In terms of inmunity. Like I have been working from home. I was already avoiding social contact before covid, but after covid it just got worse. I have hashimoto's and I saw all the problems that people were having with covid infections, as well as some people overreacting to the vax. There is something about the virus that causes long term side effects.

The thing is, I think I finally caugh it last april, 2 days after a kid relative visited I had the usual symptoms, and had an over reaction. It was 10 days of hell. Im worried I have long lasting side effects, like lung damage, or some sort of reflux, as I have been having cough with green mucus daily for like 2 months. Im waiting for appointments.

I was reassessing the situation. Okay so what if avoiding social contact for a long time has made my inmune system worse? I have been able to recover mostly from the viral onslaught, it was pretty brutal, but I have now this side effect of mucus and some cough daily. I wonder, if I was not avoiding it, would i have not been attacked as much? I don't know anyone that has had a vaccine since 5 years ago (basically got the first one to not be bothered by QR code thing back then). So in theory I am now more protected as I have natural inmunity from the latest version of the virus, assuming it was covid, but it probably was as I had a distortion of smell sense from hell that luckily is mostly recovered. Yet most people seem to not have long lasting side effects, at least from the people that go out and I see once in a blue moon.

I have been avoiding social contact for a long time. How do I reintroduce myself back to society to have a better inmune system? Or do I just risk reinfections and getting worse? How do you find a balance were you are not getting wrecked by the latest covid variants with a decent social life? It just comes down to luck and being genetically bulletproof? How much should you avoid exposure to viruses vs "getting trained"? We don't "get trained" by getting Evola for instance. Of course covid and so on aren't evola, but for some people every reinfection adds up and then they finally snap and end up in the covidlonghauler subreddits, and you never know you are one of these until it's too late, so I don't know what to do here. I feel like if I continue to live in a bubble, it will just get worse. I would like to go to the pool, get some sun and exercise. I am 36, male, skinny-fit, but now I have this mucus cough thing for 2 months and im worried I have lung damage and I may get infected again easier, and if I start going out which involves going in a train to get anywhere interesting, I will risk reinfections and potentially end up worse.

TL;DR: How do you reintroduce yourself back to society if you have been avoiding social contact for years, and want to go the pool and get some sun, and this involves going into a train? Is my inmune system compromised after this? I had a potential covid infection in last april, it was pretty terrible but survived, I had distorted smell sense and all the usual symptons with some cough attacks, mostly recovered after 2-3 weeks, but for the last 2 months or so I have cough with mucus and scared I have broncquiestascies or some sort of permanent damage that will make me reinfect easier, add the fact that my inmune system is probably not trained from avoiding people and if I start going out im scared I end up reinfected with stuff and end up worse but at the same time I think if I stay in a bubble it will be worse long term so I don't know what to do. I have hashimotos in terms of autoinmunity btw. I have 88mcg eutirox.

AGHAHGSHFJFJFN OK SO I DIDNT GET ANY ANSWERS FROM MY RHEUMATOLOGY APPT!!! HE JUST SAID "yeah u have fibromyalgia lets run a few more tests to see if u have a specific autoimmune condition" WELL THE ENA PANEL WAS FUCKIN NORMAL AND MY SHIT WAS STILL FUCKED UP!! SO I GOT GIVEN FLEXERIL & DICLOFENAC. WORKED FINE FOR ONLY TWO FUCKING DAYS. NOW IM BACK TO FEELING LIKE SHIT AND FEELING LIKE I HAVENT GOTTEN ENOUGH SLEEP. MY NEXT APPOINTMENT IS IN TWO MONTHS FUCK MY LIFE

I just have to say this. Dealing with chronic illness, people that can't handle negative things bug me so much. It is one of the reasons we mask our symptoms because people can't handle it. ugh

I guess in a different country I'd qualify for disability and its claims, but in India, not so much. I have 'allergies' (as per the allergy test) for at least 57 different foods, and other substances such as cotton, dust, and cockroaches. Because of that sheer number of triggers + overlap, I am just constantly tired and sometimes sick for 4 days a week. I cannot keep going on like this if I wish to have a career and survive. None of the OTC allergy meds work, and only painkillers work at times. I just stay groggy and low energy and unenthusiastic and irritable ALL DAY. idk if this is because of cPTSD or some other disorder like MCAS or just allergies.

