Does anyone else also have Fibromyalgia? If so, what are your symptoms and what helps you most? What do your worst days look like?
I’m just starting to learn more about this. I was diagnosed with this and SICCA (although a couple rheumatologists suggested I have seronegative Sjogren’s).
I’ve experienced a sharp cognitive decline and have issues with short and long term memory loss. Is this similar to anyone else? I was attending nursing school (an accelerated private university) for my RN and during 2019 (after acing anatomy, physiology, and psychology) I couldn’t pass basic English and I knew I had a serious problem. However, I wouldn’t get properly diagnosed until the wheels came off in 2025 & I haven’t been able to work since 2022. I always preface my discussions with doctors saying, “I used to be smart, I promise.” Can anyone relate?
I’m a 49 yo F in perimenopause and wondering if there are any supplements (Besides a multi vitamin), that you guys can’t live without? Any recommendations?
I also suffer from Sjogren’s disease so my eyes, mouth, & nose are always bone dry causing a host of add’l problems.
I also have Ankylosing Spondylitis and suspected Sjogren’s disease on top of PsA. I’ve had symptoms for 15+ years but just pushed through. I’m a 49 yo female and was originally diagnosed in 2017 w/ AS & HLA B27+ w/ sacroilitis and the Rheumatologist told me that nothing was to be done at that time. Fast forward to 2022 and I became unable to work. Developed metabolic syndrome, tachycardia, hyperlipidemia, reactive arthritis and was declared prediabetic. My PCP discharged me saying I was too complicated. This was during COVID so I suffered and continued to go downhill. I’ve suffered from treatment resistant depression throughout the years. Extreme fatigue, anxiety, no motivation. 2023-26 was plagued with infections and I blew up with third spacing fluid retention due to the severity of my inflammation. Even my breathing has been compromised. In 2024 the Rheumatologist realized that I was in serious trouble. I was now unable to walk, wheelchair dependent and bedridden and unable to finish sentences, memory loss and unable to make new memories. Developed a tremor. My wrists, sausage fingers, nails, knees, elbows, toes were all compromised. After trying Hyrimoz & Cimzia, they had no affect. I was getting worse. My sweet innocent little girl was constantly stressed about losing her mom. ED MDs started turning me away stating that they don’t treat chronic illnesses. However, I had been going from provider to provider advocating professionally for myself and getting no where. In 2025 I finally found a qualified rheumatologist who cared and understood the big picture. She couldn’t believe the degree of systemic inflammation in a body but did say that with AS & PsA, it’s possible. She got me approved for a loading dose of Cocentyx within days and immediately got me in for an IV infusion. The problem was, I wasn’t given any information about how this infusion would affect me. Within 2 weeks I was hospitalized for a week due to a systemic MSSA infection. After that, another serious infection had me back in the hospital for another week at a level 1 trauma center. During the hospitalization, my husband acquired the pen so I wouldn’t miss a dose & gave it to me in the hospital. Big mistake. I then got oral & esophageal thrush and had an emergency endoscopy. Shortly after my bladder stopped functioning. I began experiencing Gastroparesis and difficulty breathing. I was being hospitalized monthly for lifesaving medications etc. It’s broken down my mind and body. I then was told that due to the severity of my conditions and infections I wasn’t a candidate for IL-17s. I have also tried Rinvoq and Simponi and both failed. My ONLY choices at this point are to try Taltz or go back on Cocentyx no loading doses. I tried Bimzelx on 7/23/26 and although my labs have already look promising, I developed oral thrush, oral herpes and significant mouth sores along with severe depression. I’ve been taking meds for the mouth stuff since 8/5/26 but I’m still plagued. The depression is worse. My PCP told me to go to infectious disease, who told me to go to an ENT:( My bladder started working again 6 months after it stopped. I’m really losing hope and if any of ya’ll have experienced anything similar please let me know I’m not alone. Chronic UTIs also plague me. I feel like giving up:(
I’m experiencing some issues with thrush and oral mouth sores along with a lack of taste/things tasting so badly:(
Anyone else? I’ve been on Nyastatin, Fluconazole etc since 8/5 and Valtrex but it’s not going away. Can anyone else relate? What helped you?
Has anyone else experienced/noticed a profound increase in depression and crying a lot? Should I mention this to my rheumatologist or PCP? Will it pass?
Hi guys! I have adrenal insufficiency that started last year but no one can tell me why or how. I have little QOL. I’m struggling and want to know if there’s anything (diet, supplements etc) that may be helpful? My acupuncture physician has also identified that they’re barely functioning. I do have an endocrinologist and I’m taking hydrocortisone (10mg in the am, 5mg @ noon & 5 @ 3pm) is this a high dose?
I also have 3 autoimmune diseases.
