These are the new symptoms:
Heat in knees- using a heating blanket over my legs makes my knees throb and turn red with heat--never felt this before
Fluid in knees- some parts spongy, others firm, restricts movement, stiffness, pain when bent or straight, worst in morning or after inactivity, tender to the touch--all new
Bubbles popping in knees- very painful and limits walking. Actually happens constantly when walking, distorting my gait. When a bubble pops during weight bearing, my leg collapses and I fall and cry out in pain--all new
A few plaques: one on each thigh, back of scalp, and a little on the back/side of neck. Mildly itchy and occasionally stings a bit
A lot of new rough/bumpy skin patches that itch mildly. The first few weeks, I could feel at least one new patch every single day.
Severe pain that started in thumb joint in right hand, but spread to other joints in the hand, lost grip strength, sharp pain on moving wrong
Base of both hands became too painful to use a cane or walker.
Weight loss from 99 to 92 lbs. in March, despite adding a new food (hemp seeds) and calories
Severe upper back pain that has lessened in intensity with extra bedding. It was preventing sleep, waking up in pain. But I became newly sensitized to my bedding (memory foam) that I can't live without. Big source of stress trying to figure out how to keep being able to sleep.
Jaw pain so severe that eating was very difficult for at least a month. It’s eased off but not gone. Does anything ever really go away? It’s all so progressive.
Neuromuscular stuff: Aside from all of this, I seem to be losing access to my muscles at times. My legs are extremely weak, making standing up and walking even more difficult. My right grip strength is also gone. And the apparent impossibility of correcting the vision in my right eye is thought to be due to a muscular issue, where the muscles that help the eye focus are not working correctly. My vision goes in and out of focus a lot, and my right eye cannot be corrected. (I believe this after 2+ hours of intensive eye exams.)
All of my other joints are feeling more strain due to the extreme weakness and compensation. I am quickly becoming deformed.
Precipitating factors:
7 week migraine with brainstem aura associated with the use of our building’s heat. I had to stop using the heat, and that originally resolved the issue with losing consciousness completely around the New Year. But now other triggers are causing these episodes frequently. Frequent repeated and prolonged loss of consciousness with all associated aura symptoms (I’ll describe these another time.)
Neighbor started vaping inside after the new year, and vape fumes fill our apartment (We got a new mega air purifier to help.--It does. But not a cure-all.)
Left the apartment with much more frequency for eye exams and housing search visits. In case you were wondering if leaving home would ease my symptoms.
Various exposures/repercussions
Spike in stress due to the housing search. Episodes of panic and increased anxiety related to this hopeless search and the effects on my body of "testing out" new environments. I have truly hated this fruitless process, and the toll it takes on my body, my wellbeing, and my relationships. Most of the time, I am not even able to engage in thinking about it. And it has made me so irritable and difficult to be around and interact with.
Interaction with medical personnel also triggers high stress.
The time change really affected me, as usual, and I still haven’t regulated since then. It’s such an extra bodily stressor for me.
March 28th: Went on a house visit, car ride on the highway. Never entered the home. But discomfort in the car turned to full body pain on the way home. I used a cane to get to the car, but upon getting out, I could no longer use a walker or a cane due to hand pain. Mobility almost completely gone, as only tiny steps with crooked, stiff legs are possible.
March 29th: I first noticed the fever. Chills and body pain. Skin sensitivity. Heart rate elevated
March 30th: temp reached 100.5. Heart rate frequently elevating throughout the day while feeling faint (up to 100). Skin sensitivity I associate with fever/infection as well as increased head pain, muscle ache, bladder pain, and malaise/nausea. Flank pain and pleurisy pain. Dry cough began late at night. Bad headache. Late night when vitals would normally be very low, heart pounding with elevated vitals. 95/64 p95 even many hours after food. (4:30am) All would normally be calm now on my night meds. But the body is in chaos from the fever.
March 31st: huge pressure drop to complicate things. Fever persisted, high late at night. Cough only appears at night. It feels hard to get a full breath. Same aches and pains and malaise.
