Hi my name is joe and i am new here but i had foot surgery 5 month ago to fix high arch in my right had problems from day one when i finally had the cast off and put into the walking boot my life became a nightmare that i still hope i can wake up from long storie short i have cprs in my right foot i lost a great job that i loved i have had 6 nerve blocks hands full of pills for pail gabopentine oxyxcodine topomax but nothing helps the fire that is my foot i go to a pain clinic and ot and pt but the problem i struggle with most my days is not being able to provide for my family with no end in sight what can i do ?????

I need help bad i am usless

Hi Joe. I'm sorry that you have to go through all of this...this is an awful condition...but please do not give up on yourself yet.

About 5 years ago I was in such bad shape from the CRPS that I couldn't stand or walk at all. I was wheel chair bound and couldn't do anything for myself. This went on for months as I was passed from one doctor to the next to the next. The pain was awful...but worse than the pain was the toll this was taking on me mentally...the toll it took on my soul. I basically felt trapped in one room of the house...I was a lump on the couch and I was so miserable and in so much pain.

Finally...one of my doctors told me that I would probably just need to get used to living my life in a wheelchair. That was the moment...the one where everything started to change for me. I was so angry...I was 26 years old and I was not about to give up my chances at a normal life. That was the last time I saw that doctor...on the way home I called up another office and set up an appointment with a new PCP and everything changed from there.

Yes...I said a primary care physician. Originally I thought that I would basically get fresh eyes on things and maybe referrals to different doctors...but I actually finally found a doctor who wanted to really help me and we eventually got me back to walking (with a walker...but who cares) and back to working full time at a job where I am on my feet 9+ hours a day. A couple years later...I gave birth to a beautiful baby girl. I took my life back...so it can happen.

Now...unfortunately...the pain is still awful. I have never found any meds that help me much with the pain and the ones that did help a little had side effects that just weren't worth it for me. So when I saw this new doctor...I changed my focus. The pain was awful but as I said...the loss of function was destroying me inside...so THAT became my focus. We tackled one symptom after another to get me back to FUNCTIONING (you should have seen how excited I was the first day I was able to do the dishes while this was all going on...small victory but incredible feeling). We did at home PT where a physical therapist came to the house to work with me. Another wonderful woman who also was a big factor in changing my life. I needed way more time than the 40 sessions that insurance allows...so we started twice a week but after a month or so she dropped it down to once every 2 weeks and gave me the progression exercises to work on during those 2 weeks so that I kept making progress but got the TIME that I needed because it did take months and months to really get me back on my feet. Then...even after physical therapy was done it still took another few months to really build up my stamina so I could handle a full day of work. The walker was and is the only way I can handle being on my feet that long but it's a tool and it works for me (I have the kind with 4 wheels and seat so that if I need to sit at any point I can).

Anyway...the doctor and the physical therapist worked together to get me a TENS unit at home (which helped more than any meds) and to coordinate my treatment on that end. Then my doctor worked with me to tackle one thing at a time that was really preventing me from functioning. First...sleep...I was't getting any and that had me in terrible shape. Your body NEEDS rest and I wasn't getting more than 15 minutes at a time throughout the day adding up to maybe 2 hours over the course of an entire day. She got me on amitriptyline and that gave me 3 hours of consecutive sleep a night which was tons better. We got me on clonidine patches that helped me with the blurry vision and dizziness that I was having (I was a real mess). Then eventually when I heard about tDCS treatments, my doctor wrote a script for the machine so I could do treatments at home...which didn't help directly with the pain but I was able to sleep consistently 6-8 hours a night and get off the amitriptyline and my flare ups were less often and lasted shorter periods of time. I was able to get back to work and while life is still very hard because of this pain (and new things like my current rotator cuff injury after a fall off a ladder at work can throw things easily out of whack)...I am able to contribute, feel useful, and live a fairly normal life most of the time. The pain has just become one of those crummy facts of life but over time I have learned my limits, what causes flares, what activities to avoid, etc and it gets easier.

I don't mean to suggest that this particular treatment plan is right for you...only to give you hope that you CAN get back to a more normal life. It won't be fast, it won't be easy, but there IS hope. If you don't believe there is hope then you will never be able to take your life back....so please believe that there is and can be a light at the end of the tunnel. And...I know this is incredibly hard to hear not to mention accomplish when you have everything going on that you do...but try to keep the stress to a minimum as it make the CRPS pain worse. Stay focused on your treatment and recovery, enjoy whatever time you can with your family so you know what you are fighting for, and please please do not lose hope.

This forum is an excellent resource with many people who can not only give you support because we know what you are going through...but we can give you lots of ideas about treatments, things that help us out, etc that can really have a big impact on your life. I've learned so much from the people here and through their support and love have been able to accomplish what I have. None of us can do it alone.

Hello and Welcome Joe,

I am so sorry you had to come join us and for what you are going through with your foot. It is very difficult in the beginning dealing with the pain, losses and questions. We all understand and give each other tips and support for getting through.