IgE is 411 IU/ml.

IDK if they are allergies per se because, different foods give me different reactions, or rather, some have drastic reactions and some do not. e.g., Cow milk and its products give me muscle cramps and intense muscular pain at times, and joint pain. Clarified cow butter can make me instantly dizzy and sleepy and fully feverish. Peanuts and some other nuts give me almost-asphyxiation (my throat tightens), my head spins, and I feel sleepy and dizzy. Other foods that I am allergic to do not give me muscle pain but fatigue me that I'd rather sleep. Note that this is not as drastic as feeling instant-sleep by cow butter. I rarely get any skin reactions.

tldr for backstory: grew up under extreme abuse, have anxiety, slept in dusty, moldy sheets, ate rotting food, drank dirty water; deficient in few vitamins now, and idk to what I pinpoint my conditions to, and how to heal from these.

I'll edit this if I remember some important detail. please ask me anything that might help identifying the issues.

Below is some backstory in case it helps with the hypotheses:

I am 28M, 174cm and 95kgs. I grew up in an extremely abusive household (getting beaten and shouted at for hours) and faced extreme abuse in school as well (the word 'bullying' does not cut it; I'd be groped all over and shoved and twisted again for hours back to back between class breaks).

My maternal grandparents were with me until I was 13 who gave me nutritious food. They left, and my mom would just cook the most random stuff that would qualify for prison food, and sometimes even cook veggies that has kind of been rotting. No proper nutrition since then.

I had high energy (probably due to high adrenaline due to abuse) until I was 18. I would walk for miles and miles without tiring, and work/study for 13-15 hours a day. Two weeks or prior to my 20th b'day, we stopped getting purified water since we did not have enough money, and started drinking a little bit dirty water without any boiling and processing. A week after my 18th b'day, I felt extremely dizzy and rushed walking home, and could not get up for hours. My mom did not attend to me, and my friend came home after many hours to give me meds. This same sudden dizziness happened another time as well. This same month once my entire leg was too numb that I was not able to walk for 5 minutes. From this point onward, my tiredness and fatigue has just been increasing year by year.

To note, my mom has already been feeding me improperly since I was 13. Please do not ask why I did not cook for myself; I was not allowed, and I was constantly abused.

Since it was just me and my mom, I tried to keep the house as clean as I could. But even then, rooms were extremely dusty, and since I was tired all the time, sometimes I'd not change sheets for months, and I guess I was sleeping on dusty, moldy sheets for a few years.

At this point, we were eating both improperly and very less as well due to no money. I started looking for a job, and tried OTC supplements with no avail. Then I thought that maybe I am iron deficient, and started Iron syrup, and that seemed to give me a little bit energy. This is also when I tried eating more peanuts to get iron and other nutrients from some street vendors.

From age 20-23, my energy would ebb and flow. If I ate something I was extremely allergic to like peanuts, I would just be so drowsy as if I were on some drugs, and even two cups of coffee would sometimes not be enough to keep me awake. I could not sleep in office, and how many sick days could I even take. Because of this, just battling drowsiness the whole day, I'd be backlogged, and then I'd panic-work to meet deadlines on weekends. My anxiety which was already high increased even more.

age 20-21 my feet would go numb if i wore something too tight, and i continued iron syrup intermittently.

age 21-23 was also when it was lockdown, and I was with my mom who by then had gone fully schizophrenic, and if she weren't shouting at me, she would be shouting at her voices. Still no proper food. I am somehow trying to keep up by eating protein and fruits from outside.

age 23 marked the peak of my fitness wherein i was clocking close to 17 miles of walking every day. This was happening, and also me feeling fatigued while working. Actually, the only time I'd not feel fatigued was when I'd walk. Mainly I had a lot of anxiety and anger and that was enough to make me walk, but I also wanted to burn fat and I kept pushing myself. But it did not feel like anything since my feet would not hurt.

