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Crps full body and head /face /mouth

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brenda_savvy
brenda_savvy

Hello all. I have crps 18 months. It started in my left ankle after a sprain.  Within a few months I was diabogosies and worked hard to get off crutches.  To this day I still don’t use them.  12 months into it things starting going wrong. It spread to all limbs neck back hips....   I am not sure if nerve blocks was to blame but all treatment was stopped. I am chemically sensitive to medication.  Medical marijuana is not available in the country I live. I use cbd oil. It’s ok. 

Now it’s gone into my face gums mouth. This is a new challenge for which I am not coping so well with.  My pain last week hit a 10 when a dentist tried to make an impression of my teeth for night guard.  It was not s good day I never had pain like this in my life.  

Eating is difficult this week. Above all this I am positive person and wonder was all the medical intervention and chemicals from meds making me worse. 

Any advice would be grateful appreciated.  I have 3 young kids one is a toddler.  So as you can imagine daily life is impacted severely. 

Thank you 

0 likes, 38 replies

38 Replies

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  • Struggling50
    Struggling50 brenda_savvy

    Posted

    Hello, Brenda.

    I am so sorry that you are going through all of this.

    I have CRPS in my right foot and leg.

    I have taken medical marijuana. I took it for almost 2 years. I stopped taking it as of May 2017. I'm sorry that medical marijuana is unavailable to you. There is a type of high quality CBD that helps a great deal with pain but I do not know the name of it. I will find out what it is for you and private message it to you.

    Now I take Pristiq (an antidepressant), Gabapentin and 2 Benadryl at bedtime.

    I have found that the Benadryl helps with the pain and sleep.

    I have heard that other people have had pain reduction by taking Benadryl. I don't know if you have Benadryl where you live. Maybe there is an equivalent to Benadryl where you live.

    Try to lead as normal a life as possible. Staying positive is key. You have to retrain your brain and body to deal with pain. That is why you have to keep doing your normal life things. It hurts but keep doing them. By doing this you are retraining your brain and nervous system to deal with the pain in a new way.

    I have done this twice now. Once with Fibromyalgia and once with the CRPS.

    I had the mouth, teeth and gums pain with Fibromyalgia. My teeth actually felt swollen! It did hurt to eat but I did it anyway. Start out with soft foods and work up to harder to chew foods.

    Pace yourself when doing housework and errands. Rest when you can. Can a family member or friend help occasionally with your children? That way you can do something you enjoy. Get sunshine and fresh air. Watch comedies and laugh. Eat as clean a diet as you can. Avoid chemicals in food, water, personal hygiene products, laundry products etc...

    Avoid sugar, potatoes, tomatoes (nightshade foods), alcohol, cigarettes, cigarette smoke, white flour products, as best you can. Anything that will overstimulate the Nervous system.

    Find something to help you sleep. It is so important with CRPS.

    Take walks on smooth even ground. Find awe in things, watching your children play, a sunset, a beautiful day, the softness of a cat's/ dog's fur etc...

    I prayed. I prayed for others, for the world.

    I will pray for you. Stay in touch. I will get the name of the CBD product to you. It can be mailed.

    I am in the USA.

    Hoping you find relief soon.

    Tracy

    • brenda_savvy
      brenda_savvy Struggling50

      Posted

      Thanks for replying.  Most of what you said I do   As in diet and pacing.  I have hired help with kids and I have cleaner twice a week. Yet my body still is in a bad way. I don’t take meds as they make me worse. I use meditation to try sleep.  I will try eat more soft foods and stop talking as much as talking is setting it all off too.   I am hoping weather improves too. I would luv to hear what cbd oil you can recommend thank u 

    • lisavila
      lisavila Struggling50

      Posted

      Tracy, that was such a beautiful and very helpful reply to Brenda. That's been my recipe to cope. In addition, meditation and yoga if possible. I have also been reading about neuroplasticity as a way to rewire my hyperactive brain.

      Best to you all,

      L.

    • brenda_savvy
      brenda_savvy lisavila

      Posted

      I must look that up. 

      I feel so sad today. My baby’s wants to go out he’s 2 but it’s 0 degree today. It’s way too cold for me.   I just sit and look out the window. ..

    • lisavila
      lisavila brenda_savvy

      Posted

      Brenda, I hope you have a support system around you. Family, friends who can help you taking care of the kids. Make sure you seek help from them and also from the city or county you live in. Sending you warm thoughts!
    • brenda_savvy
      brenda_savvy lisavila

      Posted

      Hi.  My husband works full time.  My sisters all have their own big families. My bro lives abroad and my mam passed away. My dad is not able.  I do have toddler in play group 3 afternoons per week but mostly I am full time Mammy with full body crps ! 
    • Struggling50
      Struggling50 brenda_savvy

      Posted

      Hello, Brenda

      It sounds so difficult to have to deal with CRPS and have to be a mother at the same time. I'm sorry that you can't go outside with your baby.

