I’m not currently diagnosed with MCAS but strongly suspect I have it. OTC Anti-histamines and stabilizers have helped me a lot but I still wish I could get a proper test done. I’ve heard about cromolyn and feel something like that beneficial assuming I actually have MCAS. The OTCs are helpful but the breakthroughs are still very much there. I have days where I can feel the tingling, sinus issues, GI distress, nausea, muscle soreness, etc. Days lost to 4-5 hour long naps and fatigue. I feel as though my psychiatric issues could be improved as well. My anxiety and mood disorder seem a little more under control these days but I think as long as I have inflammation the fluctuations in mental health are still pretty unstable. On my physically clear days I notice I have a measurable difference in cognition and psychiatric health. It’s great to not feel like my body is under complete siege 24/7 but not enough.
I went to the ER during a a evere episode about 6 months back. I had one doctor look and confirm that my throat was swollen and red but since all the bloodwork they did turned up normal i got sent home, only to have to figure out what OTC treatment to use (thank god for this community) so I wouldn’t have to call out of work all the time and feel like I was dying. I just have this feeling that if I were put on a strong prescription medication my life could be different.
I have an allergist who did a panel on me a while back but I almost want to call again and request a test for MCAS. I don’t know if an allergist would have a test for MCAS or if I should ask for an immunologist. I don’t even know how to ask for this. I’m used to having my concerns brushed aside so I never even brought up the idea of MCAS.

So I have experienced some PMS symptoms basically all throughout puberty: mood swings, cramps, tender breasts, sore muscles, etc. During my period I get the period poops (not diarrhea, y’know the ones).
But in almost 8 years I have NEVER experienced borderline stomach flu-like symptoms until last month.
Last month on the 22nd of April I experienced such horrible nausea (but unfortunately I couldn’t puke) and diarrhea. I didn’t think anything of it at the time, I thought maybe it was just an ordinary upset stomach. Went away after a couple days of pepto and eating noodles and crackers (which sucked because it undid my diet progress a little bit).
But NOW it’s the SAME exact issue as it was on the 22nd of April. Almost exactly a month later, May 21st, and I’m experiencing the same problem. Now I’m not so sure it was just a one-time thing.
April 22nd was five days before I got my period.
Today is about 4-5 days before my period is supposed to start.
Common denominator: week prior to period.
I’m a “once is an instance, twice is a coincidence, three times is a pattern” kinda girl, so I’m not gonna assume anything until it happens a third time, but I was wondering if this has ever happened to you ladies?
I know that a lot of women experience these nausea and diarrhea, but have any of you just abruptly began experiencing this after years of having your period and not having this problem?

So the acupuncturist I went to used kind of thicker needles and a technique where they pumped them in and out of the area to release the muscles. I actually do notice more range of motion today however I also feel insanely sore and overly emotional.. and have had some on and off nausea
Not sure if this is normal?
I do have a severe amount of overall tightness in my back and body in general/ as well as ptsd/panic that I always kind of felt was being stored in my insanely tight muscles
But I just feel so sore and so close to crying so of course it is triggering my good old friend severe panic

So I have experienced some PMS symptoms basically all throughout puberty: mood swings, cramps, tender breasts, sore muscles, etc. During my period I get the period poops (not diarrhea, y’know the ones)
But I have NEVER experienced borderline stomach flu-like symptoms until last month.
Last month on the 22nd of April I experienced such horrible nausea (but unfortunately I couldn’t puke) and diarrhea. I didn’t think anything of it at the time, I thought maybe it was just an ordinary upset stomach. Went away after a couple days of eating noodles and crackers (which sucked because it undid my diet progress a little bit).
But NOW it’s the SAME exact issue as it was on the 22nd of April. Almost exactly a month later, May 21st, and I’m experiencing the same problem. Now I’m not so sure it was just a one-time thing.
April 22nd was five days before I got my period.
Today is about 4-5 days before my period is supposed to start.
Common denominator: week prior to period.
I’m a “once is an instance, twice is a coincidence, three times is a pattern” kinda girl, so I’m not gonna assume anything until it happens a third time, but I was wondering if this has ever happened to you ladies?
I know that a lot of women experience these symptoms, but have any of you just abruptly began experiencing this after years of having your period and not having this problem?

This is something people outside the cptsd experience seem absolutely unaware of. It goes beyond (and so much worse) the realm of things like depression and anxiety (at least for me).
Your body is overall weaker firstly. We don’t go outside much and workouts can be rare (if present at all). Coupled with poor sleep and lack of appetite, you loose so much weight, your muscle strength and endurance bottoms out quickly, tiredness is constant, even the energy to think is too low to improve consistently.
Then there are specific trauma ailments, due to whatever is tormenting you emotionally. For me that leads to a lot of mental block (literally feels like someone jammed a huge block in my brain), tinnitus occurrence, gagging & nausea, to even shaking and shivering in the worst moments. I had foot paralysis for 3 months (had it happen before but not this long)! Right now I got back to playing guitar, only to realise I lost so much muscle that my bicep and forearm gets inflamed (very unpleasant and unlike workout soreness which feels good usually). It’s all like living on edge, ready to breakdown at any new inconvenience.
There’s the constant medical scare if your symptoms are of some other ailment outside ptsd, and you have to often get tests and vitals checked just to be sure.
Psychiatry medications help you regulate, but also have side effects that can contribute to the above.
Your immune system is overall weaker too. Basic things like flu hit harder and take longer to recover. It can exacerbate any of the above. And if you have any other comorbidity, chronic or mental illnesses already, talk about destination fucked! And let’s not forget the high cortisol level and inflammations all this stress is causing us and priming us for future ailments. Deterioration.
I’m in the thick of it all currently. And writing this for anyone else dealing with this kind of shit. No wonder we are further low on motivation and the will to exist. Who would wanna live like this! 🤮
Let this be a reminder how much gentler and caring we need to be to ourselves, especially when no one else is. I know you don’t even want to because of that. But remember it’s all cyclical, and health really is the most important thing! I’ve lived with depression for almost a decade before, and never felt I was struggling to survive like this! It’s seems obvious but so hard to achieve stable physical health. But it could ease things so much if we do! Little by little I guess. 🤍
Ps. Sorry if I missed anything. Feel free to use this as a space to call out awareness to other physical struggles if you want to.
Pps. Not getting into the sex-drive aspect of things. That’s a differently complex final boss. 👹 CPTSD really is a souls-like game ain’t it. No checkpoint bonfires or trophies though.

30F, 5’6”, 150lb
Type 1 Diabetic for 20+ years well controlled and taking insulin
Friday 5pm-6pm: I came down with a fevesore throat/aching muscles
Saturday day: same symptoms but with added nausea, I managed to eat a little and keep fluids down
Sunday 1:30am: I started to feel more intense nausea and vomited about 4 times until 4am.
Sunday day: feeling slightly better and less nausea
Monday 2am: I begin to vomit again roughly every 30 minutes until 5am when I managed to sleep. I vomited again around 8am.
My blood sugars have been a little elevated but not too high, however I do not have a ketone test at home
Attached picture of vomit - as it does not resemble the “ground coffee” https://ibb.co/zQxzgZv
Should I still go to the ER, or is this something I can work off at home?

Im 26 year old female. 165 cm (5’5) and 51 kg (112 lbs). I don’t smoke or drink and don’t take any medication. I’ve never had any serious conditions(if we exclude two pneumonias as a kid) and don’t have any potential genetic disease. I’ve been vaccined for covid 2 years ago. For the past 3 weeks i’ve been occasionally feeling some strange kind of feeling in my left side of chest and left arm. It wasn’t unbearable pain but enough to worry me. I’ve also noticed some feelings in my body that i could describe as a sensation that suddenly appears in my muscles and travels through it, like i’ve noticed it in both arms and foot. 3 weeks earlier prior to these symptoms i had what i thought was heart attack except my symptoms increased when i started overthinking and googling what might be the case. I got tingles in my left arm and sudden flash of cold sweat followed up with nausea and i almost blacked out. I haven’t went to the ER but week after i got sick (constant low grade fever, sore throat, hot flashes in my cheeks, neck and chest, muscle pain) so i went to the doctor and explained my symptoms. We did ecg, blood tests and and blood pressure but all the results came back normal (except lower ALT and GGT on the blood panel and my throat was inflamed). I also got scheduled for cardiologist in 3 weeks but until then i wanted to ask if anyone has experienced anything similar or has any advice/idea what it could be? Could it really be anxiety or should i keep worrying? I’ve stressed out so much in these past few weeks i feel like it took off few years of my life.
Also wanna add im still experiencing hot flushes during the night ever since i got sick, which was this week(i just finished with antibiotics 2 days ago). Although i dont have a fever i wake up feeling like im burning cause my neck and cheeks would feel like they’re on fire. Not sure if theres any correlation between the two problems but i’ve been trying to connect the dots. On top of that i’ve noticed symptoms of pressure/sensation in my chest came back today after i’ve walked outside for 20 minutes. So it seems to be better once im resting and worse when im moving.

