational and beautiful courageous person . I am so blessed to meet you on this forum and hear your encouraging words.
Maybe we can all triumph together!
Blessings,
Colleen
You can private message me too!
Struggling50 colleen_36473
Posted
Wow! That is so amazing! I live in a little town called Parachute. It is on I-70 west of Glenwood Springs. I was tentatively diagnosed in the Rifle ER. Then I saw doctors in Grand Junction. Right now a see 2 doctors at the Grand River Clinic in Battlement Mesa. They really don't do much for me except give me my Gabapentin prescription and try to give me opiod pain medication. Opiods don't work for me.
Have you tried the Stedman Clinic? They diagnosed me with Fibromyalgia in 2004 when they were the Stedman Hawkins Clinic.
I considered going there for injections for the CRPS but decided against it because I have such fragile health and "bad luck".
I think it is a God send too. Maybe we could meet in Glenwood Springs. That is about halfway, I think. There is all the bridge construction there right now.
I have always wanted to share what I have been through and maybe be able to help someone else.
Weirdly enough, my sister in law, my husband's sister, injured her shoulder at work. She is a nurse. She developed CRPS in her arm and shoulder. I don't know how she is doing but last I heard she was doing pretty well. She followed the desensitization and keeping it moving protocol. I don't know what she did for pain. She is a nurse and couldn't take opiods or marijuana.
I took marijuana for two years. I ate one Indica marijuana edible at bedtime. This is the only time I took it, at bedtime. I put me to sleep & kept me asleep, stopped the spasms and killed the pain all day. I would start to have some pain in the evening but by then it was time for my edible. I took it at bedtime so I didn't feel the " high". I slept through it. I always found an edible that was Indica strain that was good for sleep and pain and low in bad side effects. I stopped taking marijuana this May. I am doing fine without it but it got me over the hump. It controlled the pain & spasms and made me sleep. It is so important to be able to control the pain SO you can do physical therapy and be able to function.
The sleep is SO important too so your body can repair itself.
It was a lifesaver. It made it so I could sleep and function. The antihistamine is a big factor too.
I read a CRPS story of a woman who was treated at the Stedman Hawkins Clinic and she went into remission. She had it in her foot & leg. She had a reoccurrence but she went back to risky behaviors. Playing sports & such. Once you go into remission you have to be SO careful!!!! Don't do anything to make it reoccur. You can do things, just in moderation and not so risky.
Keep in touch. I would love to meet you and talk.
Gentle hug.
You friend, Tracy
Struggling50 colleen_36473
Posted
Grrrr! I thought I was private messaging you. Now my comments are waiting to be moderated.
I am making supper right now.
But I would love to meet you. I live in Parachute. It is on I-70 west of Glenwood Springs.
I believe it is a Godsend too that we live so close together.
My comments about the legalized substance is why my reply to you is waiting to be moderated.
I will check in later and see if they posted my reply. If not, I will send you a private message.
Research the Stedman Clinic. I read a story about a woman who was treated there for CRPS in her foot & leg. She went into remission but eventually had a reoccurrence. She went back to risky behaviors like playing sports and such. After you go into remission you have to be SO careful. You can do things but in moderation and do nothing that will risk a reoccurrence.
The Stedman Hawkins Clinic diagnosed me with Fibromyalgia in 2004.
Keep in touch. I hope they moderate my comments soon.
Take care and Gentle hugs.
Your friend, Tracy
Struggling50 colleen_36473
Posted
Hi, again.
The nurse who posted above mentioned she takes Low Dose Naltrexone. I had researched this drug for CRPS. You have to find a doctor who will prescribe this drug for CRPS.
Naltrexone is a drug used to get people off of opiods. But in very low doses it kills pain. Nerve pain. My sister's sister in law takes it for pain caused by Lupus. She said it helps her a lot.
There is a doctor in Grand Junction who will prescribe Low Dose Naltrexone and I think there is one in Eagle. My sister's sister in law was seeing a woman Dr in Eagle who will prescribe Low Dose Naltrexone for "off label use". I will find out who that Dr is.
If you go with Low Dose Naltrexone you can not be taking opiods. As the drug is meant to help people withdraw from opiods.
Hubby is home. Gotta go.
Hugs
colleen_36473 sabrina51474
Posted
Thank you so much! You give me inspiration. I am just so sad to hear of all your challenges . I keep you in my heart and prayers. You are very courageous and I pray I can do the same ! 😊🎉?? Let's keep in touch in our journey.
Sending lots of love and hugs,
Colleen.
jill1208 colleen_36473
Posted
You might check out Cleveland Clinic. They have specific info in their online ask an expert and I have heard good things about them.
I went through the United Pain Clinic in St. Paul, MN. They had more options for some meds to try and also had great OT especially focused on CRPS. I am currently using a clonidine patch on my leg that helps to reduce the nerve activity which helps take the edge off.
Take care of yourself! It is hard to let people know what you can and cannot do on any specific day especially when "you look fine"! Not even sure if my direct family really understands the extent of the pain and how much energy it takes away. So keep at it, find the people who can help!
Gogee123 jill1208
Posted