This went further downhill when one fine day I had an intense, out-of-the-body panic attack at age 23. After that panic attack, I felt even more tired than usual. My psych suggested that I move out, and I did. In the midst of figuring out moving, I stopped walking for miles, and now it has been 4 years since I have walked for miles. I can barely walk one mile without heaving these days.

Ever since the panic attack, I have become super-sensitive to caffeine (or maybe I have connected with my body and can identify when I am jittery and anxious and I do not suppress my emotions lesser now, idk?)

Now, age 23-28: I am low contact with my mom. I cook for myself and I am trying to keep my house as clean as possible. But unlike age 20-23 wherein I felt fatigue for only 4-7 hours a day and could make up for lost time by working during the rest of the day, now, I feel drained for almost 8-10 hours a day. My main deficiency as per recent reports is Vitamin D. I am yet to do a thorough mineral panel. I have lost a bit of muscle, I have gained fat, I cannot walk for even a mile, and as I said, I am just constantly groggy and low energy and unenthusiastic and irritable ALL DAY.

Please help me out.

I'll edit this if I remember some important detail. please ask me anything that might help identifying the issues.

Well, I’m hoping my new treatment will help my oral erosive Lichen Planus. I researched it and it said it would.
I went through to my allergist when I was having health problems. She saw that I’ve been sick too many times in a short timeframe. So she sent me to have my auto immune system checked. Came back deficient. So she sent me to have the pneumovax 23 vaccine. I went and did more blood work and I am still deficient. I have been diagnosed with Primary Immunodeficiency. PI
So, I am having infusions of immunoglobulin antibodies. IGg Once a week for the rest of my life. That is the extreme part, plus the fact I have to learn how to do it. I’m not a nurse.
Yes, I’m hoping this helps me from getting sick frequently. But I really hope it calms down my mouth. I’ve been in constant pain for years. I look like those horror pics you can see online.
So, I don’t know if y’all have checked into this for yourselves, but you might. It’s expensive, but for some reason the company pays for it after I meet my deductible. So it’s not that bad.
I just wanted to share it here since I feel for everyone. Blessings from Texas.

I’m currently going through an autoimmune workup and wondering if anyone can explain the significance of a positive lupus anticoagulant test and a high Russel viper venom time test. Google is confusing and I’m wondering is someone can explain it better to me on here because I’m just overwhelmed trying to figure out what’s wrong with me.

If you have been diagnosed with Lupus, what bloodwork came back abnormal? Just curious what combination or how many abnormal results can result as a diagnosis. I’m having a follow up with my rheumatologist in a couple weeks but I’m thinking there isn’t enough in my bloodwork for a diagnosis yet.
ANA positive 1:160, positive lupus anticoagulant, and low c3. I had my c3 tested twice and one time it was low and the next time it was in the normal range but just barely. The rest of my bloodwork was normal.

I feel like I’ve been chasing for a diagnosis since March and the only consistent answer is fibromyalgia which is now potentially debunked due to a lumbar radiculopathy diagnosis. I’ve been told Hashimoto’s to now it’s dormant Hashimoto’s and not causing symptoms. Had various elevated antibody labs one month and went nonexistent within a few weeks. In my third rheumatologist and he seems like he truly cares and wants to figure things out like my PCP.

I feel so medically burnt out but I want to feel better, have an actual game plan, and enjoy life again, especially since this start a few months into being engaged. Any tips, tricks, advice, etc. for staying afloat until all the stars align?