Feel free to ask me any questions and I’ll do my best to keep this concise but I can be known to ramble and want to make sure I cover some things I haven’t seen talked about before.
Scheduling: Got new insurance in January. Discovered the insurance covers female sterilization at 100% so I went on the doctor list here, did some research, and picked out my doctor. Called mid January to book, had my consult end of February, surgery was May 15th (last Wednesday).
Consult: I was worried because I’ve heard so much about people getting rejected but the entire time my doctor assured me this was my decision to make and she just wanted to make sure I’d thought about every consequence. I was honest with her that while I was positive this is what I wanted I originally had planned to wait until I was in my 30s to make sure but due to the current political climate I felt I didn’t have the luxury of waiting. I was concerned if I didn’t get this done pre election I’d never be able to or I’d have to travel to get it done. She approved me and we had planned to do a Pap smear while I was there but their computer system crashed so we decided to combine it with the surgery and just do it while I was under.
Pre procedure: Pre-op stuff was super normal. Got a call with instructions around a week out. I can go into more details if anyone has questions but the big thing for me was I was told to not smoke 24 hrs prior and I’ve been trying to quit vaping so I decided to throw out my vape 24 hrs prior to the procedure. The lead up to the surgery was terrible and I regret quitting so close to it because it meant I could drink alcohol or caffeine to try and distract myself since those were also banned so close. But post surgery with me being high on oxy the first few days I completely made it through the worst part of quitting without any problems. I’m only a week clean but highly recommend using surgery to quit addictions it’s a great time to utilize your body being distracted by other stuff.
Surgery: everyone at the hospital was great and nobody tried to change my mind. My surgeon did say I could change my mind up until I was put under and that nobody would be mad. I assured her I was totally hyped and ready to go and that was that. I’ve never had a surgery before so I wasn’t sure how I’d react to anesthesia but I woke up before theyd even finished rolling me into post op. I heard the nurse rolling me in talking about her dog and just was instantly awake and asking her about her pupper. I think I scared her slightly because I was just immediately coherent and mostly just really annoyed because my throat hurt and my mouth was dry. She gave me water and asked if I wanted something for nausea. I didn’t feel any nausea but said yes just in case and I’m glad I did because shortly after she gave it to me I got super nauseous. It kicked in pretty quick and I didn’t throw up so a win. When I first woke up my pain was around a 3 but was quickly ramping up so they gave me a 5mg oxycodone. It took a bit for it to kick in but once it did it completely wiped out my pain. I was able to get discharged within an hour of waking up because I immediately was eating and drinking and was able to get up and walk on my own and go pee which checked all their boxes.
Recovery: I was given 8 oxycodone 5mg and then told to pick up Tylenol, ibuprofen, and stool softener. Alternate the Tylenol and ibuprofen so I’m taking something every 3 hrs and then oxy as needed. I mostly used the oxy to sleep as every muscle in my body felt like I’d run a marathon starting day 2. My back was extremely sore and my skin was tender EVERYWHERE. Also thanks to doing the Pap smear while I was under my vag was sore as fuck too. I must’ve bit my lip while I was under because my lip was all swollen and the absolute worse pain I was feeling was how sore my throat was from the breathing tube. My throat is still sore, back still hurts, muscles are still tender as fuck, but I’m fully off oxy and overall feel fine. I haven’t had a good bowel movement yet so hoping for that soon but I’ll be going back to work tomorrow and overall this surgery recovery hasn’t been any worse than being sick from the flu or something.
Also make sure you have plenty of comfy loose dresses. You will want the comfiest of lounge wear during this recovery. I have my post op this Friday but I’m so happy to finally have this done. It’s a giant weight off my shoulder.

I had a virus that I thought was a bad cold because I wasn't bedridden. But my symptoms were that of the flu, sore muscles, sore skin, loss of appetite, nausea, fatigue ect.

I've (32F - 140ish lb - 5'7") been in chronic pain for my whole life. I've been diagnosed with fibromyalgia, CFS, bipolar 2, adhd, scoliosis, cankor sores, and something about sores in the abdomen (sorry poor word recall). Occasional ovarian cyst ruptures. I hsve had one child, pregnancy was fine but developed HELLP at 38 weeks and had to be induced. I wear glasses, but my eyes are healthy (I get them checked regularly). Currently I'm on:

1. I have a hormonal IUD
2. Duluxotine 90mg
3. Vyvanse 50mg
4. Pregabalin 150mg 2x/day
5. Lamotrigine 200mg 2x/day
6. Zoplicone 5mg
7. Magnesium 500mg
8. Women's multivitamin
9. Lorezepam 1mg (when needed)
10. Rizatriptan 10mg (when needed)

I feel like I'm just collecting diagnoses at this point. It's the Canadian medical system, and so it's like every doctor is disjointed from the other and it takes years to get specialists etc. I've moved a lot, so I usually had long distance family Dr's, but before I was like 20 or so I had no family doctor. So it was all walk in clinics. Then because I had family doctors that lived far from me (both were because I had moved away), I also had to use walk in doctors. And hospitals unfortunately.
I've suffered from really bad back pain (at first I was treated like I was after drugs, then was told it was muscle spasms, until finally got my scoliosis diagnosis). It's not bad enough for surgery I guess and they said it shouldn't cause problems, but it does. I also have fused vertebrae near the bottom of my spine? (Naturally). Like just two. It's been a long time since I was told this, sorry.
Over the years I've had:

1. migraines,
2. a pain in my ribcage/back area on the left side that feels like someone just put their fist there and left it there (it comes and goes),
3. UTIs,
4. severe fatigue (it's so life ruining)
5. overall body pain,
6. swelling of joints and joint pain,
7. nausea
8. gastro pains (I can't have gluten [only started after i had my kid at 23, but got much worse - im not celiac though, i had the scope], but almost everything I eat makes me feel sick, and now I have anxious reactions about food because.. yeah, I get really bloated and uncomfortable and so forth, even when its healthy)
9. depression (clearly),
10. rage, 11.panic attacks,
11. abdominal pain (unrelated to the food issue) so I've been in the hospital a bunch of times because they thought I had appendicitis or something (one time my appendix was like on the cusp of being considered to be removed I believe - but usually they were ovarian cysts that have ruptured),
12. Really cold fingers and toes
13. Feet will sometimes look purple. Ankles have been quite swollen as of late.
14. My hands can get kinda purpley looking
15. Sometimes half my face goes hot and the other doesnt? But more noticeably I'll have one ear go bright red and the other stays the same
16. I almost never have fevers. It would be super impressive to break 100.
17. Swollen lymph nodes.
18. very bad memory, but very good long term memory
19. Absolutely horrible and embarassing word recall issues. I'm not a dumb gal, I am great at writing and such, but you would never know when I speak, it's so bad.
20. Pre-canerous ovarian cells, got them removed with LOOP I think it's called - both follow ups after were clear
21. Shakey hands
22. Brain fog

And then lately I've been struggling with: 1. Light headed 2. Double vision sometimes 3. Impressively, even worse fatigue 4. Short of breath - I think that's related to COVID I had last month. I've gotten it twice and both times it kicked my ass, especially breathing wise 5. But the one that's been bothering me the most is the JERKING. At night it's the worst apparently, ill thrash and stuff... but it's gotten a lot worse lately. And then I would randomly get like a random leg jerk or something now and then, no big deal.
But within the last half month, it's gotten way progressively noticeable. I can sometimes feel it about to come on so I will sit down and yeah, it'll just happen. It happens to every part of my body, it's not picky. Fingers, legs, arms, whole body jerks. I've had a couple of auditory jerks (if that makes sense?) But only probably like three times total, and I think it'd usually when I have a full body spasm.
It's gotten to the point where my partner gets nervous about me driving long distances because he worries about me pressing too hard on the pedal or just, idk, moving the wrong way or something.
I went to the Dr recently and he ordered bloodwork. It was admittedly probably the best bloodwork I've ever had. I'm not anemic or have any deficiencies. The only thing that was off on my bloodwork was eGFR (88L) but was told that it was like on the cusp. Oh, and my specific gravity urine thing was <=1.005L. Went back to the walk in clinic and saw a different Dr. He said it was all fine and I was "probably a little dehydrated" (I drink more than recommended amount of water usually) and then did the knee slap like "alright see ya" and I was just stunned and was just kind of... ????
So I ask why I would be having these twitches and he paused and then asked if I have ever heard of tourettes and then said he was going to refer me to someone to discuss that possibility. I asked if adult onset tourettes is a thing and he said it was "rare, but can happen." I feel like that wouldn't be a first choice.. like if you hear hooves, think horses, not zebras kind of thing. Like he went straight to zebra.
I felt so defeated when I left. I hate being on 11 pills a day. I hate how tired I always am. I hate feeling like my life is passing me by or like I'm failing my daughter. I've had so many jobs because I can't keep a hold on them... either I get too depressed or get fired or just job hop for funsies, I don't know. I just feel like at this point I'm either misdiagnosed or something is missing I'm just... I don't feel like something is right. I know everyone thinks I'm a frequent flyer and my nurse sister straight up calls me a hypochondriac.
I'm just frustrated. I don't think I have "adult onset tourettes" but I feel like this isn't getting better and it's just getting worse. I'm not sure if any of my diagnoses are actually like... not actually separate, if that makes sense?
I don't know. Does anyone have any ideas or anything? Anything maybe I can suggest when I see my family dr next month? I just don't know what to do anymore about my health. I just know I'm in pain and I just want to live a more normal life.
Thanks for reading my novel.

