u/kippy_mcgee

I’m really confused about what’s happening and hoping someone has experienced something similar.

I recently found out my vitamin D was low (29 nmol/L). I’ve been having pretty horrible aching/burning leg and knee pain, muscle cramps, fatigue, etc.

The fatigue especially has been horrible but the leg pain is virtually unbearable.

My doctor has put me on 100,000 IU vitamin D once a month to correct the deficiency.

Initially, when I had my blood tests done, I was so fatigued that I could barely get out of bed. I’ve also noticed in the past that when my vitamin D has been in the lower side (40-50), my knees and joints can become quite achey painful, particularly during sleep.

I took my first 100,000 IU vitamin D megadose, and a few days later I ended up in hospital with severe leg and hand pain. After about two weeks, the pain seemed to gradually subside.

About three weeks later, I took another 100,000 IU dose. A few days afterward, my legs started hurting again, although it was relatively mild and only lasted a day or so.

Now, another month later, I started noticing my legs hurting again. I assumed this might mean my vitamin D was dropping again and that I needed another dose, so I took another 100,000 IU megadose.

Four days later, I’m now in absolutely horrible leg and hand pain again. It's been a week of this pain and I'm losing my mind.
I’m completely freaking confused about what’s going on and what to do. I saw the GP today and all he had to say was 'Low Vitamin D shouldn't be making you feel like this'. Then slapped me with some low dose opioids that I don't even want..🤦🏻‍♀️

I’m wondering whether the pain could actually be from the vitamin D deficiency itself, or whether the high-dose vitamin D is somehow triggering/contributing to the pain. The timing is making me question everything because the pattern seems to keep repeating after the megadose.

For additional context, I also seem to be very sensitive to magnesium glycinate. When I tried it last year, it actually seemed to have the opposite effect of what I expected, it made my bones/joints hurt.

I’m also somehow very low in vitamin C, despite eating plenty of fruit and vegetables. That honestly makes no sense to me and has made me wonder whether there could be some kind of absorption issue or something else going on. I’m currently looking into that with my GI doctor as well but he doesn't think I have absorption issues as I'm not having symptoms like losing weight.

At this point I’m just trying to understand whether I’m dealing with:

symptoms from the deficiencies themselves

some kind of reaction to the large vitamin D doses

an issue with calcium/magnesium/phosphate/PTH or something similar

or something completely unrelated

Has anyone experienced anything like this with vitamin D loading doses, particularly 100,000 IU doses?

I’d really appreciate hearing from people who have had similar symptoms because I’m genuinely so confused about what is happening.

Have you experienced:
Significant muscle/joint/leg pain with vitamin D around 29 nmol/L?

Symptoms getting worse after starting a 100,000 IU monthly vitamin D loading regimen?

Muscle cramps or burning/aching sensations while correcting a significant vitamin D deficiency?

Similar issues with being deficient in multiple vitamins despite having a reasonably good diet?

Similar issues with magnesium glycinate?

I’m trying to work out whether I’m experiencing the effects of the deficiency, something related to correcting it, or whether there’s another underlying issue causing both the deficiencies and the pain.

Would really appreciate hearing from anyone who has been in a similar situation because I’m honestly so confused right now.

Note for mods: To be clear I am not looking for diagnosis, I am also actively working with my medical team, I am only asking if people have also experienced this with our condition. I have been diagnosed with dysautonomia already.

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Has anyone else experienced what feels like extreme sensitivity or completely atypical reactions to medications and even supplements?

It feels like my body often reacts in ways that are the complete opposite of what's expected, or I get unusual side effects from tiny doses.

Some examples:

• ⁠Clonidine (25–75 mcg): Was meant to be calming and sedating, leave me clear headed but instead of making me sleepy, it made me wide-wake after a few hours feeling extremely mentally awake. Not anxious exactly, but very wired mentally, unable to get back to sleep, and almost like my brain refused to switch off. I also had severe widespread body aches (which seems to be a pattern on any drug associated with calming me down)

• ⁠Low Dose Naltrexone (LDN): Instead of gradually helping, after only a few days I started waking with what felt like adrenaline dumps, I felt like a wired zombie, utterly exhausted, alert and in pain all over, nerve and muscular.