There is a lot of doom and gloom on the web about this disease. Try not to focus on that and hold on to hope. 80% of people improve over time according to CRPS bigwig Dr. Michael Stanton-Hicks of Cleveland Clinic. Outcomes are variable and there's no reason to start believing yours will be the worst. A positive outlook and keeping your stress down as much as possible WILL help you.

I am no stranger to foot surgery, having had 3 of them in a year's time before getting CRPS. I spent 9 months on crutches, a year on a scooter and used walkers and canes as well. I had to re-learn how to walk in the pool. It'd been so long my gait was a mess. The upside is that I walk two miles a day routinely now and am pretty comfortable while doing so. It took a lot of gradual, gentle work to get there and quite a few attempts at different treatments. Ketamine infusions and numerous injections of steroid to my surgical field to reduce scarring helped. For the record, my pain is much better than a year ago.
Don't give up on treatments, it can take a while to find what works for you.

If you haven't already, one of the most important things is ruling out nerve injury, neuroma or entrapment from your surgery. Nerve entrapment acts a lot like CRPS and is excruciating. It can be difficult to find and doesn't show up well on MRI or even necessarily show on nerve conduction studies. A peripheral nerve, plastic surgeon can do a "Scratch Collapse Test" to rule this out. Also a Physical Medicine and Rehabilitation doctor who does a lot of ultrasound guided injections can look at the nerves of your foot and see if there is scar tethering and potentially treat it without surgery. I personally had tons of relief this way.

Keep up the PT/OT even if it feels you aren't getting anywhere. You are staving off more loss. Gains often come very slowly with this illness but they do come. Get therapy for depression and pain if you need to. Many of us have found this invaluable. Get in a pool to work your legs as much as possible. Try to find the balance of working things regularly without causing flare. Give yourself time, you had a lot of surgery and probably still have swelling. Nerves don't take well to any pressure. You may get more relief as you get further out from your procedure.

If you are going to need to apply for disability go ahead and start that soon. It takes a while to do and often requires appeal and whatnot.

Here are some links you may find helpful.

Nerve injuries....
http://nerve.wustl.edu

loads of information from caring non-doomsday CRPS specialist...
http://www.youtube.com/watch?v=s3LKhOZ8mAM

Hang in there and come tells us how you are doing. I hope you find relief soon.

Sending hugs and prayers for healing,

Joe,
Hello! Catra and Little Paw have given such great advise that I do not have anything else to offer at this point, but I did want to introduce myself and say welcome to the forum. Getting support is such an important part of recovery and this is a wonderful, supportive group with lots of kind words and wisdom. Take care and hope to see you around. ~mama mac

Hello Joe,

Both Catra and Littlepaw have given great information, great story by the way Catra. I truly enjoyed it. Beyond what they gave, I, like Mac, mostly wanted to say hello and welcome.

Beyond what Catra and Littlepaw mentioned, don't give up, don't lose hope. Try as hard as you can to keep your foot moving. That is the best route to recovery.

Don't be afraid of looking for financial help. Try contacting your local DHS to apply for assistance if you feel you need to. Apply for Social Security Disability Insurance. This may be a long recovery, hopefully it won't be, but better safe than sorry. SSDI can take a very long time so don't wait. You can apply online, but if you can, I recommend scheduling an appointment at your local SS office. They can help you through some of the questions and make sure you fill out everything correctly so there are no delays in the process. Do not get frustrated with the process if it takes a long time or you get a denial. Just file an appeal and keep at it. I am going on 16 months since I originally applied and am still waiting for my day in front of an administrative law judge. Do not let that scare you. I live in Metro Detroit and there are a lot of applicants here. Hopefully, your local office may be faster.

It sounds like you might have a good doctor. If you don't think they are helping you, let them know that something needs to change in your pain management routine. If they do not want to work with you, do not feel like you need to stick with them. There are many PMs out there that are willing to work with you. It took me 4 PMs to find one that is willing to work with me.

I hope you find relief soon. I can say you have found a wonderful group of people to give you support until you do. There will be many bumps along the way, but we are here to help you over those bumps.

Thanks i was feeling a little defeated yesterday my foot was flaring up and i got a letter from my car finance company that they might repo my car over 60 buck and alot of bills came that i can not pay i try to stay postive i just want to get back to working but if i dont sit with my leg up it just starts to swell and burn i was told to use crutches or knee scooter and to stop walking but i refuse i am afraid that there is no going back now i have settled for a cane just waiting for two things to get approval a bone growth stimulator for my foot and a spinal cord stimulator i have high hopes that will work i know i probably will never go back to building and painting fire trucks or and physical labor jobs i just i can do something havent even been abel to take my kids icefishing but i WILL BEAT THIS!!!