Hi, I've (20F) recently had a spinal fusion surgery 2 months ago. I've been living with my grandmother who is a nurse as I've needed help with doing some things.
I've been feeling very unwell since the surgery. I've told my grandmother and said that I'd like to see a doctor but she just gives me reasons for everything saying that I'm anxious and having panic attacks or allergies or being affected by the anaesthesia still.
Some of the things she tells me might be correct but I'd like to see a doctor because the symptoms that I've been having don't seem normal.
I've been feeling better since I stopped taking pain medication, anti inflammatory and muscle relaxers (about a month ago) but I'm still not feeling normal. I don't remember everything I was taking, but it included norflex, palexia, valium, endone, tarjan, and some others I can't remember.
I've been having nosebleeds frequently, they don't last for very long usually but they happen once or twice a day.
The skin around my nose feels very dry and peeling, it feels like that all through my nose, eyes and sinuses. When I wake up my vision's blurry because my eyes won't focus. My eyes hurt a lot. I'm more pale than usual.
I've lost weight even though I'm eating significantly more than I did before the surgery. I would eat 2 small meals usually before and weighed 44kg, now I eat 3 larger meals with snacks, I'm hungry all the time and I weigh 41kg.
I feel dizzy a lot and like my hearts beating really fast, it's gotten better since about a week or 2 after I stopped the medication. Before when I would stand up sometimes I'd feel the room spinning really fast, my vision would go weird, my heart would beat fast and hard and I could feel it in my stomach, my chest would feel tight and I felt like I couldn't breathe and I'd feel like I was about to drop.
When I would stand up for too long I'd start getting a painful tightness in my chest and when I'd breathe it hurt like it was being restricted and I'd feel short of breath, I'd have to stop whatever I was doing to lay down and it would stop after a few minutes.
I've had flu like symptoms, a wet cough feeling like im coughing something up from my lungs, runny and very itchy nose, congestion, sore ears, mouth, nose and throat, the skin around my mouth and nose is dry and peeling.
I've had some acid reflux, nausea and feeling like my throat is swollen.
I was having trouble urinating at the same time as the breathing problems, it was very slow and would take about three times as long as usual.
I'm feeling better than I was, but I'm concerned that I'm still feeling unwell even though I'm not taking any medication anymore. I'd like to see a doctor but any time I tell my nan about any of the symptoms she acts like it's nothing and tells me to take vitamins or avoid stress and relax (I don't feel stressed at all). I've said a few times about wanting to see a doctor and she says it's just anxiety and doesn't do it.
I've always had problems with dizziness and my heart rate and low blood pressure but it's felt a lot worse since I've had the surgery. I've had an ecg and halter monitor in the past and they said that I had an idiopathic arythmia but that it's common for girls my age and I shouldn't be concerned about it.
Edit: I should mention that I was having these symptoms since I got out of the hospital, but they got worse (especially the breathing, heart rate and extreme dizziness, trouble urinating) after I stopped taking the medications (I did it gradually advised by my surgeon).
The surgery was for scoliosis.

Chest pain can arise from various conditions, some of which are serious and require immediate medical attention, while others are less severe. Here are some common causes of chest pain:

Cardiac Causes

1. Angina

• Chest pain due to reduced blood flow to the heart muscle, often triggered by physical activity or stress.

1. Myocardial Infarction (Heart Attack)

• Severe, crushing chest pain due to the blockage of blood flow to a part of the heart muscle.

1. Pericarditis

• Inflammation of the pericardium (the sac surrounding the heart), causing sharp, stabbing pain.

1. Myocarditis

• Inflammation of the heart muscle, often leading to chest pain, fatigue, and shortness of breath.

1. Aortic Dissection

• A tear in the inner layer of the aorta, causing severe, ripping chest pain.

Gastrointestinal Causes

1. Gastroesophageal Reflux Disease (GERD)

• Acid reflux causing a burning sensation in the chest, often after eating.

1. Esophageal Spasm

• Sudden, intense contractions of the esophagus leading to chest pain.

1. Peptic Ulcer

• Sores in the stomach lining causing burning pain that can be mistaken for heart pain.

1. Gallbladder Disease (e.g., Gallstones)

• Pain from gallbladder issues can radiate to the chest.

Pulmonary Causes

1. Pulmonary Embolism

• A blood clot in the lung causing sharp chest pain, shortness of breath, and rapid heart rate.

1. Pneumonia

• Infection of the lungs leading to chest pain, fever, and difficulty breathing.

1. Pleuritis (Pleurisy)

• Inflammation of the lining of the lungs, causing sharp pain, especially with breathing or coughing.

1. Pneumothorax (Collapsed Lung)

• Sudden onset of sharp, one-sided chest pain and shortness of breath.

Musculoskeletal Causes

1. Costochondritis

• Inflammation of the cartilage connecting ribs to the breastbone, causing sharp pain.

1. Muscle Strain

• Overuse or injury to chest muscles can cause persistent pain.

1. Rib Fractures

• Broken ribs from trauma can cause significant chest pain, especially when breathing deeply or coughing.

Psychological Causes

1. Panic Attack

• Intense anxiety or panic leading to chest pain, rapid heartbeat, and shortness of breath.

1. Anxiety

• Chronic anxiety can cause chest tightness and discomfort.

Other Causes

1. Herpes Zoster (Shingles)

• A reactivation of the chickenpox virus causing a painful rash and chest pain if the chest area is affected.

1. Hiatal Hernia

• Part of the stomach pushes up through the diaphragm, causing chest pain and discomfort.

Given the wide range of potential causes, chest pain should be evaluated by a healthcare professional, especially if it is severe, persistent, or associated with symptoms such as shortness of breath, sweating, nausea, or dizziness. Early diagnosis and appropriate treatment are crucial for conditions like heart attacks and pulmonary embolisms, which can be life-threatening.

hi! F13 here. I don’t have endometriosis. However, my aunt does. My mom and I went to lunch with her recently when I’m on my period. I was in severe pain. My period cramps are equally horrible the entire week, usually being a 7-11/10. She was mentioning that she thinks I could have it since I fit a lot of the symptoms, so I’m wondering what to do. I’ll put my (period) related symptoms down below, plus a few other things to know.

• extreme rib pains, it feels like someone stepped on my chest.
• heavy flow, sometimes finding myself having to wear MULTIPLE pads at a time.
• a lot of discharge?? Like when I’m not on my period I sometimes think I get it because there’s so much discharge.
• a lot of lower back pain as well.
• either bad diarrhea, or severe constipation, even when I’m not on my period.
• urinating issues. It always hurts, sometimes I just can’t at all, and I’ve had a burning sensation is down there like 85% of the time and has been for a little over a year
• super dizzy, I almost always pass out when I stand and I’ve passed out twice recently prior to my period though
• awful nausea, so bad that I could also pass out
• terrible bloating, looks like I’ve gained 20 pounds every time
• extra fatigue. Even prioafter my period, I’m always tired no matter how much I sleep.
• super bad migraines that make my head spin -muscle soreness/numbess??

extra things to speak on

• I got my period when I was 9, the month before my 10th birthday
• I don’t remember my pain ever being this severe, it’s definitely worsened over the past two-three years.
• I do have ed history, so I may have just done some irreversible damage, I’m not sure.
• I have been having other health issues recently. To sum it up, for the past few weeks I’ve had severe stomach pain that traveled to the right side of my abdomen and my side, + daily fevers. Not sure if the two are connected though because I’m currently waiting to see a urologist which could take months
• nothing works for that long. I’ve taken Advil, ibuprofen, mitol, Tylenol, etc. it doesn’t work. Heating pads help a bit but that’s all.