• ⁠Nortriptyline & Amitriptyline: Instead of helping with nerve pain, they significantly amplified it. They also left me feeling extremely anxious, foggy, dazed, and disconnected.

• ⁠Magnesium glycinate: Rather than helping me relax, it made my joints and body much more painful, even gave me elbow joint pain I've never fricken had.

• ⁠Brand changes: Even switching to a different generic or brand of the same medication seems to noticeably affect me. I've had this happen with medications and even some supplements, which makes me feel like I'm losing my mind because everyone says they should be identical.

This seems to happen across prescription medications, vitamins, and supplements rather than just one drug. Even on TINY doses and it is virtually immediate - occurs when just starting out and stops when I stop the drug.

I'm wondering if anyone can relate to me?
Especially if you get paradoxical reactions.

It's so disheartening because I'm chasing after relief with my doctor and all the new meds she tries with me have this impact. Annoying as heckkkk.

Hi everyone,
I’m not diagnosed with endometriosis (currently trying to work out what’s going on), but I’m wondering if anyone here experiences something similar.
I’ve always had aching legs around my period ever since I was a teenager, so I never thought much of it. However, over the past several months it’s become significantly worse and now feels like much more than just “period leg pain.” The pain also extends to my feet, shoulders, elbows and sometimes hands. It even landed me in hospital last month.

About 2–3 days before my period, I develop deep aching pain throughout my body. It’s not pelvic pain or cramps it feels like my whole body becomes inflamed. My knees, feet, legs and muscles all ache, almost like I’ve come down with the flu. Then my period starts, the aches usually linger through the first day to three days in before gradually easing.

Alongside this, my hidradenitis suppurativa (HS) almost always flares at exactly the same time, which makes me wonder if it’s all being driven by the hormonal and inflammatory changes before menstruation.

I’ve been reading about prostaglandins and how they increase around menstruation, as well as the drop in estrogen and progesterone just before a period. I’m wondering whether those hormonal changes could be causing widespread inflammation or increasing pain sensitivity, rather than it being limited to uterine cramps.

I’m curious if anyone here experiences anything similar:

Have you always had “period leg pain” that later became much more severe or widespread?

Do you get muscle or joint pain before your period, especially in your knees, feet or legs?

Does it feel like a flu-like, inflammatory ache rather than just pelvic pain?

Does it start before your period and then improve once your period begins?
If you have endometriosis or adenomyosis, did treating it improve the body aches too?

Has hormonal treatment (continuous pill, Yaz, Depo, Mirena, etc.) helped with these symptoms?

I’d really appreciate hearing your experiences, because I’m trying to figure out whether this is something other people with hormone-related conditions have gone through or whether I should be looking in a different direction. ❤️

Hi everyone,

I’m hoping to find other people here who have hidradenitis suppurativa (HS) because I’ve noticed a really specific pattern around my menstrual cycle, and I’m wondering if anyone else experiences the same thing.

I’ve started noticing a really consistent pattern every month. About 2–3 days before my period, my HS almost always flares. At the same time, I develop** **deep aching pain throughout my body especially in my knees, feet, legs and muscles. It almost feels like I’ve come down with the flu or like my whole body is inflamed.

Then my period starts, the aches usually linger through the first day or 2, and both the pain and my HS gradually settle.

I’ve been reading about prostaglandins and how they increase around menstruation and can contribute to pain and inflammation. It also seems like the drop in estrogen and progesterone before a period can trigger inflammatory conditions in some people.

I’m wondering if those hormonal changes are somehow triggering both my HS flare and the widespread body aches.

So I want to know:

Does your HS flare just before your period?

Do you also get widespread muscle or joint aches (knees, feet, legs, etc.), or is it just your skin?

Has a doctor ever explained whether prostaglandins or hormonal changes could be contributing?

Did anything help? (Continuous birth control, Yaz, Depo, Mirena, Slynd, biologics, NSAIDs, supplements like omega-3, etc.)

I’m trying to work out whether suppressing my cycle might help not only my HS, but also these awful body aches.

