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I have severe fatigue, depression, social isolating, itching, pain when walking, and pain in knees and legs. I already have a dermatologist and rheumatologist.
Ah, but in addition to the wealth of info and tips I have gleaned from you, @A MyPsoriasisTeam Member, you also make me smile. I guess if there is anything, at all, I have to be grateful for, is that I experienced the autonomic issues first, only because I found I had to locate others with the issues, and start researching for myself. If the psoriasis had come first, I may well have been tempted to jump off one of the many bridges crossing the Intracoastal Waterway.
And a DR that you trust, and who will work with you -- even if, at times, you may come across as a 'babbling idiot.' My favorite has been a cardiologist, who when the autonomic issues first appeared, finally shared that we had 'to go looking for zebras.'
Yeah, my system is one BIG mess, but I plug along with the mystery of trying to find what will best help me. A pity party, complete with balloons, is a given from time to time.
You've helped me in a number of ways -- probably the best has been to be consistent. It's not been like, taking a pill, and in (2) weeks, it's all better. God, but I wish. 'Hang tough?' Some days, I feel like if I hang by my nails, I'm doing well. *BIG smile*
@A MyPsoriasisTeam Member. To heal my PPP I kept the palms and feet pristine clean to ward off inflammatory substances. I also kept them covered with socks and gloves, even through the heat of FL summers for protection and to keep in moisture. As you are probably aware, those specialized plaques get very hard and jagged edges. I used a battery operated fingernail file to smooth over the hard jagged edges so they wouldn't get snagged, pulled, and cause more irritation.
A note about going to the beach, absolute DO NOT allow any raw skin thinned enough to allow microorganisms to penetrate to your bloodstream to get in the water. You can get a horrible infection that way. Do I understand correctly that you're in NC? I don't know about there, but in FL we have a serious parasite that lives in the waterways that at best will relieve victims of their body parts to save their lives, at worst will kill the victim in under a week. Vibrio Vulnificus. 😱 bad bad bad.
Keep the skin smoothe, apply topical treatments, then cover with clean socks, for feet, washed in hypoallergenic soap, rinsed twice, no fabric softener. For hands, keep covered with Copper Fit gloves. This brand because it's thin, fits like a second skin with no bunching or sliding on fragile skin, has gripping material on palms to make grabbing and opening things easier. Copper threads are supposedly antimicrobial. They come fingertipless or full fingers and can be purchased at any drug store or Walmart for $20 in the "As seen on TV" or novelties section. Get 3 pairs so you always have a set thats clean. Wear them until your skin is clear. It took me close to a year but thats because I was experimenting a lot. Now, when I feel the skin beginning to feel tight and dry, I apply Burts Bees Almond Milk hand cream and put these gloves on. I used Burts Bees back then. Now my favorite topical to nip psoriasis and any other skin irritation, including bug bites, and post surgery cuts, is Emuaid Max. PPP must be kept moist and clean at all times to heal. Double glove when using chemicals. Chemicals can still penetrate even heavy leather yard gloves. Wear the Copper Fit ones under cleaning/chore gloves. Vigilance is key.
Lastly, what you consume can prevent healing. Another member i continually shared my methods with who lamented the lack of progress eventually confided that they were a long time habitual smoker. Toxic habits will absolutely prevent healing from an autoimmune condition. Whether it's smoke, alcohol, salt, excess sugar, not wearing skin protection, bad relationships, as long as the antagonist is present the disease will remain.
My evidence, my gut and skin is 100% clear for over a year now. My mental fog is gone. My energy and mobility significantly improved. No meds.
I hope all this is helpful and insightful to you. 😌🙏
@Pitac, I find your comments about psychologists helping interesting. I'm beginning to realize that even the mental components can be as different for different people as the body's reaction to psoriatic disease.
I have suffered from anxiety for a very long time. I tried many anxiety medications, and a few different psychologists but found little relief. Effexor was the most helpful...I stopped taking it 9 years ago when I learned to manage the anxiety better. I was experiencing TD, some of which seems to be permanent.
I had a massive flare in 2023 and my anxiety levels were through the roof. Some days I would just shut down...the pain was obviously contributing. That flare led to my diagnosis, so it had a silver lining.
What has surprised me is after starting the biologic, my anxiety levels are minimal and generally associated with specific stresses such as work projects that are being difficult. My general anxiety is gone.
I haven't been this anxiety free in so long, I can't remember. I think the anxiety issue is complex and I wouldn't make a broad statement about the impact of a biologic for everyone, but for me it seems more than coincidental. I had little to no relief treating the symptom...anxiety itself...but major relief treating the underlying inflammation.
A psychologist can help you with the depression and social anxiety. An Immunologist won't be much help. The cytokine test @A MyPsoriasisTeam Member is referring to is a specialized test that is time constrained and requires a specialized centrifuge. Unless you live near a medical school hospital you may find that to be a difficult, if not impossible test to get. It also might not be covered by your insurance and has an average price tag of $1500. It would definitely be helpful to have to be able to know which biologic is most appropriate for you. The challenge is that with over 200 different cytokines that may or may not be present from time to time based on a millieu of factors, the ones causing your out of control inappropriate inflammation can change. To know which ones are present you'd need frequent testing and changes in biologic medications each time the cytokine responsible changes. This can be a problem because many biologics need at least a month, Skyrizi needs 4, to be affective. If the cytokine responsible changes.....are you now seeing the problems inherent in biologics? Its a crap shoot from one month to the next. You're much better treated by identifying what triggers your disease activity and getting rid of or finding help managing that. I understand quite a lit about depression and social anxiety. I've dealt with both for a very long time myself.. it sucks. A lot. Your best help from a dr will be from a really good psychologist.. that's from my personal experience, not an insult by any means. Good luck!😌🙏
@A MyPsoriasisTeam Member. Hi again Elizabeth! Did you miss me?!😄 Ahh, yes, I can relate really well to the light and chemical sensitivities. Luckily, for me, so far, my heart and internal organs are still doing fairly well, but signs of strain are emerging off and on. Especially after the biologics experiments. Luckily I have managed to recover my liver and kidney health. Keep an eye on your bloodwork numbers yourself. Dont expect your doctors to do their job and notify you when things go out of range. My kidney function dropped 56 points in 6 weeks from perfect to stage 4 kidney disease and I never got a call from any of my drs, found that one looking at my pre-op bloodwork for the original stem cell procedure date. AST and ALT for liver function started about 18 months into the biologics experiments, none of my drs ever said anything. I dont know about you Elizabeth, but when the spine goes, skin issues are a wished for memory in exchange. But when you're looking at a major life saving vital organ transplant list, spine decrepancy also becomes a distant memory. That's why I finally put the kibosh on my occasional wine with dinner. No amount of dining pleasure is worth liver failure. Meds brought it on. As our bodies age, some just can't accommodate the strain to process everything anymore. For your reference, if its helpful in any way, I'm 58, closer to 59.😌🙏🥂
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