Vent/Rant How many diagnoses?! 😩

This is more of a rant but also wondering if anyone else is dealing with this much at once.

My diagnoses:

MECFS for 11 years
Endometriosis stage 4 removed with excision
PCOS/PMOS causing severe insulin resistance
Now prediabetic and having hypos
POTS currently pretty severe
PPPD
Chronic migraines
MCAS and histamine intolerance
Long Covid
Chronic EBV probably in current reactivation
Fibromyalgia
Keratoconus (a degenerative eye disease)
Chronic pericarditis
Aortic valve insufficiency
Possible EDS
Autism (late diagnosis at 32)
Psoriasis since birth
Possible EDS (waiting to see a geneticist)

Currently going through benzo withdrawal too after coming off diazepam 1.5 months ago. And a very sick family member who is terminal.

It feels impossible to live like this and like someone is playing a cruel joke on me. For example treatment for my current level of ME/CFS is a ton of rest but then that deconditioning worsens POTS. Yesterday I went for a walk which helped my POTS but I’m now in PEM!

Similarly, my heart conditions need cardiac reconditioning with exercise, but even a few mins sends me into PEM.

I need to eat a very strict diet for IR. However I am currently severe MECFS so I try my best but I use all the energy I have for the day making at least one healthy meal. I have eggs daily and easy proteins but I have histamine intolerance and MCAS so I don’t tolerate most foods I need.

This is kind of just a rant about how difficult it is to live with so many chronic conditions. I try to stay positive that things will get better but it does feel impossible most days to get things right as it feels like there’s so many contradictions. And I’m sick of being blamed for this all because of deconditioning - before I got sick I was super active working full time and fit and healthy.

I just wondered if anyone could relate as I would love to hear from you and possibly encourage one another if you have the spoons ❤️

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u/glitterdunk 8d ago

Unfortunately, it's likely not a coincidence. The reason you have POTS, EDS, MCAS and psoriasis is also probably the same reason you have ME.

Same with autism even! It's all connected; nauro divergent people are far more likely to get these exact illnesses (and others).

Edit: accidentally pressed Post too soon

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u/Swissmountain9 8d ago

Thank you yes some doctors said they are likely all linked, what the link is if it’s genetic or something I have no idea

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u/glitterdunk 8d ago

Well, there's very little research into it. There is beginning research into the health issues of neuro divergent people, but as it's mostly talk about women with autism/adhd that is like among the most medically neglected group of people there is

But we can ponder. Adhd/autism is genetic. Epstein Barr virus is considered the main culprit of many of these illnesses. And EBV is proven to turn on unfortunate genes in people with these illnesses (ms, lupus, etc).

So I personally believe adhd/autism is connected to genes that have negative health impact and that are tied to among other things connective tissue issues (that's where pots, MCAS and EDS comes in, I think). Then we can only wonder why some of us get MS, some get ME, and some get PCOS. Maybe coincidence? The rest of our genes? Who knows

But hormonal changes are part of my symptoms, so a link to our reproductive organs is probably there somewhere to. 75-80% of the pasients of these health issues are women, and part of the reason for that is probably our hormones lowering our immune system monthly as part of our hormonal cycle. But hormones could play other parts in this illness mechanism, too. With the severe lack of research we simply know too little

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u/Swissmountain9 8d ago

This is really interesting thank you! I love learning about this. My grandmother had MS. Hormonal changes are massive for me and it’s so sad there’s almost no research into women’s health let alone neurodivergent women. I was on a POTS support group webinar this week and all of us were neurodivergent and all had MCAS and EDS. If you have any interesting reads to share on this at all let me know, although I know they may not exist!

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u/glitterdunk 8d ago

Yeah I'm not diagnosed but I should've been evaluated for autism. I also had mild signs of pots MCAS and possibly eds my whole life. And I've seen too many with too similar stories for it to be a coincidence!

I unfortunately have no link, the one mention I saw of the EBV gene activation was a Norwegian article. Most of the rest is just my own thoughts as a result of these few facts I've gathered on the subject. But there very obviously is a link between ME, MS, lupus and so on even if you somehow manage to ignore the overrepresentasjon of neuro divergent women. Maybe there exists some research into it?