I have a question I was put on 200mg of hydroxychloroquine back at the end of April. Then in mid June it was upped to 400 mg. I know it takes like 3 mos for the hydroxychloroquine to kick in. Does it take another 3 mos because my rheum
Upped the dose?

i have life changing symptoms to the point where i am bed bound and i have been to primary care , cardiology , rhumetology , endocrinologist , and probably some others and all my blood work comes back fine , they never find literally anything wrong with me and 90% of the time it ends in telling me i might have depression when i have shown them literal pictures of my flare ups. it is insane and i need my life back im willing to go anywhere or go to any doctor to solve this but i have no idea what to do. any advice please?

This is starting to feel ridiculous. Every few weeks I get another diagnosis, and I still have more tests coming up. I'm beginning to feel like every worst-case scenario is actually happening to me.

So far I've been diagnosed with **Hashimoto's**, **autonomic** **dysfunction**, and **Sjögren's**.

Today I tested positive for **RA**, and of course Google says that this particular RA antibody is associated with a more severe, progressive form of the RA.

I'm also being tested in the next few weeks for narcolepsy and small fiber neuropathy.

I'm 33 years old, not 100!!

If anyone has a few kind or encouraging words, I'd really appreciate them right now. I honestly don't know what to think anymore.

Most of the people in my life don't even know what to say to me anymore, so I'm all alone in this.

BTW I Also feel so sick, how am I supposed to deal with all this if I can't even sleep at night from all the pain?

Last fall I was diagnosed with EOE, and thankfully after a second endoscopy my insurance approved dupixent for treatment and it's been going okay.

Overlapping symptoms also included experiencing blistering, painful, swollen gums. The doctors thought the symptoms could be related to the EOE, but after gum biopsies it was determined to be unrelated and a totally separate AI condition.

I've just been diagnosed with a second, fairly rare autoimmune condition Cicatricial Pemphigoid Oral (also called Mucous Membrane Pemphigoid MMP). I'm thankful to have a diagnosis, but quite overwhelmed with having to manage two AI conditions.

So treatment is a daily dose of doxycycline...basically forever. I don't know how I feel about being on a daily antibiotic for all time - this, my "venting". Of course I also will be taking a probiotic to help offset the gut damage of the antibiotic.

The treatment makes me a little wary - apparently in the "cycline" family of antibiotics there's something that helps to rebuild the collagen that the immune system breaks down (mine is just Oral, thankfully. It can also occur in the eyes and genitals). The oral pathologist said that the treatment seems strange because it's not treating any kind of bacterial infection, but it can completely heal my tissues/gums and stay that way.

Just wondering if anyone else out there has this AI condition and how you are managing your symptoms.

Hi everyone, I am just looking for a bit of support and to see if anyone else happens to be in the same boat as I am.

I have a diagnosis since September of 2024 of rheumatoid arthritis. However, I suspect I also have lupus, and have for a long time. I just finished an appointment with a new rheumatologist and basically the doctor told me that I'm having "low positives" for several different diseases, but that just makes it more of a general autoimmune disorder with no official diagnosis. I am already taking Plaquenil for the RA, so she said that "might be helping."

I have low positives for ra, lupus, scleroderma, and aps. I literally just feel very gaslighted and like I don't fully even understand what this all means. When I asked she just kind of said it's probably not a big deal.

Basically I'm testing positive for these things, but not positive enough to be an issue? Has anybody ever had this type of conversation with their rheumatologist?

*Update: Thanks for your replies. I'm glad someone mentioned "undifferentiated connective tissue disease" because I remembered the Dr mentioned that in my appointment. I have started researching more on my own so I can better understand what this means. Thanks for your help!

Been on prednisone for 3 months (up to 40mg) and finally have made it down to 10mg without feeling horrendous. So excited to see the light to be off of it for hopefully a long time.

What do people recommend for post-Prednisone recovery, such as getting rid of the water weight (+puffy face), feeling mentally normal, darkened facial hair fading, etc? How long did it take for the main side effects to subside, and anything to speed up the return to normal?

My arm actually feels heavy, it's like my blood is pooling in there. It's awful.

I think I tested negative for vasculitis? But positive for some APS antibodies. However I apparently had a sinus infection at the time so we have to test again in a few months, but that's the standard anyways.