I’d really appreciate hearing your experiences. I feel like I can’t be the only one! ❤️

About 2–3 days before my period, my HS almost always flares. Around the same time, I get deep aching pain throughout my body especially in my knees, feet, legs and muscles. I'm curious if birth control may help and if anyone has any experience.

It almost feels like I’ve got the flu or like my whole body is inflamed.
Once my period starts, the aches usually linger for the first day and then gradually improve, along with my HS.

I’ve been reading about prostaglandins, which increase around menstruation and can cause pain and inflammation, and I’m wondering if they could be amplifying the inflammation from HS or if the hormonal changes themselves are triggering both. I also have chronically elevated CRP/ESR, so it makes me wonder if my body is just extra sensitive to these hormonal shifts.

I’m curious if anyone else has experienced something similar.

Do your HS flares line up with your menstrual cycle?

Do you get whole-body muscle or joint aches (knees, feet, legs, etc.) before or during your period?

Does it feel like a “flu-like” inflammatory ache rather than just period cramps?

Has anyone’s dermatologist or rheumatologist explained why this happens?

Did anything help? (Yaz, Slynd, Depo, Mirena, continuous pill, biologics, NSAIDs, supplements like omega-3, etc.)

I’m especially interested in hearing from anyone whose HS is clearly hormone-related, because I’m trying to work out whether suppressing my cycle might help both my skin and these awful body aches.

Hi everyone,
I’m hoping someone has experienced something similar because I’m not sure if this is normal or if I should be getting my machine checked.

I recently switched to ResMed AirSense 10 AutoSet from a Phillips DreamStation, and ever since the switch I feel like my sleep quality has declined. I can’t put my finger on exactly why, but I wake feeling less rested than I did on my previous machine despite similar AHI reading.

I've noticed the machine ocilates the air weirdly even when not on me, the air pulses. I've heard of the FOT feature but it seems to do it a lot more often than it's meant to? This morning I woke up and it felt like my breathing was staggered against the pulsing flow, rather than being a smooth, constant stream, I was laying awake trying to figure it out and it made me feel breathless, like I was exhaling with brief pauses.

What confused me is that I can even feel a similar pulsing sensation in the airflow when the mask isn’t on my face, which made me wonder if it’s coming from the blower itself.

I started reading more about ResMed’s Forced Oscillation Technique (FOT), but from what I understand that’s only meant to happen briefly when the machine is checking for an apnea. In my case, I was awake and breathing normally, and I could still feel the pulsing for around 5 minutes before I got out of bed.

So I’m wondering:
Is this actually normal behaviour for an AirSense 10?

Has anyone had one AirSense 10 feel noticeably different from another?

Has anyone changed machines because of this?

I’d really appreciate any advice because it’s starting to make me anxious, my sleep has been worse on this machine and I'm feeling a lot like I did before sleep therapy despite it displaying 'perfect' results 🤦🏻‍♀️

Hi everyone,

I’m not looking for a diagnosis, but I’m curious whether this sounds familiar to anyone who ended up being diagnosed with fibromyalgia. The last week has been absolute hell and I've been sent home from the hospital 3 times now, waiting to be seen by a neuro as they don't know what to do with my symptoms.

For context, the last 3 years have been a bit of a health rollercoaster. It started with severe neck pain and migraines, which eventually led to a sleep apnoea diagnosis. I also have HS (Hidradenitis Suppurativa), chronic iron deficiency anaemia, vitamin D deficiency, heavy periods/PMDD, and persistently elevated inflammatory markers that nobody has really been able to explain.

I’ve spent years feeling various pains and unwell, but whatever is happening now feels like a MASSIVE step up from my usual baseline. It's literally been unbearable and I don't even know what to do with myself I've been crying a lot and pacing and trying to sleep with little comfort. I'm not even someone who's usually anxious but these symptoms have me feeling absolutely horrific.

For the last 5-6 weeks I’ve been feeling progressively worse. It started with waking up one night almost in a nocturnal like panic attack - I was trembling and felt adrenaline rush. It came from no where. Never in my life have I had this happen. Since then extreme fatigue, dizziness, a constant swaying/rocking sensation, brain fog, feeling disconnected from the world, worsening tinnitus, weakness, and just generally feeling like a zombie. I can barely leave bed.

