This is beyond the scope of all but the most seasoned hematologists and rheumatologists. It MUST be rheumatologic or a bone marrow disorder, nothing else fits all the symptoms. You should be referred out to Mayo Clinic or Johns Hopkins or something. I would say the rapid progressions warrants an inpatient workup until a cause or treatment can be found. If those fingers/toes get infected you could get septic pretty quick.Some type of small vessel vasculitis fits best, but theyve tested for all the obvious culprits so its hard to say why nothing has been found yet. Its definitely not in your head, but its no surprise that stress makes the symptoms worse. Stress makes a lot of things worse.I wish I could offer you more, but this definitely isnt my field of practice. Hopefully someone else has some ideas.Agreed agreed. This needs an inpatient work-up in a big academic center. We had a similar case on my MICU rotation in residency and he was getting continuous plasmapheresis while we tried to figure out what the cause was.
Fingers, Toes turning black and rotting off. Desperate for answers! Also hematology and rheumatology blood results and symptoms that no doctors can explain. can't embed images here, so I made a pdf with all text, pictures, and labs. https://www.scribd.com/document/511582218/askdocs-pdf?secret_password=VqmaLuJA0tGw5bGE5xYp It will be much easier to read the whole thing there, with the images embedded, but I will copy the text here.36F, 55, 115 lb, white.  Primary complaint = fingers and toes turning black and rotten (pictures included).  Existing issues = random red cell destruction without cause, random platelet destruction without cause, swellings and rashes (labs and pictures included).  Medications = iron supplement.  Occasional Claritin, Advil, Prednisone.  No medication right now.  No recreational drugs or smoking.  Rare/light alcohol (an occasional drink on holidays or weddings)  Rotten Fingers.My left thumb got a blood blister so I put Neosporin and gauze on it.  The pain became so intense that I went 72 hours without sleep.  I went to urgent care, who removed the bandage.  The thumb was very swollen and the top third was black and crusty.  (picture)They sent me to the Emergency Room, where they removed the upper half of the thumb.  The pain completely went away, it was just a little sore and itchy.But a few days later, all the other fingers and 8 of the toes started turning black.(pictures)Thats the hand with the original bad thumb.  The pinkie has a blood blister, the index and ring fingers are turning black and crusting at the very top under the nail, and the middle finger is just inky blue/black without any crustiness or blisters.  The left picture was taken a day after the right one.  Right Hand:  no crustiness or blisters.  The fingers are just dark.  The index finger is getting kind of gooey (last picture).(pictures)Toes look blacker than fingers but not crusty.  All but the two smallest toes on right foot are turning black.The ER doctors were very kind but nobody knew why my thumb turned black and rotten.  Now here are all the other weird symptoms and bloodtests that doctors cant explain.  None of it seemed like a big deal untl fingers started rotting.  2. Rotting BloodFor years my annual bloodwork showed I was anemic.  For example(picture)But I had no symptoms of anemia other than feeling cold, so my NP said being anemic was just my normal and prescribed an iron supplement.Two or three times a year, I would get symptoms of extreme exhaustion that would last a few weeks.  Most of the time, I felt healthy. But for those weeks, I would sleep the entire weekend, wake up Monday, stumble brain dead through the workday, then get home and fall right back asleep.  After a few weeks, Id start to get better.  For years, my NP said it was nothing, just a virus.  But I never felt sick, just exhausted.  Then a doctor saw me while it was happening.  As soon as she saw me, she took my vitals, looked at my eyes, and said, this isnt all in your head.  We need to take your blood.  Here were those blood results(picture)It turns out that the exhaustion is because my blood starts rotting a few times a year.  I went to hematology.  They tested me for every possible cause of blood destruction.  But everything was normal.Tests included DAT/Coombs negative, PNH w/ FLAER no flow cytometric evidence of paroxysmal nocturnal hemoglobinuria No evidence of aberrant loss of GPI-linked markers tested in erythroid or leukocyte populations. Anti-CD45, glycophorin A, CD59, CD24, CD15, CD64, and FLAER tested. Complement: C3C, C4C normal, CH50 high (>60). Cold hemagluttinins: none detected, G6PD - high (>21.00). No hereditary spherocytosis or elliptocytosis. Infections negative.  Blood cultures normal.I can post the tests if anyone needs to see them.3. Bruises and Rotting PlateletsNormally I dont bruise any more than most people.   But once in a while, I get bruises everywhere.  My bra, underwear, and socks all leave big bruises.  Theyre painless and go away in a couple weeks so I never worried about it.  But when a doctor saw and tested, it turned out there were almost no platelets.  The picture shows the bruising left by a loose sock.  My whole shins were just big bruises that followed the pattern of the sock elastic.(picture)In a few weeks they were back up to 40 and the bruises were gone.  