I don't see vasculitis or APS mentioned often, so just wondering what it's like and if this seems on par 🥲

Third picture is upper arm right below my shirt sleeve, fourth picture is my elbow where I noticed little reddish purple spots start popping up today. I'm pretty sure I see more forming.

Also worth mentioning I finally see a dermatologist on Aug 3 who can hopefully help figure out what the hell is going on.

Hello! I was diagnosed with Crohn's disease last year, and have been on Humira for it for about three months. It seems to be working okay, but I've just recently been diagnosed with oral lichen planus. I have a couple of questions: has anyone else had this crop up while on a biologic like Humira? And how do you cope with the discomfort? I switched toothpaste to Biotene, on my dentist's advice, and I'm trying to avoid foods that make it hurt worse, but... I'm sort of at a loss right now.

Hey,

Hope you’re all doing better than me! I am really struggling atm and need somewhere to put this.

Here it goes…
I’ve been dealing with symptoms for over nine years: fatigue, brain fog, joint swelling and stiffness, rashes (sometimes with blisters), bruising, random discolouration and recurrent patella dislocations.

In 2022, rheumatology diagnosed me with sarcoidosis. I didn’t think it fit and asked for a second opinion. The second rheumatologist agreed. I saw a different rheumatologist that specialised in Sarcoidosis and referred me to dermatology because they suspected PMLE (polymorphic light eruption) and my old diagnosis hidradenitis suppurativa (HS) could be contributing to the symptoms that didn’t include my skin.

After that, I went back to my original rheumatologist. She diagnosed me with fibromyalgia despite me not having the typical tenderness. Her advice was read “the body keeps a score”, practice mindfulness and move your body. She later wrote to say she no longer believed that diagnosis was correct, but also didn’t think there was a unifying inflammatory condition. She referred to neurology and I diagnosed with Functional Neurological Disorder (FND).

The problem was that none of those diagnoses explained the very specific flares I kept having. Different triggers caused visible physical changes. I have dark skin, so redness and skin changes aren’t always visually obvious, but the swelling, post inflammatory hyperpigmentation, textural and other changes were always visible. Even during milder flares.

After eight years, I was finally diagnosed with PMLE in July 2025. I already had HS, my skin conditions were finally identified, but every time I brought up my joints I was told it was probably fibromyalgia. One doctor said, “Your bloods are better than mine.” The frustrating part is that my blood tests have never been completely normal. Over the years, I’ve repeatedly had mildly raised ACE, ESR and CK, occasional raised bilirubin, and persistent iron deficiency, vitamin D deficiency and anaemia despite treatment attempts. I reacted really bad to an iron infusion 2024.

By September 2025, I’d been flaring since around May. I was so desperate that I walked into the dermatology department without an appointment and begged for help. Instead of dismissing me, the clinician listened, asked lots of questions and started me on 200 mg hydroxychloroquine for PMLE. Even though, it was prescribed for my skin reaction to UV. First month was rough but I was starting to feel better by the end of November.

Then, in December 2025, rheumatology discharged me completely and refused further NHS follow-up for my joints.

Fast forward to this month (July 2026). I went to my GP because I felt generally unwell. I’d become so used to the joint swelling that I barely mentioned it anymore. The doctor looked at my hands and ankles and immediately said that whenever they swell like that, I should be seeking medical review because it isn’t explained by any of my recorded diagnoses. She contacted photodermatology that day. Within weeks they had:
Increased my hydroxychloroquine from 200 mg to 300 mg.
Prescribed SPF 50.
Given me a rescue course of prednisolone. I’m allowed 2 per annum.
Moved my patch testing forward.
Booked three appointments within a month with photoderm.
For the first time in almost a decade, I actually have what feels like a proper treatment plan. No official diagnosis, but actual treatment.

Don’t get me wrong, I’m grateful for finally receiving treatment that is not completely focused on psychology. But I’m also so incredibly PISSED!!!

