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