Over the last 4 days things escalated dramatically into what feels like a full-body pain flare. My body burns and aches so badly it wakes me up from sleep. It's hard to pinpoint where exactly this is all coming from though of that even makes sense.. my symptoms are bouncing around my body. At the moment my head symptoms are the worst, I feel so odd behind my eyes just disconnected and sore and like twitching and trembly.

My legs bubble and burn constantly. My knees, ankles, hands, back and even my teeth seem to hurt. I’ve had periods where I genuinely couldn’t get comfortable in any position.
I’ve ended up in the ED multiple times because the pain became unbearable I felt like I was going to faint from all of these combined.

Blood tests apparently weren’t showing anything alarming enough for them to keep me. They're pushing neuro to see me but they don't work over weekends and the wait list is cooked so I don't even know if i'll hear back this week. I've been prescribed pregablin or amitryptilan in the mean time (side question - what ones do you guys recommend trying?)

More background:
Chronic elevated inflammatory markers for years (CRP/ESR).
Vitamin D deficiency.
Iron deficiency anaemia (attempted to treat via infusion, hasn't seemed to help)
Heavy periods and PMDD symptoms
Hidradenitis Suppurativa.
Sleep apnoea treated with CPAP.
Family history of autoimmune disease - mum has MS, sister has Graves, separately CP, PCOS and also HS.

One thing that’s confusing me is that I don’t necessarily have the classic “tender points” people talk about. Mine feels more like deep aching, burning, nerve pain, fatigue, weakness, and feeling incredibly unwell overall. I literally feel like my head isn't screwed on right now and it's been utterly inescapable with no ease at all for days now. Constant fucking annoyance. I'm trying to stay calm and meditate the pain and weird feelings out but it's not budging.

For those of you with fibromyalgia:
Did it start with a major flare like this?
Did you get burning nerve pain and weird neurological sensations?
Was it so urgent and bad you had to take yourself to hospital?
Did your symptoms seem to come out of nowhere after a period of worsening fatigue?

At this point I’m waiting on neurology and other specialist appointments, but I’m trying to understand whether fibromyalgia is something worth discussing with my doctors.

Would love to hear if anyone’s experience was similar.

Could this be low phosphate due to iron infusion?

I need to know if anyone can relate or have experienced this because I'm slowly losing myself by the day and feel horrible. My main symptoms are bone crushing fatigue, poor temperature regulation, I'm typically a warm person but I've been so cold and shivery, I can barely leave bed. I'm dizzy the whole day, off balance, brain foggy and my muscles are in bad pain and spasming. I overall just feel horrible and not myself.

For context I had an infusion (ferrinject) about 8 weeks ago and I don't feel the slightest bit better. My body immediately seemed to flare and react in the days following but that chilled out and then I just felt tired up until 5 weeks ago where I started to get so tired I could barely leave the house. I had bloods last weeks which showed moderately low vitamin d deficiency. It also showed my circulating iron was 8 but my ferritin was bumped up to 103.

I'm going to ask the doctor tomorrow for a phosphate test - I just read having low vitamin d puts you at risk of low phosphate as well.

I truly feel horrible and one step away from going to ED but the hospital wait here is terrible and pushes people away who aren't considered urgent. Does this resonate with anyone?
I want to feel better so badly ☹️

I had no idea low Vitamin D could evoke such strong vertigo and dizzy spells, I perpetually feel like I'm bobbing right now, wibbly wobbling CONSTANTLY. It's like my body can't figure out how to stay still internally. It's so frustrating I'm going a bit crazy. Starting high dose treatment and on the wait list for an ENT in 2 months but I'm hoping like hell these supps help me soon ☹️

Has anyone got any experience or tips for dealing with this sensation? It's legit constant and I'm trying so hard not to focus on it.

Hi everyone,

I've been on CPAP for 2 years now but for the last couple of months I'm struggling to work out whether my current CPAP settings are helping or hurting.

Initially my settings were 8-9, for context too much pressure difference has previously put me into sleep paralysis episodes so I keep it quite stable and narrow. 8-9 was great for the last couple of years but then I found I was starting to wake more. My AHI still read 0..3-1 but I was waking frequently. I suspect I have UARS and my machine doesn't fully read these as breathing events.