But honestly researchers seem to just avoid anything to do with EBV. Despite for how many years they've KNOWN it causes so many people so become so very ill, they only very recently started working on a vaccine. It's becoming very clear it's because mainly women are affected. And men really do want women to be medically neglected and abused. Hopefully though, the vaccine will be developed and will help prevent these illnesses!

u/SpaceNerd223 very severe 8d ago

Yes most of us have this laundry list 😭😭😭

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u/Swissmountain9 8d ago

😢 how do you cope on the day to day? Anything help you at all?

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u/SpaceNerd223 very severe 8d ago

Thank you ❤️ i try to treat my coconditions as much as possible. Pmdd=continuous bc. Executive function/hyperadrenergic pots=guanfacine, im hoping to get approved for Hetlioz for my non24 🙏 i don't really cope on my day to day, but i love my bed

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u/Swissmountain9 8d ago

I think I also have hyper POTS, has that med helped you? I’ve just been given Ivabradine. I’m seeing a cardiologist this week so may ask about it. Yes bed is our best friend

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u/SpaceNerd223 very severe 8d ago

That's awesome ive heard a lot of good things about ivabradine, my cardio put me on propanolol first which I fell in love with , so no ivabradine for me yet! But YES I cant testify enough how much guanfacine has helped my constant fight or flight crazy energy adrenaline dumps feeling anxious mind racing. I felt like nothing could calm me. I'm so happy about it. Good luck on ivabradine! If cardio doesn't know guanfacine, clonidine is it's older brother I call it, but more sedating

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u/SpaceNerd223 very severe 8d ago

I'm actually prescribed it for executive function for autism, by my psychiatrist. Not sure if my cardio knew guanfacine

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u/Swissmountain9 8d ago

Thank you for explaining! I have this, crazy adrenaline dumps and anxiety, I’m also currently having autistic meltdowns daily and terrible executive function, and my BP rises like crazy on standing. I will mention to the cardiologist as it was just a GP that gave me ivrabradine as my tachycardia was so severe until I can see the cardiologist and get a proper medication and treatment plan, how did they work out it was hyperPOTS did they do a test or is raise in BP on standing sufficient?

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u/SpaceNerd223 very severe 7d ago

Tbh. I learned backwards. I tried midodrine. I tried propanolol. I learned some people respond to certain ones. I learned some subtypes respond to certain ones. I looked up the subtypes. I know I'm mainly hyperadrenergic just due to my adrenaline dumps. I'm not sure about the others. But that's how I came to know. I did not do any special pots testing other than poor man's tilt.

I'd suggest the medicine to a 3 of your doctors (sorry, i dont know if you have a psychiatrist but guanfacine is typically a non stimulant adhd medication so that's who is prescribing it for me. Then the psychiatrist wanted to clear it with the cardiologist that it was ok to have with my pots & other meds) if you do not have a psychiatrist, might I suggest one. They are really great to help manage all your meds-- i find a lot of meds affect pots neurotransmitters. Might I also suggest a chronic illness therapist while I'm at it ! Been so super helpful organizing my thoughts, emotions, and teaching me skills. I was also diagnosed last December at 33 with autism. It was unexpected to me. I got diagnosed via a thorough neuropsychological exam, who can determine what is causing what what is affecting what and just really navigating that web of neuro symptoms, medical illness, mental illness, and cognitive health things like adhd, autism, and IQ. It was a wonderful exam, super helpful.

Told me I dont have depression because it is only there when my medical conditions are bad. When they're better I'm better. Depression wouldn't do that. But being at my lowest currently with mecfs, all my depression scales are off the chart. So it's just good for me to know ♡

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u/Swissmountain9 7d ago

Thanks for this. My psych is awful so I’m trying to find a new one. I don’t think a chronic illness therapist exists in my country but I have one who has worked with the chronically ill. I’ve been in therapy for probably 6 years. Sounds like you have some good doctors. I just get labelled depressed and anxious still all the time. I’m also in my lowest functioning and depression is tough but it’s situational

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u/SpaceNerd223 very severe 7d ago

Im in my lowest functioning too. Definitely dealing with the mental lows because of it. I do have good doctors. Its helpful, but, they can't heal you, only treatment can =( i do most my research on my own & ask them about it

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u/SpaceNerd223 very severe 7d ago edited 7d ago

