living with psoriatic arthritis

People Like Me: Living Well with Psoriatic Arthritis2.15.19 7:16AM2.15.19 7:16AM'The best advice I have received to administer psoriatic arthritis:' 17 tips Patients are gratified because if you haven't heard of 'cobane wraps', compression clothing, or 'I band' — listen. "I tell everyone that psoriatic arthritis is the disaster that occurs when two horrible diseases — psoriasis and inflammatory arthritis — clash with each other and make a giant fire of voltage," says Helena B., 37, from Seattle, Washington. "Then everything else in my life, from children to jobs on vacation, is caught in the blame. PsA plays absolutely everything in my life." Diagnosed in the early twenties, Helena has been dealing with psoriatic arthritis for most of her adult life. And like many of the , he says he's heard everything when it comes to treatments, including medical advice from his doctors to suggestions for Internet arthritis forums, friends' advice, and even stranger counseling. But when it comes to advice, not everything is created equally. We ask people with psoriatic arthritis to share the best advice they have received on managing this chronic disease.1. Get regular massages" When I was first diagnosed, a friend gave me a gift card to a massage place, saying that he helped his arthritis immensely. It turned out to be one of the best gifts I've ever received. My massage therapist understands psoriatic arthritis and uses essential oils such as lavender to help soften the plates. It also helps with pain during outbreaks helping to relax muscles around my joints. In addition, it feels so amazing." — Jessie K., 33, Everett, Washington2. Try the CDB oil"I don't know what it is but when my scalp gets madly spicy from my PsA rash, scrubbing some cannabidiol oil in it stops it almost instantly. It's not the same as the pot and you can't make it high if you're worried about it. My doctor recommended it." - Anna K., 50, Salt Lake City, Utah3. Learn yogic breathing" My psoriatic arthritis is triggered by stress and I was prone to stress even before I was diagnosed. My doctor told me that learning to manage my stress was my number one priority in treatment. I tried a lot of things but learning simple yoga breathing exercises has worked the best. I can do them anytime, anywhere, and it helps me to calm down quickly." — Anna K.4. Wrap your hands One of the best tips I found online was to wrap my hands with "cobane wrap," which is that sticky bandage of mesh that the doctor uses after drawing blood. When my fingers are very swollen and painful, wrapping them helps reduce pain. Be careful not to go too tight though; you do not want to cut the circulation." - Mark M., 31, Katy, Texas5. Remember that you may need much more sleep than other people" My doctor's favorite advice was to forget the 'rule' you need seven to eight hours of sleep every night. When you have an autoimmune disease you may need a lot more sleep than 'normal'. Like, during the bad clashes I need realistically 12 to 14 hours of sleep per night. It is a lot but when I do, I find that my psoriatic arthritis is much easier to handle." - Mark M.6. Take an acid with your ibuprofen" My psoriatic arthritis is not very bad and my doctor only treats it with the free-sale NSAIDs. But those can cause many stomach problems so he also told me to take an antiacid, specifically a proton pump inhibitor, every day. I use Prilosec and a big difference has been made with my nausea and stomach pain." — Melinda M., 28, Mesa, Arizona(Read more about and about patients have.)7. Don't settle for the first drug you try." My sister-in-law also has PsA, and when I was diagnosed with the first thing she told me, it wasn't just keeping the first medication I tried if I didn't help. Looks like everyone starts in metotrexate but that didn't do much for me, or her. Thanks to your advice, I didn't try to harden it and I asked my doctor to try something different. Some attempts have been made, but I am now in a biologic that works very well." - Melinda M.8. Plan a light schedule for injection days" I take Humira by injection and wipe me out. I used to try to push him, but my best friend, who has rheumatoid arthritis, told me to empty my schedule for the day I make the injection. It helps me recover faster and I don't feel guilty anymore for resting." — Emily B., 26, Denver, Colorado9. Find a Good therapist" I still have more days than I'm in constant pain. I underestimated how much I was mentally affected until my best friend — yes, the same! — said it sounded depressed. He recommended receiving therapy and having someone to talk to about this disease has helped a lot. I was trying not to overload the family and friends with the PsA chat, so I kept it all, not to mention I didn't want them to worry. With the therapist I can tell you something without worrying." — Emily B.10. Take a good probiotic "I have learned that people with psoriatic arthritis tend to get sick more often, especially if you are in biologicals. This means that you can get antibiotics more often, which can destroy the good bacteria in your intestine. My doctor always gives me a prescription probiotic along with the antibiotic." — Mahnu S., 37, Washington D.C.11. Do not wait to start the medication" When I was first diagnosed with psoriatic arthritis, I was nervous about taking medication to treat it and told my doctor that I wanted to first try diet and lifestyle changes. He told me to go ahead and make those changes, but to still begin the medication because the longer I waited to do so, the more damage my joints would have and the damage would be irreversible." — Mahnu S.12. Change your diet" A friend introduced me to the autoimmune protocol diet two years ago. Eating this way is very restrictive, but it has reduced my pain in half. I still have to take medications, but my everyday life almost returns to normal. I recommend it to everyone." — Justin S., 46, San Francisco, California[Note: Although