I was diagnosed Long Covid with dysautonomia. I'm male, 47, no serious health issues in the summer of 2023. From late August 2023 to mid May 2024 I've had numerous symptoms:

• blackouts, lightheadedness, dizziness, headaches
• shortness of breath, spontaneous rapid inhaling
• heart palpitations, high resting heart rate, racing heart beats
• high anxiety, panic attacks
• urine leakage/seepage, swollen/aching pelvic region, urine urgency/frequency, nocturia, weak stream
• nausea, loss of appetite, constipation
• hot hands and forearms, icy cold feet
• loss fine motor control in hands
• extreme fatigue, severe exhaustion, tiredness, crashes from mild exertion
• poor concentration, memory loss, confusion
• sad thoughts, mood swings, depression
• blurry vision, watery eyes, eye strain/soreness, floating dots in vision
• swollen dry mouth, phlegm mouth, excessive saliva, bleeding gums, swollen/chapped lips
• night sweats, excessive sweating throughout day
• muscle jolts/twitches
• joint pain
• itchy/stinging skin
• hair loss

It started with heart issues and standing issues, then mood swings, then urinary problems, constipation, blurry vision, cognitive decline, extreme fatigue, muscle jolts, and so on.
By November I had terrible urinary issues never seen before, excruciating perineum pain, nocturia, leakage, the list goes on.
My ability to function was dropping so rapidly I had a "will" made because I thought I'd be dead in a year.
I went to Urgent Care, ER, Urology, Radiology, GP, Osteopathy, another GP, Therapist, to try to find solutions. Tests came up negative, or misdiagnosed, or nothing found.
Late December to mid March I was in bed nearly 24 hours/day. I couldn't think clearly, had forgotten my phone number, and my vision got extremely blurry. Responding to texts took monumental effort. The lightest exertion would make me crash. It was so debilitating I showered maybe 4 times in about 4 months. Most days I'd eat 1 meal, like a sandwich or cereal. Bowel movements were about every 7 days. Days I could stay up a few hours I'd run YouTube in the background.
In January a Psych prescribed Duloxetine for anxiety and depression. A friend mentioned his brother had LC, that maybe I had it. I didn't investigate, I couldn't think anyway and had no energy.
From mid March to mid April I could stay awake 4 to 8 hours a day, daily headaches and eye strain felt like a hangover. Some issues were subsiding or gone but others remained and new ones appeared. I could do light reading and actually comprehend it.
By mid April I could stay awake about 12 hours, sometimes more, and had strength to start investigating LC. Came to realize Long Covid often has many symptoms, mine kept piling up, and had similar experiences as others.
Late April 2024 I started taking numerous supplements to combat symptoms, especially focusing on inflammation. Then I found a Long Covid Center that said it appears to be LC with dysautonomia. I hadn't heard of dysautonomia before. I've been making progress slowly week by week, with some setbacks and recurrences.
My nutrition is healthier than before, eating less processed foods and more fresh fruits, vegetables, whole wheat, grainy stuff, soups.
For supplements, it's hard to assess what helps and where, if at all. So far no side effect issues for me. I searched about histamine/antihistamine and labeled it antihistamine if it either inhibits production/release, breaks down, or blocks histamines. I’m not certain my issues are histamine related however. Here's what I'm taking:

• Rx Duloxetine (SNRI): anxiety, depression
• Magnesium glycinate: heart, anti-inflammatory, anxiety, depression
• Vitamin B complex: energy, antihistamine
  • B1 (Thiamin) antihistamine
  • B2 (Riboflavin) antihistamine
  • B3 (Niacin) pro-histamine
  • B5 (Pantothenic acid) antihistamine
  • B6 antihistamine
• Vitamin B7 (Biotin)/Keratin: antihistamine, hair, skin, nails
• Vitamin C: immune, antihistamine
• Vitamin D3: immune, mood, antihistamine
• Zinc: immune, antihistamine
• Quercetin: anti-inflammatory, genitourinary, antihistamine
• D-mannose: antibacterial, genitourinary
• Saw palmetto: anti-inflammatory, genitourinary
• Curcumin/Turmeric: anti-inflammatory, anti-cytokines, antiviral, antihistamine, depression
• Resveratrol: anti-inflammatory, anti-cytokines, inhibit blood clotting, antihistamine
• Nattokinase: dissolve blood clots, pro-histamine
• Serrapeptase: anti-inflammatory, antihistamine
• Bromelain: anti-inflammatory, antiviral, antihistamine
• Pycnogenol: anti-inflammatory, blood vessels endothelium, antihistamine
• Cordyceps: anti-inflammatory, antiviral, antibacterial, antihistamine
• Probiotics 33 strains: digestion, antiviral, immune, concentration, fatigue, memory
• Omega 3: anti-inflammatory, anxiety, depression
• Garlic: anti-inflammatory, pro-histamine
• Ginger: anti-inflammatory, antihistamine
• Loratadine (Claritin): antihistamine

Anyone use any of these or others with success? Please let me know. Best wishes to everyone here.

so I started a few weeks ago and was instructed to take half dose for a week and up to full dose if no symptoms. I had a bit of dizziness the first couple days but it went away so I decided to up the dose to full after that week. the next day I had extreme dizziness, fever with chills, nausea in my throat, muscle soreness, and major headache. my doctor told me to stop until symptoms go away, then try again on half. so I waited like 2 days (symptoms literally went away in 24 hours though it was SO BAD I literally had felt like I had aged 70 years) and restarted the half dose a night routine. well, it's been over a week on half and last night about 4 hours after my regular half dose I woke up with fever and chills, muscle soreness, only a slight headache, and major nausea in my throat again! I'm so sick of this and I think I will be stopping. just was wondering if anyone else has this? this nausea is so weird, it's like a lump in my throat and when I move I get nausea and when I swallow I get nausea but it's like not stomach nausea at all. plus the muscle soreness and headache, probably will be hobbling around my house like last time :(

Prior to pregnancy I was at a healthy normal weight and had no issues with mobility, I wasn't super fit but I'm naturally a bit of a lazy gal. Once I got pregnant I became even more lazy, first it was the 1st trimester nausea and fatigue making me hate even walking but then once my belly was actually big it was just uncomfortable being on my feet for very long.
Towards the end I had gained around 55lbs and it was absolutely horrible getting up out of a chair or out of bed as it put soo much strain on my knees. Now I'm 2.5 weeks postpartum I'm still about 37lbs heavier than pre pregnancy weight and my knees are doing worse. I think it's all the standing up I've been doing whilst holding the baby, I can't see this situation improving as babe is only going to get heavier and I have no choice but to stand up with her (i.e she falls asleep in my arms so I get up to put her in her bassinet).
It's got me feeling low because in reality that is only one of several painful symptoms and I guess I'm a bit over it, I fully expected and accepted the pain that would accompany giving birth but I swear it's worse now a couple weeks in than it was in those first few days after birth? I had an episiotomy and it was initially quite low maintenance but now my bleeding is even heavier and it hurts down there when I stand up even for a couple of minutes.
I'm also now "backed up" because it's too painful to sit on the toilet for more than a few seconds and my stitches area just burns and throbs. Oh and of course I have to have a giant haemorrhoid on my ass to accompany it and make it even more impossible to use the bathroom.
Then my final straw was this morning realising i've injured or somehow pulled a muscle in my shoulder which was probably due to me holding the baby in a silly way to accommodate the rest of my random pains, so moving around is even more painful and limited. My wrist is also sore constantly as I suffered from carpal tunnel in pregnancy and while that seems to be gone now it's like it's left me a lasting injury anyway.
I know I'm just feeling sorry for myself and that it could be MUCH worse but I think I just needed to vent because it feels like I'm in constant pain if not here then there and it's tiring. My partner can only sympathise so much when he doesn't know what any of it feels like. I'm only 27 and it feels like my body has already given up lol. Anyone else feel this?

