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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

My wife is just 22 but is laying in bed 24/7 due to CRPS pain

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Old 05-26-2019, 05:48 PM   #1
Tiago
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Default My wife is just 22 but is laying in bed 24/7 due to CRPS pain

Hi Everyone!

My wife has Ankylosing Spondylitis (since she was 14) and CRPS caused by a fall in March 2018, just 3 months after we got married (the CRPS was diagnosed only in November 2018, though).

After several attempts with dietary changes and supplements we finally learn to keep her Ankylosing Spondylitis in control with high-dose vitamin D.

CRPS has been completely different.

Since her diagnosis I've been researching all I can on this disease but she has mostly gotten worse.

We live in Portugal and earlier this month we even traveled to Rome, Italy where my wife was treated at the European Hospital, with something called "Scrambler Therapy."

Based on everything we had read online, we were extremely hopeful about that therapy.

Unfortunately it didn't work. In fact, she was feeling worse during it =(

But we are not giving up.

Now that we are back in Portugal she'll re-start LDN (Low-Dose Naltrexone)

She has also begun Motor Graded Imagery (GMI) -- a therapy created by an Australian pain researcher.

However, since we haven't access to a GMI practitioner, we are doing it on our own, based on the information available in book form and online.

Here's her situation so far:

She has CRPS on both feet. She takes 600 mg of gabapentin 3 times a day. However, to endure the plane trip she took 900mg in the morning and the afternoon.

Each dose of gabapentin makes her feel calmer for about 5 hours. In her own words: "Gabapentin helps me endure laying down."

However, gabapentin sometimes makes her hands shake and, occasionally, her eyes too.

How horrible can this disease be?

At this point in time she is laying down 24/7 and requires a electric thermal blanket wrapped around her feet 24/7.

She requires a wheelchair which she uses only to get to the Doctor appointments. That's how much she is getting out of home -- and that's not because she doesn't love being outside.

Gabapentin, Netflix (because it distracts her from the pain) and heat are the only things that help her pain and believe me, we've tried a LOT of different things, including:

- DMSO
- High dose vitamin D
- High dose Niacin
- L-theanine
- L-tryptophan
- PEA
- Opioids (made her worse -- it stimulates the NMDA receptors but we didn't knew any better at the time)
- Alendronic Acid (a biphosphonate) (considered the most effective drug for CRPS in a paper evaluating CRPS therapies, it did made her feel better, although it worsen her bone pain due to ankylosing spondylitis, in her jaw bone)
- PEMF -- we actually bought the device made and sold by the contractor who actually worked with NASA, it didn't help.
- Physiotherapy: It helped for a time, then she start to got worse

She only gets up just to go to the bathroom and to do a special set of gentle feet mobilizations that has been recommended to us by a CRPS survivor: drawing ABCs on the floor with her foot.

Those mobilizations actually seem to be helping her.

With all these treatments, including the failed attempt with Scrambler Therapy, we've exhausted our finances and actually gotten 2000 euros in debt.

We haven't lost hope.

Based on everything I've been learning about neuroplasticity and how the brain processes pain I truly believe there's a path to healing -- we just haven't found it yet.

If the LDN + GMI + gentle immobilizations fail, there's some other things we are thinking we might try in the future, including traveling to the USA to try ketamine infusions if our finances ever allow.

So I wonder if any of you could provide help with a drug or treatment that you've found helpful.

Thanks for reading this far
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Old 05-27-2019, 08:49 PM   #2
Littlepaw
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Dear Tiago,

I am so sorry that your wife is suffering with this awful disease. I am grateful that she has your love and support. You will both get through this and must not give up hope. There are indeed paths to healing. It can take trial and error to find the right one. It is very frightening in the beginning and frustrating trying to find answers and what does and does not work. It's good that the gentle movements are helping.

Two of the most important things:

1. Please be certain that NOTHING has been missed in her medical workup. CRPS is a diagnosis of exclusion. And it can be caused by a treatable issue. Sometimes there is an issue creating the pain problem that can be identified and remedied. Also other issues can mimic CRPS. If imaging (CT, MRI, ultrasound or whatever is appropriate) has not been done, a thorough workup or second opinion might be in order.

2. According to CRPS specialist Dr. Michael Stanton-Hicks, 80% of CRPS cases improve over time. Odds are in your wife's favor.

Movement that is tolerable is very important. Some have found aqua therapy to be a huge help if the water is not too cold. I myself benefited greatly from it.

Desensitization of the skin with gentle touch and different textures is helpful too.

Medications other than gabapentin can help with neuropathic pain. Every patient is different and it takes experimentation to find what works. Some people have reported relief with nortriptyline or amitriptyline as well as celexa and some others.

