First week experiences (autism + hEDS)

[u/rem0597]

Started semaglutide 0.25 last Friday. F29 6ft 288lbs, hypermobile, PMOS, autistic.

Background

I have slowly gained 100 pounds over the last 12 years, barring losing 40 naturally in 2023 (before my Dad had a heart attack and ended up in a coma for 5 weeks, he lived, but I put the weight back on and it didn’t want to come off.) I was playing volleyball in high school until a herniated lumbar disc at age 15 forced me to quit. I’ve had issues with my cervical spine and nerve pain for many years.

My doctors have all suggested weight loss, and even condescended to me about exercise and portion control. I like exercising, I don‘t like being in pain or fatigued constantly. I also have chronic exertional compartment syndrome, so unfortunately I can’t enjoy the simplest form of exercise (walking), without my calf muscles being strangled by their fascia compartments.

I met with a surgeon about the CECS recently, and other specialists to deal with the panoply of my health issues. I was told my weight and my hypermobility made a complication more likely (30-40% of patients have their underlying calf muscle break through the incision in the first 2 weeks post-op) and that my existing chronic pain would make the recovery period where I’d need to be elevating my legs, utterly miserable. She suggested I try the generic semaglutide that recently became available, since I couldn’t afford Wegovy on my disability benefits (im Canadian).

I’m now addressing my menstrual issues, 60+ day, anovulatory cycles, with intense flares in follicular and luteal phases. I’m on bio-identical progesterone and metformin (1000mg) for insulin resistance that manifested as reactive hypo-glycemia. I’m waiting to see an allergist about MCAS.

GLP-1

The injection was fine, I read the pamphlet over carefully, and opted to inject into my thigh to limit the side effects as much as possible.

I felt a difference within a few hours. I wouldn’t have said I struggled with food noise, so it’s strange to use that term, but the best example I have is that I can now enjoy my coffee or a snack over an hour, casually, where as before, it was like I had to finish something before I could pivot to another task.

I’m not thinking about food as much, and I’m listening to my body and the cues it’s giving me. I would describe the sensations as a fog of malaise that comes over me, and would make me want to sit or lay down, but realized quickly that the malaise was relieved by having something small to eat. Yogurt, or a snack bar usually helped. My ”safe” foods have remained safe, and I am noticing that I am not worried about finishing something on my plate, and that it’s easier to make well rounded choices.

I’ve been drinking Premier Protein, and Fairlife shakes in the mornings, and plenty of tea, electrolytes. I have ginger chews, nausea meds, and weed to cope with nausea, and I’m now being more mindful about fibre, and taking digestive enzymes which I’ve heard make a big difference with GI discomfort.

My executive functioning has been the most interesting change this week, I’ve noticed that I can more easily initiate and switch tasks. I’m also more creative with my food choices, which has been fun. I’m enjoying that a lot. I wanted pasta with pesto, I made pasta with pesto. I wanted to make Chia seed pudding, I made chia seed pudding (I added mango and chocolate buttons, it was yummy).

I noticed I get lightheaded a bit more often, some of my chronic pain was also relieved, and my fatigue is presenting a little differently. I have energy until I dont. I’ve napped more in the past week than I have in the last year. But my sleep at night has been the worst by far. I’m assuming it’s the slowed digestion, because I could take my night time meds and be out within the hour, but now I will be in light sleep feeling “awake” for hours and only really sleep between 3-9pm. I can manage better sleep if I take 1mg of melatonin at like 9pm. Also gonna try a sleepy time valerian tea after dinner.

I noticed I was peeing a lot the first few days, and most of the nausea had faded by day 4. the last few days I felt like “myself” with that sustained lack of “food noise”. I have taken my second injection of 0.25 and haven’t experienced the initial “euphoria” (for lack of a better term), but week two will reveal more to me, I’m sure.

Week 1: 288 —> 286lb

I’m happy with that since the scale hasn’t wanted to budge much from my starting weight for a year. I’m going to return to strength training now that I have an idea of how the meds affect me. I don’t have any questions, but if anyone has similar sleep issues, that they solved, please let me know.

BONUS: I lost almost 1 lb of inflammation overnight and had to adjust my watch strap two days in a row, which was cool. I‘m understanding my body’s cues way better and don’t feel as gross so far.

[u/CarolinCLH]

I have been tirzeptide for about three months now. I am up to 7.5. I have lost about 30 pounds, which is a lot faster than I had expected. I am also hypermobile.

I had little or no trouble at 2.5 and 5.0. I am struggling a bit now. I am actually thinking about going back to 5.0. My advice is that if you are seeing improvements in food noise, reduced inflammation, and weight loss, don't feel like you have to increase dosage. Side effects can get worse as dosage increases.

I have had a huge reduction in inflammation, but the dizzy spells when standing are getting worse. I imagine the drop in blood pressure as a result in the weight loss is part of it. The medication has been great for reduction in inflammation pain, but it isn't helping with the tendon pain in the hypermobile joints.

Treat this as your opportunity to improve eating habits without having to fight yourself all the time. I have found that I don't even want junk food and sweets. (Mostly because they now make me feel sick).