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Since 2016, I have had 4 operations on my foot/leg. A debridement, a tension release, a fusion and a neuroma removal. I originally broke a bone in my foot in 2015. I them broke 2 bones in it this year (no reason why I broke them) Since then, the pain has moved to my knee, thigh and hip. No doctor seems to know what the problem is and keeps sending me to different doctors. My foot is constantly cracking, I have burning pains down my leg and also pain in my lower back. (It’s not sciatica) My pain management doc now wants to fit me with a spinal simulator. But no one is saying what the problem is and why it’s happening! I feel like I’m going out of my mind with the pain and stress! They’ve said CRPS but why have I got this?! 

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  • Posted

    As I understand it

    your body has gone into shock and now it sees many things as a threat. Often accidents and surgery sets your sympathetic nervous system into overdrive, later the central nervous system. Pain signals can be sent to other parts of your body for no reason. There can be changes in colour, temperature, hair growth in unusual places, nails can stop growing and in my experience you can get cracks in the feet. There is no cure but you can go into remission and pain can go away. There are lots of options for treatment and medication so make sure they explain everything. Lidocaine infusions and meds help me. Hope this helps.

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    • Posted

      Thanks for replying. I’m just at my wits end. I am currently taking strong codeine and tramadol, which makes me so dizzy and I don’t know what day it is half the time! I have been off work on and off so much over the past 2 years with it all. 
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  • Posted

    Hello, Joanne.

    I am so sorry that you are having so much pain and stress.

    No one really knows what CRPS is or what causes it.

    First, try to use you foot and leg as much as possible. It will hurt but you have to keep movement in your foot and leg or the CRPS will get worse. Your brain and nervous system has to find a different way of dealing with the pain.

    Find a physical therapist who knows about CRPS and how to treat it.

    CRPS can cause bones to become weak so take a really good quality calcium supplement and eat good quality dairy products. That is probably why some bones in your foot broke for no reason.

    Weight bearing on the foot and leg will also make the bones strong and your pain will eventually lessen the more you use the foot and leg.

    You have to work through the pain to get recovery or remission of the CRPS.

    Try gently rubbing your foot with a soft material. When you can tolerate that move on to something a little rougher, when you can tolerate that move on to something a little rougher. On so on. Same with temperature. Start with luke warm water then when you can tolerate that, a little warmer etc. Then go the other way with cold water.

    I have CRPS type 2 in my right foot and leg. I was on crutches for a year. I couldn't walk because of the pain and from losing range of motion. One day I just decided that I had to start walking without the crutches no matter how much it hurt no matter how much I was limping.

    I started by hobbling around my kitchen while I was fixing meals. Then I was hobbling around the house. Pretty soon I was walking outside the house, then in public. It hurt and I was limping but I was off the crutches. The more I was able to walk ( weight bearing) the less pain I had, the spasms stopped and the better my range of motion became. It takes time and patience and putting up with the pain. But my brain found a new pathway to dealing with the pain.

    I also cut out sugar, pasta, potatoes, alcohol, caffeine- any foods or drinks that overstimulate the Nervous system.

    I take Gabapentin, Pristiq and 2 Benadryl at bedtime. The Benadryl has also helped the pain and puts me to sleep at bedtime. Sleep is so important with CRPS.

    I have been walking for a year and a half now. My pain hasn't gone above a 5 in a year. The spasms have stopped except for a bout of toe twitching this fall. I don't limp anymore. My gait has changed, it is shorter and more measured. I can't really run or walk quickly, I have to keep a measured pace.

    Make sure to rest often, pace yourself with everything you do.

    If you can't find a physical therapist who can treat CRPS. Look on the internet for physical therapy for CRPS you can do on your own. If you have access to a swimming pool look for aquatic exercises for CRPS. Don't overdo. Start slowly and build up. Start with range of motion exercises in the swimming pool.

    I started with range of motion exercises in the deep end of a therapy pool then eventually was walking in the pool. Then I was doing the therapy on my own in the rec center pool and eventually swimming some laps.

    I avoid stressful things like the news as much as possible.

    I hope that you overcome this and find relief soon.

    I am here if you have any questions.

    Gentle hugs.

    Tracy

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    • Posted

      Thanks for that. I am currently seeing a hip and knee specialist, a foot specialist, a endocrinologist and a pain management specialist. The latter wants to do a spinal cord simulator. 

      I honestly don’t believe it is CRPS, I don’t get any colour changes and it’s not sensitive to touch etc. I just don’t know what to do anymore! 

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    • Posted

      Hi, Joanne.

      I'm so sorry you are having such a bad time. It is so difficult to be in chronic pain.

      There is a type of CRPS where there is pain but not any of the other symptoms.

      I just learned about it the other day. It is called CRPS-NOS. I don't know much about it. You might try googling it and reading about it.

      Are any of the doctors that you are seeing actually familiar with CRPS and it's symptoms?

      The spreading of your pain does sound like CRPS but it could be something else causing your pain

      I hope you find answers soon

      Gentle hugs,

      Tracy

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  • Posted

    Hi Joanne

    That's the thing we don't know exactly, is why??.. we do know it's precipitated by trauma, surgery or injury. Sounds like you've covered that. The only one thing that is a common denominator is the uncontrolled pain. Everyone seems to have different symptoms and from experience I can say they change all the time.

    Get informed. Find a good pain doctor and listen to your options.

    Sounds like you've already put up with an awful lot and if an absolute diagnosis is what you're looking for, the only thing my pain guy said that is close to being diagnostic is a sympathetic nerve block that is positive ( and obviously your symptoms )

    Unfortunately, I've been around the block since my diagnosis in 2014 (after 2 yrs of symptoms), including 2 neurostimulators, a baclofen pump, a ketamine induced coma for 8 days, and an 11 week hospital stay this last year. 8 weeks of that in the ICU. But what I've learned about this disease has been invaluable to myself,my family and even the local docs that knew nothing about treating this.

    If they are pretty sure it's CRPS/RSD, then you're going to need all the support you can find, and they're going to need to be educated on this too..it's complex and one of the most life altering conditions but there is life after a diagnosis.. quality of life is absolutely the most important.

    I wish you all the best and know this place is here for you too!

    Andrea

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    • Posted

      Thank you so much. I do have a good pain doctor so fingers crossed he helps. I really didn’t want the back operation but it looks like it may be the only option. I am already on “knock me out” medication and tried injections and mindfulness but nothing has helped. Hope everything gets better for you too. 
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    • Posted

      Hi Joanne

      Yep, me too (as far as knock me out medicine). I'm an RN and never imagined I would have such powerful drugs in my home. I had 2 stimulators put in 18 months ago. Had really good trials before the permanent implants..( have you had the trial with temporary one in yet?) If not be sure to be honest with yourself that it's actually giving you some relief..my permanent ones have failed to help after initial few weeks and I can't stand having these things in my spinal cord that aren't doing anything. And the psychological effects of having them fail is tough especially after 2 big surgeries to have them put in.

      I totally agree that mindfulness helps some people but I find that 'distraction' meditation is better for when the pain is tough..rather be somewhere else than in the 'here and now's when it's bad. Just a personal note..there are some great sites for chronic pain meditation.

      Please let me know how you make out with stimulators. I know they work different for everyone so I hope you get some well deserved relief.

      Andrea

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    • Posted

      I have an appointment with my pain specialist on Monday to discuss the trial. I’m seeing him privately and waiting for a NHS appointment as apparently the operation costs £30.000 so my private medical insurance are still deciding whether they will pay for it. I am currently taking 100ml of tramadol so I’m a world of my own most of the time.

      Thanks 😊😊

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