Hi everyone my name is Jenny and I have inflammatory arthritis fibromyalgia sojogerns c-ptsd anxiety major depression. And I am 43 years old., today my challenge today is exhaustion and severe pain from head to toe.
My name is T.J.
I grew up in the 80s/90s where being “double-jointed” was just a weird quirk that a couple of people had – well, the women on both sides of my family were affected pretty hard by the hypermobility. I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unair conditioned in Texas. I was helping my mother with dishes when I started to feel slightly dizzy, so I held onto the counter-top. When I woke up after passing out, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.
And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.
Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).
So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, trochanteric bursitis and inflammatory arthritis – after years and years(as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid.
When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind. I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who knows that I would have zero issue, as long as he used caution around crowds.
My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.
My Rheumatologist diagnosed me with inflammatory Arthritis due to the Primary Sjogrens Syndrome I have. When I research this, all I get is results for Rheumatoid Arthritis and Psoriatic Arthritis. Is this a separate thing or is it really just the beginning stages of Rheumatoid or Psoriatic Arthritis? Anybody know?
At the age of 44, I have lived the life of a much older person. My story began at age 18, when you begin your adult life...in my case, my IBD life. Some of you may have similar experiences and this may be a safe space to share.
A diagnosis of Ulcerative Colitis in 1996, caused a cycle of flare and remission for four years. During that time I finished high school, completed my college program, worked full time, moved into my own place for the first time, met my future husband, and attempted to live life without my diagnosis. All that changed in 2000, my health deteriorated and a total colectomy and pouch were created over the course of 3 surgeries and 4 admissions. Doctors back then were hopeful that I would be able to have surgery to reverse the pouch and function almost "normally". My body rejected this idea and I went through about 6 more surgeries to repair fistulas. Ultimately leading to a life of a pouch for the next 18 years. Those years were somewhat uneventful, a few more surgeries, but I was mostly by definition, "healthy" as the colon was completely removed.
Made some life changes that were healthy, such as divorce, moved to a different city, and settled on another surgery (the BCIR in 2018). Most of the people living with IBD have not had this surgery and so I become a bit of a unicorn to anyone working with me to get an X-ray, MRI, and CT scan. It's an explanation that only leads to more questions. I hear, "So you have an ostomy?" and "Do you have a bag?" and "How do you go to the bathroom?" and "Why do you need those supplies?" After the surgery, I developed pouchitis and changed my eating habits. This cleared the reoccurring inflammation after a couple months but didn't help with the next blow to my life. My dad committed suicide and that threw my body into a trauma wreck. I developed another diagnosis, Inflammatory Arthritis that was severe. Being in full body pain for about 3 months until I could find the right medication to provide some relief, Humira.
Now I am working with two diagnoses that cause inflammation. In addition, I was diagnosis with anemia and depression. Over the next 3 years I was in pain due to a body that was attacking itself. I developed a belly abscess in January 2020 and admitted for 3 days. In the surgery follow up appts. I was pushed and poked and developed abdominal pain that wouldn't go away that was severe. This pain carried with me until September 2021 when a new health team diagnosed me with Crohn's. Are you keeping count, Ulcerative Colitis, Crohn's, Depression, Arthritis, and Anemia. In order to treatment the Crohn's I had to stop Humira, start Remicade and prednisone. I have finished my loading dose of Remicade and am now being switched to Inflectra (insurance forcing the change). I am taking Methotrexate via injection due to the pills causing nausea and was able to stop the Prednisone.
At present, my belly is uncomfortable most days, on a prednisone taper, and face swelling.
Sometimes I find it hard to tell whether I'm getting a migraine or a headache. I get headaches related to my inflammatory arthritis sometimes and so far the only difference I can spot between migraines and headaches is the light and sound sensitivity with migraines. That can take a little while to kick in though as the migraine ramps up. Now, I take zolmytriptan for migraines and it works best if taken as early as possible, but doesn't work if taken too often. This puts me in a tricky spot sometimes as to whether to take it or not. Is it a migraine starting or just a headache? 🤷♀️ So I'm wondering, what symptoms do you get in the early stages of a migraine?
Hi! I’m new and looking forward to connecting. I have neuropathy, vasculitis, lipodermatosclerosis, inflammatory arthritis, and hypothyroid. It all boils down to lots of various aches and pains along with depression. Today it’s the lipoderm the most so my lower legs are on fire. Planning on bringing in the new year with a new can do attitude. Hope everyone has a good and safe New Year Eve.
I am in chronic pain daily. My symptoms points towards Autoimmune disease but no one can identify which yet (it has been 7 years and counting since first symptoms). I experience more flare-ups than remissions. Most days im too fatigued and nauseous to do anything (eat, clean, drive, walk, situp, stand, wash dishes etc). I often wake up feeling paralysis in both legs. Having to drag my legs around after some hours on the heating pad. I constantly get sent to different specialists for each symptom without anyone attempting to connect dots(have experienced inflammation in heart area, kidney area, nostrils, hips, feet,face). With a lot of unexplained rashes that turn dry and flaky on my scalp, inside ears, on face, eyebrows, outside and inside nose etc. Along with cognitive issues pertaining memory, blurred vision and headaches. Soooo much medication is thrown at me on a monthly basis and nothing is working. Slowly losing faith in my doctor. Any experienced advice or guidance would be gratefully appreciated. #AutoimmuneDisease #Undiagnosed #ChronicPain #Headaches #feelingdefeated #SystemicLupusErythematosus #MultipleSclerosis #InflammatoryArthritis #Advice #guidance #Paralysis