Depressed, Feeling Doomed

It'll be OK.

Just drink lotsa water and half of your symptoms will disappear. Fat people who drink less than 8 litres of water each day are doomed to health problems. It's the easiest and cheapest life solution yet isn't fancy enough to convince fattards that it's effective.

Drink lotsa clean water.

I'm sorry you are going through this OP. Here's a hug and focus on getting better.

Your first paragraph would sound like the idea situation to many. In fact, I was reading it with a little envy.

You've got a lot to contend with, for sure, but it does not seem insurmountable. Try to stay more in the moment and less in the future. Tomorrow, I want you to spend the whole day thinking of and logging ways to distract yourself when you get worrying. things you want to watch, couses you want to take online, books you want to read, people you want to connect with, things you want to do when life is normal again. write it up, action it.

Talk to your therapist, OP.

You and I are the same age.

Keep telling yourself that you're doing all you can, that you've got professionals on board to give you the best possible of outcomes. These feelings of doom will eventually pass and your health will improve, and all this will be a memory. Learn from it and live your life to the fullest.

As trite as it may sound, each day is indeed a gift. Don't waste any worrying about things you cannot change. Simply do the best you can do and live your life.

^^ Not to invalidate your feelings, because they are certainly valid. But just as a different perspective.

I hope you can find a way to feel better.

1) if you were able to meet some people here, I think you would be among friends who care.

2) Klonopin is great for handling anxiety, but the fact is that it’s a depressant too. Anything that makes it easier to relax can also enhance feelings of depression. It’s a catch-22, because anxiety is also tied to depression.

3) 2020 is having that ‘doom’ effect on many of us. I would suggest finding ways to take the attention off of yourself periodically by helping others. Volunteer. Place yourself in situations where you are needed and valued.

Focus on Voting trump and the Republicans out of office.

R2 I drink water constantly and I am 5’11” and weigh 170, so I’m not ‘fat people.’

R8 Yes, I honestly HATE this drug and I have not taken it for years. I don’t like how it makes me feel. But it is also a mild mast cell stabilizer, and that supposedly helps with my allergic/inflammatory problems. I took a Klonopin at my therapist’s urging when my mother was dying two years ago and it made that day so much worse because I was still in surreal emotional agony and also drugged and in slow motion. I’m not sure it is helping but it does sedate me when I get panicky and can’t sleep or have to work.

I just feel like a trapped rat.

Thanks to everyone for your words of support instead of making fun of me, as I know is the norm here most of the time. I’m so, so, so sad and scared that I am nearing my end here.

At least I’m not suicidal, I guess.

Well, I can’t throw the old standby suggestions of spiral-cut ham, threesome, or even volunteering because of covid. You are fucked.

I’d suggest you tip frequently and spend more than you can afford.

Copious amounts of weed are not indicated for some reason.

We will get through this OP.

You’re entering a bad phase in life. The mid and late 40s suck. Just hang in there, get therapy and learn acceptance.

Wow, OP. I could've written like 70% of your post. You're not alone.

[quote]At least I’m not suicidal, I guess.

Well, it is only September. The holiday blues haven't set in .

Do you know if you have a congenital heart defect, OP? I just turned 30 over the summer, and had to have open-heart surgery last fall to repair an aneurysm in my ascending aorta and root, as well as replace my bicuspid aortic valve. Doctors discovered my bicuspid valve when I was a toddler, so I have always known about it—the aneurysm developed as a result of the malfunctioning valve in my mid-20s. The aneurysm finally reached the tipping point this past summer, and I went through with the surgery in the fall—my cardiologist and surgeon advised me to have the operation ASAP, otherwise I'd be risking aortic dissection, which is most often a death sentence.

In any case, I empathize. I also am a T1 diabetic and had cancer in my early twenties, so I've been through the medical wringer most of my life. Having chronic health conditions is a pain in the ass, but I've found it best to just surrender to what the professionals tell me. You are being treated and facing the problems, which is all you can do.

So sorry my friend but glad you are taking steps to stay on top of it. Anxiety can make a worrisome situation even worse. I think focusing on other things you enjoy can help relieve tension. I wish you the best. Keep us posted. Hugs x xx

Keep posting here op. You aren't alone. We need to have each others back right now. Know that we are here and listening.

After more than a decade of crushing depression (I didn't understand what depression was at all), my life took a real turn at age forty-three. I moved to a new apartment, got a dog, started driving after 20+ years not behind the wheel and changed careers INTO show biz with reasonable success! I was about to jump, but I just managed to somehow outlast my issues.

Yes, I was lucky and physically in good health, but I had given up, then it all changed. I wish the same for you, OP.

R16 I don’t know if I have a congenital heart defect. I only just went to a cardiologist a couple of weeks ago after seeing my doctor. She referred me for three reasons: the arrhythmia (discovered by a lab tech before a CT scan of my heart), the aneurysm (discovered by the radiologist who wrote the lab report) and because of the varicose vein in my arm and chest—my doctor said she has never seen or heard of a varicose vein in this part of the body. I had undiagnoses Lyme disease and Bartonella for years that became neurological and it really fucked my body up—likely triggering the mast cell disorder. I believe those infections were successfully treated, but Lyme can cause various heart problems, rarely including aortic aneurysms and Lyme carditis, or heart block, resulting in sudden cardiac arrest.

The calcium score CT scan of my heart was done because my father had a triple bypass—his “widowmaker” artery was 100 percent blocked—and he has an abdominal aortic aneurysm. He is 70, and so age is a factor, but his father died from a blood clot at age 60, and many men in his family have died from heart attacks. On my mother’s side, my grandmother had atrial fibrilliation, and she and nearly every woman in her family we know of died from strokes.

My cardiac calcium score was zero. That’s a ‘perfect’ score—not unusual at my age (42) and a very good thing. The aortic root aneurysm was sort of discovered ‘by accident’ since the CT scan was looking at calcification. Since the person who wrote the report noted the aortic root dilation, I assume they would have noted any structural abnormalities of the heart if they were visible, as well, even though that was not the purpose of the scan...

I thought the heart rhythm issue and the aneurysm would be the priority concerns for a cardiologist, but they aren’t. She said that the pain on my left side sounds like nerve pain not caused by a heart problem, but she is ‘concerned that something may be obstructing your blood and lymph drainage’ and so she ordered a CT scan of my blood and lymph vessels on my left side. I can’t schedule that scan until I get my blood test results because the CT scan requires contrast and I need healthy kidneys to have that done. I’ve been waiting nearly two weeks for my blood test results.

I also had to schedule a mammogram and ultrasound of my left breast because it is swollen, and the soonest available appointment when I scheduled it was a month later. So at this point, I may not be able to get this CT scan of my vessels until October. And the anxiety of waiting is driving me insane.

I’m naming you “Lucky”.

I'm watching that episode of The Golden Girls (yeah, yeah, I know) where Dorothy tries to help a recluse who hasn't left his apartment since the 60s. I honestly feel I'm on that path.

R22 I don’t remember that one. What season and episode?

It's early on in the 6th season. Martin Mull plays the recluse.

#19 = Leslie Jordan

R22, must be nice to have an apartment you don't want to leave. I'd be lucky to have a shopping cart like the bag lady Rose sees on her way to work.

Hey OP, how are you doing today?

You’re on my mind. Hope you’re better today, if even just a tad.

I'm impressed you are doing squats. Are they weighted back squats with a barbell? you should be proud of that , in any case!l

R27 Just a tad better than I felt last night. Physically, my left arm and breast and my neck are very achy but it’s been worse.

Emotionally...it’s just a quiet Sunday and I am avoiding news and distracting myself here and there.

Thank you for asking. How are you?

