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Diagnosed with RSD/CRPS and it's in both feet.

Discussion in 'Support Subforum' started by miffybunny, Nov 28, 2013.

  1. miffybunny

    miffybunny Beloved Grand Eagle

    Hi I'm new to this board and so excited to have found it! After suffering from chronic leg pain (spasms) for a year and a half I was able to conquer them 100% in four months. In June, what I thought was a sprained swollen big toe, spiraled into a nightmare of nerve and vascular pain in both feet. After being misdiagnosed with Lyme and rheumatoid arthritis, I was diagnosed with RSD. My feet turn colors, ice cold, feel like burning frostbite from hell and all my toes feel broken. I could go on and on but I actually called DR. Schubiner to confirm if this disease is really the most extreme form of TMS. He called me back! It was a relief to hear from an expert that this was the case since every Dr. has told me its not "psychosomatic". I realize this is a process but there is sooooo little info. on this topic. All the stories on the internet are such gloom and doom. I had scrambler therapy, a lumbar nerve block and a ketamine infusion (hallucinated for four hours!) Uuuuugh! My homelife is super stressful because I have two small children and my younger son is severely autistic. I was wondering if anyone has any insight into my situation? I do believe I will beat this but I have to admit this is the most daunting pain I have ever faced. I also developed severe tendonitis from walking funny. I've been in a wheelchair for a few weeks just to rest the tendons. any feedback would be greatly appreciated!
  2. Pandagirl

    Pandagirl Peer Supporter

    Hi miffybunny! Welcome to the forum. I'm sorry you are going through this rough patch. I don't know much about RSD, but I do know of someone that overcame the disease by participating in a very physical exercise program designed to "reboot" the nervous system. Hold on to hope, don't let those doom and gloom stories dictate your recovery. Sounds very much like symptom imperative if you beat your leg pain!

    As for your home life stress, I just wanted to say that I, and so many others, can relate. Parenthood is the most demanding job without question.

    I'm sure others will have more feedback as well! Best of luck to you!
  3. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Him miffybunny. It was great that you contacted Dr. Schubiner and he confirmed that your pain is caused by TMS.
    TMS is an amazing discovery and attributed to so many different and often severe pains. If your doctor has prescribed
    medication for your RSD/CRPS you could try it, although I am not a doctor so what do I know? I do know that TMS
    repressed emotions can cause very severe pain and that it has stopped for many people when they reflect on their emotions.
    You have a lot of stress with your children and especially the one who is severely autistic. I hope you can find time for yourself, to
    meditate, relax, do some deep breathing, and think positive. Are you a single parent or have help from a husband or anyone else?

    Yesterday was Thanksgiving, so you may very well have felt extra pain from the pressures of the holiday.
  4. miffybunny

    miffybunny Beloved Grand Eagle

    Thanks so much for your replies! Pandagirl that exercise program sounds extremely interesting! I need to look into that...Hi Walt: yes my home life is chaotic and beyond stressful. It's like being on a battlefield every day. I'm in constant fight or flight mode and the fact that my husband travels extensively adds to the burden. I think the RSD and my daily relentless stressors make my situation a double whammy.. I will overcome regardless but I often wish I could remove myself from this house entirely in order to heal. I'm jealous of people who get to go to rehab. it would be a blissful vacation for me!
  5. North Star

    North Star Beloved Grand Eagle

    Oh Miffybunny...hugs! I wish I could bring you a meal or something. My son was on the autism spectrum and has ADHD....no where near "severe" but parenting was...and continues to be very intense with him. (He is now 19.)

    Are you doing anything to nurture yourself? Can you get someone in your home at least once a week for just a few hours? I know for us, finances were always so tight I could never hire a sitter. If finances are a problem are there any community resources that could provide respite for you?

    I am so sorry you have so much on your plate. I know my TMS kicked into high gear when my kids were little. As much as you can, release yourself from expectations to be super mom. Love your kids and to heck with dishes, if that's what it takes. (We went through a LOT of paper plates! I called them "the hired help".) Sometimes small little practical things like that can help a lot. Looking back, I can see where the expectations I placed upon myself as a parent were just unrealistic.

    Grace and peace to you....

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