Ketamine may be available closer to home. Madrid maybe? If ketamine infusions are given there for depression that could be a place to start. The week long inpatient protocol is not the only option. I received well over a dozen low-dose ketamine infusions (1 mg per kg) given over an hour or so here in the states. Over time, my nervous system was able to re-boot. It took periodic infusions over a year's time and some occasional boosters.

Do what you can to keep stress down. Healthy diet, mindfulness and psychotherapy with someone who works with pain can all be helpful.

For many it is a combo approach of many things that help a little, adding up to measurable relief.

My CRPS has largely resolved. I had a devastating nerve injury and a series of operations on my foot and ankle that caused it. The ketamine, oral meds, exercise and believe it or not playing piano (to get my brain to give some time to a different body part) all contributed to a slow and very gradual improvement. I still discolor a bit and get occasional stinging in a small area but it no longer takes over my entire foot or leg as it used to.

At 5 years out now, I run 5k, yes really! cycle, swim and hike. My pain doc is convinced my activity level is helping not hurting. Just know that it was a very gradual progression and I was and continue to be careful.

I am sending much healing love and soft hugs to you and your wife.
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Old 05-28-2019, 11:41 AM   #3
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I just wanted to chime in and say that it can improve to be at least tolerable. I have CRPS and have for the past year-ish. I am still adjusting medications but a couple have helped considerably. I have been doing lyrica (pregablin), celebrex (celecoxib), zanaflex (tizanidine) and norco (hydrocodone) for a while which has helped. Unfortunately mine keeps spreading and worsening so we are switching up the regimen starting today to replace Norco with Nucynta which is supposed to be great for nerve pain. I don't know if that's an option where you are and I listed brand and generic names for you since I don't think your'e in the US.

Has she tried desensitization therapy? That helps a lot as well as aquatic exercise and/or PT. I did not have luck with mirror therapy or nerve blocks but those may be worth a shot too. I have heard great things about Calmare but not sure if it's available where you are. Italy has neridronic (spelling?) acid treatment which is showing a lot of promise. Keep trying different treatment regimens until you find one that at least makes life tolerable. That's really the name of the game with CRPS unless she is lucky and goes in to remission.
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Old 05-29-2019, 03:29 PM   #4
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Aqua PT in warm salt water & low dose naltrexone helped me get moving when I was losing my mind & bed ridden. I am on my CRPS feet walking with a Hugo cane in my CRPS hands. Yes, it spread, yes I have it in all 4 limbs, but at least I can get around & occasionally drive.

If your wife cannot find a warm pool, buy her a wetsuit to wear at a local pool. If your wife is like me she may not be able to tolerate tepid water. Fortunately, Littlepaw recommended a shorty wetsuit, a miracle which has enabled me to use the pool at my local “Y” several times a week. I am sorry I delayed getting the wetsuit sooner, because I lost significant muscle mass trying unsuccessfully to do my own PT on land when I was cut off from aqua PT.

I was afraid at first to try aqua PT, because showering was/is a bear. Your wife may feel the same way, if so, please tell her they are not the same. The difficult part is the changing & drying off. I purchased a surfer’s hooded changing robe that I can slip over my head to keep warm & dry off. A zippered robe could work, too. I just never found one that met my specifications. I dry off in the sauna.

Please note there is incredible fatigue with this disease that is hard to overcome. I am careful with my choices. I stopped trying to get everything done on a “good day,” because I would suffer more during the following days.

Look up Neuroplastix.com Dr. Michael Moskewitz shares animations that might help your wife. They helped me to ride a recumbent bike.
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Old 05-29-2019, 03:46 PM   #5
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Also have you considered a knee walker rollator device? I wish I had used one at the beginning to keep myself on my feet.

Last year I bought an adjustable bed which has helped me get better rest, helped the swelling far better than elevation with pillows & additionally has helped my eyes. I developed huge swollen eyelids that were beginning to impede my eyesight to the point an eye surgeon recommended surgery. I am lucky I refused, because within a few months of sleeping with my upper body slightly elevated all the fluid build up left my lids.

I am convinced that some of our CRPS agony is exacerbated by sluggish lymph. I use a mini trampoline to bounce my feet on.

