Uveitis

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    Community Voices

    I'm new here!

    Hi, my name is Chala1105. I’m new to The Mighty and look forward to sharing my story.

    I'm 34, married and mama to 2 daughters. I was diagnosed with Rheumatoid Arthritis 2 years ago and am on my 3rd and 4th medications for it. I have since been diagnosed with fibromyalgia, microscopic colitis, and chronic uveitis. I have had anxiety/depression most of my life and having these conditions exacerbates my mental health issues. I look forward to making connections within this community.

    #MightyTogether

    #Anxiety

    #Depression

    #Migraine

    #Fibromyalgia

    #RheumatoidArthritis

    9 people are talking about this
    Maggie Goodman

    Signs and Symptoms That Show Your Crohn's Disease May Be Worsening

    Forty percent of people with inflammatory bowel disease (IBD) can experience extra-intestinal manifestations (EIMS): The reasons are not clear as to why they develop, but changes in their symptoms will progress or worsen over time. The most common ones are: 1. Arthritis: Inflames joints which may flare up when Crohn’s is active or develop a chronic condition that can flare and linger. When the GI symptoms have resolved, arthritis will improve as well. 2. Liver issues: A common and fairly minor complication is fatty liver disease. It doesn’t usually cause symptoms or require treatment. Primary sclerosis cholangitis can cause severe inflammation, scarring and narrowing of the bile ducts. It’s a progressive EIM that may develop into cirrhosis and cancer of the liver. 3. Eye disorders: Eye complications are usually treatable and not likely to cause loss of vision. Uveitis can cause pain in the middle eye layer along with blurred vision, light sensitivity and headaches which may come on suddenly or gradually. Early recognition is important as it can become a medical emergency that may cause visiting loss if left untreated. 4. Gallstones: Crohn’s patients are a higher risk for developing gallstones, so it’s suggested they eat a low-fat diet to avoid any problems. Registered dietitians can educate those who need information on how to find foods and make meals that are low in fat content. 5. Kidney Stones: Crohn’s patients with small bowel disease as well as those who’ve had many small-bowel resections have kidney stone occurrences most often. Sharp pain in the sides, nausea and vomiting are the symptoms if a stone is present. They can be prevented by having a low-fat and low-oxalate diet. (Oxalate is a chemical that is found in plant foods such as spinach, bran, nuts, chips, and French fries.) Drink plenty of fluids that contain electrolytes. Treatment varies due to the severity of a patient’s symptoms. They may also need a consult with a nephrologist or urologist. 6. Osteoporosis: Those who have IBD are at a higher risk of getting this.  Bones become weak and brittle. Symptoms in the early stages include back pain, caused by a fractured or collapsed vertebra, loss of height over time, a stooped posture and a bone that breaks easier than expected. Having good nutrition and regular exercise is essential to keep the bones healthy. Crohn’s disease not only affects the digestive system, but it can also affect different parts of the body causing inflammation. Symptoms can vary in each patient and will either improve or worsen over time. If treatment has stopped working, the physician needs to know right away so something else can be done to see if it will bring relief to the patient.

    Community Voices

    Does anyone get facial tingling?

    I have all sorts of neuropathy, some from back/disc stuff and some that is something else ..? Rheumatology tested for auto immune stuff when uveitis was discovered and nothing definitive. Need to see neuro. T is just so hard to have a lack of diagnosis/help for any of it. And they have been saying it sounds like Fibro no matter what, but primary care doctor wants to keep watch for lupus or MS due to variant symptoms. Ugh just so frustrated and scared all the time because there is constant pain and sporadic neuropathy, but this new facial tingling has me extra freaked. Thanks for letting me get that all out. #FibromyalgiaDiagnosis #Fibromyaliga #Neuropathy

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    Community Voices

    I got Uveitis in grad school and got eyedrops to treat and I feel like I’m getting it in left eye. Does getting extra imuno response imply a flare?