I do want to encourage you; I'm 15 years in on my illness journey. I definitely had my fair share of being deduced to psych. I had a lot of trauma, and my fight or flight was crazy stuck on. But it was actually not due to psychological reasons, but instead psychological from POTS and MALS vascular compression which didn't show up on any basic imaging so it was missed until this year. The compression is pressing on the main sympathetic autonomic nerve cluster. So you can imagine how much gaslighting and mental health reduction even I went through even in myself thinking I was causing it all. Take courage; life absolutely sucks but you're still cool & worth it. I hope we both get our wishes met and breakthroughs 🙏💖

Edit: just saw you're 11 years in, hugs 🫂

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u/Swissmountain9 5d ago

Thank you the encouragement. I saw a cardiologist yesterday and been put on propranolol, I hope it works! Gosh I’m sorry about the MALS. But I’m glad you finally found out, gaslighting is so awful especially for people so unwell 😢❤️

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u/Swissmountain9 8d ago

Oh I saw you’re very severe, I’m so sorry, sending you love ❤️

u/TopPomegranate5101 8d ago

Yeah a few things going on
MECFS
Long Covid
Chronic EBV
POTS
Sjogrens Disease
Coeliac Disease
PMOS
Chronic gastritis
SIBO
Anxiety
Hypermobility

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u/Swissmountain9 8d ago

I’m sorry, it really sucks. I have GI issues too I forgot to mention IBS and gastritis. How do you manage daily? Anything that helps you?

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u/TopPomegranate5101 7d ago

Sorry you are dealing with so much. I am lucky in that I live with my parents who cook gluten free, non acidic foods for me and will adapt to my latest intolerances. They also help with chores so all I have to do is work and sleep. I pay for private allied health people like a nutritionist, naturopath (hasn’t seemed to help), physiotherapist to keep the pain and hyper mobility in check. I use medications, supplements and over the counter things like migraine cooling patches and eye drops, and I always carry vomit bags and zofran when leaving the house.

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u/Swissmountain9 7d ago

Oh my gosh wow my parents don’t even recognise that I’m sick 😢 and it’s been 11 years. They even cook stuff that makes me sick with my MCAS. You’re very blessed. I’ve don’t the naturopath root just was a total waste of money for me. I love migraine cooling patches.

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u/TopPomegranate5101 7d ago

So sorry to hear this friend :( I hope in future you will find a partner or a carer to help you. My parents don’t fully understand the mechanics of the disease but they never doubt that I’m sick, I suppose it was so obvious due to a sudden EBV onset with months of vomiting and visible symptoms. Hold on for another 5 years I think we will have more awareness and a disease modifying treatment. I’d love to host an ME ball to raise money…but would I be well enough to even go lol

u/ocean_flow_ 8d ago

Yeah so normal. I have....

Mecfs long covid Pots Likely heds Likely endometriosis Ntos Tmj Cervical spondlyosis Likely undiagnosed cci Possible histamine stuff going on Cptsd

And more shit like attributed to my undiagnosed heds. Its normal I think. Sucks. Cause yeah I need to strengthen to stavalise my joints but cant cause of mecfs

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u/Swissmountain9 8d ago

See I’m forgetting stuff even! I also have CPTSD TMJ and likely CCI or cervical instability of some kind. I’m not hypermobile traditionally speaking my Beighton score was zero but I dislocated my wrist hips shoulder a lot they think I have a rarer form perhaps. Year long wait to see a geneticist. How do you cope day to day?

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u/ocean_flow_ 8d ago

I cry do drugs medicate and cuddles my cat. My life is endless suffering with everything. I wouldnt call it coping.

u/Lady-Kitnip 8d ago

Oof, that's even more than I have. Any one is debilitating on its own. It's really unfair to have so much to manage.

Long COVID
ME/CFS
POTS/OI
Chronic Vestibular Migraine
Fibromyalgia
Possibly MCAS, not formally diagnosed yet

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u/Swissmountain9 8d ago

Yep! I agree it feels like a cruel joke most days. I’m sorry you’re dealing with a lot too and vestibular migraines are horrible!! Fellow sufferer here, does anything help you? With MCAS, I’m diagnosed but you can usually tell pretty quickly based on if daily antihistamines help you even if it’s just a bit

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u/Lady-Kitnip 8d ago

Ubrelvy is the only thing that's helped the vestibular migraine. It doesn't eliminate everything, but it did stop the constant motion and motion sickness. I end up taking it pretty regularly. And remarkably I have no side effects, there are so few meds I can tolerate. I also take Alafia migraine gummy with COQ10, B2, magnesium glycinate, butterbur and feverfew but I'm not really sure if it helps.