R28 I’m not doing them any longer. I did push ups, squats, crunches and some dumbbells (biceps and shoulders) for seven weeks. I could barely do one push up at first, seriously. By the end, I was doing about 120 a day, very carefully not to aggravate my elbow or shoulder joints. But the push ups and the squats started to trigger a thumping heart and then all of a sudden over a matter of a couple of days, I had a major flare up of my mast cell disease symptoms—referred to as a histamine dump—and my body felt like it was hit by a truck. That was over a month ago now and my left side has been hurting ever since and I’ve had tinnitus and hearing loss along with the pain in my neck, left shoulder, arm, chest and sometimes numbness on the left side of my jaw and left ear. Those symptoms suddenly happening again apparently as a result of exercise is what made me ask my doctor if she thought it would be reasonable for me to get a CT scan of my heart, and that’s how the aneurysm was found.

[quote]Just drink lotsa water and half of your symptoms will disappear. Fat people who drink less than 8 litres of water each day are doomed to health problems. It's the easiest and cheapest life solution yet isn't fancy enough to convince fattards that it's effective. Drink lotsa clean water.

Eight litres of water?! I thought it was eight glasses per day. This theory that you need to drink 8 glasses of water per day to be healthy has been in the media for years. Some people have pointed out that there is no compelling evidence that it's true.

[quote][R8] Yes, I honestly HATE this drug and I have not taken it for years. I don’t like how it makes me feel. But it is also a mild mast cell stabilizer, and that supposedly helps with my allergic/inflammatory problems. I took a Klonopin at my therapist’s urging when my mother was dying two years ago and it made that day so much worse because I was still in surreal emotional agony and also drugged and in slow motion. I’m not sure it is helping but it does sedate me when I get panicky and can’t sleep or have to work.

I can't bear to read this.

As someone who has been through A LOT - pills are not the answer.

[quote] I took a Klonopin at my therapist’s urging

She urged you?

[quote]This theory that you need to drink 8 glasses of water per day to be healthy has been in the media for years.

WATER?

i had a swollen arm and claw shaped swelling of my veins in my chest. They busted up a blood clot using Urokinase (sp.?) while i was partially put under. Never was sure how it happened, but caught it in time. No clotting disorder, they said. I was 42 back then (now 63)

OP, did you write a month or two ago about the MCAS? Whether that was you or not, why aren't you on Xolair? I dealt with MCAS - misdiagnosed as ideopathic anaphylaxis for about 30 years - along with 40 ER trips and three inpatient admissions and then a heart attack secondary to one of the worst anaphylactic episodes that led to an implanted pacemaker-defibrillator. This month marked three years with no episodes thanks to a monthly Xolair injection.

I'm sorry to hear about both the depression - which given the illness, you have every right to be - and the Klonopin: it's a shitty drug. You need to see some specialists, especially an allergist/immunologist at a research/teaching hospital. Have you or are you relying on your PCP?

If you haven't, check out this woman's website called "Mast Attack." She is really good at explaining things - far better, in fact, than my "said-to-be-the-world's-leading expert" at the Mass General Brigham.

If you're going to the trouble to exercise OP, you are not clinically depressed. You're like the rest of us. You're fed up, you're scared of what is going to happen if Trump wins reelection, you're probably exhausted. But you are not depressed.

OP, you aren't alone. Many of us are feeling doomed during these times. Please keep up the exercise and stay on top of those health issues, don't stop taking care of yourself. I wish I could give you a big hug.

Repeat after me, OP:

LIVE

LAUGH

LOVE

Hey, OP, I’m here for ya. If you ever need to chat on DL or otherwise, lemme know. I sincerely mean that and I’m sending you positive vibes.

I’m doing OK today. Just ate some scrambled eggs with toast.

It was YUMMY!

I'm so sorry you feel so badly OP. I really am. I'm not much better. And I'll get shit for this but go to Youtube and listen to "You Are Not Alone" from Dear Even Hansen". I know how corny this sounds but it has made it feel better a few times.

Nothing that a good kick in the ass won't cure.

I’m 40 and feel the same way OP. This thread makes me feel less alone. Sending you a hug.

I think you've hit a chord here OP. Lot of folks are finding it hard for different reasons. Some are better at hiding it and putting on a front that everything is okay when it's not okay at all. Health, finances, relationships, you name it. Feelings of isolation, the politics of our time - you add it all up and it's a wonder any of us are able to keep our sanity. As others have suggested, try to take it one moment at a time - follow best medical advice, be crazy disciplined with diet, sleep, exercise (if appropriate). Easier said than done but....you can do it.

It’s a tough time for everyone and coping with anything outside of, well, all the outside crises can feel insurmountable. I’m so sorry you’re going through this, I know just how you feel. It’ll be okay, eventually. Holding you in the light, as we Quakers say.

Try God. He’s always there.

God only helps the gullible and easily influenced. Don't waste your time.

I hope your therapist is doing cognitive behavioural therapy with you to help you stop yourself projecting doom into the future and just deal with what's already on your plate. It is a big shock to discover you have an aneurysm, but all of the other things you're describing are just symptoms so far. Your doctors are being extremely thorough, but that doesn't mean they expect to find something awful, just that they intend to rule out all such things. It may be that your final results for all your other symptoms are unalarming and treatable.

Externally, while I think none of us like to get too chirpy too early after the year we've had, it looks very possible the sun will come out in a few short months. Biden could get in and the vaccine could be not far behind that.

Don't anybody drink 8 litres of water a day. You'll get hyponatremia. 8 glasses is much more like it.

Are you a man with breasts OP, or a lesbian with hypochondria?

R35 Thank you. I have not been seeing a mast cell specialist for a few reasons that I’ll explain, but once O get through this new battery of cardiovascular testing and making sure I don’t have inflammatory breast cancer or something wrong with my lymph, I will probably pursue that.

I was extremely ill beginning in my early 30s. “Probable MS” was the direction doctors were going with testing, but years of tests didn’t show evidence of MS or ALS or any other neurodegenerative disease. Along the way I got random, unrelated diagnoses that were basically explanations of symptoms but not what was causing them, including cluster headaches, Meniere’s disease, abnormally brisk knee-jerk reflexes and a blurry right optic nerve head. I started seeing a psychiatrist at this time—10 years ago now—because the first neurologist who ran some tests told me it’s possible I have early-stage MS and show no signs in labs, but his money would be on anxiety causing problems and he recommended a vacation and therapy. I was a little offended but I wanted to be well and so I found a therapist and she has been a great support for me through all this.

Flashing forward to 2015, when I absolutely felt like my body was shutting down and was in agony, I found my current doctor, who ordered more blood tests than I knew existed, and she diagnosed me with Lyme and Bartonella, two tickborne diseases. I had Lyme in 1997, and it seems that I may not have been adequately treated to cure it—or I could have been reinfected. In any case, persisting Lyme is a controversial diagnosis but extended antibiotic treatment essentially cured almost all of my neurological problems. It worked. But it didn’t cure all my problems and after testing my tryptase level—very high—because of my lingering symptoms, we realized I have a mast cell activation disorder.

I responded so well to over the counter antihistamines that I didn’t pursue it further. Honestly, a double dose of an H1 blocker and an H2 blocker got everything in order for me. I did take cromolyn sodium for a while but it was inconvenient in my job environment a lot of the time to carry and take those vials and it didn’t seem to help and it made me gain weight. But after ranitidine was recalled by the FDA, it has not gone so well.

Between 2010 and 2015, I saw an allergist among about a dozen different specialists. She proved to be useless. I told her the symptoms that seemed to be allergic symptoms to me. She did a prick test and told me to avoid cats. I told her I have breathing problems sometimes and she had me breathe into a machine and told me I have 150 percent lung capacity and have nothing to worry about. She then told me I am healthy and gave me a neti pot and a steroid inhaler as parting gifts. It was a weird experience and it left me feeling like allergists probably are useless.