Ankylosing Spondylitis, Psoriatic Arthritis and Sjogren’s disease. Are there other specialists who can help?
I’m seeing a new dentist do they need to know? I usually forget to mention my adrenal insufficiency to new specialists.
Is anyone else here positive for this genetic marker? I passed this marker down to my daughter and feeling very guilty about this.
I was wondering if anyone else suffers from any other conditions?
I’ll start:
Ankylosing Spondylitis
Psoriatic Arthritis
PPP Psoriasis
Fibromyalgia
POTS
Adrenal insufficiency
Chronic migraines
GERD
Gastritis
Delayed stomach emptying
Chronic non-specific colitis
Sjogren’s disease
Dysautonomia
Excessive hair shedding
Difficulty taking deep breaths
Chronic pain
Chronic fatigue
Is this really related to my disease? Does anyone else experience this? It’s ridiculous and I feel powerless to stop it. Any suggestions?
I’m having a lot of hip pain and wondering how/if this is worth mentioning to my rheumatologist? Anyone else have hip pain?
I was wondering if anyone else suffers from other conditions? I’ll start:
Ankylosing Spondylitis
Psoriatic Arthritis
PPP Psoriasis
Fibromyalgia
POTS
Adrenal insufficiency
Chronic migraines
Gastritis
Delayed stomach emptying
Chronic non-specific colitis
I just started (Bimzelx) biologic last month and have had a really rough go at it. I always have the excessive dryness but it really seemed to ramp up. I developed TMJ, have no saliva(sandpaper tongue), no tears and severely dry everywhere!!
Can anyone else relate?
My Opthamologist says that I need plugs. I am battling a severe candida infection as well and although I am seeing systemic inflammation relief, it’s causing a lot of new issues/concerns.
Do I keep pushing through? Any suggestions?
Anyone else have suspected secondary Sjogren’s? Thank you for sharing your experience in advance. I really feel alone.
My Opthamologist wants me to try plugs for my dry eyes has anyone else had this done successfully? Please share your experience with me.
Has anyone else experienced this? If so, what helps? I also have mouth sores that are relentless.
I just started Bimzelx and I was in a very bad way. Vasculitis and third spacing fluid retention. I’ve already noticed some improvement but I have a horrible candida infection in my mouth and throat and my enthesitis is acting up worse than ever. I can barely talk. Severe dry eyes, mouth and nose. Sinus congestion, severe sore throat and my jaw is very swollen and painful. I scheduled a dental appointment for tomorrow but if anyone has any advice, or if you’ve experienced anything similar please let me know and thank you to everyone here.
I’ve been suffering for years with CRP levels in the 20’s+ but didn’t get a Rheumatologist to listen until last year and after being hospitalized for repeated infections and bedridden, I’m trying to rebuild my life. I am a 49yo female with a 10 yo daughter and a supportive husband. My eyes are rough and dry (I’m doing Prokera treatments), my mouth hurts and I’m battling a candida infection, my feet (heel pain) are horrible, my wrists and fingers are very painful and I can hardly grip/grasp anything. I’m scared is what I’m trying to say and just wondering if remission is possible? I just started Bimzelx and just need to know that it gets better right? My pain is horrible and I feel like a horrible mom because I can’t do the things other healthy moms do.
I have metabolic syndrome, high cholesterol, glucose (pre diabetes), ridiculous amounts of inflammation. Deconditioned, always exhausted, low bp, tachycardia, anemia etc. Just began the last biologic before clinical trials, Bimzelx. Already have a horrible candida infection. Need some words of advice/encouragement. I’ve been battling this for over a decade and was just recently diagnosed (2025) and trying everything possible to stay healthy and out of the hospital. It seems that every time I try a biologic (Hyrimoz, Cimzia, Rinvoq, Cocentyx, Simponi) I get sick. The years of chronic inflammation has taken a toll on my vascular system and I now have a port. I’m not sure how to help myself and I’m always exhausted. Also, I’m struggling with adrenal insufficiency and just need to know that there’s hope. I’m so deconditioned after being in a wheelchair and bedridden for the past year. I can hardly use my hands. I’m struggling with pelvic floor dysfunction and don’t want to be back on a catheter because of voiding dysfunction.
Has anyone else tried this artificial saliva spray? What’s your experience? I’ve tried everything (I think) and I can’t seem to find anything that lasts but this saliva spray may work well.
Since I take a biologic for my autoimmune/inflammatory diseases, I am constantly battling with this. My tongue and back of my throat hurts and is bright red from the severe inflammation. My tongue is solid white and also hurts. I’m on a 21 day course (7 days in) of Fluconazole 200mg/daily and Nyastatin 5mls / 4x daily and I feel frustrated with hardly no progress.