So on Saturday I went on a long-ish car ride, and it gave me a nauseous, car sick type of migraine, which is pretty typical for me. What is not typical is that I am still feeling it 5 days later with headache meds not helping.
It comes and goes, and gets worse when i get up and move around. It's also worse upon waking up, and I've been having very surreal fever dreams. It is a pressure migraine, ranging from barely noticeable dull pain that I can ignore, to feeling like someone is literally standing on my skull where it hurts to even open my eyes. Usually I get them if my blood sugar is too low from not eating, or they can be triggered by car rides or fumes like nail polish. And usually all I need to do is eat some peanut butter crackers, turn all the lights off, take ibuprofen with some water, and sleep.
On day 3 I puked multiple times, and since then my chest and back muscles hurt when i breathe too deeply (i assume that's just from straining them while throwing up?) My whole body is kinda sore to be honest, but the chest discomfort when I take a deep breath is obviously the most concerning.
When I tilt my head forward or bend over, after a few seconds I get the sensation of water getting up my nose, and my eyes start to water. The pain and pressure spreads throughout my whole skull if I lean over too long. I feel better when laying down on my side, but laying flat on my back leads to the same water in my nose feeling.
The other issues like nausea and light sensitivity are things I've had before, even puking every once in awhile if i don't eat soon enough, but this awful pressure in my head like I went underwater without blocking my nose is new. Is it just sinuses? My nose isn't blocked or runny at all, I can breathe perfectly fine (not counting muscle soreness), and have not been coughing. I did spend a couple hours on Saturday under a tree that was covered in blossoms, but there's no way any pollen I breathed in would still be affecting me right? Allergy pills have not helped either. Plus I have not been outside for more than a few minutes in the past few days, as I've been in bed hoping this will go away if I just rest enough.
I have an appointment on Friday with my PCP to discuss this, but is there any chance it sounds like a more serious issue that warrants an ER visit? I've discovered what a cranial leak (CSF) is and am now paranoid about that. I'm only 23 but had multiple blood clots 2 years ago (that seem to have gone away now that i switched birth controls), and during that time I had an Atrial septal defect closed in my heart. So I am young but do have some history with physical health issues. Plus the years of chronic migraines, but this one has definitely been the worst from how long it's lasted and the various other symptoms it has caused.
Please let me know if anyone has experienced something similar or if it sounds more serious than just a bad migraine. Thank you!

I’ve been experiencing a ton of different symptoms for a while, for over two years I’ve had a lot of gastrointestinal distress like constipation and diarrhea, severe stomach cramps, gas and gas pains, nausea, etc. For the past year or so I’ve started to feel really run down and sick, like I have the flu or something. I’m always fatigued and resting doesn’t help, I have muscle pain all the time especially in my back and jaw, aching and cramps in my legs and arms, I’m always overheated and sweating, I get unexplained skin issues like rashes and redness, my lymph nodes feel sore and sometimes swollen, I have tachycardia. Just generally I usually do not feel physically well.
I’ve been seeing a new therapist for probably about a month. I’ve been talking to her about how my health issues have been affecting me and how tiring it can be to deal with doctors and how being fatigued and in pain 24/7 makes it really difficult to go about my regular life. I just checked the billing paperwork from my last session and realized she diagnosed me with Hypochondriasis. And I’m kind of spinning out now, like is she right, am I just making all of this up, what if I’m just crazy and paranoid and delusional??
It’s just that I never used to feel like this, like obviously I’d be tired sometimes and get headaches or stomachaches occasionally like a normal person, but I felt overall physically well. But now I feel like I’m sick or in pain a lot of the time, my muscles and joints are always intensely hurting and aching, I’m constantly having painful GI episodes that derail my plans and I’m stuck on the toilet feeling like I’m going to pass out, and the fatigue is not just tiredness, no amount of rest helps. I just mean that I didn’t used to feel like this, this isn’t my “normal”, my daily life is being disrupted because I don’t feel well.
But based on the diagnosis of hypochondriasis, it says you have a lot of symptoms but tests come back normal, which my blood tests haven’t shown any glaring issues so I guess that means it’s psychosomatic? And there are some symptoms of the disorder, like thinking and researching about your health and seeking out different doctors and tests, that I also have, because I have symptoms that are impacting my life and I want to figure out how I can feel better.
The diagnosis of hypochondriasis also says that you get anxious about minor symptoms like fatigue. But my fatigue is not a minor symptom, when I say fatigue I don’t mean tiredness or sleepiness, it’s like this constant heavy weight on me, it impacts my daily life because I feel too tired to do normal activities like school and work, and I can’t get through the day without sleeping, and even then I never feel rested. I feel so shitty thinking that my chronic fatigue is considered a minor symptom and I’m blowing it out of proportion due to hypochondriasis.
I’m honestly freaking out, my therapist putting that diagnosis on my chart makes me feel like I’m just insane and I’m questioning everything, I don’t know what to do or think. I keep getting told this is all in my head

Several people have approached me that they might have endometriosis. Lifelong warrior so thought I would share my tips and tricks I put together for my friends and family to share with you :) Hope this helps someone!
ENDOMETRIOSIS SURGERY FACTS

• EXCISION SURGERY! I cannot stress this one enough. If you have an ablation, it will grow back and likely quick (but consult with your doctors on your case 100%). Excision is when they cut it out vs. it gets burned off. You will have a better success rate and slow rate of growth if they excise. Not all cases can be depending on location so again, please talk with your doctor about your situation. This is not the same for everyone.
• If your doctor cannot do excision surgery. Skip and move on to the next! Trust me, well worth the time to research and find the right doctor. You will thank me later for this one too haha.
• Finding a doctor is stuff. Also tough to find resources. If you cannot find an Endometriosis specialist in your area who does excision, you may need to look out of state, but one tip is exploring gynecological oncologists. Some will take benign cases, but not all so do your research. But it’s a good avenue for help in your area or you want insurance coverage.
• Nanny’s Nook is a good resource for online information regarding endometriosis: https://nancysnookendo.com/
• Dr Seckin’s book called The Doctor Will See You Now is also worth the read (https://www.amazon.com/Doctor-Will-See-You-Endometriosis/dp/1681621126)
• Definitely look into Egg Freezing before doing any permanent surgeries. The ovaries are more intact when there is a uterus in place, so I recommend immediately following any excisions with Egg Freezing if you can and if it’s part of your plans. I found my AMH levels low (1.2) but still retrieved 25 eggs, so never be discouraged if this is your future planning path.
• My Symptoms: I experience bloating, constipation, diarrhea, nausea and vomiting as the main culprits. I have irregular periods in regards to the number of days and if it comes or not (even with an IUD). Pelvic pain is probably the worst of all since it accompanies these symptoms and is present a majority of the time. Others may have different symptoms, and there’s many others I didn’t list but wanted to paint the picture of some I’ve experienced.

ENDOMETRIOSIS LAPAROSCOPIC SURGERY (WHAT TO EXPECT)
PRE-SURGERY

• List of questions to ask your doctor
• Insurance Information and ID
• Necessary forms or paperwork the doctor requires
• Make sure any medical records are sent that would be relevant

POST-OP PREP

• Eat smaller meals and simple foods days beforehand. If bowel prep is necessary, they also recommend taking a laxative in the days leading up to help prep.
• Pack a bag! Not every surgery is an overnight stay but even if you have a day-of surgery, back an overnight bag. Here’s the essentials:
  • Phone/Headphones/iPad/Kindle/Books
  • Device Chargers
  • Medications that you currently take
  • Glasses (do not wear contacts day of)
  • An extra pair of underwear
  • Sanitary Pads or Always Discreet
  • Comfy pants with light elastic band around the waist
  • Non wired bra
  • Slip on shoes (this is clutch! Recommend slides -https://www.amazon.com/gp/product/B0BL7LJKZW/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1).
  • Layers - Sweatshirt, Long Sleeved Shirt etc. - Hospitals are cold!
  • Toothbrush and tooth paste
  • Hairbrush
  • Face wipes, wash cloth, small towel and bar of soap.

SPACE PREP

1. Make sure your bed or couch is prepped. I stayed on the first level for the first 2ish days before feeling well enough to stay upstairs.
2. I used a pregnancy pillow on the bed to help me stay on my back while sleeping and help you feel cozy.
3. Stock the house with foods that will be light for your stomach. Think soups and casseroles! Saltine crackers, broths, rices etc..
4. If you have a raised bed, get a step stool to assist. It’s best to sit on the side of the bed and slowly lay your upper body down while bringing your knees up and over to your back. You will need to use arm strength the first couple of days to get you up and over since you can’t use the abdomen.
5. Water and Beverages stocked at all times. I have a reusable water bottle and avoid carbonated beverages for the time being. They fill you with gas for the procedure so it may make those symptoms worse.
6. Netflix, Kindle, Puzzles, Craft Projects…visits with friends. Whatever makes the time pass, set it up ahead of time so it’s handy.
7. Items to Keep on Hand: Baby Wipes, heating pads, pads/diapers, candles, essential oils, things that smell good haha

BOWEL PREP
This is dependent on the type of surgery you are having, but its good to have Gatorade, Magnesium Citrate (liquid), laxatives and enemas on hand just in case you need these.
ON SURGERY DAY
It’s important to follow the instructions on what to stop taking and/or eating/drinking prior to the surgery. Wear comfy clothes (wide elastic waistband) and slides with cozy socks. Double check your to go bag and breath.
AT THE HOSPITAL

1. Do your check-ins and keep your people with you as long as you want.
2. Make sure to read all the consent forms and ask any questions upfront. Make any advance directives clear.
3. Just try to remain calm as there’s a lot of down time while they do intake. It is about 2 hours of prep before they bring you in for the surgery itself.
4. They will ask you the same questions over and over again, that’s normal and trust me, you want to confirm it’s all being done properly.
5. If you need something for anxiety, they will be sure to give you something if you ask :)
6. You will be wearing a gown, socks, funky underwear and a cool hair net haha wear the gown backward so you keep warm and keep the butt covered.
7. Vitals will happen and the anesthesiologist will come and speak with you to make sure they prep the right meds beforehand. Bring up any concerns here with them!
8. You may be wheeled or walked into surgery. I’ve only ever walked in and laid on the table myself.
9. They will then put the IV in your arm and sometimes will put on a mask, they will then ask you to count backwards and before you know it, you will be awake again!