My doctor has treated me better than any other doctor I’ve seen and she spends a lot of time listening and then researches issues and tries to identify root causes. So I am incredibly grateful. She seems like a guardian angel to me in a way. But my body is suddenly fucking itself up again. I would like to find a specialist who can effectively treat a mast cell disorder—I don’t know anything about Xolair and I don’t think my doctor would go in the direction of an injectable drug and would prefer that I see a specialist—but I don’t really have any leads. Years ago, a couple of people online recommended someone in Maryland and after looking at his rates on his website he seemed like an extortionist and so I didn’t pursue it. (He charged something like $1,800 for an initial consultation and $800 for subsequent appointments and took no insurance.) I know Johns Hopkins has mast cell disorder specialists and I have considered approaching them but Baltimore is quite a distance away for someone in DC with no car, although not out of the question.

Why don't you:

1) get some fun dildos, clean your ass (and your vag, if you're a chick) and plow your holes.

2) go get a normal massage - anti-tension massage. Not a sex massage.

3) soak in a hot bath

4) watch some cheering nostalgic movies

5) walk around in nature. if the weather permits, but your feet or body in direct skin contact with the ground

repeat the steps above.

OP I'm sorry you're not well. IMO your exercise routine needs to be modified. I suggest you do aerobic exercises like walking or moving around to help circulation, and stop lifting weights or doing resistance for now. Maybe some mild push ups standing at a kitchen counter top. But yes, try to lose weight and eat healthier and drink fluids. Take vitamin D. It really helps with Depression. and listen to the doctors. Being ill and shut in is horrible.

I hope you get well soon, OP.

R51 I can’t do any kind of activity that heats my body up. Whether it’s outdoor heat or exercise, when I heat up, my body dumps histamine and I go into anaphylactic shock. It always happens the same way: my skin itches, my nose runs, my vision gets blurry and I get light headed. Then my arms and legs turn bright red (flushing) and then I break out into hives. I start to cough as my throat becomes inflamed. Sometimes I have Parkinson’s-like tremors when I am very hot, and I literally shake uncontrollably as if I am having a seizure until my body cools down.

I have made the mistake many times now of going many months of feeling well and being frustrated that I can’t exercise, and so I just do it. Most recently was what I described above. The reason I did the non-cardio exercises is because of the anaphylactic reactions I have when I do cardio.

A year ago last spring, I had been feeling really well for many months, and I thought fuck it, this is insane not to be able to move, and I went down to the gym in my office building and got on the elliptical machine. I would exercise moderately, I thought. First sign of an allergic reaction and I will stop. Around 12-15 minutes I was itching and my arms were red. I kept going a couple of minutes and my left arm inflated like a balloon. It just blew up like an overstuffed sausage. It freaked me out. I went back down the next night and that didn’t happen as quickly and I just kept going because it felt so good to exercise. After around 20 minutes, hives all over, I was coughing and wheezing and then my left arm again blew up so much that the skin hurt from being stretched and I could barely bend my arm at the elbow. I emailed a picture to my doctor and she said it was probably a histamine reaction but was not sure and to go to the ER or call 911 if I can’t breathe.

The allergic reaction goes down after 30-90 minutes. But every time I have made this mistake of exercising again, this sort of thing happens and then within a day or two I feel like I have been hit by a bus and my body is in excruciating pain for weeks to months afterward. My whole left upper side (neck, shoulder, arm, chest, jaw) has been killing me for over a month now. Anyone would naturally think it’s because of an injury from weight bearing exercises but the exact same thing happens when I only use an elliptical machine for 20 minutes.

The cardiologist I just consulted with seemed familiar with mast cell disorders and she nodded when I told her my doctor said the arm swelling was a histamine reaction. She said that is likely and that mast cell disorder symptoms are very variable and it’s always hard to know—but she said, as did my doctor when I saw her last month, that the swelling only on the left side is unusual and concerning and she wants a CT of my blood and lymph vessels to check for some kind of blockage that is preventing lymph drainage.

So that is where I am now. Aerobic exercise is out of the question, and I can’t even fucking walk around outside until it cools off. It has been over 90 degrees outside almost every day since May, and I am stuck inside my apartment in the AC because as insane as it sounds (Trust me, even though this is my life it is hard for me to believe.), I am allergic to heat and exercise and can’t even go for a goddamned walk outside during the summer without risking my health.

You're the boy in the bubble

R54 It’s getting that way.

R53 At the very least, you need to always carry an EpiPen and hopefully injectable Benadryl and a needle which, used promptly, will usually short-circuit the anaphylactic episode in less than ten minutes.

Episodes like you describe are both life-threatening and variable: the fact you had a mild reaction/manifestation one time does not preclude you from having a fatal episode the next time.

The National Institutes of Health campus is in Bethesda. The National Institute of Allergy and Infectious Diseases is the place to start. Call 1-866-284-4107

R56 Thanks. I may start with the Mastocytosis Society...I don't know what NIH has to offer besides funding research initiatives and clinical trials? They don't really do patient referrals do that?

And this is why I am feeling depressed and doomed, by the way. I'm aware of the risks posed by this disorder. I'm also aware that it's really crazy and people have a hard time understanding or believing that an "allergy" to heat and exercise can be real. (My other most severe triggers so far are aspirin and ibuprofen. One baby aspirin is like setting off a bomb in my stomach.)

The person above who wrote that if I am exercising, I'm not depressed is right, generally speaking. I am not exercising because my body always retaliates when I do. I was not depressed AT ALL, or at least not consciously so, before this recent flare up. I felt very well. I was full of energy, but being cooped up in this little apartment is like being in a hamster cage. Even hamsters get a wheel to run on. I couldn't go for walks because it's so fucking hot in D.C. in the summers. And so I decided to try to exercise very moderately, and I really should have known better.

So I'm here, all alone, with work to do and TV and books for entertainment. I'm not sleeping well at all because of worry and because of the severe pain in my shoulder and arm. I am officially paranoid now about COVID. I was *very* conscious and careful before this flare up, and now that I am feeling endangered again, I feel very vulnerable. I've got a small aortic aneurysm, which is a swelling of a major blood vessel. I also have a varicose vein that my doctor found alarming because of its location in my arm and chest--that's swelling of another, albeit minor, blood vessel. My father's father died relatively young from a blood clot caused by phlebitis--swelling of a blood vessel in his leg--and many of the COVID-related deaths among people my age have been from strokes caused by the virus attacking blood vessels. So I am very trapped in my head about this and there's no escape, physically or mentally, or even sleep. I don't want to be dramatic about it. But my psyche is being a major drama queen and I can't shut him up.

Yes, my therapist really has adjusted my perspective a great deal through cognitive behavioral therapy. As I mentioned, I stopped taking all psychotropic medications years ago until recently resuming clonazepam just to tamp down the anxiety and worry. When I first went to my psychiatrist, I was having panic attacks and I was agoraphobic and had periods of suicidal ideation. Some of that was due to the undiagnosed illness I had, plus anxiety and frustration from going to doctors who at that time couldn't find anything wrong in my labs, and one of whom suggested it was "all in my head" as a manifestation of anxiety. Anyway, despite all my lamentations here, I have a MUCH healthier attitude toward life now than I did then. A decade ago, I was emotionally distraught and often felt like life was not worth the trouble and I would go to bed at night praying (even though I'm not really a believer, but I felt desperate) not to have to wake up in the morning because of the pain and disorientation. As anxious as I am now, I regard this as a much healthier kind of anxiety because it's rooted in desperately wanting to live and to have as productive and active a life as I can.

The klonopin isn’t a good idea.

R50 - Best advice I have ever read on DL. Especially the walking on earth. Done that and it actually works. There's also something called Ecotherapy or Nature therapy. In Japan, I think they call it forest therapy. Anyway, an hour or two of that a week works wonders - total relaxation and calm.

