Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!

[iamthatis]

Thanks for the info!
I don't know if it's good for me yet. I never tried it nor paid much attention to it because I thought it was helpful only for extreme cases, such as autoimmune diseases, which I don't have. But this recent info makes me think twice...

I'm still at the stage of trying to implement the basic Metal / Candida Detox plan from Laura, but I'm struggling to implement it firmly. This said, a Low FODMAP diet would be more realistic considering my tendency to cheat all the time.

The next step I need to investigate is whether there are psychological or emotional aspects to the way I relate to food that would explain why I can't stop cheating. Laura's words keep echoing in my mind from the last session: "It's not worth it. Being in pain for days just for a bite of tasty food."

Cheating is usually a result of victimhood thinking, laziness, entitlement, and suffering avoidance. that's how it was for me, and I think the same could be applied generally. Have you read George K Simon's Character Disturbance or Inside the Criminal Mind by Samenow? Reading those two books, and taking them as VERY personal criticisms, helped me a lot with my tendency to cheat. Then it became easier to do what is right, not what 'it' wants.

 

[meadow_wind]

Have you read George K Simon's Character Disturbance or Inside the Criminal Mind by Samenow?

I'm not there yet on my reading list, but now I'll prioritize them.
I can say suffering avoidance 5/5. Laziness 4/5 on the days I don't feel well. So I might be sabotaging myself to sustain my laziness...

 

[Gaby]

FWIW, MCAS mainstream protocol:

Montelukast 10 mg once a day (for those sensitive or with Ehler Danlos, preferably in the morning as opposed to the evening).
Sodium cromoglycate 100 mg three times per day 30 minutes before eating
Famotidine 40 mg once a day
Bilastine 20 mg twice a day

It does help to have it around for those affected, even if not taken every day. Fish and other MCAS triggering foods are doable with this protocol.

 

[Fluffy]

An update on my experiment with low dose doxycycline.
I’ve been taking a subantimicrobial dose of 20mg daily for 3 weeks.

I believe I have hyper mobile EDS. I suffer chronic pain that can be anywhere in any joints, muscles or ligaments though primarily in my left pelvis and hip and anywhere in the left leg. I have a whole cache of other symptoms too though pain is the most challenging. I also have had chronic gut issues for longer than I want to remember and a tilted uterus, both backward and slightly to the left. In a major flare up I can barely walk, flare ups correlate with incorrect food choices (which I still struggle with) and severe prolonged sleep interruption. If I eat well, sticking to mainly beef I have less pain, though still enough to need daily massage and stretching for several hours.


Since starting the doxy I have had significantly less pain, the little nodules in my muscles and ligaments have reduced in size, I have much less gut discomfort from wrong foods and feel like I’m coping better with the sleep disturbances- most of which are out of my control, sometimes I’m awake because I’m wired/tired but usually it’s something else, my 2 year old, the neighbour’s dog barking, or my partner coughing from aspirating with his disease.

Yesterday I forgot to take the doxy and woke up this morning hurting. I took a dose and within half an hour the pain was almost gone, I give it a 1/10. I’ve also incorporated using a tens machine on painful areas though hadn’t had to use it since last week.

So far it looks promising.