For nine years I was repeatedly told variations of “it’s fibromyalgia,” “it’s FND,” “it’s stress,” “read The Body Keeps the Score” I started doubting every symptom. Now I struggle to recognise when something genuinely needs medical attention because I’ve spent years convincing myself I was absolutely insane 🫠

The hardest part isn’t even the physical symptoms anymore. It’s the medical trauma. I’ve completely lost trust in myself. I shut down around healthcare professionals even though I don’t want to. I get quiet or extra blunt, and I hate it, but my body doesn’t even freeze anymore. My nervous system goes insane - palpitations, shaking, hot body, sweaty.

I’ve asked specifically for PTSD therapy around medical trauma because that’s what dominates my life now. Instead I’ve been referred to DBT. I’ve already spent years in NHS therapy learning the same coping skills. I know the grounding techniques. I know the breathing exercises. I know the CBT and DBT skills. The problem was never about the tools or my psyche. It was the constant invalidation of physical symptoms, medical gaslighting. It’s the flashbacks. It’s the flashbacks. It’s the f\*cking flashbacks!!!

I’m 30 now. I still live with my mum. I haven’t been able to work for years. I’ve lost friendships, my confidence and the career I was building. Every time I start rebuilding my life, my health knocks me back down. Then I convince myself I’m imagining it all because that’s what I’ve been taught to believe.
I’m sharing this because I can’t imagine I’m the only person who’s been through something like this.

Has anyone else had years of being told it was functional, fibromyalgia or psychological before eventually getting a treatment plan that changed things? And if you’ve experienced medical trauma, how did you learn to trust your own body again?

I’ll attach some photos of what my flares look like in the comments. For reference on what was constantly being ignored. Included some of the art I was able to create the last year to cope with the flares to lift the mood.

If you’re going through something similar, I’m genuinely sorry. I hope we all make it through.

Hello all, I am desperate and don't know what to do, I want to share my experience and many health problems maybe someone with similar symptoms can help me in any way possible, I am not seeking medical advice but maybe someone with similar symptoms comes across my post

I am a female and was diagnosed with early puberty and put on puberty blockers at the age of 4, but my parents only administered 3 monthly injections in total and stopped the treatment, I had a normal childhood and puberty, got my first period at 13 but I always had weird symptoms, random skin rashes, pimples filled with puss and blood on my scalp, ears and legs occasionally, chronic constipation that had led me many times to the ER, excessive sweating, high heart beat, I was always tall and slender no matter how much I eat, I had thick wavy hair that kept thinning with the years, I developed severe anemia and was always bloated, my nails and hair grow fast but are thin, my nails are curved and this had led me to do surgery on my toes 5 times, later I developed dizziness and sensitivity to light and bright colors, I have low blood pressure all the time especially after meals, I had insomnia for a couple of years then followed by severe somnolence, next thing is derealization since 2012 and never once left until today, and then my lung collapsed a total of 5 times before getting pleurodesis on both lungs, I was diagnosed with Graves in 2017 with hot nodules, I always have very low TSH close to 0 and normal t3 and t4, I started Dimazol 10mg since 2024 with no improvement, in 2025 I developed a neurological disorder, CIDP and took steroids, still have CIDP today, I am in a relapse episode and we are trying to work this out with steroids and immunosuppressants, I still have all the symptoms and everytime there is a new symptom popping out, I am wondering if I am missing something or does Graves cause many health issues?

I am thinking of checking functional medicine too for the microbiome. I feel hopeless and no one seems to understand what is going on.

Can anyone suggest good functional medicine doctor for gastric,Hashimoto. and Rhinitis in Bangaluru. Thank you

Has anyone found an insurance company that doesn't immediately try to blame every single issue on your immune disorder? I want to change mine because they've tried to link everything, even bacterial infections.. it's been an infuriating year having to argue constantly.

Need good rheumatologist, gastroenterologist, psychiatrist and a neurologist in Dehradun.

I hope I’m using the right tag for this since it’s questions and some needed advice.