When it cools down, I will definitely be walking around "in nature" (in Rock Creek Park, at least). But as I've mentioned several times, my body short circuits when I get hot. 85+ degrees is too hot for me. Long hot baths are also out, unfortunately. They make me sick.

Yes, it's crazy.

No, it doesn't sound like a real thing.

I don't know what the fuck to say. This is my life. I often wonder if I am in a psych ward somewhere and everything since Trump has been some kind of psychotic delusion. Or if I am in an ICU in a coma having nightmares, and my family is standing over me asking why I keep muttering about Trump and pandemics...these alternative realities seem as possible to me at this point as real reality.

Blood tests are in. I’ve had one or two small things off in the past. This time it’s a mess.

—My doctor ordered a LipoProfile, which measures the sizes of cholesterol particles instead of just counting them. I have very high numbers of small LDL-P, which puts me at a high risk of blood clotting leading to a heart attack or stroke.

—I’m somewhat insulin resistant, even though my A1C blood sugar is lower than normal. So I don’t have diabetes but for some reason I am insulin resistant—compounding the potential for a cardiovascular event. My doctor said the best way to address this is by exercising. Which I can usually not do without a major allergic reaction.

—My A/G level is high but she said my liver and kidney functions look good...?

—Vitamin D2 is too low even though I take a vitamin D supplement and she called in a prescription d2.

This thread took a real turn...

OP, I have known someone who is allergic to sun and heat. I’m so sorry this is happening to you, it’s got to be difficult.

It's all over, baby. Make sure you have a will but only if you have anything anybody wants. RIP, OP.

[quote]I have known someone who is allergic to sun and heat.

I knew someone who had strange reactions to sunlight. She was ultimately diagnosed with porphyria.

OP sure does like to talk in-depth about their physical health.

Nobody needs to hear you complain, you sympathy whore. Life sucks? Get in line. If you're so fragile you feel doomed because some obscure drag queen passed and an actor you don't even know died, you need more than Klonopin. Everybody hurts. You're not special. You will die. You've had forty years. Some had forty days. Buck UP. You're only 42. You have a home. You're able to work occassionally. You have a team of doctors and therapists helping you. You're able to afford medicine. Don't come here and dump your shattitude on everyone. Pointless Bitchery does not include your dreary mundane medical history. Remember that.

A lot of us have been severely depressed like you, OP. I hope your medication works. I've gotten on Prozac. I've been trying to talk to my family more. I fixed my house up for Halloween. I know it is early. I don't care I love Halloween. Trying to do things that make me happy.

I have a terminal disease. Nobody will tell me how long I have to live because “everybody is different.” But I am deteriorating every day. I’ll ultimately suffocate to death. In the mean time, I have constant chest pain, shortness of breath & fear. I keep getting infections that scar my lungs further. The fear makes me nearly hysterical - it’s a physical thing that comes over me. My hands & arms start shaking and I feel like I’m going to pass out. I was fine until last November when I became very ill with cough, chest pain, shortness of breath, inability to get out of bed. I took a month for me to feel better.

They did CT of my lungs May 2019 when I was being worked up for high white blood cells. It was fine. They did a new CT of my lungs May 2020 & it’s horrible. They thought I might have an infection that requires antibiotics, so they gave me some and did a repeat CT & it’s worse.

Would you go to a hospital in NYC if you were in my place? The pulmonologist I see uses an old house that smells like mildew as his office. There are overgrown bushes in front & unwatered flowers looking half dead.

There’s no cure for me, but I didn’t think I’d go downhill so fast. I was fine last year at this time. This pulmonologist made me feel like I had moderate disease when I first saw him. I wasn’t so worried. The next visit, he told me I had severe disease. This last time, he told me I have very severe lung disease.

I’m married but my husband doesn’t care. He barely ever speaks to me. I’m nearly hysterical because I want to clean the house & cant. I want to die in a clean house, I asked him to help, but he really doesn’t. He told me “I don’t think you’re going to die.” He thinks I’m exaggerating.

Funny thing is, I have had a lifelong fear of suffocation.

I have no support. I wish my mother was alive. I would be able to call her up and she would feel sorry for me & give me encouraging words. She would care about me.

I am so sorry, R69. My heart breaks for you. Sending so much love.

R69, find another doctor. Call a therapist for your anxiety. Is a cleaning service out of the question? I feel for you on all counts, but it will help immensely if you become proactive in your own care. I hope things get better quickly.

I think cleaning services aren’t allowed in houses yet because of covid. And I’m high risk.

R69 I am so sorry. Sending you all my good thoughts and a hug. This is heartbreaking to read. If I was your neighbor I would wear a mask and help clean.

R69- Is your father still alive?

OP, can I have your stuff after you drop dead?

I'm willing to give you a sponge bath before the wake.

OP - a couple of days ago, I had a very vivid dream. I was standing by a thoroughfare near where I live. A long, low-hanging, horizontal, menacing black storm cloud was approaching. I think the type is known as a "shelf cloud." It was rolling towards the place where I was standing, and I was shocked to see that the bottom of it was only perhaps four to five feet from the ground. I warned passersby to stay away from it and let it pass. It was then that I perceived a row of grey, misty figures walking, enveloped within the cloud, their heads obscured by its bottom, as though they were directing it, or holding it up. It was like looking at a Stephen Gammell drawing come to life.

As soon as I voiced the warning to passersby, the figure closest to me advanced towards me. I still could not see his face; it was obscured. "Because of that," he intoned, "I will do this for you." He reached out with his grey, cloudy limbs and seized one of my hands - I don't recall which. He held my hand in his two hands, and with a single finger began tracing the lines in the palm of my hand, as though reading my fortune. He poked each feature gently, and I realized he was counting, sotto voce, and I hadn't kept up with the number. Then he stopped. "You have nine days left to live," he pronounced; or "In nine days you will die" - I don't recall the precise wording, I was so alarmed. He continued on with his fellows in the rolling cloud bank, and I awoke, deeply unsettled.

I will soon have six days remaining, for whatever that's worth.

There are people who will nail you to a spot and bore you to tears with repetitive litany of physical ailments and their symptoms.

We have a doorman who will tell you again and again, in excruciating detail the story of his neck pain or hand surgery or the cortisone shots for his knee. Even though he told you two days ago, wait, you haven’t heard this part yet, I got an update from the doctor or this is a new symptom, yada yada. I have a lifelong friend who does this, too. Her whole life revolves around her medical issues and her feelings about them.

Either they don’t register how boring and inappropriate it is to do this, or they enjoy it in some sadistic way. It’s like they want to see how long they can keep you standing there, listening to it. Or perhaps they suffer and want happy people to suffer along with them.

I think OP is one of those people.

I will stop posting.

OP, don't you dare stop posting just because of that idiot. You have every right to post just as much as they have every right not to read it. People who are just nasty for the sake of being nasty are the ones that have the problem. If I was not interested why would I come into your post after I read the first few replies? Don't let anybody run you out.

I don't mind threads like this when people reach out honestly. This place needs more of that.

Just my opinion.

OP, please continue the discussion if talking about your situation helps you feel better in any way. We'd like to hear as much as you'd like to share. I hope you have a good day today!

R77, a doorman is a person you see every day and are forced to be polite to. OP is someone you can ignore, block, or skip over without anyone being the wiser. Are you really unable to see the difference?

If OP's litany tires you and you're still here after 76 posts, that's on you.

OP, ignore the meanies. They should be ignoring and moving on. The fact that they're still here posting nastiness means they're looking for an opportunity to bully someone.

Not sure what OP did that offended some of you, but if you seen.’the interested/don’t care, why not walk on by to the next thread? Jeez. Sometimes people just want to talk.

Sorry for the the above, should say “but if you’re not interested...” etc. Dumbass phone.

I think some people are just the opposite of disinterested: they're able to see that OP goes on at a level of detail that's inappropriate to a public forum while seemingly rejecting, dismissing, or deflecting the advice he's offered in terms of getting appropriate care.