April 1st: Even worse, unfortunately, due to various circumstances. Fever, cough, and unbelievable full body pain. Grip even worse. So much aching and throbbing literally from head to toe. Absolutely collapsing in pathetic cries of pain.
The question is if the fever is a cause or a symptom of this flare. Is there some infection I am fighting? Or is there no infection, and this is just an immune freak out? I have been more fatigued and actually falling asleep easier (often before I go to bed), which is highly unusual for me.
This reminds me very much of the time in 2017 when I thought I got a bug bite on my leg. Weird looking one. The doctor didn't want to speculate if it was a bite. Now, I know it looked like a plaque. With it came fever and extreme sacrum pain. Another crying car ride. Probably an early flare in this disease process. Very similar pattern. But again, was an infection driving symptoms, or is the fever part of the symptoms of an immunological flare? Unfortunately, I also have a history of fevers of unknown origin in the last several years, though I think this is my first time since 2020. I've never had a Covid scare. I really am starting to doubt an actual infection.
I have had a plaque here and there over the years that I've documented with photos. I also have had a milder version of knee swelling for almost a decade, necessitating constant compression. But I was still associating it with EDS and the wear and tear of very blatant tibiofibular instability that I've always had. This new knee swelling happened over the course of two days, and the compression is still essential, but can only contain it so much. It is all around and within the knee joints now.
I have always gotten very quiet with high pain levels until now. These various pains cause me to cry out suddenly when I move or grip or step wrong. Very sharp and sudden pains. I’m also less stoic and more prone to random crying spells. For example, sensory overload used to make me zone out, but now I may burst into tears. Frustration at dropping something I won’t be able to retrieve can also cause me to fall apart. I truly don’t feel like myself. I hate this version of me. I don't know how to talk to people, because no one wants to hear that things are yet again even worse. And I'm not really capable of talking about it. Thus the writing.
This deterioration is not sustainable, as I now need help with activities of daily living. Getting dressed and moving items from room to room is difficult. We have brought in toilet rails, sofa rails, a cane, and a walker. But I cannot use the mobility aids with my hands like this. New salt grinder, new pill bottles, shoe horns. Cannot turn a doorknob with right hand. Can barely do it with left hand, which is worsening, probably from over-compensating for my right hand. Switched to using an electric toothbrush with left hand. But I'm even having trouble opening food storage containers (which I need do many times a day) and chapstick, opening windows to ventilate, and opening my water bottle to refill it. Obviously, trying to write is almost futile. My mom has very kindly volunteered to help me start my days, but she shouldn't have to. Instead of hanging out and de-stressing together, I just need help. And I can see that my misery is contagious. Since I cannot contribute to society in any meaningful way, all I have aimed for in years is to try to be a positive force for those in my daily life. That the good outweighs the bad. It's all I can hope for in life. But I am not able to achieve that right now.
These are just the new symptoms. They haven’t replaced anything. It’s all cumulative. Life feels impossible. Very overwhelmed. No intentions of going in the car again, certainly not until this fever/flare is over, if that's even possible. But then I would be too scared of flaring again if it does calm down. I feel a deep depression and a heavy dread and hopelessness. I am in emotional survival mode, unable to think beyond the needs of today. At times, I have focused on the need for an escape hatch by any means necessary. So better to avoid thinking about anything beyond the survival of today.
As usual, there are multiple contributors to this progression, including environmental stressors, emotional stressors, and perhaps an infectious stressor. It seems clear this has been an encroaching autoimmune condition that has never before presented with such clearcut symptoms. Many doctors have assumed there was some autoimmune process they just hadn’t yet identified, in addition to the already identified mast cell disease. The plaques of psoriasis are hard to deny, along with the practically overnight filling of my knees with fluid and extreme pain/stiffness. It all points toward psoriatic arthritis. (Although that doesn’t explain the muscular component) But knowing that isn't particularly useful information when I still can't tolerate leaving home or trying new treatments. I will be facing this at home, on my own, without any medical help, just like I always have to. Medicine has a solid track record of making my life even more impossible. And it goes without saying by now, but in-home care is also not made accessible for people like me. My body overreacts to the slightest assault. I cannot imagine how to go forward. So I won't imagine.