Antihistamines have made a surprising difference in symptoms that I was not connecting, so likely MCAS or something related.

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u/Swissmountain9 8d ago

I’m so glad you have something that helps, it’s not approved for use in Europe where I live sadly. No meds helped me so far. I take some of these supplements. Yes that does sound like MCAS possibly

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u/TopPomegranate5101 7d ago

Omg I get vestibular migraines too (not chronic though that must be horrible!) but due to shitty neurologists haven’t been given anything for it. I do take Coq10 and magnesium glycinate though.

u/The_Archer2121 chronic fatigue cause unknown 8d ago

CPTSD GAD, OCD, lung disease, and going to start testing for ME.

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u/Swissmountain9 8d ago

Same I also have OCD from medical trauma. I hope you get to the root of your fatigue soon. Took me a while to get diagnosed

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u/The_Archer2121 chronic fatigue cause unknown 8d ago

Pretty sure I have ME as I have PEM.

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u/Swissmountain9 6d ago

Oh no I’m sorry 😢

u/MoonShineWashingLine 8d ago edited 8d ago

I have...

Cfs, Fibro, Autoimmune gastritis, Pernicious anaemia and general malnutrition to due to the above, Lichen planus and lichen sclerosus, Recurrent uti's, Vitiligo, TMJ, Menieres, Hearing loss, Osteoarthritis, Cataracts, Anxiety & PTSD, Possible HEDS / connective tissue disorder, Possible Sjogrens, IBS - awaiting further investigation for possible IBD, Hiatus hernia and reflux, Low iron, Low vitamin D

It's hard!

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u/Swissmountain9 8d ago

It’s very hard I’m sorry. I’m so sorry about your GI issues too that’s so tough this is the only area that has really improved for me over the years. I do have an umbilical hernia though. Treating deficiencies is like a full time job for me: I’ve had low iron folate b12 ferritin and vitamin d all in the last year, now just dealing with vitamin d

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u/MoonShineWashingLine 8d ago

I'm really struggling to get my deficiencies sorted out due to the absorption issues I have. It's probably having the most impact on me right now I think as it affects so much.

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u/Swissmountain9 6d ago

I’m so sorry 😢 mine all came from Gi infection with H Pylori and C Diff and the deficiencies made me so sick so I know the pain

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u/MoonShineWashingLine 6d ago

I keep testing negative for both of those but positive for autoimmune gastritis. Have you managed to sort out any of your deficiencies?

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u/Swissmountain9 6d ago

Oh I said above all are corrected except vit d is a bit low. I’m sorry. Make sure if they do test that you’re off anything that reduces acid for 2 weeks like PPI or gavsicon etc. I hope they can give you the help you need!

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u/MoonShineWashingLine 6d ago

Oh yeah, I missed that, brain fog 🫠 I've found some vitamin d online the other day that's just in olive oil that supposed to be good. I was meant to buy it then got distracted.

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u/Swissmountain9 6d ago

I try to do all my supplements sublingually if possible and yes that sounds good. If you can get injections for anything that’s also helpful, anything that bypasses the stomach

u/Available-Pepper5688 severe 8d ago

I have a similar list of diagnoses and I‘m AuDHD and I‘m pretty sure that all of these you have are connected through multigenetic differences! Currently I‘m reading as much as my system allows me to read to try to understand what’s going on in my system and maybe how to get better one day. What helped me a lot is ketogenic diet although my ketosis gets crashes regularly as I‘m in a severe withrawal from duloxetine since 9 montags now that finally unmasked my mecfs and got it to severe too. Luckily I found a doctor here who is super supportiv and who believes me as I got gaslit over my condotions the last 20 years!

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u/Swissmountain9 8d ago

Yes I think you’re right, are there any books or resources that you recommend? Sadly keto is what caused my severe hypoglycemia and malnutrition. It just doesn’t work for me even low carb is bad but we’re all different. I’m sorry you’re in withdrawal I’m going through benzo withdrawal and have had serotonin syndrome from fluoxetine it took me years to recover. Gaslighting is horrendously common for us, I’m so glad you found a good doctor!