Some people seem sympathetic regardless of the OP's posts that dismiss what his doctors suggest. Others have a tough love approach. Doctors, not posters on DL, can help him. Clearly, OP has issues that go far beyond the physical manifestations of the illnesses reported. When it's present, depression requires treatment, and Klonopin is not the right medicine. It's a shitty med for anxiety.

"Suck it up, buttercup" isn't sympathetic, but "thoughts and prayers and I condole you" sentiments won't fix things either.

Nobody has asked ME how I am!

May I have your stuff, OP?

But you'll have to mail it before - um - you know because I'm not going out with the Corona thing.

Thanks.

Oh, and no rush. Keeping moving is a real struggle, as I know personally. But you have to believe in yourself and the worth of you. We can see it. Sometimes getting through the day takes more valor than going into battle. You're valorous.

And please disinfect your stuff, too, before shipping it so I don't have to.

I'm lazy.

OP keep posting. You knew someone would respond with something shitty. It’s Datalounge. Just block them.

You knew this line was coming: "Can I have your stuff?"

Sounds like the "Should I go to the ER?" troll.

Be extremely good to yourself. Think of anything that makes you feel better and do it--movies, healthy foods, books, friends, etc. Treat yourself like you would treat your most loved one. Also, when I was depressed, keeping track of things in a journal helped, also lists of Best Vacations, Best Time With Friends, whatever, helped me put the present time in perspective. But, also, set a time and let yourself fully feel what you are feeling for discrete amounts of time. Emotions tend to be wave-like and if you feel them and let them crest, they subside. All this said, I know no one can fully understand your pain, but there may be a transcendent Love that does. I try to stay in touch with that.

Maybe OP just needs someone to vent to during what amounts to a period of isolation for some of us. Sometimes people are going through something and need to feel like someone sees/hears them. If that’s not you, you’re fortunate, but not everyone is that lucky.

If you’re not sympathetic that’s okay, but wouldn’t it make sense to ignore the thread rather than give the OP a hard time? Seems like he/she is already dealing with plenty.

OP - In terms of your stuff... have you made any arrangements?

Agree r92. Some folks need to step back a bit and lighten up and give posters room to breathe and express once in a while.

R69 That's terrible. And he knows you have a terminal disease? Does he know what that even means?

If I found out I had a terminal disease and its now going to rapidly progress, thankfully I have a family that'd be tolerant of what I do after, and a partner (long term boyfriend) that would be the most caring man you can imagine, unless I totally gave up and went counter-productive to my health. I tend to believe I'd get on disability, and/or we'd finally shack up and we'd share his funds/earnings and have fun with it while I'm still here. I'd progress through all the Playstation 1 and Playstation 2 games I have listed in a text document to play at some point. I'd set one big project, of whatever nature, that I must make daily progress on (with cheat days for when I emotionally break down). We'd find a way to have a nice vacation. It wouldn't be Hollywood, and the pain would overcome me on many days, but I like to think I'd at least have a supportive environment (and I'd push to find a way to die/kill myself/get killed before it gets too incredibly bad).

Hope you find some peace OP. Perhaps look into some edibles if the Klonipin depresses you.

I'm sorry, OP.

Many of these other sad bitches thought you somehow were looking for suggestions. I just wanted to see I see you, I send love. I wish deeply for you to either find a solution or support that works for you. Stay strong.

Op, just know that you are not alone. A lot of us there in dark place right now. I agree with my other DL family members. Do something that will make you happy. even if it's just watching a movie or reading a book that you enjoy. Or fixing a favorite meal. Don't listen to the negative people on here. There are a lot of good people on here. Sending you lots of love.

Hey, it could be worse, OP.

You could be one of those Fat Whores for Trump.

How are you, OP?

Honestly, right now isn't a particularly bad time to die. This year has been the start of a very bad future and it's only going to get worse from here on out. Those dying this year are lucky to be getting out while the getting's good.

Try making top ten lists of times when you were happy--i.e., top best restaurant experiences, top dates, top vacation moments, best work experiences. I know it sounds weird but it may take your mind off the current situation.

R101- Please do NOT apply at any Suicide Prevention hotlines!!!!

[quote]Honestly, right now isn't a particularly bad time to die. This year has been the start of a very bad future and it's only going to get worse from here on out. Those dying this year are lucky to be getting out while the getting's good.

Yeah, don't make things worse. Listen, read The Savage God. It is all about suicide and without once condemning it or offering stupid platitudes, just the data alone will give you a new perspective. Plus, the book is absorbing. Good luck. You are a unique person and the world needs you just as you are. I know I sound like Fred Rogers--but that guy was right!

Have you considered meditation? I had terrible anxiety and, in the end, after all the pills, it was meditation (with exercise and normal sleep) that completely calmed me down.

R100 Thank you for asking. Not great. Not dead.

I stopped following this thread because people made it clear no one wanted to hear about my problems and so I won’t get into it. Some kind of scary test results recently, but I don’t know. I am getting closer to just digging a hole and crawling into it.

Well, everything but the bloodhounds snapping at your rear end.

Is this parody?

One never knows, R109. It's certainly not the place to go looking for advice and expecting sunshine and lollipops in reply.

Sending hugs to you, OP, wishing you all the best in this difficult time.

Sometimes it's just your time, OP. I don't really know how to comfort someone with a fear of death, as I've never feared death and have just seen it as an inevitability since I was a kid. I don't really know how to help, so all I can say is, eventually our numbers are all called and there's nothing you can real do about it.

Best thing to do is just focus on the pleasures of thr now.

Please talk to a health provider and ask for an antidepressant. They are dirt-cheap and work amazingly well for so many of us.

While you are at the doctor's office, ask for help finding a therapist so you can lstart therapy ASAP.

Stop drinking alcohol and doing any recreational drugs (except for maybe small amount of marijuana which can help anxiety but talk to you doctor about that.) If you need help to stop drinking or drugs, please tell your doctor. If you are a daily drinker, dont stop drinking suddenly, it could cause seizures. Talk to the doctor.

Start going outside for a brisk 30 minute walk every day. You will start feeling better soon.

Be sure to follow with up you provider and let them know how the meds are working.

Wishing you well and sending you hugs - it's going to be okay.

Have you considered the side effects of the Klonopin affecting your mental and physical health? I think that is a good place to start looking into the depression and feelings of doom you're dealing with. I hear you with the other issues, yes they are tough to deal with but I seriously suspect the Klonopin could be an issue. Please look into this and let us know how you're doing.

R101 that's totally fucked up. Go for a long walk on a short pier.

Hey OP - How are you? I'm interested and will listen.

Move to NYC. Literally millions of jobs waiting for you. LOL.

How are you doing, OP?

Thank you for asking, R118 and R116. I'll answer against my better judgment...not looking forward to the trolling, but whatever.

It's November 5. Biden could win, Biden could lose. I'm not confident that even if Biden wins, he won't steal the White House through the Supreme Court, AG and Senate. So I am anxious.

Healthwise, it's been a crazy adventure since my original post. Long story short:

—Mammogram and breast ultrasound revealed I have gynecomastia and revealed no signs of cancer. All doctors--GP, breast specialist, cardiologist--agree that the gynecomastia is most likely caused by the antihistamines I have to take to treat my allergic disorder.

—Second CT scan of my heart and greater vessels revealed the same aortic root aneurysm (base of heart) as well as a small aneurysm where another aorta connects with the lung. It also revealed small micronodules scattered throughout the top part of my right lung. That sent me into a panic.