    Community Voices

    How to use electronics with Chronic #Anterior Uveitis

    I have had iritis for the last three years, now developing cataracts and an area of retinal thinning that has to be watched. I have had to live in near total darkness, with the wrap around dark sunglasses on day and night, avoid going outside and avoid using electronic devices. I have been trying to find a way to use a computer without being limited to 15 minutes of reading---image type things bother me less. I have dimmed my screen as much as I can, and I have removed the blue light. Thank you....

    Community Voices

    “Cursed and Gifted with AS”

    March 1, 2018—Yay! I do have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms. This happened 37 years after my first symptom as a teenager, and almost 30 years after I began having chronic pain and other symptoms in parts of the body known to be affected by AS. Although some of my pain began after very minor injuries, I believe the chronic inflammation caused by AS was at the root of my health problems.

    It’s genetic, man: My father and youngest brother, both named Rubin, had AS. My father’s symptoms began at age 18 with his first bout of uveitis. He soon developed unexplained knee and shoulder pain. In later years, he had GERD, a hip replacement, aortic valve disease, and colon cancer. His spine fused completely when he was in his 50s, and when he was 76, he fell and broke his neck in five places. He died at age 84 of a subdural hematoma.

    “Little” Rubin’s battle with AS began with ulcerative colitis, which was initially misdiagnosed as irritable bowel syndrome (IBS). He also had chronic back and neck pain with very limited flexibility; he appeared to be fused like our father. Little Rubin eventually developed primary sclerosing cholangitis and bile duct cancer that I believe were complications of his AS-related colitis, and he passed away at age 50—just six months after our father died.

    My story is similar to theirs, but like all AS patients, it’s different in its own way. The following is a timeline of my journey with AS:

    Fall 1981—First shot fired: I was an active junior in high school when I began having unexplained fatigue. I could hardly get out of bed and had low energy during the day. My father, who besides having severe AS was an amputee with one leg, accused his able-bodied daughter of being lazy. I soon found that nicotine and caffeine helped me “manage” my fatigue, but after I gave them up many years later, my fatigue got progressively worse.

    May 1989—Release the Kraken: I enlisted in the navy, and during boot camp I began having severe stomach pain and chronic constipation that was diagnosed as irritable bowel syndrome (IBS). After boot camp, I twisted my back slightly but developed persistent, severe pain that was diagnosed as chronic mid-back strain. Just two months after I injured my back, I hyperextended my knee and was diagnosed with chronic right knee strain. Why I had sudden, persistent pain was never investigated while I was in the service. I have dealt with chronic bowel, back, and knee pain ever since.

    After having two major injuries in my first six months of active duty, I was placed on permanent light duty. Additionally, I was considered unfit for ship duty, so my seafaring dreams were crushed. At age 25, this was just the first of many disappointments caused by AS.

    December 1992—Say hello to a new pain: One month after my son was born, I felt a sharp pain in my left hip that shot down to my knee. I was diagnosed with sciatica, which the doctor said was likely caused by the trauma of childbirth. Regular stretching helps, but I still get flares several times a year that hamper my mobility.

    1998—Ah, my neck! I was rear-ended, and although the damage to my car was very minimal, I developed severe neck pain. I’d had no previous neck injuries, but I had herniated discs in three places. The natural curvature had straightened as well. The pain from that injury resolved, but I still have unexplained, extensive damage to my cervical spine and recurrent neck pain.

    1999—Brace yourself: I started to get numbness, tingling, and pain in both wrists and hands that was diagnosed as carpal tunnel syndrome. Shortly after, I was diagnosed with GERD (GERD), and years later, with chronic gastritis. I reduced my digestive symptoms with medication and dietary changes, but they have persisted.

    May 2000: Missed it by that much: After driving cross country, my back pain flared, and the x-ray showed “sclerosis” of my sacroiliac joint. I later learned that sclerosis (thickening or hardening of bone) is how sacroiliitis, an AS marker, can appear on an x-ray. The doctor didn’t mention this, but he tested me for the HLA-B27 gene. When it was negative, he diagnosed me with sacroiliac joint dysfunction. I received the same treatment that I’d gotten up until that point: physical therapy, NSAIDS, and painkillers.

