Hypohidrosis


Well, I never mentioned how the rheumatologist appointment went. I guess that’s because it happened almost exactly as I a predicted. It was bad. How bad was it? It was so bad that I wish I could time travel to the past and let Rodney Dangerfield use it as material for some of his “How bad was it?/It was so bad” jokes. Everything was fine until the doctor came in. He half-listened to my complaint, said that anhidrosis isn’t a symptom of anything he treats, and told me that all that he ever saw me for was “loose joints” and pain. I told him that the family doctor said she thought my “loose joints” and lack of sweat were related. He said no. I said she thought he should treat it because he treats connective tissue disease. He went into a long rambling session about how my family doctor meant that he treats autoimmune diseases and that “loose joints” aren’t really a connective tissue disease because they don’t involve the immune system. He said that “loose joints” are a collagen issue and that they only cause problems in the joints themselves. I tried correcting him on his ignorance, but when I did, he repeated his rambling.  My mom asked if it could be from the Sjögren’s/UCTD. He said it was possible, but that those were connective tissue diseases & I didn’t have connective tissue diseases. She mentioned Mamama had Sjögren’s and he said it was possible that I inherited it from her. That “Sjögren’s is genetic” part of his ramblings was almost verbatim from the ramblings he made that time seven years ago when I tested “positive” for the antibodies related to Sjögren’s. He looked in my mouth and said it was dry. He asked about my eyes & I told him that the ophthalmologist had done the paper test years ago. He asked about the results and I practically rolled by sore, dry eyes at him as I told him that they’d been dry. He said he would test me again for Sjögren’s and that if it was positive he might consider putting me on Pilocarpine.  He then said something about Pilocarpine costing $95/month and insurance never covers it. You know, so I wouldn’t expect a prescription for it. The funny thing is that I knew he was bullshitting on that part. You see, I had been given a prescription for a medication called Salagen given to me by the UAB doctors a few months ago. They’d noticed my mouth dried out too much for me to talk. Salagen is the brand name of Pilocarpine. It costs $1.20 for 120 pills; 120 pills is a monthly supply. I left the appointment feeling like the air had been sucked out of my lungs. By the end of the appointment, I didn’t know whether I was pissed at him or myself. The longer he rambled, the more I felt myself retreating into the “doesn’t speak up for herself” zone. I started feeling incompetent. I started feeling like maybe I was the one who was uninformed.  But my family and my therapist wouldn’t stand for that thinking.  I’m not the one who: Doesn’t understand that connective tissue disease is an umbrella term for many kinds of diseases.1 Doesn’t understand that many autoimmune and non-autoimmune diseases can cause sweating to cease.  Doesn’t keep adequate patient records.  Doesn’t listen to the patient or their family.  Failed to prepare or educate myself before the appointment.  I’m not the incompetent one. He is.  My mom said I need a new rheumatologist. When I told Debbie about the appointment & about the phone calls, she said I need a new rheumatologist. Guess what I discovered in my search got rheumatologists who take my insurance?! I’m pretty much stuck with a doctor who doesn’t know what the hell he is doing.  I hate the phrase “fuck my life” but it almost seems appropriate here.  Photo credit: C_Dave via Visual Hunt / CC BY-NC Joint Hypermobility Syndrome & Ehlers-Danlos are connective tissue diseases. ↩

Call Me Janet the Divine. On Second Thought, Don’t. 