there are some research that shows a connection between diet and inflammation, researchers are still trying to understand the link between certain foods and symptoms of arthritis. It is important to discuss diet changes with your doctor and make sure they are part of a recommended treatment plan in general.]13. Invest in compression equipment" A friend who breath introduced me to the compression exercise clothing — basically super-tight spandex of long sleeves and pants. Exercise, especially the lifting of weights, really helps me feel better but I had been avoiding the gym because of the way psoriasis looks and due to the inflammation of the joints. The compression team helps with both. Sometimes I wear them under my regular clothes, help with the lurking on my knees." — Justin S.14. Find a way to move "When I was diagnosed that I really fought the loss of my old lifestyle. I used to be very outgoing and active and psoriatic arthritis almost killed all that for me. My doctor told me that your number one advice was to find a way to keep my body moving, both for my mental and physical health. I had to give up the climbing of rocks and the mountain bike—my poor hands—but I love lifting weight, walking and surfing." — Justin S.15. Try a SI belt "Primitive arthritis has killed my sacroiliac joints, where my back finds my hips, and pregnancy was the final nail in that coffin. After my baby was born I thought I'd never walk again. My doctor recommended an I or 'splint' belt — it is basically a giant and elastic thing that velcro tightly around your hips. He keeps my pelvis together. I still have to wear a walker but I can walk again." — Helena B., 37, Seattle, Washington 16. Don't be afraid to change your doctor" I knew I wanted to test biologicals, but my doctor fired me and I wanted me to try everything first. Finally, my husband told me to change his doctor, that he deserved someone to listen to me. I took your advice and found a new rheumatologist and that made the whole difference. He takes the time to explain everything and I feel much more confident in my treatment now. Don't stay with a bad doctor. You deserve better." — Helena B. 17. Make a genetic test "Original arthritis can work in families and there is a genetic marker that you can look for. When I had first symptoms, my cousin recommended that I be genetically tested as hers showed a higher risk of psoriatic arthritis. I did it and, enough, I had the marker. I told my doctor and I think he helped me get the right diagnosis faster. Also, I know now when I have children." — Melinda M.Keep Reading Reply Your email address will not be published. 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Guide to Psoriatic Arthritis Related to Psoriatic Arthritis Psoriatic Arthritis: What you need to know, of those who do what it is to live with Psoriatic arthritis If you do not have (), you may find it difficult to understand those who do it. Or are they both? It is estimated that 30% of people in the United States will develop PsA in their lives. They understand your confusion. They hear it all the time."[People] think it's just, it's just a condition," says Summer Scirocco, 28-year-old Vidalia, LA, who was diagnosed with the condition two years ago. He says the Psoriasis Foundation says it's more than deep skin. "It really is," he confirms. "And I wish people knew more about. "Scirocco says people know what psoriasis is now. "But we have to take the vanguard. There must be more research, more funding. This is ruining my life. Part of the psoriasis, I can handle. But I can't handle this arthritis. I can't. I just want more people to know about the severity of the condition and how it affects people's lives. "WebMD spoke to six people living with PsA. Here are five things they want you to know. When he hit us, we had no idea what was going on About 85% of people with PsA, the red and squamous skin of the psoriasis strikes before the pain of the joint disease. Still, many people never see arthritis coming. "I've never heard of it. I've never met a person who had it," says LaRita Jacobs of Tampa, FL. He was diagnosed with the condition at the beginning of 30. Now, she's 54. "I had for a while, but I always blame him, 'Oh, you sat too long, you did something too long.' It was always something I did. "Jim Bosek was a 40-something asset when he first felt. In 2001, shortly after playing basketball with his son at the entrance, he realized that he could not walk because he had so much pain. Bosek was diagnosed with PsA shortly afterwards. (I had mild psoriasis for years.) He's been on it ever since. "You live in pain for a while. You have small pains and pains," says the 58-year-old retiree in Darien, CT. "But you don't think it's arthritis." PsA is not an 'Old Person' disease Most people think arthritis hits adults and older people. But that's not true. In fact, about 300,000 American children under 16 have been diagnosed with . Also, PsA can attack regardless of their age. "For me, personally, I would say that my soul is 36, but my body is like 102," says Amy Rabin of Harrisburg, PA. She's been fighting with PsA since she was 8, although she wasn't officially diagnosed until she was 24. Rabin has three daughters, all under 12, who have been diagnosed with psoriasis or PsA.Lauren Oickle, 33 years old from Seattle, WA, also lives with the condition. He was also diagnosed at 24 years. "I was seeing a spine surgeon... they were thinking of doing surgery... and I said, "I heard of this thing called. Can I have it? I have psoriasis on my scalp, and the spinal surgeon said, 'I didn't know you did it.' I said, 'Well, yeah. I'm trying. And it's soft. It's no big deal."But it was a big problem. He forced Oickle out of college and get a job and pay medications to fight the disease. It might sound good, but I'm not a lot of people who live with PsA call it "invisible sickness." On Twitter, hashtags like #butyoudontlooksick are used to refer to the disease, as they