Newly diagnosed with CRPS after ankle surgery help !

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 

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.

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

Hiya I had a nerve block and first person since the 80's to have an allergic reaction I had locked in syndrome luckily after 4 hrs and a GCS4 I came around but that left me with PTSD. 

I now have a spinal and cervical (neck) cord stimulators fitted in body with help 40% ish but I got a crps spread due to the surgery also ! Everything carries a risk. A spray oil helps keeps my skin hydrated where it can't be touched. Pain free hugs xx

Have you heard of calmare therapy? I was reading about it. It might help you. I don't know much but there have been good results. There is a dr in New Jersey that does this but not sure. Thought you could look into it.  It is being used by mayo for cancer pain..

I pray for you and keeping you in my heart for recovery. 

Blessings and gentle hugs, 

Colleen xo

I have read about it. I read about someone coming all the way from Australia for it. I have read positive things about it.

Gentle hugs

Hi Tracy,

I have read about him too. I was thinking  of going there. I have read about people making full recovery. I am thinking of doing this as it is approved by mayo .

Today I went out and my foot and ankle got burning. But it gets so glossy it scares me. How do you get rid of that ? I get so concerned.  I am still in a boot for the fracture and when I got home it is do glossy and shiny.  

I pray I can be strong. It was so good to get out and see friends. It took my mind off of it but it was still hurting. 

I think of you every day and pray for you and keeping you in my heart.. I hope one day we meet. Even my husband said it was part of God's plan. 😊 

Gentle hugs from me too! 

Your friend, 

Colleen 

Hello.

I'm glad that you went out and about. It is important to socialize. We are social beings.

The shiny skin finally went away for me when I was able to put some pressure on my foot. I was using crutches still but was putting the foot down and putting slight pressure on it and moving it like I was walking normally. From what you are saying the doctors don't want you to do any pressure yet. Try moving your leg at the knee, pumping your leg up and down. Get the blood flowing through the limb. The nerves that control blood flow through the veins and arteries are damaged. That is why there is discoloration and swelling. Also the nerves that control temperature, pain and nail, hair and skin growth are damaged. The thing that helped me that most with all of that was being able to put pressure on it. Even just the slightest pressure helped.

Hopefully soon you will be able to do that.

My husband thought it was a good thing that you and me found each other. He said "you can encourage her. Let her know that there is hope and a light at the end of the tunnel. Not to give up."

If you can afford the Calmare therapy, go for it! Trying different things is what is going to help you recover.

I will get that doctor in Eagles name for you. The one who prescribes Low Dose Naltrexone.

I feel blessed that we are friends:-)

Text again soon

Peace and blessings.

Your friend, Tracy

It's not in your head. It's a serious disease of the central nervous system. Nerve block on my right foot and right arm have blocked pain. Didn't work on my left side. I have nearly full body except for legs. 

Hi Lorna I am in the UK. My GP diagnosed my condition a few weeks ago and offered me nerve blockers which I do not want to take, I do not like taking medication of any sort, I was tempted slightly because the exercise which seems to be doing my ankle good, and I really enjoy, is pool walking, but the pain of the water brushing across my ankle has become unbearable, it feels like burning straps wrapping around my ankle. LOL I thought I was on the mend from my red hot swollen leg, but it was not to be. My initial accident was Feb 1st.

I am sending for 'micro-dosing' drops, I know they have helped a few friends with pain issues, and an aquaintance with her end-of-life medication.

LOL still trying to wear socks and get boots on ready for winter, No Chance so far. Perhaps hubby will take me away for the winter.

Take care all

Hiya Rusky. Where in uk are you. I am Oxfordshire.  I use lidocaine patches  on my knee which actually allow me to wear trousers otherwise I would be in shorts 365 days a year ! I got them via my pain management consultant. My CRPS has spread so I look like a lidocaine patchwork quilt lol..  I have had lots of other treatments. I also have a spinal & Cervical (neck) cord stimulators implanted in body since June 2015. 

I do have pregablin nerve pain medication. The gabapentin nerve pain med sent me fruit loop. 

When you pool walk what is the temp of the water ? I can't use leisure centre pool as water too cold but a 4 pillars hotel pool is lovely and warm like a hydrotherapy pool. 

If your on fb Rusky we could chat via pm so I can talk to you as had CRPS from April 2013.  So kinda olde school with CRPS and treatments. Surname Barnett photo is of 2 adults n 2 children  

Gentle hugs to all xxx

You can't PM on this site. My friend isn't on fb now but still has messenger you could possibly do that ? 

That's a gd warmth for the pool. Maybe only reducing the time in the pool and pace yourself with smaller goals. When I have a bath of knee is in too long when I get out my knee is nearly purple and swollen. Ask yr gp or consultant or google lidocaine patches. I used capsicum cream when I first got crps it's a chilli based cream for desensitisation   My crps is aggressive and has spread a lot. Have u tried mirror therapy ? Xx