    January 2005—…and broke my sacroiliac: I bent to lift a bench when I suddenly felt such a sharp pain near my tailbone that I couldn’t stand back up. I was diagnosed with facet joint arthropathy and low back sprain, and received my first spinal injections. I was off work for five months, and at age 40 I began to realize that the biggest struggle of my life was going to be living in my own body.

    2008-2010—Deterioration: My life became a pattern of manageable pain periodically interrupted by very painful flares. Now a single mother, I started working full time as an auto claims adjuster. Within months of driving hundreds of miles a week, my neck, back, and wrist pain flared up worse than they ever had. I was on disability for almost two years this time, during which my father and brother died. After their deaths, I became afraid I had AS, so I saw another doctor. This time, the x-ray of my sacroiliac joint was “unremarkable”, and I was still HLA-B27 negative, so he told me I didn’t have AS. He explained that my entire spine simply had degenerative disc disease.

    2010-2017—Voodoo doll: During these years, I developed several new recurring symptoms: tenderness and pain in my chest and outer hips and thighs; pain in my thumb, heel, and elbow; shortness of breath; and excess protein and trace blood in my urine. I became depressed dealing with all this pain, and I’m sure my emotional state worsened my physical symptoms. I switched to a desk job, but sitting all day seemed to aggravate my symptoms even more.

    In this 8-year period, I managed my pain with seven joint surgeries and numerous injections into ten different joints. I endured these procedures because I couldn’t take NSAIDS by mouth anymore. I also spent a small fortune on massages, heating pads, ice packs, braces, and seat cushions, and Biofreeze. I did get diagnosed with fibromyalgia in 2014, but the treatment for it had no effect on my joint and digestive symptoms.

    Not surprisingly, working full-time became impossible, so I retired on disability in 2014. Fortunately, I managed to earn my master’s degree in 2010, and started teaching English as a Second Language to adults part-time after I retired. I love what I do, and it’s been a great diversion.

    2018—Sick and tired of being sick and tired: After nearly 30 years of chronic pain and digestive issues, I’d gotten used to living with regular discomfort. However, I was growing weary of the flares, which were occurring more often and lasting longer (and now included debilitating fatigue and feverishness). Even the stiffness in my back in the morning, which used to be sporadic, had become a daily occurrence. It was like the first day of the flu every single day. When I could take it no longer, my only option was to go to the doctor for a Toradol (an NSAID) shot.

    I was also an emotional wreck. Relieving stress was difficult. I had no energy for exercise, and leisure activities I’d previously enjoyed now increased my pain. I avoided social activities because of anticipated pain, but I was also tired of being housebound “socializing” through social media. Furthermore, I was angry that I although I was well-educated and experienced, my health had killed my career and stifled my earning potential. Worst of all, my disease had put a strain on my marriage and revealed how unsupportive some of my friends and family were. I was even called a hypochondriac. I became despondent, and occasionally suicidal.

    Fortunately, when I reached the end of my rope, there was…Google. It started when I had a CT scan for an unrelated condition. The report said I had sacroiliitis and osteitis pubis—two diseases I’d never heard of, but had been suffering from for years. I googled their causes, and Ankylosing Spondylitis was all over the search results. I also discovered that my other recurrent conditions (costochondritis, trochanter bursitis, Achilles tendonitis, tennis and golfer’s elbow, De Quervain’s tenosynovitis) were possibly AS-related enthesitis.

    I was convinced now that I had AS, but I remembered the HLA-B27 gene issue, so I did some research. I’m a black female, and I was surprised to learn that about half of African Americans with AS don’t have the gene. This wasn’t new information—it was discovered in the 1970s. Unfortunately, the doctors I’d seen up until then believed AS only happened to folks who were HLA-B27 positive, regardless of their symptoms.