Hello Joe,

Sir, I am cheering for you big time. As I look back over my battle with the "Monster" CRPS, once I couldn't walk I really took a nose dive. And what did it for me was, I moved and the carpet in the different residence was so rough it just ramped me up every single time my foot touched it. Now, I can't stand at all. So, I hope, I pray for you.. that you can continue to walk using your cane. Please, keep us posted. Ice Fishing? Well, are you from the great state of Minnesota? Fantastic Ice fishing huts there.

Joe,

I think I would be in better shape today if I had used a knee walker, because by not using one I put considerable stress on my entire right side. I ache from my right foot straight up to my right shoulder. The PM doctor told me that what I am experiencing is not uncommon in CRPS.

Pool walking in warm water and taking low dose naltrexone was the best combination for me. I think mirror work helped me, too. Had I been able to continue on this regimen I think I would be much better today. Unfortunately, I could not handle everything involved in going to a public, indoor pool during the cold weather. I literally needed an attendant to help me.

For me the LDN was miraculous, but I still have not been able to find a local doctor to prescribe it for me, which causes me anguish. WC would not pay for me to see Dr. Chopra (750 for the first visit), but I doubt I could have done the drive anyway.

Despite several setbacks I am back walking with a cane, but I have lost significant strength and stamina. I still cannot climb up and downstairs normally. My butt aches all the time, too, not sure what is causing this.

It is good to have the "you can do it spirit," but beware this can lead to "the you can over do it" major setback. I have learned that CRPS does not get better by toughening it out or overdoing it. Been there, done that. OMG.

Regarding swelling:what worked for me was the Bowen Technique. I found a YouTube video of a man wrapping his knee in a cloth filled with a specific kind of washing crystal to wick off excess fluid. I ordered crystals similar to the ones he used from Amazon and was surprised that this technique worked so well. My bandana was saturated the first time and less and less so as I continued. I believe that drawing off the excess fluid allows the lymph system to start back working the way it should. I tried pressure boots and elevation-my opinion is that there is a point when the fluid retention is so significant that the boots can only damage the lymph drainage channels and elevation only helps minimally, because the channels are so bloated/clogged. This is just my opinion, based on my experience, not medical knowledge.

My sister loaned me her large jade disc, infared heating mat. I think everyone should have one of these in their home for deep pain. I have even used this mat as a portable sauna-I put it on my bed, cranked it up to high and covered myself with lots of blankets-there is nothing like the bliss of being warm when you cannot keep from shivering. After several sessions I felt significant relief of my hip pain. My h has used it successfully for back and neck pain.

Investigate the Wim Hof Breathing Method. I wish I had tried this method before my CRPS turned cold. It regulates the immune system. My goal is to do this next summer. Join the FB site to follow the success stories of others.

Also, I found taking magnesium and malic acid helped me a bit with pain. I found this combo on a fibro site.

Best of luck, please keep us updated.

Hi Joe,

I agree with Bio on finding balance. It is important to push - just not too much. Rehabbing with this is different and keeping your flares to a minimum will benefit you in the long run. In the beginning I rehabbed in 5 minute increments. I had to pull back and start again many times from overdoing, but eventually it paid off. So do keep hanging on as you are, that bulldog attitude will get you through.

Cavus reconstruction is major surgery and 5 months out is not very long, really! I know it feels like forever but take the long view on your recovery. You have the most improvement in the first 2 years from trauma according to a study with 10,000 people that my PM recently told me about. When I was 5 months out from my last foot operation, the one that caused the CRPS, I was in my surgeon's office crying because I couldn't stand longer than 5 minutes without my foot stinging and burning. Another 13 months has passed and many, many improvements have come. I am not as I used to be and I do have pain and limitations; but I walk, swim, shop, do yoga, drive distance, make dinner, do yard work and even built a loft bed for my son. A loft bed! I am 5'4" and tiny so don't give up on those physical projects. It just may be a longer wait to do them than you want. Right now, you don't know where you will be, but healing is possible.

Like you I had to elevate to get relief. I still elevate throughout the day, taking short breaks so my foot doesn't get overwhelmed. This strategy is a big help. Give your foot time and try not to get too discouraged. I am 18 months out now and so glad I didn't give up a year ago. I've learned to be more patient than ever.

If your doc doesn't want you weightbearing because of bone deposition around any hardware, I would honor that. You bone stimulator comment flagged my concern. Don't make things worse being tough. Weightbearing does help signal bone deposition but sometimes it needs to be partial for a while so hardware can get "cemented" in without wiggling loose. I used just one crutch for a while which was a nice, happy medium. Don't be afraid to make concessions. It may make you more comfortable and allow your body to do some repair.

Keep up the good work. I hope the finance issues get worked out, I know that is a stressor you don't need.

Update. Thanks to your advice and my wifes i am going to
Get one of those knee scooter things i think it is for the best i tell my self i am not going to do any thing but i all ways end doing to much by that is no means much at all because i can only stand for about 10 min