—This was followed a month later by an ultrasound at the cardiologist's office. My blood vessels are COMPLETELY NORMAL, according to the cardiologist, based on the ultrasound. She said that CT scans sometimes scatter light in blood vessels and make them appear larger than they are, confusing radiologists into thinking they are seeing aneurysms. She said I have no aneurysms, my heart is normal and beats normally, and she said that the micronodules in my lung are not cause for concern because I don't smoke, I haven't lived in a house with smokers for over a decade, and because I live in a city, and people who live in cities often have small benign nodules in their lungs from breathing in small particles. She told me I don't need to worry about my heart for at least a decade. I cried and shook and had a panic attack because I honestly couldn't believe the good news.

She could not explain any of the heart attack-like symptoms--pain in the left arm, rapid heartbeat, etc.--but she said that it could be nerve damage and I should see a neurological orthopedist or an orthopedic neurologist or something like that but doesn't know a good one and can't refer me.

So ultimately, healthwise, all good news.

My left breast is still swollen and it has been aching this week, along with louder tinnitus and fullness in my left ear, numbness on the left side of my face. Another doctor told me that all of the pain is likely due to a lesion or damage in my cervical spine/neck. I was diagnosed with cervical arthritis when I was 33, so it is probably that. This doctor said the breast swelling from antihistamine-induced gynecomastia and the breast pain are probably completely coincidental, and that the pain is probably from the spinal arthritis.

So that's where I am. I'm uncomfortable and don't feel well a lot of the time. But I've ruled out some crazy potential major health problems, and I know I don't need to worry about my heart or blood vessels now. I need to figure out what sort of specialist to see in case someone can help with the pain on my left side, which is limiting, but knowing that I'm not in acute danger of a heart attack or stroke is a huge relief and takes so much pressure off.

If Trump doesn't win again, I will be a content human being. I'll settle down and stop panicking so much. Until it's decided, I will continue to be a nervous wreck.

How are you?

Well, that is great news then, OP! I don't doubt the impact that Donald Death has had on you, and a lot of folks for that matter. Everyone is on edge. I guess the trick is to have faith, have faith in the system, the process and that is working out, thank goodness. It just takes time. Meanwhile, we are witnessing the dying days of Trump with great relief, it's almost a spiritual experience if I can go so far as to say that. Like a new world is dawning and no one believes it is actually happening but it is!

I do hope you find a good specialist and keep at that - don't let up. Make sure you eat properly - as much as you can. Nutrition is very important and so is exercise. Take it easy for the next few days and once this election saga is past, you may find a bit more overall relief in your life and ability to get back to normal. I think we're all looking forward to a bit of peace right about now.

That's wonderful news, OP, but I'm sorry you're in pain. Here's hoping for some relief from that. For what it's worth, I talked to my doctor recently about a possible flare-up of my chronic condition and she said there's been a lot of that happening recently, which I assume means that COVID restrictions are exacerbating illnesses. I'll just repeat what the previous poster said about diet, exercise, and most importantly, [italic]stress[/italic]. The lesson I've learned from this year is that you have to do anything and everything to stay as well as possible, whatever that costs.

R120 and R122 Thank you both. I have been 'exercising' by walking since it cooled down and I don't have to deal with my heat allergy. I went from three to five to eight miles a day. Unfortunately, any kind of exercise seems to trigger this pain on my upper left side and I am very achy, but it's not the worst it has ever been. I'm a lot more bothered by the election and worried about the pandemic than I am concerned by my own body failing me, and that's a good thing in a way.

OP here.

I just retrieved this thread to post an update.

Some of you were extremely supportive and kind when I started this thread, and I want to thank you and also thought I would post an update in case it may be helpful to anyone.

I don't have any better diagnosis but I may be getting closer and it doesn't look very uplifting.

I know I have mast cell activation syndrome (MCAS), a potentially life-threatening allergic disorder, and I had Lyme disease. I think the Lyme is behind me, but I also have other unexplained symptoms beyond MCAS.

Out of desperation for an answer, I joined a website that crowdsources diagnoses from medical doctors all over the world. I didn't expect much and have not gotten a lot for the past month.

But yesterday someone sent me the video linked here. It is a presentation by a pediatric cardiologist who for some reason deals with a lot of MCAS patients, and he has a hypothesis that MCAS is connected with and can lead to connective tissue dysfunction and then autoimmune disease. Everything he says describes my case very well, and it's not good at all. People who have what he calls "the pentad" begin to fall apart literally, with bones popping out of joints and even ribs popping out (characteristic of Ehlers-Danlos sybdrome), and then organs begin to lose their integrity and sag--including the brain. You basically turn to mush.

He talks about some treatments in another video and that gives me a little bit of hope but at this point I am more worried than I have been in the past decade. It seems unlikely I will live to an old age. I'm still grateful I made it to 40 and beyond (I'll be 43 in May.), which I thought in my 30s I might not, but there's never enough time, is there?

More information is always a good thing, OP r123. Can you possibly take this information now and consult with a few doctors in your area and validate or negate this theory? Remember, this is just another opinion. I'm wondering if now that you know, there might possibly be some medications or treatment strategies you have not thought of. Apologies - have not reach each post here so just catching up.

R124 It's the only opinion I've ever heard that so closely mirrors what I am going through. I have not been able to identify a specialist in Washington, D.C. who deals with mast cell activation disorder, believe it or not. An NIH practice treats patients who have related mastocytosis but not MCAS.

I am on a Facebook group with patients who have both throughout the world and some have specialists but they span a wide array of specialty practices, including allergy, immunology, hematology, rheumatology and oncology, and it seems to just be people who have an interest in learning about this as it develops.

There's no speciality discipline yet and finding someone is like the proverbial needle in the haystack. Honestly, it reminds me of when AIDS was new and it was thought to be a cancer rather than an infectious disease and patients were just left to die on their own. I have gone to so many specialists and they always shrug and say they can't help because they are limited to one part of the body or one system. I did see a dermatologist who said his best friend has it and she sees a doctor in Boston, so I may need to call him after travel is reinstated to see if maybe he could connect me. That'll be a long way to go to see a doctor, though.

I've messed up my life in so may ways yet I still manage to manage. Don't give up..

I won't give up, R126, not insofar as doing myself in or anything. I spent much of my life post-adolescence defaulting to suicidal thoughts, but that process came to a screeching halt after I drank ayahuasca. I'm committed to finishing my story here on Earth. I just wish the story had more ups and fewer downs and I would like to make it to a decent old age, and to do that without decades of disability. It doesn't seem too much to ask, but at this point it does seem unrealistic to hope for that. Anyway. It's life. I am grateful for what I have, if worried about what's to come. And I know a lot of people have had it a lot worse and that does put things into perspective but I also don't really like to measure myself against others.

So many surreal things have happened in this life and especially within the last decade, and so I am trying to gradually recalibrate and just accept that "surreality" is just reality that I wasn't prepared for.

I have two words of advice: Mayo Clinic.

R128

r127 OP I was born depressed and from a long line of mentally ill people. I always find it hard to connect with others, have screw up more relationships then I can count relationships and fucked upmost other areas of my life.

I actually, with meds and counsiling of course, learned to change my thinking from very neg, to pretty positive. Although I still cry a lot of anxiety about my future,Im pretty happy with the simple things that are good...a couple of decent people to hang with, I found I love to work out at the gym almost daily. If the sun is out, I happy.

Im now 65 "GASP" and have never been happier with less. I live simply..try and stop the negative thinking....you can do it!

OP, back again. I have been to more doctors this year and I found a new allergist-immunologist. At this time, I am not encouraged at all but I have some answers.

So far, it's been determined that I have "silent reflux"--acid reflux without heartburn that has damaged my esophagus and pharynx, and I need an endoscopy. And also determined that I have cervical spondylosis and a vertebra that has somehow slid backward a bit, causing some of my neck, shoulder and arm pain.

The left breast swelling remains unexplained.

This morning, I got blood tests back from the allergist-immunologist. He ordered a lot; however, I have had most of the tests before--but these results are very different.

