Other CRPS - Complex Regional Pain Syndrome- Any success stories of how you managed it?

J_trustno1

MyPTSD Pro
Hi again everyone.

Hope you are all doing well.
I'd like to discuss possible treatment options for CRPS you have had or someone you know may have had. How you worked through it and how you manage your day to day life?

I've had an injury almost 5 months ago. That was few fractures on the right foot due to a sprain and Partial thickness ligament tear begind atfl.

My symptoms started second week of the injury and was diagnosed with CRPS recently because specialists say broken bones must have healed by now. I've been on several medications till now and there is no one fix for it. I still cannot drive, walk or stand much or else I suffer from:
- flare ups on my foot,
- injured foot hates being touched
- numbness and tingling
- stabbing pain,
- colour changes,
- burning,
- itchness of toes,
- the same pain shoots up to the same hand of the injured foot
- mirrored pain in opposite leg and foot
- lower back and right knee always aching.
- leg atrophy. Both of my legs are half the size they were prior to injury.

I need to keep exercising, desensitising nerves, hot and cold packs, meditating, yoga (only poses i can do without causing to the right foot), stretches, back exercises. I have found that the days I'm stressed I'm in more pain and feel it a lot. Cold weather causes pain, if I do more than my foot can do it hurts. It almost feels like a curse tbh. I just don't know if I am any better because of chronic pain.
I am taking anticuvlusants and there is certain amount I can take because too much doesn't do anything for me and too little dose affects pain. I get ultrasound therapy on the foot which induces vibrations to the nerves, see a podiatrist, getting physio and will be starting swimming once lockdown is over. I feel trapped in my own body now and don't know how to fix it. This whole condition feels like there is no end to it.

The doctor is recommending I start taking antidepressants, antihistamines so they will soothe nerves. I just feel like I'm going to turn into a medical zombie. On top of I need to change my job as this current one is also depressing me (I'm not treated very nicely there and not respected) and don't know if this condition will allow me? Driving causes flare ups so I am working from home at this stage.

I'm totally confused as to what to do with this condition anymore. It is manageable one day and the next day I'm back to zero if I do too much or don't do anything. I have put on 8kgs since this injury happened (5 months ago) and the lockdown isn't helping much. Walking and standing is a big problem for me. Not sure if starting antidepressants and antihistamines will help me.

Any thoughts? How do you manage it. Have completely/partially recovered from this condition?

Looking forward to seeing your responses.

Thanks
J
 
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Madwomeninabox

Confident
Hey, I don't know if this comment will be of any help.

First of I am so sorry you are going through all of this I completely understand why it would feel like a curse. My dad has this. He is on disability I don't know if that is something you would want to try to do so you would at least have some time without working to focus on everything else.

You are doing great trying to exercise and listening to your doctors. My dad wasn't diagnosed with it until long after his injury. The earlier you get on top of it the better.

When I was around 14 I broke my ankle in gym class and some studying show crps can run in family both my uncle and my dad had it.

I ended up getting it to but I was diagnosed earlier and was young.
What actually ended up making me feel better was a fell again because I was on crutches and it was snowing out. I fell and hurt my hand. It basically reset my brain and my ankle almost immediately felt better.
My dad asked if he should just break his hand and the doctor said no this is something that 50% of the time you just end up with crps in your hand also.

He said because I was young I had a higher likelihood of getting better. But more or less I got lucky.

My uncle also got better he did a lot of physical therapy. He took time off work because he could afford to he made it his job. Also he got some shots that help with pain and that made a big difference.
He also did massage and worked on eating healthy. Basically he took really good care of himself on top of the medical side. He was in a privileged position to be able to do everything he did. I don't know what your situation is.

Both me and my uncle have days we are in some pain. The weather is of or we have to do something physically that is out of the normal. But more or less we are both OK.

My dad still has it really bad. The main thing with him is trying to keep the rest of his body as ok as possible. He also has other injuries in his back and knees. So he always walks with a cain to make sure he isn't doing more damage to his back. and he tries to be as active as possible. massage also really helps him.

Massage if I have one suggestion it's get a massage. But really I hope it gives you some hope.

I know 4 people with this. I also have a different friend (honestly more like Acquaintances) from church but I don't know there story. I just have had a conversation were I told her my dad had it. She said she used to have it but got better. telling me to have hope.

So out of 4 people I know 3 got better. Obviously this is a small group and doesn't mean much. But I hope it gives you some hope.

And from someone who knows the pain of chronic regional pain syndrome I'm so sorry you are going through this. And I hope and pray you feel better soon.
 

DharmaGirl

MyPTSD Pro
I have chronic pain in my right ankle from badly broken bones. I also had back pain, but I got the correct surgery and don't have that anymore. I did see a pain psychologist and it helped me handle the pain, it was amazing! If you can find a pain group led by a pain psychologist, that would be best.

From my experience, they usually start with the antidepressants and antihistamines first. When I first had pain, they would give you pain meds until you were zonked. That didn't help as much as one would think. We did meditation daily and lots of self care. I still have a lot of pain but the more I exercise, the less the pain.
 
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