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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steve0706 colleen_36473
Posted
I was diagnosed with CRPS about 8 years ago...red/purplish coloration and mostly severe burning sensation and knife like feeling when weight bearing. Went through months of pain management, nerve blocks and was told there was no cure. Then ran across a natural (which I normally don't believe in) treatment to reset the autonomous nervous system between leg and brain...3 months of immobilization, elevation and sensitivity therapy with an anionic polyacrylamide cast that held heat and cold alternating in 8 hour periods. Had relief after 12 weeks and complete cure after 24 weeks...no recurrence 8 years later. Good luck with yours...I know the frustration of being told there's no cure and then nerve blocks and ketamine treatments and all these treatments that did nothing while your life is on hold.
Struggling50 steve0706
Posted
Would you mind sharing where you received this treatment?
Maybe in a private message?
Thank you.
ryan04252 steve0706
Posted
shay19059 colleen_36473
Posted
Looking for info on this topic. My 15 year old daughter has two previous ankle surgeries after a sprain with the most recent in February 2016. Her foot is swollen and different colors with movement. Changes from red, white to bluish purple which is the main color at rest bordering on gray. She has mottling of her entire legs and now the swelling has developed in opposite leg. We were told her foot would go back to normal coloring but it only seems to be getting worse at nine months out from surgery. Her toes were purple while in the cast but when that was removed all seemed okay until one day at physical therapy she was working with foot weights and experienced severe pain after and the color of the foot intensified and has only become worse. This PT session was in June. The doctor just seems to want us to go away and doesn't respond to our concerns. Now we only see his assistant. We are not litigious people and just want her to get better. I've been searching online to try and find the answers myself and came across this thread. Her general doctor sent her to a vascular surgeon but I think he mentioned this condition but ruled it out based on some testing he did. I believe it was a sonogram. A new doctor has mentioned trying to drain some cysts in her foot. Hoping that will help but also scared to let someone else have a go at this foot.
shay19059
Posted
I forgot to mention my daughter cannot wear anything remotely fitting near her ankle like tapered pants or her feet swell up like you wouldn't even believe. It doesn't even look real. Right now she is wearing knee pants and Birkenstocks because it's the only shoe that will fit also. Does anyone else have similar issue?
Struggling50 shay19059
Posted
Hello, Shay.
I am so sorry that your daughter is going through this. I am sorry for you as well as it is so hard to watch a loved one be in pain.
I am not a doctor but what you are describing sounds all too familiar to me.
Doctors and the medical community do not really understand CRPS. They don't know what causes it or how to treat it
I have CRPS in my right foot, ankle and leg. I saw a neurologist who did Nerve tests on my right calf and foot and the tests revealed actual nerve damage.
But there are 2 types of CRPS. Type 1 and Type 2. I was diagnosed with Type 2. Type 2 involves actual nerve damage & in type 1 the nerve damage can't be detected. But it is still damaged.
What you are describing does sound like CRPS.
The doctor blowing you off is something many sufferers of CRPS experience. The Neurologist I saw was incredibly rude and wanted nothing to do with me. He confirmed the diagnosis of CRPS and never wanted to see me again.
I think it is because CRPS is SO hard to treat. The doctors just do not want to deal with it.
First, do not do conventional physical therapy. It does not work on CRPS. The physical therapy for CRPS is different than conventional physical therapy.
The RICE therapy is not good for CRPS.
Rest is fine but the foot and leg has to be used. Keep the limb moving. It is painful but keep using the limb. Even if it is just bending and straightening the leg and moving the ankle & knee joints. Have her draw the alphabet with her toes, keep the knee still, use only the foot & ankle. I drew the cursive and regular alphabet. It really helped with range of motion.
She needs to pace herself. Keep it moving but rest as well.
DO NOT USE ICE!!!!!!! Using ice causes further damage and can cause CRPS to spread.
Compression and Elevation only keep healing blood and oxygen from getting to the damaged tissues.
RICE therapy and conventional therapy made my CRPS worse and caused it to spread.
Aqua therapy is good for CRPS.
Read some of the posts and replies in this forum. You will find good information.
Find a doctor who treats CRPS. Look on the internet.
Are you in the USA? The Mayo Clinic in Minnesota has a program that has had great success with treating young people who have CRPS. Total remission.
In the UK, I have read on this forum about a hospital in Bath, England.
Young people like your daughter have a much better chance of remission than an older person.
I would hold off on draining cysts. Cysts are not what is causing your daughter's pain & disability. Any other injury, surgery to that foot or leg is going to make things worse.
Try to find a good doctor, neurologist, orthopedic surgeon who actually deals with and treats CRPS. It is hard to do but call around, look on the internet. Tell us where you live, maybe someone on a forum can direct you to a doctor.
I wish you all the best. In finding care for your daughter. In total remission for her.
I am here for you and your daughter if you need me or any advice or just need to talk.
Gentle hugs,
Tracy
Struggling50 shay19059
Posted
I don't understand how a sonogram is going to find CRPS.
Only nerve testing and looking at the list of symptoms is going to lead to a diagnosis of CRPS.