RECOVERY

• You will wake-up and feel groggy. Totally normal and you will be in a different room. They will likely say a lot really quick about your surgery. Before leaving ask for them to walk through it or see if you can speak with the doctor again when clear headed. RECOMMENDED!
• Your throat will be sore, that’s normal from the tube.
• Just relax and sleep it off if you want, the goal is to be relaxed and pee once before leaving.
• Before you go, eat and drink and pass smoke urine. They’ll provide you with the meds and you’ll be good to go.
• Make sure someone brings you home after :)
• Make sure you have a bag for vomit in the car.
• Bring a small pillow that can be strapped between the car belt and you for maximum comfort on the trip home.
• Pain Med Management: This one is important. I messed up night one and didn’t take it soon enough and was in too much pain so make sure you stick to the schedule the doctors give you to ensure you are comfortable.
• Keep Walking: It seems unnatural to have a surgery then walk, but the sooner you get up and keep moving around the house, the better. Just avoid heavy lifting and immense bending like movements. Stairs are also ok but also consult with your doctor!
• Gas Build Up: I did feel pain in my shoulders from the gas. Just keep moving! It will help get that out of the system but this pain is normal.
• Relax and let people take care of you! Don’t be too quick to recover.
• Keep an eye out for fever, increased vaginal bleeding, or feeling terrible.
• Keep all post op appointments and follow all post op instructions!

ENDOMETRIOSIS MAINTENANCE
Here’s the tips and tricks I found helpful for maintaining my pain and symptoms (GI and back pain related):

1. Pelvic Floor Therapy: This is important for keeping the muscles in your pelvis healthy and strong to maintain your structure and also help manage pain. Consult with your doctor on whether this is right for you.
2. Physical Therapy: I do PT for my back and pelvic floor since it’s all related. We focus on Myofascial Release Therapy to help break up the adhesions and give me more mobility. This helps with temporary pain relief (reduction in number), but that is always welcome :)
3. Acupuncture: I swear by Acupuncture. I don’t know what it does or why, but it works. It’s not a cure by any means, but it's great for relaxation, fertility, digestion, endometriosis, sleep, etc.. I can go on, but it’s not covered by insurance plans all the time so you will need to check and see what you’re able to take on.
4. Diet/Exercise:
   1. Eating high protein, lower fat/carbs (not none just low) helps your body, but overall learn your trigger foods! This will go a long way.
   2. Ginger, turmeric and fennel all help with bloating. I like to drink them in tea form when I’m feeling particularly hard stomached as it’s a good natural way to decrease the bloat. Peppermint also works for some, for me it irritates my GERD.
   3. Chamomile for relaxation
   4. Walking and movement are important. I cannot do anything high impact due to my sacroiliitis diagnosis, so I stick with light yoga and walking.
5. Alcohol/Other Substances: Don’t do it. Don’t touch it. You’ll thank me later on this point.
6. Sleep: Insomnia is a very real thing. I think I went 2 or 3 days at its worst one time and I cannot say enough how important trying to keep the same sleep schedule will benefit you. Waking and sleeping around the same time each day will still feel exhausting but at least you know your body is getting the most sleep it can get.
7. Medications/Supplements:
   1. Ibprofuern: This does NOT work for me. I have GERD and ulcers so I cannot take NSAIDs, but with that in mind, NSAIDs are supposedly the best pain medication over the counter to help you manage it.
   2. Pain Killers: These are AS NEEDED. I try to refrain and leave these for the TRULY bad days which I try to spread out. Not even worth it sometimes, because I don’t like how I feel and sometimes vomit after taking them. But they do help the pain!
   3. IUD/Orilissa: An IUD will NOT do anything. If you are diagnosed, ask your doctor about Orilissa or similar medicines instead of birth control methods. This will not stop the growth, just suppress it. There are side effects and it is only a short term solution.
   4. Linzess: This worked well for me for constipation symptoms when they got severe. Definitely recommend bringing this to your doctor if you’re truly suffering and they have not yet mentioned. I also resorted after trying magnesium citrate
   5. CBD Lotions/Salves: For my pelvis, I use Healing Rose CBD Salve in Orange and Lavender (https://www.thehealingroseco.com/product/orange-lavender-with-chamomile-herbal-salve-300mg-cbd/). For my back, I use a medical grade CBD lotion with menthol (https://cbdclinic.co/clinical-strength-series/). I also use a CBD massage oil from Healing Rose of the same scent when doing myofascial release at home. I also use Somedays Cramp Cream (https://somedays.com/products/period-cramp-cream?variant=42062153842853).
8. Heating Pads and Ice Pack: I have several varieties of heating pads. A cordless travel heating pad (https://www.amazon.com/dp/B09FPTJL4G?psc=1&ref=ppx_yo2ov_dt_b_product_details), a plug-in heating pad (lhttps://www.hsn.com/products/pure-enrichment-purerelief-xxl-heating-pad-with-9-cord/22188460) and stick on patches (https://www.thermacare.com/ - I use the back patches but reverse them to the front for better coverage). For hot flashes and night sweats (also if you need to relax while anxious) place an ice pack over your chest to help cool or calm down.
9. Self-Care: No joke, massages, facials, epsom salt baths, sound baths, reiki….anything that you find relaxing. Do it. Try it! They also make CBD bath bombs Ive been wanting to check out.
10. TENs Machine: I really want one, don’t have one, but people swear by them (the heating pad linked to MyObi has a TENs version - https://myobistore.com/en-us/collections/my-obi-belts/products/apollo-2-0).
11. Pregnancy Pillow: This one sounds so lame, but I bought a pregnancy pillow for my first endometriosis surgery since I’m a side sleeper to help keep me on my back during recovery. It changed by life! It helps my anxiety and makes me comfortable while sleeping. (https://www.amazon.com/gp/product/B08YYVRXLM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)..
12. Heated Blankets/Cozy Blankets: Make yourself feel better with a cozy blanket. Do it, I dare you!
13. Endo To-Go Bag: Includes heating pads (travel, plug-in and patches), medications, balms/salves, essential oils and pads/protection items, change of clothes, wet wipes.
14. Sex Life: I’m single, I don’t have a partner to worry about communicating this issue with at this point, but go slow and communicate given eventually this will have to be a conversation. What I have learned is that if you do have sex and feel pain. Immediately stop! If you associate sex with pain mentally in that moment, it may cause fear in doing so down the line so it’s best to stop the moment you feel any pain occur.
15. Work Life: I work a demanding job so it was not working with the appointments and care I needed to manage pain. Always get FMLA from your doctor for intermittent leave based on your company's policies. This protects you from flare-ups and appointments. Short Term Disability is based on your situation with work so talk with them about any leave of absence for surgery and recovery and ensure the medical providers fill out the paperwork appropriately.
16. Friends/Family: This one is the worst. I have to cancel and make plans all the time based on how I feel. I like to line up a bunch of plans for three months out and do my best to make them happen at the beginning of the month when I know I’m most likely to feel good. I just say I’ll make things up to them when I get better and those who have stuck around have been truly amazing friends, but don’t be upset that some might be over the day in and out of what you’re going through. It’s hard for you and sometimes others and it’s just a part of the relationships we’re meant to experience in life. Most people (unless they have endometriosis) don’t understand it so it can feel isolating, but there’s others out there who know what you’re going through and are willing to chat. Just gotta find them and reach out on social media, online etc..
17. Journaling Symptoms: Guilty of not being the best at this always, but it's good to track your symptoms to see how they work and operate. It helps not only you plan for it, but also your doctors in how best to handle your care. Take photos of things that make sense to show your doctors! Discharge, bowels etc..can sometimes help diagnose or judge with the images.
18. Next to Bed Kit: Make sure your nightstand is stocked with the essentials for your bad days. Makes it easier to access the items you need when you just can’t get up and get it.
19. Squatty Potty: Another thing that is majorly life changing on constipation days! Get one or you can make your own :) Take a stack of books and stack them at equal heights on each side and put your feet up. The trick is making sure you’re in a squat with your knees high to your ears.
20. Clothing: Dressing for this is key but you still want to look cute! Joggers with a stretchy waist are my go to pants, but wide leg trousers with a stretchy waist help with ease of removal but also comfort and brings some style to the look.
21. Pads: I wear Always Discreet vs. pads. I find when you need to wear them full time for incontinence it just makes it more comfortable. They have different cuts and styles so definitely check them out!

