Crps full body and head /face /mouth

Brain and nerves
1

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 

2

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

3

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

4

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 

5

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

6

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.

7

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. ..

8

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!

9

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 ! 

10

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

11

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

12

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.

13

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.

14

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.

15

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

16

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 

17

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

18

Hello Brenda,

I am in the same boat. I can't imagine how hard this is for you with several young ones at home to care for; I'm also a mother of 3 but my kids are all grown up and living independently, not in need of daily, if not hourly, goods/services/hugs from mom.

Latest research says, direct treatment of the pain with things like opioid medications and lidocaine patches, etc., is not optimum for many patients, especially if your process is centralized (and for those of us who have the full-body version of this stinkin' thing, that's kind of like we're the poster-children for central sensitization). Anyhow, see if you can't find a specialist in your part of the world who is up to date on the fact that treating for the autoimmune and inflammatory components of this condition is the way to get symptoms under better control. If not already done, check out the videos on YouTube of Dr. Pradeep Chopra from Brown University, and Dr. Jay Joshi, a pain doc/anesthesiologist from northern Illinois. Both are very up to date. Unfortunately there are a lot of medical professionals that are NOT up to date on the science behind CRPS; there's a lot of misinformation out there, even among professionals who are at least locally well-known for treating CRPS. The science has changed so much in just the last 10 years that if a medical practitioner hasn't kept up with the advances, there's a lot they may THINK they know, that they don't. And ultimately, you are the one paying the price for that lack of knowledge.

I'm a former biologist, current registered nurse, and I worked with injured workers as a case manager prior to getting CRPS myself. I saw several cases of CRPS, one a brand-new diagnosis (that was 20140 and several injured workers that had just not recovered from their injuries, and so the insurance company wanted me to find out why (And the unspoken assumption was these folks were either outright faking their pain so they didn't have to return to work, or they were crazy. Or both). Turns out it was neither; they were undiagnosed cases of CRPS. I had one doctor tell me that this patient didn't have CRPS; she had RSD. Hmmmm. I had another doctor tell me our patient didn't have CRPS in her arm to the shoulder, as evidenced by the fact that he'd given her a nerve block and it didn't help her. And everyone knows (he said) that CRPS is a condition of malfunctioning sympathetic nerves, so a sympathetic nerve block should work... And if it doesn't work, that means it's definitely not a case of CRPS. That's probably what the medical texts said back when this middle-aged physician was in medical school, because it's been a good 20 years ago that reports in the literature began disproving the "sympathetic nervous system only" theory.

Ketamine infusions have really helped me alot. Low-dose Naltrexone daily has been a big help, as has the ketogenic diet; all these treatments, at the end of the day, reduce pain by reducing systemic inflammation.

Keep asking the hard questions, and being your own detective. You WILL find what works for you, despite the ignorance out there and the occasional high hopes that you have found THE thing that's going to make all the difference and result in the Big Cure. I keep looking for this too, but in the meantime, I have, over the last 2 years, found several little things that each give 10-20% relief, and that adds up to the point where (unless it's super cold outside, or  the weather/barometric pressure is changing really fast!) I have about 6 hours in which I function at about 50% my former speed and energy levels. But by working smart instead of hard, I still get Stuff done. Wishing you the best on your journey!!

 

19

Wow Sabrina, thank you so much for taking the time to share this information. I have read a LOT about CRPS but you summarized this condition like no other medical professional. I will look up the ketogenic diet. I also did a 5 day inpatient ketamine infusions but it really didn't help me. Question for you: should I try ketamine again even if it didn't work the first time? Pain management doc says that if didn't work the first time then there's no point trying again. But I've talked to some people who said it could work subsequently. Your thoughts?

20

This may sound a bit silly but I think you should do a 'medical trial' for a few days....and cut out all carbohydrates (except for  a few vegetable ones) for a few days and see if you feel any relief!.   You may be a diabetic without even knowing about it.  And high glucose in the bloodstream can damage not only nerve endings, but also the neurons in the brain (where the sensation of pain is felt).   A doctor may do a Hb1ac blood test and you may be below the 42 (which is the cut-of point in UK scales), so you will be told you are not diabetic....but I have never understood how you are 'not diabetic' if your blood glucose is 41....but the next day your blood glucose is 42.....so you ARE diabetic!!  The damage that is occuring  during the years that the blood glucose is rising and falling can cause all sorts of damage, the sort of damage that all diabetics are at risk from.   I am not a doctor,,,but my 'theory' is that it is damage done to the brain neurons by glycation (caused by blood glucose) which gives us the distorted 'sensation' of pain....when there is no cause that can be found for it.   Remove anything that causes blood sugar rises for a week or so and see if it helps. I bought a glucose meter and testing strips and tested before and after meals so that I know what foods raise the BG the most (usual suspects; wheat and all grains, sugar,pasta, cereal ...but also fruits and veggies!!)  .  Read some of the Diabetic forums and websites to get a better idea of the damage that high BG can cause.