I would love to be of some help, but I am new to the site and am not familiar with most of the terms either.
As for a doctor, I lucked out with a pain doctor because that is my most debilitating symptom. He actually treats quite a few people who are hypermobile. His explanation for that is that he is not in a hospital environment and feels like people end up in his office after they have been through a variety of other doctors. Due to that he tends to see people a typical pain doctor can not help because they are not aware of the symptoms. He has taken on the task of learning each individual and what is going on with them. He has had so many such experiences that he properly diagnosed me on the first visit and had a plan of action ready. He also has meetings with a group of doctors that talk about hypermobility. I have no idea how to find out who those doctors are or what their specialty is. He says that he is always on the look out for hypermobility right away. When he finds it he immediately looks for pain, sleep problems, hormonal imbalances, and depression/anxiety. Those are the 4 things that he and his group of doctors have noticed are common in the majority of hypermobiles that walk through their doors. Not all have all 4, but most have at least 2 or 3. I have all 4. Those cause large variety of symptoms, but at least they are acknowledged. I have tried to find a doctor that is closer to my home and workplace, but have failed. No other pain clinic in the area will see me, nor any of the rheumatologists, so I continue to make the drive. It’s worth it.
I relate to many of your symptoms. My ankle/knee issues have vastly improved since working my legs out a lot (hike large distances and treadmill). My doctor believes that one of the best things for hypermobility (just the elasticity of ligaments part) is to build up the muscles around the area as much as possible so they can better hold the body together. It’s not easy and sometimes not even possible and it would need to be a life long thing if it is possible. It has helped me a lot. My ankles no longer trip me when I walk, and my knees are no longer popping and they no longer feel like they slide to the sides. Once we squared away my pain and asthma I have been able to work out. It was slow going though.
The electrical feelings and numbness sound neuropathic. 98% of my pain is now nerve pain and most of it is in my upper and mid back. Without medication it slowly creeps into the rest of my body. I rarely have muscle pain since working out, but my nerve pain is severe enough that I am disabled without treatment. In my case opiates simply do not work. I am currently using Xyrem and compounded Naloxone for nerve pain. When I last spoke with my doctor he said he’s found that the majority of hypermobile he has treated respond very well to Xyrem for pain and sleep issues regardless of if the pain is muscle or nerve, but not all respond. The theory is it does well with muscle because it releases growth hormone which is thought to help muscle repair and nerve because poor restorative sleep leads to nerve pain. Xyrem offers restorative sleep for longer periods of time and much quicker. Naloxone is a bit more unreliable and only works for nerve pain. He estimates that it works in thirds. 1/3 get no relief, 1/3 get some, and 1/3 find it to be a miracle. I personally fall in the 2nd bracket. It helped me a ton when I lost access to Xyrem, but now that I have it back I’ll be ditching Naloxone. Without Naloxone I could do nothing at all so it was a vast improvement to be able to hold down a job and continue my exercise. I still had moderate pain every day though. Xyrem, had me at zero – 3 pain for 5 good years. I just want to note here that I’m not suggesting either medication, these are just my experiences and the findings of my doctor. Both medications are way off label and insurance can be particularly crabby about Xyrem (It is EXPENSIVE). I almost never hear either of these medications mentioned on any EDS site I have been to. Xyrem is more common on Fibromyalgia boards because it was found to be very successful in those patients during their studies. Sadly, the FDA decided they did not want that many people to have access to the medication. And I understand that to an extent.. it is GHB and it was used as a date rape drug for a period of time, but there are not many good fibro options, so I am sad for them because of that.
I also share your cold hands/feet, I am somewhat intolerant to heat, and also very rarely sweat. To get my hairline damp I typically have to hike a strenuous mountain for a long period of time(4+hrs). I never sweat on a treadmill or if I am just walking and certainly not from day to day stuff. I have assumed in the past those issues were due to my low pituitary function (thus low thyroid function). My body temp is in the mid 96 range, pulse and blood pressure are low. I also do not tolerate bright light or loud Noises. Brain fog for sure and short term memory loss, but I have noticed those get better when my pain is sorted out. My skin is a bit stretch too and I am slow to heal. The tiniest little scratch becomes infected and often scars. Very quick to bruise. Allergies galore. I am scared to death to have children because I was told by my gyno that I’m high risk enough with this condition that I would need a doc that specializes in high risk pregnancy. Oh, and I also feel like I pee a hundred times a day, lol.
I don’t have many answers in relation to this site, but hopefully just knowing someone else shares some of your symptoms will help. Sorry, that was a mini novel!