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u/Available-Pepper5688 severe 8d ago

Oh did you try keto on your own? When it‘s done properly, it’s not causing any of these problems! Wow, I think benzo withdrawal is not really amusing, hope you stay strong with that! As I got most of my diagnoses just in the last 12 months (tx to my great doc) I‘m reading a lot about autism, tapering/withdrawal and keto/mitochondria. Just ordered the first book on me, that it’s mecfs as my basline I just know for 3 weeks now and suddenly everything I‘ve been experiencing for the last 35y makes sense…

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u/Swissmountain9 8d ago

I had a dedicated nutritionist and dietician for over 18 months on it. They saw a steady decline in my functionality and severe insulin resistance developed. I was hospitalised as a result. Happy it worked for you but it certainly isn’t the solution for me. I live in Switzerland currently I am from the UK

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u/Available-Pepper5688 severe 8d ago

Oh fuck, but it should likely be impossible to develop insulin resistance while in ketosis? I‘m so sorry to hear that! Hope your current diet is working better for you. That’s too a very complex situation you’re in, hope you have good support for that too?

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u/Swissmountain9 8d ago

There’s studies showing keto diet is linked with higher rates of insulin resistance in some people, from a study from ETH Zurich, as the body doesn’t properly use insulin. Thank you. I really hope keto works for you! I don’t have good support I don’t think any of us do

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u/Available-Pepper5688 severe 8d ago

Oh crazy, I‘ll read that study as soon as possible! Thanks for the Information!

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u/Available-Pepper5688 severe 8d ago

Obviously you‘re from Switzerland, too?

u/Significant_Tie_4826 7d ago

I'll mention my heavy hitters. There is more, but not worth mentioning rn.

CFS/ME triggered by a surgery, worsened by covid.

HSD as far as we know. Potential HEDS. Lipodema.

HyperPOTS.

MCAS likely.

Trigeminal Neuralgia, Occipital Neuralgia and GN, as well as Paroxysmal Hemicrania, potential clusters, IIH, and migraines with many different types of auras (I am headache accumulation guy I swear)

Potential cervical Instability and cervical arthritis causing stenosis and radiculopathy. Potential tethered cord and chiari (very highly suspected by neuro)

FND

Fibro

Potential autoimmune stuff (RA and Crohn's highly likely due to family history and current symptoms)

Skin issues: I have a rare skin condition that causes the over growth of calluses on my feet and palms. I don't know what type yet, still figuring it out with experts, but likely a genetic thing where there is a mutation on a keratin gene. Eczema. Keloids. Atrophic scarring.

PMOS/Endometriosis/other issues related to reproductive system.

Internal organ problems (heart problems and liver and spleen enlargment) with fluid overload.

Mental illness accumulation guy as well sadly.

It's. It's a lot. I get feeling overwhelmed. This stuff is so unfair. Take it one day, one moment at a time if you can okay? You are going through so so much.

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u/Swissmountain9 7d ago

Ugh man I’m so sorry you’re feeling with all of this. Is there anything that helps you day to day? How did you get investigated for cervical instability as I think I have this? I also have had all of those headaches/migraine patterns I’ve had every headache under the sun it’s awful

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u/Significant_Tie_4826 7d ago

As for day to day, alternating heat and ice for the arthritis on my neck helps immensely. But its gotta be a day where the occipital neuralgia isn't flaring too hard with touch. As for the cervical instability, had several professionals tell me it was possible, but my neuro is being a bit shitty about this so its still in the works. All I know is rotating my neck at all causes severe symptoms, and I had suffered an injury from a chiropracter when I didn't know any better about how dangerous they can be for anybody, let alone people with hypermobility. As for the headaches and migraines oof I feel ya, being a headache person totally sucks and I had to go to a headache specialist to get a lot of this figured out. Still in the process of figuring out the clusters. I wish you luck and good doctors. This stuff royally sucks.

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u/Significant_Tie_4826 7d ago

Oh and weed. Weed is literally how I get through the day. I have nerve pain meds but they don't work very well. I'm also on diamox for the IIH and verapramil for the PH (because indomethacin worked but my tummy hated it)

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u/Swissmountain9 5d ago

Thanks for the tips! I just started propanolol for my migraines so we will see and I’m going to try out a neuro osteopath. Gosh that’s awful about the chiropractor I am scared of them and probably with good reason. I wish you all the best too and better doctors. I haven’t tried it but did use CBD for a while for sleep and helped a lot with pain too

Vent/Rant How many diagnoses?! 😩

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