Most cases of CRPS are Type 1. Nerve testing on Type 1 usually doesn't show anything. Type 1 is diagnosed but the symptoms and by what caused the symptoms.
Gentle hugs,
Tracy
steve0706 shay19059
Posted
Hi
First, I'll add my two cents that it definitely sounds like CRPS. The difficulty with CRPS is that there are no two cases the same. That becomes problematic for medical staff who are trained by rote treatment...if this doesn't work then do that and then that and you narrow to a diagnosis. With CRPS, rather than narrowing you need to broaden to find a course of treatment that works. You will find people here and in the medical field who believe this is an incurable disease. I am not one of them.
My experience has been that there is a "reset" that has to occur very early on to restart the sympathetic nervous system and that restart varies widely. Rarely, if ever, do the standard treatments of nerve blocks, SC stimulators, ketamine and other "last resort" treatments work. Generally, successful total remission or cure is established with continued activity with the affected area of the original injury along with therapy to establish reset. Reset can occur with different sensate experiences...I have been most successful for myself and others with a combination of temperature and texture applications while limiting mobility in iterations.
I also believe that time is of the essence as total and complete remission is inverse to the passage of time...most successful with treatment weeks after the injury up to 6 months and the reducing effectiveness as months and years pass.
Feel free to contact me privately with any other questions if I can be of assistance.
Struggling50 steve0706
Posted
Steve is right. Time is of the essence. The sooner treatment (reset) is begun the better.
colleen_36473 Struggling50
Posted
Hi,
what are the best ways to reset the sympathetic nerves? I try to move it alot and do pt. My therapist says we are giving it the kitchen sink.
I battle it every day. Some days I think maybe it's gone, but then it feels like it's back full on. I did one block, and also just started aqua therapy,
What are ways that you all think might reset?
I am considering participating in the neridronate clinical trial offered right now across the country, but concerned of side effects, still deciding, but time is going quickly, I am about 4 1/2 months after diagnosis, already.
Blessings and healing prayers to all!
Struggling50 colleen_36473
Posted
Hi, Colleen.
It is good to hear from you.
Keep moving it and keep up the physical therapy. Are you walking on it yet? Even just walking on it with crutches is good. Weight bearing is going to help, even while on crutches.
Even just pretending to walk while on crutches is good. Move the knee and ankle like you are walking while you are walking on crutches. Treat it like you are walking.
Pace yourself. Rest between doing things. Keep moving the joints.
Are you doing touch therapy? Try touching the limb with something soft. Like a piece of satin or a fleece blanket. When you can tolerate that, move on to something rougher, like a sock or you bedsheets. When you can tolerate that move on to something a little rougher.
I started out by rubbing my foot & leg on my bedsheets, lightly. It hurt but I did it. Next I wore a sock. Next I rubbed it on the blanket I was laying on when I laid on the couch, then on the couch fabric. It does hurt but you work through the pain.
I worked up to using a loofah on the leg and a soft bristle brush on my foot.
I use a loofah still and a brush on that foot even today.
I started with luke warm showers and worked my way up to normal temperature showers. At the end of each shower I turn the hot water down slowly until I am showering in a cool shower, goose bumps. Then I turn the shower off and leave the water running and put my foot & lower leg under the faucet and slowly turn the hot water off until finally it is just cold water on my foot & leg. I move my foot & leg under the cold water for 20 seconds or so & turn water off.
Now, I slowly worked myself up to doing these things. It is up to how much YOU can tolerate.
Send a private message to Steve, from above, and see what his suggestions are. He sounds knowledge about some treatments.
Now days when my foot starts burning or hurting, I treat it like normal. The other day the toe next to my big toe hurt so bad when I walked and it wouldn't bend while walking. I ignored it and just kept on walking. The pain & stiffness went away within an hour. Last night it was burning some, but I ignored it. I sat with my feet tucked under me on the couch, rubbed it on the blanket on the couch, rubbed it on the sheets in bed.
You have to reconnect with the foot and leg. You have to treat it like it is once again a part of your body. A normal healthy part of your body.
The mind is a powerful thing. If we think of the foot & limb like it is something diseased and different, then it becomes different, apart from us. Now, I am not saying that CRPS is all in our heads. It is not! It is an actual disease. The pain and disability are real! All I am saying is that we start to feel like the injured part of us feels alien, like it isn't even OUR foot and leg. We have to mentally take that foot & leg back. Make it a part of our bodies again. You have to mentally, emotionally own it again. Don't let the CRPS take your leg & foot away from you. I hope that makes sense.
I hope this helps:-).
Private message Steve and get his suggestions. He does sound quite knowledgeable about CRPS and treatment.
The Neridronate, I'm not sure about that. I was going to do it but couldn't because I have Type 2 and the trial was for Type 1. Pray hard about it. I always pray "God if it is a good thing for me, open a path to it so I can do it. If it is going to hurt me in any way, throw up every obstacle in my way so that it doesn't happen." I hope that makes sense.
Prayers and kind thoughts are sent your way.
Take care and gentle hugs.
Your friend, Tracy.
colleen_36473
Posted