Not only do I show evidence I expected to see of a mast cell activation (allergic) disorder, but there's a lot of fucked up shit for the first time ever. Two different patterns of ANA, suggesting somethig like lupus, mixed connective tissue disorder, scleroderma or Sjögren's syndrome. Thyroid antibodies are sky high, suggesting Hashimoto's thyroiditis (which my sister has) or Grave's disease. A very low kind of immunoglobulin, which suggests allergy in my respiratory and gastrointestinal tract. And one thing that has been persistent, a slightly high ALT, which suggests liver damage.

I will be 43 in May and I feel very doomed. I think my days on this Earth are running down.

That's a lot of "suggested" illnesses. Have you ever done a complete anti-allergy diet or at least anti-inflammatory one? You could be allergic to something common that is exacerbating your symptoms. I would immediately eliminate all sugars, even fruit and all simple carbs. Eat brown rice, and miso or bone broth for a couple of days and see how you feel. Good luck.

At least you don't have Morgellons.

OP, how much caffeine do you consume? A long shot, but let me suggest a connection to breast pain. On and off I was getting left breast pain, and I realized that it was only when I overdid it on the coffee and tea. Nobody else had suggested it to me, but I find every time I overindulge that's what happens and it's an odd, nagging pain for me. One time my girlfriend was getting in my car with a huge cup of iced coffee and as she got in she groaned about her left breast, and complained about nobody could figure out what it was. I told her about my problem with caffeine overuse, and left it at that. 3 days later she calls me and says that she went on a caffeine-free diet, and the pain lessen to the point where she didn't feel it every day. A few weeks later she told me that she had gone a few more days without any caffeine and it disappeared. Every so often she'll mention to me she's overdoing it on the caffeine because the pain is back. I have found the same thing, I'll forget about it, and then I get a nasty reminder that I'm drinking too much of it. As I said, it's just a suggestion.

R132 I've done all sorts of elimination diets. I avoided high-histamine foods for a long time but it didn't seem to make any difference in how I felt. I have an app called "Intolerances" that lets you sort food groups according to intolerances for histamine, fructose, FODMAPs, Oligosaccharides, Sorbitol, Sucrose, Lactose, Tyramine, Salicylate or Nickel. I've sorted by histamine because I know I have a mast cell activation disorder.

But the ANA being positive--two different types of ANA pattern--really throws me. I expected the allergic disorder. I did not expect an autoimmune disorder, even though my symptoms for the past 10 years have seemed like autoimmune disorder symptoms, and particularly like connective tissue ones. I don't understand how I could have over five ANA tests over a decade that are all negative and then suddenly now I'm positive.

I'm panicked about it because I can't even fucking take a long walk anymore without feeling physically devastated. I don't want to end up like Stephen Hawking, or dead by 45.

I did the whole 30 diet in January as an elimination diet--that involved eliminating everything processed, all non-naturally occurring sugar (e.g., fruit), all dairy, all wheat and all legumes--so just vegetables, meat and some fruit. It didn't make any difference in how I felt, although I did lose a little weight and I think some of that weight was water weight/less edema.

I can try your diet for a couple of days as you suggest. I'll try anything.

I'll see my allergist-immunologist on Monday and I suspect he will advise me to go on some sort of specific diet.

He did test me for some specific allergies and only two kinds of wasps came up as abnormal.

R133 I used to drink A LOT of caffeine. I didn't actually realize how much it was compared with what is considered normal.

My throat issue over the past four months was bothersome enough to send me to an ENT and a gastroenterologist, and even before I went, I cut back to one mug of coffee every morning--and that's it. She said that that is OK. I've replaced coffee and black tea otherwise with ginger and green teas.

The breast pain has improved, but it tends to arise when I exert myself--which these days only means going for a walk over a mile or two--and that is really when it has hurt most. The orthopedist and neurologist I've seen have both told me that it is part of my cervical radiculopathy--a pinched nerve in my neck at C5/C6, which connects to the shoulder, arm, outside two fingers, and they said it can cause breast pain as well. But the breast is also very swollen, very noticeably and abnormally so, and doctors acknowledge that but I feel like they choose to believe it's benign because they don't know why it would be this way. I did have a mammogram and ultrasound of it and the radiologist told me that it's mostly normal fatty tissue with an abnormal (for a male) amount of breast tissue underneath, but nothing abnormal otherwise.

By the way, thank you, R132 and R133.

OP, make sure you go to a GOOD rheumatologist with your new positive ANA diagnosis. I wasted years of my healthy life with a rheumatologist who just wanted to wait and see. Now I go to one who is on top of everything, and I'm starting to feel better.

R137 I'll talk with my doctor on Monday...he is an immunologist. I wonder if he might be equipped to deal with autoimmune issues?

I went to a rheumatologist years ago before I was diagnosed with Lyme, and she was totally useless. I had been tested by neurologists for a couple of years for suspected MS or ALS or some similar neurological condition. After all the testing, they told me something was wrong with me but the labs didn't add up to anything diagnosable at that time and they would wait and monitor me annually.

I was getting sicker and I was desperate and my sister told me my symptoms seem autoimmune and she urged me to go to a rheumatologist, and so I did.

The rheumatologist began a physical exam and then pointed out that I have a lump in my hand. I told her I know. She said it is something called Dupuytren's contracture and told me what it is. She went to Medline, printed out a page on it and gave it to me. She told me it is idiopathic and at some point I may need to have the tendon in my hand severed. My whole body was falling apart--all my joints hurt, my left leg had gone paralyzed a couple of times for short periods, my skin was scarring all over for no reason, and the woman would ONLY talk about Dupuytren's contracture. It was so fucking bizarre. I told her my body was falling apart and I needed help, and she just told me my treatment options for Dupuytren's contracture.

OP, I'm 133 & 137. Once you get a positive ANA, it's always positive, according to my rheumatologist. She does continue to check for my levels, but don't let anyone tell you that you no longer have it. My ANA tested off the charts the first time and now sometimes falls into the high normal range. My doc doesn't care. She goes on my symptoms and will suggest trial periods with meds, and if they don't work for me within a certain period of time, she'll try something else. She will only give me a certain number of doses, saying "why pay for a month's meds when you will know in a week." I really like her approach to everything. Is willing to do virtual consults and allow me to stretch out in-person visits if I tell her I'm feeling okay. An immunologist may have some of the detailed knowledge of rheumatology issues, but can't stay on top of everything in the field (my opinion) if they are also on top of everything in their domain. I would suggest you shop around for a good one and ask for a dr.-to-dr. recommendation for a consult - you won't be able to get into a good rheumy on your own in a timely manner. In my experience, they are booked forever.

I hope you don't lose hope, there is light at the end of the tunnel that isn't an oncoming train as long as you stay aware and vigilant. Good luck!

Thank you, R139. What is your autoimmune condition?

I don't have any idea what mine could be. I have had allergic symptoms and lab evidence of a mast cell activation disorder for longer than I've had evidence of an autoimmune illness. I suspect the mast cell disorder might be the basis of the autoimmune illness, and if that's the case, then it seems like an allergist would be needed to manage that.

All autoimmune diseases aren't treated in the same ways, are they? My sister has Hashimoto's and ulcerative colitis, both autoimmune, and one is treated with thyroid supplements by one doctor and the other is treated with an oral steroid. Our mother died three years ago from either Crohn's or ulcerative colitis at age 66. :(

OP, I am 139. I have mixed connective tissue disease, rheumatoid arthritis, lupus (I know it's a part of MCTD but dr. says my test results sometimes lean more lupus), raynaud's, sjogren's and a bunch of thyroid issues. I also have tons of food and substance "sensitivities," and some other maladies that seem to float in and out on the wind. I have become very adept at diagnosing myself when need be, but always get confirmation from someone that is objective.