I did a biopsy and was diagnosed when I was 16. The most evident symptom I have is Gattron’s papules that cover my joints, more so my hands and elbows. I experience the fatigue, muscle weakness, short breath, all the things that come with it. My condition is pretty mild in comparison to other cases I’ve read about.

Im 22 now and over the years I had small little flares of the papules on my hands and elbows, noticeably weaker on some days too, difficulty swallowing etc. But recently its flared up bad on my hands of course, elbows and now my knees. Not as bad as when I got diagnosed. I didn’t think much of it until I slept an entire day. I can’t even do naps because of my insomnia so that was pretty rare for me. It made me realize that this condition *does* affect me. It sounds like a silly realization but after I was diagnosed it was sort of like an “Ah okay, that explains it. Anyway..” type thing. Just shrugged off. But again it’s mild, it comes and goes so there wasn’t much worry.

I’ve been doing some research now that Im bumpy again. I’ve read some medical articles and seen some overviews about other related issues that could come with it. Two of the things that standout are higher risk of lung disease and cancer. They state that its more common in adults for those issues (which I believe is just Dermatomyositis) rather than kids with JDM. From what I read this autoimmune disease affects younger kids (5-10) or older adults (40-60). im in an awkward position as a 22 year old.

So I have some questions: anyone out here in a similar position as me? I feel much more like an outlier because of my age. What are your experiences with it? What else should I know about JDM? Is the cancer/lung disease relevant? Im so curious since it is rare.

For the small advice portion: Should I go back to the rheumatologist? I haven’t been back since I was diagnosed, so about 6-7 years. My case isn’t severe and has remained mostly the same since. but reading about the risks of heightened cancer and lung disease has been in the back of my mind recently. My Mom had thyroid cancer and my brother has had cancer twice. The second time being a little over a year ago. My asthma has been worse for the last few months too.

Any and all answers and advice is welcomed! Thank you!

About two months ago I took a a Depo-Medrol shot (80mg), prescribed by my doctor to try to help with my mystery autoimmune issue. And it did help. I still have some other chronic illness (The POTS/EDS/IBS/All the S’s super combo), but frankly this is the least disabled I’ve been in years. A little over a month into it my symptoms started coming back, which I expected as my doctor told me I would probably feel better for about a month or two, and tomorrow I have my return appointment.

I don’t know much about steroids, or rheumatology, or really anything, so I had built hope that I would be able to ask for some sort of similar continuous treatment and feel like this long-term, despite the fact that the doctor had literally told me last appointment “enjoy these two months” because it wouldn’t last. I was hoping she meant the effects of the steroid wouldn’t last, but in hindsight I think she meant she didn’t want me on steroids continuously.

I am feeling bad physically right now, so I came to reddit because the chronically ill communities here make me feel seen. Then I read a post and some comments about how difficult it is to get off of steroids, and how it made them feel worse long-term, and now I’m scared and so hopeless (Edit to add: The post I saw was not from this subreddit, and was old. This is not @ anyone). I know this is a weak moment, I know I am tired and sick and in pain and now is not a time to think, especially not over one singular reddit post, but I’m scared that there will never be any options that can make me feel okay long term. This was the first treatment that even helped at all that I’ve tried, and I was so happy with it. I was already fantasizing about taking a full term worth of college classes not just my average 1-2, and actually going in person rather than just self teaching from bed, and washing my hair regularly, and doing a sport, and getting a sturdier backpack without having to worry about the extra weight being too much for me, and being able to retire my cane, and a gazillion other things.

The appointment is tomorrow. I can talk to my doctor and ask all my questions tomorrow, so I really shouldn’t worry until then, but unfortunately I am upset currently and wanted to hear from more veteran patients. I don’t even know what I want to hear though.

Does anyone know a good symptom book that’s at least a year? I’m so sick of these 120-day books but as my lupus and arthritis go hand in hand, I really can’t write each and every symptom daily or have a billion loose papers. Is there a year symptom book on the market?