I appreciate you taking interest in the situation, I'll try to adress the points you raised:
To give a general timeline:
She has had toe cramps ever since she can remember, but the flare ups were sporadic, like once or twice a month. When they happened she used to walk around until they stopped. Doctors prescribed her magnesium and she took deflazacort for the spine pain.
She fell in March/2018, at first the foot would become really hot and she need to do ice to get relief. She was prescribed paracetamol with a muscle relaxant, which she took 3g a day. Then it begun to get cold and cramping. So she used a electric blanket to reduce the spasms.
In time, they symptoms spread to the other foot and to the legs. This is characteristic of complex regional pain syndrome. Hence the diagnosis.
During this time we were mostly vegetarian to see if it would help her autoimmune condition.
She begun gabapentin in April/2019, the baclofen was started by her Doctor when the cramping progressed -- possible in November 2019(?). We went to Italy, so she could be seen at the European Hospital in Rome in May/2019.
She got became fully bedridden until December 2019.
Then she decided to try and walk as little as she could each day and by the time covid hit and we went into confinement here in Portugal, she was able to walk about 3000 steps per day. Her father gave a smart watch so she could gauge her progress and remain motivated.
Curiously, during this time we had no particular diet, as vegetarianism had failed us greatly. She ate a lot of Macdonalds too.
During this whole time, any sort of greater stress would put her into "cramping mode", so we got her a psychologist and she begun to learn about TMS (Dr. Sarno work).
This was the peak of the best she ever was since April 2019 until now.
In the winter of 2020 (about October 2020) she became increasingly worse again -- all her family on the father side have ankylosing spondilitys, and they get worse with weather changes -- so she resorted to deflazacort (a corticosteroid).
She spent a really bad time: mostly bedridden during the days, with the exception of her short morning walk, which she did until the cramping begun, then she would come home screaming every time she had to put whatever foot was cramping on the floor.
When Summer 2021 came she become gradually got better again. When she got tonsillitis she was prescribed an antibiotic called amoxicillin, She had to do 2 rounds.
This was when her health took a massive dive and she had to use the wheelchair for anything beyond a short walk.
This was what prompted me to research more. That's when I leaned about Lyme and how antibiotics make things worse (herxheimer) and it would also explain why deflazacort (shutting down the immune system) would be related to her getting worse in the winter.
She hasn't done any other drugs, besides the pill because the cramps get much worse during her period without it.
If my memory serves me right, we begun heavy supplementation around the beggining of 2022, with something called the Cowden Protocol, she begun getting a little better but after getting covid, she spiked a high fever, had massive headaches, and it was from that moment on that her health took a really big turn for the worse.
After Covid she begun to spasm and cramp for no reason, every little kind of stimulation would get her cramping.
That's roughly the timeline.
Now I'll try to adress the questions:
-- Have you checked her copper levels? Done an HTMA test?
No. When she tried copper the cramps flared up a lot.
- The amount of supplements she's on, in all honesty, might be a huge factor in how unwell she is because it's REALLY easy to throw our system out of balance with this kind of approach.
Yes, I recognize that.
- In all honesty, and not to be harsh, but the fact that you came here with the belief that sugar is bad tells me you need to lean how the human body genuinely works (metabolism etc) before you begin attempting to solve all diseases/disorders she's potentially facing.
Well, what I don't know yet could fill most of the libraries of the world. But I'm more worried about what I think I know that is actually wrong.
-- Have you done a stool test to see what's happening in her gut?
What kind of test would that be? I don't thing such tests are available here.
-- Unless she actually got sick then those things likely gave her a stronger immune system.
From what I've read, once infected, getting your immunity low - or taking cortisone - could percepitate symptoms.
As it seems, these bacteria love to indulge in collagen and they tend to migrate to areas of injury and stimulate our white blood cells to keep producing inflammatory cytokines in order to keep the eating frenzy ongoing.
-- Have you checked her liver function? I'm honestly a little worried with how many things she's been taking if you go any harder there could be real damage done.
Only with the basic enzyme tests, but the last test was before the pandemic I believe.
-- You know human beings need sunlight to survive right?
Yes.
-- Doing any physical work to support her vegas nerve?
She tries to move her arms, and sometimes lifts 1 kg weights.
-- Her serotonin levels are probably sky high with very little dopamine.
How could we address that?
-- That is literally her body screaming for glucose. The irony of not eating sugar but being willing to eat bread is strong here.
Now that you mentioned it... ._.
-- What happened after she sprained her ankle? Like what medications are supplements did she begin to take?
See timeline above.
-- I'd buy a nice grounding mat, make her look at the sun morning/night.
We have a grounding kit, which she did use for a time. Probably in 2019, when we also used a PEMF machine.
-- Cut out as many supplements as possible.
She's currently taking glycine, TMG, Glyteine (a glutamine-cysteine compound) that promotes glutathione production, magnesium malate, B-Right (Jarrow Formulas), Glutathione, Melatonin, Vitamin D, Boron. Sometimes Iodine, adrenal cortex, vitamin K2, probably a couple more.
-- Look into protracted withdrawal symptom for benzodiazepine type medications and then look into amanita mushroom if she's needing to get off of those.
I don't think she has ever taken benzodiazepines. But will look into it.
-- I'd look into some real mental health help not to say that she's not experiencing this, but you have to wonder how much of this you are enabling?
She used to be followed by a regular psychologist in person and a pain psychologist over skype (at the time). It was helpful also she has a really supportive family and friend structure. She also used a notebook only she was allowed to read for journaling her thoughts, as part of therapy. It helped a lot in keeping her head above water while dealing with suddenly becoming disable, as she was very active.
-- it does eventually become a hindrance if it's blocking her from facing things that she may need to sort out emotionally for the sake of recovering. It's really easy to overlook the emotional/mental health aspect of illness.
I agree. We've focused on that as part of our approach. She's also very strong emotionally and psychologically.
Perhaps I've painted a picture in your mind of a young woman hiding in the darkness of her bedroom not wanting to see anyone, lest her feet not spasm. While everyone around tries to walk on eggshells so as to enable her fear of cramps. When I wrote "at the moment" it has been literally this week that this agoraphobic behaviour emerged.
People with CRPS with her specific type of foot issues have limb amputation as part of the medical approach when opioid therapy fails. It's really that bad. That's why I stopped following the CRPS community and begun looking elsewhere. It got me all the way to Ray Peat, the crazy guy that thinks evil sugar is a staple.
I do believe we are dealing with a vicious infectious agent(s).
Obviously everything that can be done to support metabolism will help. From what I have read elsewhere pathogens can only survive in a low metabolic environment / so called "acid" or "low oxygen".
So increasing metabolism can only help. I guess there's no shortcut beside reading Ray Peat articles, right?