Several people have approached me that they might have endometriosis. Lifelong warrior so thought I would share my tips and tricks I put together for my friends and family to share with you :) Hope this helps someone!
ENDOMETRIOSIS SURGERY FACTS

• EXCISION SURGERY! I cannot stress this one enough. If you have an ablation, it will grow back and likely quick (but consult with your doctors on your case 100%). Excision is when they cut it out vs. it gets burned off. You will have a better success rate and slow rate of growth if they excise. Not all cases can be depending on location so again, please talk with your doctor about your situation. This is not the same for everyone.
• If your doctor cannot do excision surgery. Skip and move on to the next! Trust me, well worth the time to research and find the right doctor. You will thank me later for this one too haha.
• Finding a doctor is stuff. Also tough to find resources. If you cannot find an Endometriosis specialist in your area who does excision, you may need to look out of state, but one tip is exploring gynecological oncologists. Some will take benign cases, but not all so do your research. But it’s a good avenue for help in your area or you want insurance coverage.
• Nanny’s Nook is a good resource for online information regarding endometriosis: https://nancysnookendo.com/
• Dr Seckin’s book called The Doctor Will See You Now is also worth the read (https://www.amazon.com/Doctor-Will-See-You-Endometriosis/dp/1681621126)
• Definitely look into Egg Freezing before doing any permanent surgeries. The ovaries are more intact when there is a uterus in place, so I recommend immediately following any excisions with Egg Freezing if you can and if it’s part of your plans. I found my AMH levels low (1.2) but still retrieved 25 eggs, so never be discouraged if this is your future planning path.
• My Symptoms: I experience bloating, constipation, diarrhea, nausea and vomiting as the main culprits. I have irregular periods in regards to the number of days and if it comes or not (even with an IUD). Pelvic pain is probably the worst of all since it accompanies these symptoms and is present a majority of the time. Others may have different symptoms, and there’s many others I didn’t list but wanted to paint the picture of some I’ve experienced.

ENDOMETRIOSIS LAPAROSCOPIC SURGERY (WHAT TO EXPECT)
PRE-SURGERY

• List of questions to ask your doctor
• Insurance Information and ID
• Necessary forms or paperwork the doctor requires
• Make sure any medical records are sent that would be relevant

POST-OP PREP

• Eat smaller meals and simple foods days beforehand. If bowel prep is necessary, they also recommend taking a laxative in the days leading up to help prep.
• Pack a bag! Not every surgery is an overnight stay but even if you have a day-of surgery, back an overnight bag. Here’s the essentials:
  • Phone/Headphones/iPad/Kindle/Books
  • Device Chargers
  • Medications that you currently take
  • Glasses (do not wear contacts day of)
  • An extra pair of underwear
  • Sanitary Pads or Always Discreet
  • Comfy pants with light elastic band around the waist
  • Non wired bra
  • Slip on shoes (this is clutch! Recommend slides -https://www.amazon.com/gp/product/B0BL7LJKZW/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1).
  • Layers - Sweatshirt, Long Sleeved Shirt etc. - Hospitals are cold!
  • Toothbrush and tooth paste
  • Hairbrush
  • Face wipes, wash cloth, small towel and bar of soap.

SPACE PREP

1. Make sure your bed or couch is prepped. I stayed on the first level for the first 2ish days before feeling well enough to stay upstairs.
2. I used a pregnancy pillow on the bed to help me stay on my back while sleeping and help you feel cozy.
3. Stock the house with foods that will be light for your stomach. Think soups and casseroles! Saltine crackers, broths, rices etc..
4. If you have a raised bed, get a step stool to assist. It’s best to sit on the side of the bed and slowly lay your upper body down while bringing your knees up and over to your back. You will need to use arm strength the first couple of days to get you up and over since you can’t use the abdomen.
5. Water and Beverages stocked at all times. I have a reusable water bottle and avoid carbonated beverages for the time being. They fill you with gas for the procedure so it may make those symptoms worse.
6. Netflix, Kindle, Puzzles, Craft Projects…visits with friends. Whatever makes the time pass, set it up ahead of time so it’s handy.
7. Items to Keep on Hand: Baby Wipes, heating pads, pads/diapers, candles, essential oils, things that smell good haha

BOWEL PREP
This is dependent on the type of surgery you are having, but its good to have Gatorade, Magnesium Citrate (liquid), laxatives and enemas on hand just in case you need these.
ON SURGERY DAY
It’s important to follow the instructions on what to stop taking and/or eating/drinking prior to the surgery. Wear comfy clothes (wide elastic waistband) and slides with cozy socks. Double check your to go bag and breath.
AT THE HOSPITAL

1. Do your check-ins and keep your people with you as long as you want.
2. Make sure to read all the consent forms and ask any questions upfront. Make any advance directives clear.
3. Just try to remain calm as there’s a lot of down time while they do intake. It is about 2 hours of prep before they bring you in for the surgery itself.
4. They will ask you the same questions over and over again, that’s normal and trust me, you want to confirm it’s all being done properly.
5. If you need something for anxiety, they will be sure to give you something if you ask :)
6. You will be wearing a gown, socks, funky underwear and a cool hair net haha wear the gown backward so you keep warm and keep the butt covered.
7. Vitals will happen and the anesthesiologist will come and speak with you to make sure they prep the right meds beforehand. Bring up any concerns here with them!
8. You may be wheeled or walked into surgery. I’ve only ever walked in and laid on the table myself.
9. They will then put the IV in your arm and sometimes will put on a mask, they will then ask you to count backwards and before you know it, you will be awake again!

RECOVERY

• You will wake-up and feel groggy. Totally normal and you will be in a different room. They will likely say a lot really quick about your surgery. Before leaving ask for them to walk through it or see if you can speak with the doctor again when clear headed. RECOMMENDED!
• Your throat will be sore, that’s normal from the tube.
• Just relax and sleep it off if you want, the goal is to be relaxed and pee once before leaving.
• Before you go, eat and drink and pass smoke urine. They’ll provide you with the meds and you’ll be good to go.
• Make sure someone brings you home after :)
• Make sure you have a bag for vomit in the car.
• Bring a small pillow that can be strapped between the car belt and you for maximum comfort on the trip home.
• Pain Med Management: This one is important. I messed up night one and didn’t take it soon enough and was in too much pain so make sure you stick to the schedule the doctors give you to ensure you are comfortable.
• Keep Walking: It seems unnatural to have a surgery then walk, but the sooner you get up and keep moving around the house, the better. Just avoid heavy lifting and immense bending like movements. Stairs are also ok but also consult with your doctor!
• Gas Build Up: I did feel pain in my shoulders from the gas. Just keep moving! It will help get that out of the system but this pain is normal.
• Relax and let people take care of you! Don’t be too quick to recover.
• Keep an eye out for fever, increased vaginal bleeding, or feeling terrible.
• Keep all post op appointments and follow all post op instructions!

ENDOMETRIOSIS MAINTENANCE
Here’s the tips and tricks I found helpful for maintaining my pain and symptoms (GI and back pain related):