are for other chronic diseases. "The joke we have here in my family is, 'You look great'. Appearances are very misleading with this disease, with this diagnosis," says Laura Kath of Los Alamos, CA. "Just because you look great doesn't mean you feel good. Or you're not fighting. "Oickle agrees. "When you have an invisible dating disease, people tend to think it's psychological, you're a, or you're lying. They're after you. "I definitely have stars and things all the time," adds Scirocco. He says it's very perceptible when he uses a walker. "I think curiosity is what it gets. [People think] She doesn't have a leg armor like she had surgery. Why are you using that?'"Rabin is not a strange scrutiny either. "I'm 36 years old. I look healthy. You'd never know that I have a condition on my PsA. And I fight to do normal things. I don't know why arthritis has a stigma, but I think so. We don't look sick. But if you looked at my blood or my MRI, then you'd see it. "We can have good days..."A good day is any day you wake up breathing. As far as diagnosis is concerned... a day when pain levels are 4 or younger," says Kath, 55. He's had 16 orthopedic surgeries he attributes to his PsA. The first was in 1974. "Living with psoriatic arthritis is a Russian mountain disease," he says. "It can be a super fast roller coaster, where you can wake up and feel good. But by noon, your roller coaster has come to the pit. Or, you can be in a week where your roller coaster goes great, things go well, things go wonderful, then, 'Boom!'"Oickle, who works full-time at the University of Washington School of Medicine, says, "Now it's the best thing I've been, and in the good days that means I have energy to participate in life as a normal person. And then I'm going home and falling apart. So yes, having energy, a low level and a level of pain manageable enough to do it through the day of work... it's a good day." ... But we'll definitely have bad"When I can't work, it's a bad day. It happens," says Rabin. He often spends 45 minutes before he gets out of bed in the morning. "And I have three little girls. I worked full-time until I was 30, but after that point, I couldn't do it anymore because stress, for me, is a trigger. It makes me kiss." For Oickle, a bad day "is unable to participate in the activities of everyday life. "The problem for many with PsA is that bad days sometimes exceed good ones. "It often feels like the way you could feel the day after a bad or a really bad case of the . You are functional... but you are not able to do much," says Jacobs. "Where you feel you're a little irritated and tired and that you're not working as it should. The difficulty is that it comes from you like nowhere. And that's frustrating. "With PsA, fatigue is both a problem and pain"A big problem - and I know this is for my entire community - it is. Every morning when I wake up, I have no rest," says Rabin. Oickle says, "In most days, I get up, I'm going to work, then I'm going home. And then I lie down and try to rest until I have to do it again. And it's a good day. When I'm tired, my body will get inflated. He'll get angry. You have to be very focused on the way you spend your energy, or you won't get anywhere. "It's not that we don't want to. Or I shouldn't." You still have those ideas and all those hopes and all those, and your body says, 'Wait a minute,'" Jacobs says. "And that's very difficult. You still have all those passions. But you have to make decisions in your life about what is realistic." When I was first diagnosed early in the 20s, I was drinking, working, staying awake all night. And that didn't work. I had to adopt a lifestyle of a boring person," says Oickle. He has mocked any kind of social life outside an occasional meeting with the family. Oickle adds, "Accepting chronic disease is difficult. I think people hide it. But with something like this, where you have to treat it but there is no cure, you have to put your arm around and make it part of your life and accept it. Because if you fight, you won't win. "We have hope"I'm a researcher, so I'm very optimistic about research innovation. I think things happen quickly," says Oickle."I wish I could say I could expect a cure. That's on my long list. But even improvements," says Rabin. "A cure. It's possible. If we have enough support and enough research, and research financing... that's the ultimate goal," says Scirocco. "I want to find a cure. I want to find a cause, and I want to find a cure. And in the meantime, I want to help other people who are dealing with this diagnosis," adds Kath. "The hope I have is that, while the biologics and new drugs out there do not cure things, they can certainly help. That's kind of a measure of hope that's out there. I have a good reason to think that my daughter, my family and... all those who are recently diagnosed, have a much better prognosis than me," says Jacobs, who has a daughter in her 20s with PsA. "It's much less grim than a decade ago. Sources: Psoriasis Nacional Fundación: "On psoriatic arthritis".Rachakonda, TD. Journal of American Dermatology, published online March 2014. Summer Scirocco, Vidalia, La.James Bosek, Darien, CT. Amy Rabin, Harrisburg, PA.LaRita Jacobs, Tampa, Fla.Lauren Oikle, Seattle, Wash. Laura Kath, The Alamos, Calif. Haroon, M. Annals of Rheumatic Diseases, published online February 2014. Pagination Top PicksHoy on WebMD5 Types of Psoriatic Arthritis Learn the basics of each. What is Psoriasis? Symptoms, causes, triggers and more. Symptoms of psoriatic arthritis What to do. Tame to Psoriatic Arthritis Flare15 tips to try. Recommended for YouTypes for healthy jointsPrincipals of arthritis Arthritis: Knowing symptoms10 Tips for combating fatigue of psoriatic arthritisIs psoriatic arthritis?9 Strategies for managing psoriatic arthritisDepression and psoriatic arthritis © 2005 WebMDMore information DMA does not provide medical advice, diagnosis or treatment.

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