Bit of a mind boggler - advice?
29, F, 5ft3, 83kg, long term vegetarian, on medical cannabis.
(First and foremost, medical cannabis is legal in the UK, and has been since 2018, CBD is not the same thing. I'm sick of explaining this to Dr's and they put "on CBD". I have THC and CBD, yes THC is legal if prescribed. No it does not get me "high", yes the difference matters as thc has more drug interactions than cbd.)
I have Fibromyalgia, asthma, hypermobility, Adhd, Autism. The autism doesn't really cause a medical issue, the adhd causes bad mood swings, irritability, hyperactivity and lots of memory issues - especially before my cycle. Ive also been diagnosed as hypermobile, and need to see a rheumatologist to make sure I don't have a connective tissue disorder (GP suggested could be EDS). Family history of SLE, but my ANA is always normal. My mums Ana was negative until was until her lupus made her go deaf. So they're not ruling that out either, but the bloods aren't showing it. Family history or cardiac issues, cardiomyapthy, bypasses. I've been cleared by cardiology with just a small murmur, not worried about it.
Here's the odd bit, recently, I went to the Dr's about going through the pain clinic to help with my fibromyalgia, I struggle with pain and fatigue pretty badly - I haven't been able to work for 2 years since the bad flare that got me diagnosed. But the worst part is the cognitive issues, I can't remember things, I feel dazed allot, dissociated. For my age, it's awful. The medical cannabis has really helped the cognitive side of things, and ironically it makes my memory better and my head clearer. However as it's rarely given on the NHS, its costing me £300-£400 a month through private specialists. I talked to the Dr's about this, and we decided to try pregabalin (I've tried all the ssris, they don't work or do anything but make me feel anxious, pack weight on, and citalopram made me wanna kill myself, and I think suicide is bullshit. This is why I didn't start on amytryptline and don't want to try duloxetine, I don't want anything that says it deals with "anxiety" because they make me feel awful)
On the pregabalin, at first I had issues with extreme dryness in my throat, then reduced breathing, a tight feeling in my throat like a toddler shoved a fist down my windpipe, needing to use asthma steroid inhaler for relief too often, a feeling of dread but no brain anxiety, and at one point a slightly blue tongue. Obviously not good, I rang and was told to discontinue use immediately as it was a allergic reaction, and it's taken over a week to calm down. I ended up in A&E two days after stopping pregabalin, bleeding badly out of my backside. I lost allot of blood, (about half a bedpan) they were talking about a transfusion, but luckily my hemoglobin was stable enough not to need it. Even since then, I've felt so anxious (but body/chemical, not mental. I know the difference, I've had allot of therapy as I was originally told I "just had anxiety" for 10 years, when I had allot of other things wrong they were just fobbing me off as a dramatic woman, as they do). It's worse after eating, but immediately after eating. Antihistamines help, as does gavascon to help with the bad acid I've been getting since.
Bloods: my bloods usually come back normal except for high white cell count, high mean platelet volume, borderline high C3 but still within normal range. I've had a vitamin D deficiency a few times (even though I take daily supplements) and a selenium deficiency. IgA can be high sometimes, IgE was until I removed food intolerances. No evidence of chrons they can see.
Other good to knows: I have irregular periods, always have had. They're painful, sometimes I miss a month, sometimes I bleed for 2 days, stop, then bleed again a day or two later. I very occasionally get spotting, usually around ovulation. Since starting on pregabalin, I've been spotting everyday. Not due on my period (only know by where my cervix is, as it's so irregular). I've had bloods to check my hormones and was told they're fine. Smear tests come back clear. Never had kids, don't want them. I've always had some dryness, sex was usually uncomfortable (and I sleep with women so, fingers are less aggressive than a penis ramming into you), but I'd always be in pain the next day. Regardless of how gentle my partner was, how much lubricant used etc.
I have a history of chest infections, pneumonia and I've had sepsis once or twice with the pneumonia.
Ive had bowel bleeds before, but a full colonoscopy showed clear. They're booking another one, sigmoidoscopy and a internal vaginal ultrasound to find out where this bleed has come from.
Most recently, I've had (by an actual Dr not self diagnosed from social media) EDS, MCAS suggested or SLE, potential arthritis (non autoimmune), someone thought gout at one point but since I don't drink or eat meat that was quickly put under the rug.
Also random, but I don't react well to anistetic - had a really bad reaction to dental work last year and an infection for 3 or 4 months as no one would take responsibility and treat me. I wake up swinging if I need putting under for a surgical procedure, I don't know why. Ive been like it since I was a kid. They had to use adult doses to knock me out from about 8 or 9.
At this point, I'm scared to do anything. I'm supposed to be starting adhd meds soon as I've just got the diagnosis after 4 years on the waiting list, and I'm petrified it's gonna do what the pregabalin did.
If I came to you, with all this, what would you think? What would your steps be? I'd rather not fork out £300 per appointment to see a private Dr if I don't have to, but unfortunately the good Dr I've been working with is a locum, and when he goes I go back to the guy that didn't even know what fibromyalgia was 20 minutes before he diagnosed me with it.
TIA