My main problem is keeping myself aware of what's going on, it's never easy. I don't write in a symptom/daily observation journal anymore, but it does help. I keep saying I'll use the voice-to-text app on my phone to keep track of fly-by issues, but I still haven't gotten around to doing it yet. Now that you've started on the path of being aware of what goes on with your system and when, I've got to think it will get better with the right kind of help.

My thoughts on doctors cross-treating? Only if they've proven to you that they know enough about your conditions to do so competently. In the beginning, I'd talk to everybody. My current GP is the one who recommended my Rheumatologist. Sometimes I'll complain about something and she'll dial in the rheumy to get her opinion on how/what to treat. That wonderful combo has only been in my life for 5 years, how I wish I had that kind of dr/patient/dr relationship years ago when my symptoms first started.

You are your best advocate. As I said, be aware, be pushy when you don't get the answers to your questions (write them down!) and always insist on copies of your test results and try to get some kind of written explanation of what those results mean when compared with other things in your day-to-day life. It can be exhausting, I know. But once you get your answers they will fade into the background, I promise.

R141 OMG I didn't know you could have all those diagnosed separately...that sounds terrifying to me, to be honest, but you sound pretty positive about your health.

I have more than food sensitivities...I have a major allergic disorder. There's no doubt about that. I break into hives with a light scratch, or from exercise or heat, followed by anaphylaxis.

I'm more than on the path of being aware of what my body is doing. I started on that path over 10 years ago. My whole body was affected by Lyme and my symptoms changed hourly, daily or weekly, and I began to keep a daily diagram of symptoms--where they were on my body, what type of pain or dysfunction, etc. I thought doctors would think I was totally bonkers, but everyone I presented with the information first of all seemed to realize something was very wrong for me to have gone that far, and they all made copies for their records.

Regarding doctors...my primary care doctor is the one who finally figured out that I had Lyme and treated me (successfully--my nerve pain and my panic disorder both ceased during antibiotic treatment and have not come back) and I trust her. But over the past year, because of all my crazy issues, I have been to a cardiologist, a breast center, an ENT specialist, a gastroenterologist, an orthopedist and now a neurologist who specializes in the neck. I've had two CT scans (heart and great vessels), a mammogram, ultrasounds of my breast and of my abdomen and heart because of the suspected aneurysms, X-rays of my shoulder and neck and I have an MRI of my neck next week. It's insane. It's totally insane.

I found this allergist-immunologist, who has a really stellar background on paper (that doesn't convince me of anything anymore), and our first virtual consultation was very encouraging. I told him that I think I have MCAS but I would like to confirm or correct that diagnosis and make sure I don't have mastocytosis. He decided what tests to order and he ordered *a lot* of them. I'll find out on Monday what he has to say about them, but so far I am encouraged that he is going to be helpful and I'm going to follow through and probably will follow his recommendations. I am really, really, really exhausted. I'll go to a rheumatologist if he recommends it, but I'm not going to jump the gun and try to find one before I speak with him or dismiss what he has to say.

I have definitely learned that I'm my best advocate (now that my mother is gone, anyway) and I don't shy away from advocating my interests to doctors anymore. I do write down my questions and I'm not bashful about asking them. I have copies of all my test results. I actually sent most of my bloodwork from the past five years to the allergist prior to our first appointment and he reviewed all the information and knew it before we spoke--so I am encouraged about his competency. We'll see.

But I am still scared, honestly. No matter how good or poor the care I receive will be, I just have this very doomed feeling, like my time is winding down. I think that's probably some kind of automatic defense mechanism but it makes me sad because I am not depressed or anything like that, and I don't want my life to end anytime in the near future.

OP, not to downplay anything you're feeling, but I think all of us are going through a doom scenario somewhat these days. I think if you have half a brain and a heart, just a little news of the day can send us all there. I know it does to me and my family. I wish you joy and increasingly better health.

Thanks, R143, yes the news of the past four years was a major contributor to a feeling of doom. So was losing my mother three years ago. But my failing health overall is the problem right now. Politics don't invade my thoughts constantly as they did from 2016-2020

OP, I hope as you find more answers you lose the doomed feelings. There's no magic pill, unfortunately, or I would have cornered the market on it. LOL.

Is OP around? I recently found I have MCAS and am not doing too good myself. It's a bitch. Are you taking anything for it? I'm supposed to start Cromolyn tomorrow and am scared.

OP, I have not read all of the responses to this thread, but I had to let you know that I recently went through a significant downturn in my depression. My doctor prescribed klonopin, and it was terrible. It turned into an emptied-out zombie. I told him how I felt, and he changed my benzos to Xanax. I felt relief within days. Please talk to your doctor about your meds! All benzos are not created equal. I do hope you get to feeling better, OP.

OP You lost us at mammogram.

R147 - very surprised that your MD prescribed klonapin for depression. The med may relieve anxiety, but it does so by depressing/suppressing certain feelings. It is a depressant itself.

Hey op - I am sorry that you are going through this. I am female - about 10 years ago when I was in my early 40s - and healthy - I painted my entire house myself including all of the ceilings. Suddenly I had breathtaking almost debilitating pain. It was like nothing I had ever experienced - it was based in my sternum and radiated through my ribcage, neck, arms, breasts, back - it scared me - I could have sworn that I was dying. It lasted for 10 months - I couldn’t drive, lift a carton of milk - sitting at the computer was awful. I went to several doctors - a lot trout I was seeking attention or drugs. I had a mammogram, chest x-ray, heart tests, they tested for pancreatic cancer. I was terrified and was afraid to fall asleep at night - I felt like I was a ticking time bomb. I finally found a great doctor that didn,t make me feel crazy. I had Costochondritis. It is extreme chronic inflammation of the sternum and rib cage. The Dr treated it with an anti inflammatory diet and mega doses of ibuprofen to break the pain and inflammation cycle. It cleared up quickly - I was so emotionally relieved it is hard to explain. Oh OP you mentioned that this came on after you lifted weights. my costochondritis hit me after I painted the ceilings - the prolonged repetitive motion set it off. It never came back - but that was ten months of great stress - I wish you the best, OP.

Thought not trout!!

It's a year later and I am now much better!

I found an allergist-immunologist this winter who gave me a firm diagnosis of mast cell activation syndrome (MCAS), which my doctor had sort of 'unofficially' diagnosed in 2017. He shuffled around my antihistamine protocol, so I now take three different ones daily, and added a prescription leukotriene inhibitor and gave me an inhaler for asthma. I never knew I have asthma but apparently it can present with symptoms different than the typical asthma attack.

I AM NO LONGER ALLERGIC TO EXERCISE. I bought a bike about six weeks ago and have been riding it on and off, and two weeks ago, I got the nerve back to try to work out again. Three years ago, I used an elliptical machine twice and had anaphylactic reactions both times. Now, I've been to the gym nine times in two weeks (I'm exhausted today so took the day off.) and have done both weights and cardio with no problems.

I also got physical therapy this spring and it fixed the pain in my shoulder and neck.

I still have moderate gynecomastia, which is embarrassing but not extreme, and I still have two borderline aneurysms (dilated arteries that can be called aneurysms or not depending on how conservative the doctor's opinion is) and I'm not well-well, but I am so much better, and I'm absolutely thrilled I am able to be physically active again.

Just updating this in case anyone ends up in medical limbo with mysterious chronic conditions. Don't stop looking for doctors who may be able to help.

R152 It's nice to hear good news. Congratulations, OP! You sound like you have a whole new outlook on life.

R153 I do for now.

I forgot to mention that it seems the new medication is also keeping me from having anaphylactic reactions to heat. That has been the strangest and most difficult problem to explain to people all these years. "Oh, I can't go out. I'm allergic to heat." I've spent hours outside in 90-plus-degree heat this year and since about 2010 that normally would leave me covered in hives and shaking like I had Parkinson's, but it's not happening now. So yeah, it's a life changer.