1. Pelvic Floor Therapy: This is important for keeping the muscles in your pelvis healthy and strong to maintain your structure and also help manage pain. Consult with your doctor on whether this is right for you.
2. Physical Therapy: I do PT for my back and pelvic floor since it’s all related. We focus on Myofascial Release Therapy to help break up the adhesions and give me more mobility. This helps with temporary pain relief (reduction in number), but that is always welcome :)
3. Acupuncture: I swear by Acupuncture. I don’t know what it does or why, but it works. It’s not a cure by any means, but it's great for relaxation, fertility, digestion, endometriosis, sleep, etc.. I can go on, but it’s not covered by insurance plans all the time so you will need to check and see what you’re able to take on.
4. Diet/Exercise:
   1. Eating high protein, lower fat/carbs (not none just low) helps your body, but overall learn your trigger foods! This will go a long way.
   2. Ginger, turmeric and fennel all help with bloating. I like to drink them in tea form when I’m feeling particularly hard stomached as it’s a good natural way to decrease the bloat. Peppermint also works for some, for me it irritates my GERD.
   3. Chamomile for relaxation
   4. Walking and movement are important. I cannot do anything high impact due to my sacroiliitis diagnosis, so I stick with light yoga and walking.
5. Alcohol/Other Substances: Don’t do it. Don’t touch it. You’ll thank me later on this point.
6. Sleep: Insomnia is a very real thing. I think I went 2 or 3 days at its worst one time and I cannot say enough how important trying to keep the same sleep schedule will benefit you. Waking and sleeping around the same time each day will still feel exhausting but at least you know your body is getting the most sleep it can get.
7. Medications/Supplements:
   1. Ibprofuern: This does NOT work for me. I have GERD and ulcers so I cannot take NSAIDs, but with that in mind, NSAIDs are supposedly the best pain medication over the counter to help you manage it.
   2. Pain Killers: These are AS NEEDED. I try to refrain and leave these for the TRULY bad days which I try to spread out. Not even worth it sometimes, because I don’t like how I feel and sometimes vomit after taking them. But they do help the pain!
   3. IUD/Orilissa: An IUD will NOT do anything. If you are diagnosed, ask your doctor about Orilissa or similar medicines instead of birth control methods. This will not stop the growth, just suppress it. There are side effects and it is only a short term solution.
   4. Linzess: This worked well for me for constipation symptoms when they got severe. Definitely recommend bringing this to your doctor if you’re truly suffering and they have not yet mentioned. I also resorted after trying magnesium citrate
   5. CBD Lotions/Salves: For my pelvis, I use Healing Rose CBD Salve in Orange and Lavender (https://www.thehealingroseco.com/product/orange-lavender-with-chamomile-herbal-salve-300mg-cbd/). For my back, I use a medical grade CBD lotion with menthol (https://cbdclinic.co/clinical-strength-series/). I also use a CBD massage oil from Healing Rose of the same scent when doing myofascial release at home. I also use Somedays Cramp Cream (https://somedays.com/products/period-cramp-cream?variant=42062153842853).
8. Heating Pads and Ice Pack: I have several varieties of heating pads. A cordless travel heating pad (https://www.amazon.com/dp/B09FPTJL4G?psc=1&ref=ppx_yo2ov_dt_b_product_details), a plug-in heating pad (lhttps://www.hsn.com/products/pure-enrichment-purerelief-xxl-heating-pad-with-9-cord/22188460) and stick on patches (https://www.thermacare.com/ - I use the back patches but reverse them to the front for better coverage). For hot flashes and night sweats (also if you need to relax while anxious) place an ice pack over your chest to help cool or calm down.
9. Self-Care: No joke, massages, facials, epsom salt baths, sound baths, reiki….anything that you find relaxing. Do it. Try it! They also make CBD bath bombs Ive been wanting to check out.
10. TENs Machine: I really want one, don’t have one, but people swear by them (the heating pad linked to MyObi has a TENs version - https://myobistore.com/en-us/collections/my-obi-belts/products/apollo-2-0).
11. Pregnancy Pillow: This one sounds so lame, but I bought a pregnancy pillow for my first endometriosis surgery since I’m a side sleeper to help keep me on my back during recovery. It changed by life! It helps my anxiety and makes me comfortable while sleeping. (https://www.amazon.com/gp/product/B08YYVRXLM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)..
12. Heated Blankets/Cozy Blankets: Make yourself feel better with a cozy blanket. Do it, I dare you!
13. Endo To-Go Bag: Includes heating pads (travel, plug-in and patches), medications, balms/salves, essential oils and pads/protection items, change of clothes, wet wipes.
14. Sex Life: I’m single, I don’t have a partner to worry about communicating this issue with at this point, but go slow and communicate given eventually this will have to be a conversation. What I have learned is that if you do have sex and feel pain. Immediately stop! If you associate sex with pain mentally in that moment, it may cause fear in doing so down the line so it’s best to stop the moment you feel any pain occur.
15. Work Life: I work a demanding job so it was not working with the appointments and care I needed to manage pain. Always get FMLA from your doctor for intermittent leave based on your company's policies. This protects you from flare-ups and appointments. Short Term Disability is based on your situation with work so talk with them about any leave of absence for surgery and recovery and ensure the medical providers fill out the paperwork appropriately.
16. Friends/Family: This one is the worst. I have to cancel and make plans all the time based on how I feel. I like to line up a bunch of plans for three months out and do my best to make them happen at the beginning of the month when I know I’m most likely to feel good. I just say I’ll make things up to them when I get better and those who have stuck around have been truly amazing friends, but don’t be upset that some might be over the day in and out of what you’re going through. It’s hard for you and sometimes others and it’s just a part of the relationships we’re meant to experience in life. Most people (unless they have endometriosis) don’t understand it so it can feel isolating, but there’s others out there who know what you’re going through and are willing to chat. Just gotta find them and reach out on social media, online etc..
17. Journaling Symptoms: Guilty of not being the best at this always, but it's good to track your symptoms to see how they work and operate. It helps not only you plan for it, but also your doctors in how best to handle your care. Take photos of things that make sense to show your doctors! Discharge, bowels etc..can sometimes help diagnose or judge with the images.
18. Next to Bed Kit: Make sure your nightstand is stocked with the essentials for your bad days. Makes it easier to access the items you need when you just can’t get up and get it.
19. Squatty Potty: Another thing that is majorly life changing on constipation days! Get one or you can make your own :) Take a stack of books and stack them at equal heights on each side and put your feet up. The trick is making sure you’re in a squat with your knees high to your ears.
20. Clothing: Dressing for this is key but you still want to look cute! Joggers with a stretchy waist are my go to pants, but wide leg trousers with a stretchy waist help with ease of removal but also comfort and brings some style to the look.
21. Pads: I wear Always Discreet vs. pads. I find when you need to wear them full time for incontinence it just makes it more comfortable. They have different cuts and styles so definitely check them out!

Hey y’all
I got thrown off my horse yesterday and hit my head pretty damn hard. I think I lost consciousness for a moment, but nobody saw so we don’t really know. I went to the ER yesterday evening and got the official concussion diagnosis from the doctor, but strangely I woke up feeling fine.
I have the typical muscle soreness that comes with eating dirt, and I’m a little tired, but no headache or dizziness or nausea. Last night I had a headache and some mild nausea. When I got up after being tossed, I felt super lightheaded.
Should I expect some more headaches as I heal, or are we good to go? Part of me is hopeful that this is it, but I don’t wanna jinx anything. Should I be more worried?

Hey, guys. I’m looking for some insight, if possible. It was recommended to me on a Scleroderma board that I consider reaching out on this board for other patient’s insights on their own experiences with seronegative Sjogren’s syndrome. I know we're all laymen and I am expressly not looking for a diagnosis or for whether or not I have Sjogren's; just anecdotal input based on your own experiences. It’s been suggested that I may have seronegative Sjogren’s, as opposed to scleroderma, since I don’t have the sort of skin changes or Raynaud’s that’s typical of scleroderma.
Here’s my history. Any insight would be enormously appreciated; I’ve been very sick for the last year, and I’ve ruled out anything that isn’t autoimmune.
I am Anti-centromere antibody positive, with a positive ANA (1:320 Centromere). I am negative for Sjogren’s antibodies and for Rheumatoid factor.
GI: extreme nausea (it was worse back in Jan/Feb, when I believe that whatever I had was in a flare; it’s since ebbed considerably so that I can leave the house and I’m not popping Zofran 24/7). Intermittent but total loss of appetite. On/off constipation or diarrhea; much less common than the nausea, and much less disruptive.
MUSCLE: Muscle pain/inflammation. Sore hands and feet. Swollen hands.
GENERAL: Fatigue. Dizziness. Weakness. Malaise, like a bad flu or a hangover.
CARDIAC: High HR (up to 150bpm) with dizziness and weakness. Palpitations that come and go.
SJOGREN’S-SPECIFIC: Dry mouth, no matter how much water I drink. Dry, itchy eyes. Gynecological dryness/coarseness, which is abnormal for me.
NEURO: Eye twitching that crops up only when my inflammation crops up (every 3-4 days, lasting for 3-4 days, then off again). Lip twitching (much less often, but very noticeable). Paresthesia in arms and back (from inflammation I'd imagine). Occassional bright flashes of light out of my left eye–the same eye with the twitch.
This is an especially important note, because it was what originally made me discount Sjogren’s and lean more into systemic sclerosis: in Feb ’24 I had a high CRP of 19/Sed rate of 20, which dropped to a CRP of 13 in April. What I’ve read (which with respect to Sjogren’s admittedly isn’t much) indicates that Sjogren’s does not typically cause high CRP and whole-body inflammation.
Infectious disease panel is clear. Abdominal CT/ultrasounds/chest X ray are clear. Gynecological/hormonal issues are clear. Labs are fine.
Has anyone here had anything remotely similar to this with Sjogren’s? The presence of the anticentromere antibody + my acute GI symptoms led my new rheumatologist, in our original consult, to jump to systemic sclerosis. How common is seronegative Sjogren's? Do other patients suffer such systemic, acute symptoms?
I can't tell you how much any insight, however small, is appreciated. I've been extremely sick; I'll be following up with my rheum later, but until then, insights from other patients are pretty invaluable. Thanks, guys.