Hematologist found no reason for platelets to suddenly drop like this.  They checked for cancers and even took bone marrow but no answers.(picture)All the bone marrow tests like fish and genetics were normal.  4. Symptoms that Seem Autoimmune but Have No Rheumatologic Cause.  Sometimes I get rashes and swellings that doctors think is autoimmune(pictures)Rheumatology has tested EVERYTHING again and again.  Sedimentation rate, ferritin, and CRP are always high.  But nothing else is usually abnormal.(pictures)They biopsied some of the rashes and purpuras (which I dont have pictures of, theyre just little painless red spots that sometimes break out on my legs).  They all showed the same thing, leukocyto elastic vasculitis.  Heres one.(picture)But every other type of test for vasculitis has been negative.   Nobody has explained why someone healthy and pretty young like me should have chronic venous insufficiency either.I have only had one round of tests where there were any abnormal autoimmune results:(picture)But these things were only abnormal that ONE TIME.  Rheumatology has re-tested them so many more times and they are always normal.  They have tested for every other autoimmune disease and they are all normal.  The only rheumatology tests that are often abnormal are sediment rate, creactive, and ferritin being high.   Ddimer and visc is sometimes high but not usually.  PT, INR, and ptt are sometimes high too.  (picture)They dont think its cryoglobinemia because it was only positive once and negative a lot more times.  Also, my C4 was always high or normal and my C3 was always normal, even in the test where there was cryoglobulin.  (picture)The only other thing off on the bloodwork is subclinical hypothyroid.   TSH is high, but T3 and 4 are low normal.  I have no symptoms of  hypothyroid other than being cold.  And the cold could be from anemia.Please, does anybody know what this all means?I had accepted the lack of answers when it was just random blood rotting, swelling, and rashes.  I know the doctors tried hard.  I could live with all that stuff.  But these black fingers, I cant live with it.  It hurts too much.It feels like someone as healthy as me shouldnt have all these symptoms unless its connected somehow.  But nobody knows how.  Rheumatology thinks the rotten blood is not autoimmune because Coombs and other autoimmune tests are always normal.  But hematology says if its not autoimmune, then theres no other answers.  So far, I have no autoimmune diagnoses but doctors still act like I have something autoimmune.Monday I will see my NP and can ask for any tests anybody recommends.IS THERE ANYTHING I CAN DO FOR THE FINGERS AND TOES?  TO MAKE THE BLACK GO AWAY OR MAKE THEM STOP HURTING?I already tried asking a pain forum for tips, but I got a nasty message (Your complaining about 2 weeks of hurt fingers!  Do you understand that we have pain that is severe, intractable and forever*?*  I have ddd and a herniated L5-S1 disc.  I am in 10/10 agony beyond your imagination.  Your hurty finger is a joke.  Suck it up buttercup) so I deleted it and wont ask for help from patients again.I hope doctors will be more understanding. I get it, that there are other people who have it much, much worse.   But I dont have chronic pain so I never developed a high pain tolerance.  Typing this is killing me. Ive had a broken bones, a vaginal delivery, wisdom tooth surgery, and swollen joints, but none of those hurt that bad.  When Ive broken a bone, its only been blindingly painful for ten or fifteen minutes, then it settles down.  Then a few days of throbbing and aching thats relieved with rest and Advil.  This is the first time Ive had pain that Advil cant relieve and that doesnt settle down with time or rest.  I know other people with bad backs or arthritis have it worse.  I dont need to be told that.  But for me, this is too much.  What can cause this?The doctors seem confident that its not just psychological.But I cant shake the fact that I get more symptoms when Im sad or stressed.  I dont have any chronic mental illnesses, but I go through short periods of feeling down or anxious.  At the hospital, I held it together when they took off the black thumb.  I told myself that it was ok, that the pain was finally gone, that half a thumb isnt that important, that its my non-dominant hand, that I dont need a full left thumb to type or do most activities.  When I got home, I was so happy to be pain free and I had so much to catch up on, I just didnt think about it.  But then I looked at the discharge paperwork and saw that under Reason For Visit, they wrote GANGRENE, WET.  I knew that the thumb wasnt good, but seeing it called GANGRENE made me feel so repulsive and sad.  I spent 10 or 15 minutes just crying.  It was right after that little breakdown that all the other fingers started hurting and turning black.  Could all that crying have caused it?Theres also an odd discrepancy.  My black fingers hurt so much but my black toes dont hurt at all.  How is that possible unless the pain is all in my head?I am desperate for answers or relief if anyone can help.  Thank you to anyone who has read this far.TL-DR:  What causes rotting fingers, rotting blood, rotting platelets, leukocyto elastic vasculitis, swelling, rashes, purpuras, and maybe subclinical hypothyroidism but without showing up on normal blood tests for autoimmune or other diseases?