    Today— Acceptance and renewal: Armed with knowledge about AS and determined to have a thorough workup this time, I was fortunate to find a rheumatologist who really listened. He took my full history and ordered imaging studies of my entire spine, which showed active sacroiliitis and bone marrow edema (inflammation in the bone), two AS diagnostic criteria. He diagnosed me with AS when he got the test results and established a treatment plan. I was so relieved that I just sat in my car after the appointment and cried like a baby.

    My first treatment was the biologic, Humira, which stopped working after several months. Now I’m on Enbrel, which helped give me my life back. I also manage my disease with regular stretching, exercise and massages, and I’ve found new leisure activities to relieve stress. Although I still live with daily pain and fatigue and occasional major flares, I’ve accepted my new life and no longer feel hopeless about my situation.

    Lastly, I’ve also learned to forgive the people who haven’t been there for me and truly appreciate the angels who have. AS has been a curse and a gift in my life. It’s broken me physically over the years, but it’s also strengthened my resolve to live life to the fullest. Today, I’m the best I’ve ever been.

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    Community Voices

    Uveitis Pars Planitis... anyone else have this too?

    I’ve had this diagnosis since I was 15 (now 24), and I have never met or spoken to anyone else who has it. It can vary in its severity between individuals, and I would love to hear stories of those of you who have it. You are not alone! #VisionLoss #Uveitisparsplanitis #Inflammation #autoimmune

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    Community Voices

    Does your #ChronicIllness affect your eyes?

    <p>Does your <a class="tm-topic-link mighty-topic" title="Chronic Illness" href="/topic/chronic-illness/" data-id="5b23ce6f00553f33fe98fe39" data-name="Chronic Illness" aria-label="hashtag Chronic Illness">#ChronicIllness</a> affect your eyes?</p>
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    Community Voices

    Does anyone here suffer from ankylosing spondylosis and uveitis? What are your treatments?

    Community Voices

    Chronic Illnesses

    From a very young age my body has always been my enemy. On March 7th 2004 I was diagnosed with JIA (juvinille idiopathic arthritis) at the age of one years old. I’ve never known a life without the doctors, infusions, medication, physical therapy. Before I could talk I would cry in pain. It got worse and worse and spread through out my joints. It still effects my ankles, knees, hips, wrists, elbows, and shoulders. By age three I had to quit preschool and was put in a wheel chair and braces on my legs. At the some time at my all time low so far in my journey with arthritis I became diagnosed with Uveitis, which is the same as , although it is in my eyes. With both the flare in my joints and eyes by age four we learned what steroid injections were. We began those procedures every six months to keep flares under control. This lasted about two years, and by age six i was walking on my own two feet with the help of steroids and steroid eye drops to keep everything in control at that moment. I took about four pills daily, and had been on and off shots or infusions. At this point i had been doing pretty well, still aches and pains throughout my days and struggling to grow up with this disease. For about five years (I know it was crazy amazing) I was doing alright. At age twelve, I had the worst flare in both eyes and joints in my entire life. I was back in a wheel chair for almost nine months. more steroid injection surgery’s, higher doses on medication, more steroids (FYI cause a ton of weight gain). Age thirteen was an okay year, continuing the steroid injections and my infusions every four weeks. At fourteen, i found out the worst news of my life. With , i normally get stiffness, aches, pains, but never what I soon experienced. The locking, catching, not being able to straighten my leg got to a point where i was stuck and had to go to the emergency room. We found out that my cartlidge was breaking down and floating in my knee catching it. They had to remove five inches of cartlidge from my knee, and clean it out. This destructive disease has caused my left knee to be bone on bone, and in a wheel chair once again. On my fifteenth birthday, they told me that i would get a knee replacement in the next two years, also that my knees would be doing okay if i was a sixty-five year old man. (SIXTY-FIVE!!!!!) I never realized how much damage was really happening to my body. Today i’m still working on physical therapy, infusions every four weeks, seven different pills, severe pain, flare in joints and eyes.

    But this is my story as far as my journey has lead me, and today as of right now I can stand on my own two feet and say that I am a JIA warrior #CureArthritis

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