Just Diagnosed

Posted , 12 users are following.

Hi my name is Jenell I'm 30 I was recently diagnosed with CRPS.. I have nonidea what is happening and what to look forward to. I had ankle surgery 8 weeks ago and the pain and swelling was just not going away .So we tried gabapentin for nerve damage wasn't working so now I'm on lyrics and had a nerve block which also didn't work.. Can anyone help me to learn some more of what the rest of my life is going to be cause from my understanding there is no cure.

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  • Posted

    Ask your doctor about Naltrexone.  It greatly improved my symptoms of crps, the burning, discoloration of skin, the temperature change in skin, the terrible pain.    It can be taken along with Gabapentin (I take this) or Lyrica (did't work for me).  I also had 2 nerve blocks which did nothing.  I am in physical therapy 5 days a week to get movement back in wrist, fingers and shoulder.  I broke my wrist back in February.  I hope you are seeing a pain management doctor.  If you are up for reading there is a book called "No It's Not in My Head" by Nicole Hemminway.  It's a woman's journey dealing with crps.  I'm so sorry you are dealing with this.  Take care.

  • Posted

    Hi,

    I was diagnosed almost 4 years ago,in both my hands.The best advice I received was to keep it moving.I did that at every possible chance and I have now been told my CRPS is residual. Be positive!

  • Posted

    I'm sorry to hear you have been diagnosed recently too. I'm going on 4 months . Had similar experiences. Nerve blocks have not done anything. Acupuncture has helped me the most so far. My calves are not as light and my circulation has improved. However I'm depressed most days and can't sew as much as I uses to. I'm self employed and can no longer work at same pace. There is a drug in Italywhere they claim patients can be cured 20 - 100% wish I could get there.

    My pain specialist dr. Has been very good even though blocks have not worked. He tells me I have severe ptsd along with crps. That sexualized traumas from my childhood are hindering my healing. Now I have to add a therapist to my list. I read this is most common in women. Wonder how many of us that can't heal are dealing with unresolved traumas. I sprained my ankle and it's gone up to my knee now. I have the cold version and when it's real bad feels like walking on glass. I did have a fibroid cyst size of a football on my uterus removed a month and a half b4 i fell. It was a very stressful surgery. Dr. Says there is no connection.

    A physical therapt should help both of us get more strong. I'm so sorry you are even more young then i. I know how stressful it is. Usually I make art as self therapy or just plain be a workaholic. I get so depressed when I can't create and work. I somehow we can all get better. Life just seems so unfair.LOTS OF LOVE

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