You might be able to find a person to give your wife lymphatic massages.
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Old 05-30-2019, 08:33 AM   #6
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There are 4 members of my family with CRPS. Three are on disability and one should be (me), but I still try to do what I can to earn a little money at my desk. I don't have a lot to add, as I have tried and tried many therapies and so far, can't say that anything specific helped me. Likewise, I take various medications, but can't say anything is working well for my CRPS. I am writing because of the family members I have with CRPS, three of us are still active (that doesn't look the same as active with non CRPS people, active for us is usually confined to our houses mostly). There is one who went to bed and never got up. He got huge in the belly and everything else shrunk to nothing (arms and legs). He is doing worse than the rest of us (I believe it's because he went to bed one day and never got up again). He grew bitter, then angry, then suicidal, and is a mess.

I do things around my house as much as I can, but I don't accomplish what others do in the course of a day. I have a small career, and do desk jobs mostly. This keeps my mind and body active enough to feel like I have a piece of life happening. 22 is really young and I am so sorry to hear this has started for her so early. Your commitment to her is amazing and I am grateful for you !!!

In the USA, doctors don't agree on how to treat CRPS. Even at the large teaching hospitals, their protocols are vastly different, with none being touted as "the cure or a great treatment" for CRPS. The doctor I have now is willing to try various things to attempt to help me, (he is an anesthesiologist), but so far, nothing sticks..... Ketamine is very expensive, with a course of therapy running around 12k. My doctor says, as do many teaching hospitals, that it's results aren't stable enough to say that it truly helps CRPS patients. Also, those treatments must be repeated, and 12k a pop is ultra expensive, so for me, we've decided against it at this time.

I am being told by my doctors that a body in motion stays in motion, so their goal for me is to continue to work for mobility and function, whatever that looks like for me. I am in an electric wheelchair, but I get up and down sometimes through the day and move as best I can in it so that I stay in motion. I hope there is some way to get your wife up and moving some, so that she can participate in life to any degree. Laying in bed works for a while, but I know my mind, and it wouldn't be long until my thoughts and perceptions got the best of me.
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Old 06-12-2019, 07:01 AM   #7
annabanana123
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Default Update on nucynta

It helped with pain but I discontinued after 3 days due to side effects. I would still try it but be a little leery...for me it was insomnia, anxiety and great relief...for 3 hours. Then the pain came back with a vengeance worse than before.

Just wanted to update since I had recommended it earlier in this thread. Based on that experience I went back to hydrocodone for now.
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Old 06-12-2019, 09:37 AM   #8
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I wish you the best.

I am in Belgium.

What is wrong with standard treatment in Portugal, that you aren't "following" that?

I get gabapentin (900mg 3 times a day) for the pain together with buprenorphine pain patches and sublingual tablets.

I have this in my legs, fully, and hands/shoulders/fingers.

In my legs (diagnosed 3 years too late) it is chronic, nothing can be done.

I totally understand not getting out of bed; before I got the pain medication I was in there 24/7. Now I do bedrest until 10-12AM, so half the day. It is still quite unlivable but the pain medication helps a huge deal!

It is atrocious.

My arms aren't yet disabled, as my legs are, and for that I get calcitonin treatment.

I have had bisphosphonates (for recalcitrant RSD/CRPS) as well -> for the legs).

I have had all common EU treatments, even went the Dutch route with Lysomucil 600mg 3 times daily (anti-oxidant treatment). Never touched the DMSO however, too dangerous in my book!

Anyway I wish you the best of luck, because this is a horrible disease and a rare disease to top it off. Not all doctors are even aware this exists. So you have to look for a doctor that understands and has done research on it.

Good luck!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-13-2019, 09:40 PM   #9
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Good luck.

I have to believe more exercise is needed. I know how hard this can be but even bed exercises can help. At such a young age the lack of exercise isn't quite so catastrophic but it will catch up with her in the long run.

I've found Ginkgo biloba to help with pain and make the gabapentin more effective. I take 60mg in the morning and 120 at night.

This is a tough condition and it seems to affect us each a little differently. But it seems most of us come to deal with it a little better over time. Being young gives her an excellent chance for a remission.
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Old 06-14-2019, 05:24 PM   #10
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Quote:
Originally Posted by Imahotep View Post
Good luck.

I have to believe more exercise is needed. I know how hard this can be but even bed exercises can help. At such a young age the lack of exercise isn't quite so catastrophic but it will catch up with her in the long run.

I've found Ginkgo biloba to help with pain and make the gabapentin more effective. I take 60mg in the morning and 120 at night.

This is a tough condition and it seems to affect us each a little differently. But it seems most of us come to deal with it a little better over time. Being young gives her an excellent chance for a remission.
I was 23 when I had my car accident. My CRPS is chronic and has led to a disability; both legs affected. Being young has nothing to do with going into remission or not.

It depends on how this is treated. And treatment is necessary. And then again, sometimes treatments don't do a thing. Also something to take into account.

I was young. I am 46 now and am still stuck with this thing!!!
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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