I got another call from the nurse of the family medicine doctor today about the lack of sweat. She (the doctor) is still of the opinion that the rheumatologist is the best option. When I told the nurse what happened, she suggested that I just wait until the next appointment so I could tell the doctor. When I told her that my next appointment would be in around four months, she was a little less comfortable with the idea of me waiting. When I asked if she thought the family doctor might have an idea for a referral to a different specialty, she said that they wanted it going through the rheumatologist. So I decided to wait.  My mom, on the other hand, decided that the weather that occurs in the southeastern United States during the summer was too dangerous to risk that long of a wait;12 she called the office to talk to the nurse.3 Guess. What. Happened.  The nurse said I’d talked to the doctor on Wednesday.4 She said the doctor recommended I go to a walk-in for a potentially life-threatening condition.5 She said that nothing I see the rheumatologist for could cause a lack of sweat & that they don’t treat anything that causes that.6  My mother wasn’t having that, so this nurse said that she would talk to the rheumatologist, if he was still at the office,7 to see what he thought. Within an hour, she got a call back.   He still didn’t think anything he treats me8 for, but that he will reevaluate me in two weeks. He doubts there’s anything wrong that he treats me for, but he will check to see if there’s anything new wrong with me. Not to worry, when he checks, absolutely nothing will be wrong. There’s no possible way for me to actually be sick because I just have “loose” joints and need to get more sleep. This isn’t me being a defeatist or cynical. It isn’t me wanting to trash some well-meaning doctor who actually gives a fuck about what’s going on, but who I’m maligning for no good reason. This is me realizing that my rheumatologist has a tendency to be lazy asshole when it comes to actually treating me. This isn’t just my interpretation of his behavior. Anyone who has accompanied me to the appointment and met the man has the same assessment of him. He is dismissive. He is abrupt. He is out the door before I’m able to open my mouth and get words out.9 So I’m not anticipating any change in my condition any time soon.  Photo via Visualhunt From the Mayo Clinic: Anhidrosis is the inability to sweat normally. When you don’t sweat (perspire), your body can’t cool itself, which can lead to overheating and sometimes to heatstroke — a potentially fatal condition. ↩From the U.S. National Library of Medicine & the NIH: An abnormal lack of sweat in response to heat may be harmful, because sweating allows heat to be released from the body. The medical term for absent sweating is anhidrosis. ↩You can’t be surprised by her lack of boundaries. ↩Nope. ↩He may have told the nurse this. He did not tell me this. If he had, I’d be even more distressed by a doctor wanting me to go to a walk-in for something so serious. ↩I’ve come to the conclusion that my rheumatologist doesn’t bother to actually treat anything. ↩His hours are like four hours a day, two days a week. ↩Treats means a yearly appointment that he spends three to five minutes in max, ignores what I say, tells me to lose weight, ignores anything I say about dryness or subluxated joints, says soft braces and plenty of sleep will fix issues that end up requiring surgery, and prescribes another twelve months of Flexeril, even if I tell him that it’s not even working. This has been going on for years now. ↩Anxiety makes actually speaking about what’s wrong very difficult. If I can get a doctor or anyone else to give me a minute to adjust, I can actually talk to them to some degree. I can even stand up for myself sometimes. ↩

I Can’t Live, If Living Is Without Sweat



I’m not sure how much I’ve talked about this on here, but here goes. I have trouble regulating my body temperature. I don’t sweat enough to cool down. I don’t exactly know why. It’s probably due to one connective tissue issue or another.  Not sweating can be dangerous, especially when exercising,12 so when I saw the family practice doctor today, I told her. She said I should talk to my rheumatologist or his nurse. I called the rheumatologist’s office & the nurse told me that she’d never heard of anhidrosis/hypohidrosis34 and that I should call: (a.) my endocrinologist,56 (b.) family doctor,7 or (c.) go to a walk-in clinic.8  I asked was she sure that Sjögren’s/UCTD couldn’t possibly cause a person to not sweat. She assured me that lack of sweat has absolutely nothing to do with either condition.9 And I’m sorry, but who goes to a walk-in clinic for an issue that even a speciality clinic is saying they’re unfamiliar with? Why would you even recommend that?10 If you’re going to recommend calling a doctor, why not recommend a dermatologist or a neurologist. I no longer have either of those, but at least skin and the nervous system have something to do with a lack of perspiration.  I called the family practice clinic back and asked them to leave a message for my doctor. They said she’d call back. She didn’t. I guess maybe it’s been queued for sometime later, but I am not going to hold my breath on it.  I am frustrated that some offices don’t take real problems seriously.11 And I am even more frustrated that I cannot change to doctors/offices who/that do care because of insurance.12 Photo credit: Kullez via VisualHunt.com / CC BY On the 18th, when it was 80°F outside, I went for a 45 minute walk & a 18 minute walk. I came back when the left side of my head felt like it was being destroyed by some very angry person with a hammer. I was nauseated, had some gross intestinal issues, my muscles were cramping, my skin was bright red, and I had one or two drops of sweat on my face. The rest of me was dry. It took 3 days to recover. ↩I tried a short walk this week in cooler weather with similar outcomes, but recovered in hours. ↩the actual terms for the issue ↩I used lay terms while describing the issue. ↩I don’t have an endocrinologist. ↩Sweat glands are part of the exocrine system anyway, not the endocrine system. ↩The one that said to call her. ↩Yeah, really. ↩That’s why NIH has 14 pages of journal articles on Sjögren’s and anhidrosis. Because there is absolutely no link at all. Ever. And why it’s actually something that has been known to impact patients with Sjögren’s, Ehlers-Danlos, UCTD, MCTD, Fibromyalgia, Dysautonomia, etc., which are all treated by…rheumatologists! ↩And when it’s a condition that can be fatal? No, you don’t ship someone to a doc-in-the-box when you can’t be assed to understand potential symptoms of diseases you treat every day. ↩And, in case someone wants to launch into some rant about how they think I’m making this up, go talk to a wall. It will give you all the attention you deserve. ↩The American medical system is super fucked up. ↩

Can’t Sweat Any of the Stuff