      Lisavila's reply about neuroplasticity is so true. I did this by doing crossword puzzles, the daily Jumble puzzle I the newspaper, jigsaw puzzles and coloring in adult coloring books that were very intricate.

      Her recommendations of yoga and meditation are spot on. I did Tai Chi too. I went to the local recreational center and did deep water range of motion exercises in the pool and rode a recumbent bike on the lowest setting.

      If you kiv

    • Struggling50
      Struggling50 brenda_savvy

      Posted

      Oops. Hit send too soon

      If you live near a recreational center maybe they have a day care.

      Keep your spirits up. You sound like a strong and compassionate woman.

      Best wishes sent to you.

      Tracy

    • lisavila
      lisavila brenda_savvy

      Posted

      I use CBC oil (from cannabis, not hemp), 28:1 (28 cbd to 1 thc); no psychoactive effects at all. I take it in the evening as needed; it helps with nerve pain and anxiety. I'm pretty sure you can find this online if not available in the area you live. Make sure it's a reliable source.

  • lisavila
    lisavila brenda_savvy

    Posted

    Dear Brenda, my heart goes out to you. I also sprained my ankle 10 years ago and through complications I also developed CRPS. I live in Northern California and I am part of a Facebook support group for individuals who suffer from CRPS. It's a valuable group because you hear everyone's story and learn about all kinds of treatments available to you. Here's is the name of the group that I highly recommend:

    RSD/CRPS California Support Community

    • brenda_savvy
      brenda_savvy lisavila

      Posted

      Thank you. I will add this group and intro myself today.  😀

    • taminflight
      taminflight lisavila

      Posted

      Thanks for mentioning the California support groups on Facebook. My CRPS is a result of a trip and fall at work so it's hard being constantly denied any possible treatment or medications. I'm using a CBD medicated rub on my knee and a Nano CBD sleep oral spray.

      I'm hoping just to settle with the insurance company so I can see my own doctors.

    • taminflight
      taminflight lisavila

      Posted

      Thanks for mentioning the California support groups on Facebook. My CRPS is a result of a trip and fall at work so it's hard being constantly denied any possible treatment or medications. I'm using a CBD medicated rub on my knee and a Nano CBD sleep oral spray.

      I'm hoping just to settle with the insurance company so I can see my own doctors.

  • Ironman576
    Ironman576 brenda_savvy

    Posted

    Sorry your having problems with crps and it spreading so quickly.i have full  body crps And it’s also in my face and gums .i hope you have a dr that specializes in this horrible disease.they say the faster you treat it the less chance you have it spreading.it took me 3 years to get diagnosed .so that’s why I went full body.yoh  could try ketamine infusions.they really helped me when I was bed Riddin for the first few years befor I was diagnosed..it got me out of bed and able to do things in the beginning.back in 2011 I had my first infusion..I’m getting another one in two weeks because I’m really  struggling and hurting  all over.there also a lidocaine infusion that works well too.ive had that done several times. crps can ruin your teeth.there are many of us that have failing teeth.they say it’s from the medications and dry mouth.im sure it has a little to do with it.but in my case it was crps.ruined everyone of my teeth.” Im having implants put in now”I think the lack of blood flow,bone loss caused most of it.i don’t get severe pain from the oral surgeon.although it is painful.i hope you get  the treatments that will help you stop the spreading and get some relief .i wish you and your family the best brenda
    • brenda_savvy
      brenda_savvy Ironman576

      Posted

      Hello ! Thanks for replying 

      I actually had 2 ketamine infusions in the last two weeks.  My face and gums got so bad I couldn’t even drink water. I was taken it o hospital for fluid and ketamine had lose dose of 20ml over 2 hours.  6 days later 50ml over 3 hours and a block for face. This together helped me a lot !! I can drink water and eat soft food this week.  I am getting another one on Thursday. Also taking it at home oral version 3ml every 4 hours. I went for a walk with my 3 sons today ! I even kicked a soccer ball !  Pleas god this is the answer 

    • Struggling50
      Struggling50 brenda_savvy

      Posted

      Hello.

      Hopefully the FDA will approve Neridronate very very soon for treating CRPS.

      Have you checked the internet to see if there is a Neridronate trial near you? They may still be doing trials for this drug.

      I hope that you are doing better.

      Tracy

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