On January 24, 2020 I posted:
Thoughts when the pain is too much to bare. #Lupus #BipolarDepression
"I am trying so damn hard to have a positive outlook on life. But days like today, Lupus flare ups, make it really difficult to do that. Days like today when I cant even bring myself to get out of bed because the pain is too much and there are no meds strong enough to ease it. Days like today when the demons whisper in your ear that no one cares. Days like today make me want to give up. But I don't."
Today on July 17, 2022 I had another really bad lupus flare up. Today I went to get out of bed to use the restroom and fell over due to the pain.
Today my loving significant other rushed to my aid.
Today, my mom brought me McDonald's (not the best choice but she wanted a kid's meal).
Today, my counselor told me I have used my allotted time to throw a self-pity party and it was time to move on.
I gave myself grace and I allowed myself to have a positive outlook on life.
Today, I am no longer in remission and that's okay.
Today, I have a support team of loved ones surrounding me.
Today, I am not afraid to stand on my own two feet no matter how much it hurts.
Is joint pain part of APS? Is that why people with APS go to rheumatologists?
I have had APS for about 15 years but this is the first time I have had alot of joint pain. I've had migraines, brain fog, memory loss, strokes, leg pain, fatigue
Hi everyone! I stumbled on The Mighty while looking at memes and thought I would give this a try. I’m almost 4 months into my APS diagnosis and am still struggling to learn things I feel like I should know. Do you have any suggestions for good, easy to understand resources?
I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.
Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.
So how do I do it? How do I get through medical care without losing my mind?
Anyone have a good pep talk? :-) ❤️
#RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe
I have seen that quite a few people in my #APS support group have problems with #myoclonus, so I did a little checking; and found that it is not uncommon for people with APS to have the same #iscemic brain lesions and #white matter changes that I have.
Actually, people with APS haver a 10 times greater risk of having epilepsy than does the general population.
Anybody here have APS and Epilepsy?
Don’t get me wrong, healthy people make great friends but when you’re in a flare or going to the doctor every other day, they can’t relate and don’t understand what you’re going through. If you’re in the same boat as me, feel free to send me a message and I’ll gladly be your friend :) #Lupus #PosturalOrthostaticTachycardiaSyndrome #AntiphospholipidSyndrome #EhlersDanlosSyndrome #CeliacDisease #AddisonsDisease #MastCellActivationDisorder #Gastroparesis
Hi. I had an attack of Transverse Myelitis fourteen years ago in 2007. Thankfully, I have had a great deal of recovery with only slight disability remaining. A year and a half ago I had a meal at a restaurant with a friend. About half an hour later I passed out. My blood pressure went extremely low. I was taken to the hospital by ambulance. I was released a few days later with no diagnosis. Then, last September (2020), I had a second episode of Postprandial Syncope. I had eaten a veggie burger and some tempura green beans, so not a huge meal. I was subsequently hospitalized. A Cardiac Tilt Table Test showed abnormal autonomic function. My cardiologist said it was due to my heart having difficulty pumping blood back to my upper body due to my Transverse Myelitis lesion at T5-7. MRIs done at that time show my old TM lesion as well as two brain lesions that are enlarging, one in my right Inferior Frontal Lobe and one in my left Pons. My MRIs show a history of smallStrokes. They also show increasing white matter. These were compared to MRIs done fourteen years ago when I had my TM attack. I recently wore a Holter monitor, and it shows that my heart function is good.
My Neurodegerative Deseases doctor told me I don't have Multiple Sclerosis. I had a genetic test for hereditary Transthyretin Retinol Amyloidosis (hATTR). Thankfully, it was negative. A week ago I had two hours of Autonomic Testing including a Neurological Tilt Table Test. I also recently had two Biopsies on one of my legs that will be analyzed with a Red Stain Test. I haven't gotten back results for either of these.
Besides the Postprandial Syncope, and bouts of serious frequent Diarrhea, I also have an increasing problem with Myoclonus. It occurs frequently when I am ill of tired. I do not loose consciousness during these seizures. This has been going on for years, but is now getting much worse.
Besides Transverse Myelitis, in 2007 I was diagnosed with Antiphospholipid Syndrome. In 1991 had Thyroid Cancer with Follicular Adenoma and Papillary carcinoma. I have post surgical Hypoparathyroidism from that surgery. In 1984 I had a hysterectomy due to a ruptured Uterus with Adenomyosis. About a year and a half after that, I had an Oophorectory because of rupturing blood filled growths on my ovaries. I also have well controlled Adult Onset Asthma.
I'm listing all this old medical history because who knows, maybe it bears some relationship to my current Autonomic problems.
My question is, does anyone have anything resembling my weird cluster of symptoms, especially the digestive problems and myoclonus? Please let me know if you do. I feel very alone in this journey and would appreciate any suggestions on what to pursue with my Neurodegerative Specialist.