I ended up bumping up to 8.5-9.5 to see if it'll help.. tiny difference but I'm so sensitive to these things.

What’s confusing me is that on my current settings I’m waking up less often during the night, which seems like a good sign.

However, I’m also getting:
More aerophagia
Sore stomach on waking
Feeling short of breath/light of breath in the morning (such and incredibly annoying feeling that leave me very anxious)
A sensation that I can’t get a satisfying deep breath
Sometimes it takes hours after waking to improve

My overnight AHI has usually been around 0.3–0.5 for a long time, but recently I had a night at 2.1. I know that’s still considered treated, but it made me wonder if something has changed. I haven't had a single night above 1ahi since my first 2 weeks of treatment.

My watch also now reports average overnight SpO₂ around 94%, often staying below 96% and even dropping as low as 80s for some of the night, although I know watches aren’t medical-grade devices. Can O2 drop which such a minor increase? Does that even make sense?

Has anyone experienced fewer awakenings but more aerophagia after increasing pressure?

Can aerophagia alone create a prolonged “air hunger” or “can’t get a full breath” feeling after waking?

If so do I just drop my settings back, deal with disrupted sleep but potentially less aerophagia and breathing pain in the morning? Why has my AHI increased but I'm sleeping through?

I honestly don't know what to do I'm usually pretty on top of this machine and it's just confused me... I'm not looking forward to the waking up feeling to having a sore upper tummy and lack of deep breath.

I've been feeling horrific for the past 6 months but in the last month alone I've been a shell of a person. Basically bed bound.

Back in Jan my level was 24 ng/ml, my doctor didn't say to do anything at the time and said I was fine, I really don't think she even looked over my bloods well. Now in June it's dropped to 11.6. To those experienced, is this a normal progression? Should I be concerned or seek to investigate why it's dropped down so low? For context I also struggle with iron deficiency if that's of any value to add.

I have a megadose of vitamin D 100,000 Ui in my fridge but I'm wanting to know how often I need to be taking this and how much you guys would recommend. I truly feel so horrible - dizzy, bone crushing fatigue, tinnitus, and daily pain. I really hope treating this will help me. I'm looking at buying sports research vitamin d3 (5000ui) and taking that daily - can I do this still after taking the megadose? I'm sorry if I'm coming across frantic, I'm just so so exhausted and don't feel like myself at the moment. I feel abandoned by my doctors as well.

I've been waking up at 3am every single morning since starting LDN with some kind of sensation, first few nights have mostly been visual like my eyes are transitioning from REM to wake and feel glitchy, my brain also feels so wired, usually am able to go back to bed but last night was really horrible. I woke up feeling discomfort in my hand then it just felt like my whole arm was tingling and floaty. I got up because it was making me feel so off and I felt waves of dread and lightheadedness - kind of like the sensation you get before you faint. I still had grip strength and could move it around but it was so off like my arm wasn't mine. It wasn't like pins and needles either it's quite a hard sensation to describe. I was also trembling and felt cold but hot simultaneously - maybe adrenaline related?

I managed to go back to sleep an hour later because I was feeling wired yet so exhausted and sleepy. This morning I still feel off like my arms are weak and jellyish and I feel floaty. I don't like feeling like this at all. The arm feeling is particularly annoying.

This definitely isn't making me want to take it again tonight.. 🫩

Can anyone relate to this?

I've been dealing with chronic inflammation, neck pain, hypermobility just to name a very small select few and was recommended to try this medication.

I took it around 9pm (I go to bed around 12) at first I felt a bit off like wired and fuzzy simultaneously but I feel off already so it really doesn't change much. My dreams were very vivid, it wasn't a bad thing either, I was having very interesting dreams and could recall them as well really strongly.

What WAS weird though was in the middle of the night I woke up briefly to my body spontaneously reaching climax... I'm a woman for context, I've only had this happen in my life a couple times before when I've been so incredibly panicked so much so that my body seems to do it to try to calm me down or try to release the panic but it was actually quite uncomfortable/shocking. Is this a similar level of response or CNS activation or anything to worry about? Has this happened to anyone else? Sorry if I'm over sharing, I guess I'm just very confused and can't find much info on it 😵‍💫