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Psoriatic Arthritis: My Personal Struggle

Marcy is a school counselor at an alternative school in Illinois. Other than education and her family, her passion has always been writing.

My journey with psoriatic arthritis has been a long, painful battle. Fortunately, I am making great strides these days; however, the disease never completely goes away. The best anyone can do to combat psoriatic arthritis is to try to find a combination of medicines and treatments that calm the flares and make the pain bearable. Knock on wood, but I think I have reached that point.


Raynaud's Phenomenon: The Calm Before the Storm

In the beginning, I suffered from Raynaud's Phenomenon in my fingers. I have done enough reading on this matter to know that this condition was like the calm before the storm regarding the onset of my psoriatic arthritis. For anyone who has experienced Raynaud's Phenomenon, you know that your fingers and maybe toes turn a transparent white color, devoid of feeling because the blood vessels have constricted so tightly. For me, this sensation usually lasted a few hours, which was uncomfortable but not often painful. Some people, however, suffer more severe complications with Raynaud's. I was lucky to only have mild symptoms for a couple of years.

At this time, I was experiencing other symptoms, too, but I did not make a connection. The worst of these other issues was horrible fatigue and moderate depression. My doctors treated both, and I improved; however, I was not even close to feeling like my old self, and these medications did nothing to help my worsening skin condition.

My First Dermatologist Experience: A Huge Disappointment

When my skin condition worsened, my general practitioner sent me to a dermatologist who took one look at my fingers and said, "I can't do anything about that." What? She repeated with a little more information, "I can give you a cream, but I'm guessing you have already tried creams or you wouldn't be here. So, there's nothing else I can do."

I was stunned, but I accepted her diagnosis—or lack of one—because I didn't know any better. I didn't know to have her draw blood or send me somewhere else, so I walked out the same as I walked in, except $100 poorer.

After that debacle, I figured, well, this is something I have to live with. During this time, my fingers got worse, and at times I could not hold a pen or zip my pants because my fingers would split and bleed. The fissures would take days to heal just to happen over and over again. I was going through Band-Aids like crazy. Meanwhile, my ability to accept this condition was getting harder and harder, and my depression was becoming more difficult to control. Worse yet, I had developed debilitating pain in my right foot.

The Podiatrist

I was starting to think I was a hypochondriac and dreaded going to the doctor for my foot. I mean, why go? For the past three years, no doctor had successfully treated my symptoms, let alone cure me. Finally, I went to the podiatrist who said I had arthritis in my foot, and he put me on arthritis medication. My foot issue improved significantly, as did the achy pain and swelling in my fingers. The skin condition, however, was the same as always.

A year or so goes by. I had come to accept the peeling splitting fingers as my lot in life. Sometimes I even forgot about them until someone would see them and ask me what was wrong. I would quickly hide the ugliness and tell them what I knew about the condition, which was nothing.

One morning I woke up with an uncomfortable pain in my heel and saw a callous, so I got a pumice stone. After doing so, the soreness got worse, and I developed thick, peeling chunks of skin on both heels. And then one day another discovery -- a white scaly patch on the large joint by my big toe. It grew much more extensive over time and was itchy. Quickly, this small white patch covered the entire arch of my foot, and the skin began splitting like my fingers. This condition worsened rapidly to where I could not walk without busting open the skin. I had reached my limit.

Dermatologist #2: Finally A Diagnosis

I made an appointment with a highly recommended dermatologist to get to the bottom of this issue. In the examination room, I practiced my speech in case she told me there was nothing she could do. This time I would not accept the word nothing as a treatment. When the door opened, a woman walked in and introduced herself. Then she shook my hand. It was my worst hand, and it was rough and scaly, so she instantly pulled it up to take a look—no words yet, just intense concentration. Then I showed her my feet. Again, no words, but a lot of examination. Then she asked me for other symptoms. I held nothing back. I was not leaving this place feeling like I didn't pull out all the stops. So, I began the list: Raynauds, depression, fatigue, foot pain, arthritis, swollen and sore fingers.

"You have psoriatic arthritis."

I was stunned—finally, a diagnosis. After blood draws and a lengthy discussion about the disease and my symptoms, my doctor sent the nurse in to show me how to treat and wrap my feet and hands to get some relief from the cracking. I left with a folder full of information and an appointment the next week to discuss the medications after I had some time to read about them. I left the office that day feeling so relieved and validated that I cried all the way home.

Continuing the Journey

The diagnosis was only the beginning, however. Finding the right medication has been one big disappointment after another. I was on the first medication for six months and had a lot of success with healing my peeling fingers, but my insurance stopped paying, so I was forced to try a different one. Again, lots of success, and then I developed a rash that signaled an allergic reaction, so I had to stop using that medication as well. The worse part was waiting six months to go on another biologic medication. During this time, the peeling began under my fingernails, and I nearly lost a couple of them.

Today I am in the sixth month of using my third medication with a lot of success and no problems yet. My arthritis is manageable, and my skin issues have dwindled to just the arch and big toe joint of one foot. These are moderate issues that I live with compared to what I was suffering. My dermatologist is pleased and told me the biologic medication I am on would never completely clear the skin flares. She is satisfied with my improvement, and so am I.

My Medications and Treatment Practices

I am not a doctor, and I cannot say these treatments and products will help you as they did me. However, I know I am always looking for soothing treatments and proactive ways to keep the beast at bay. So, I will share some of the treatments that have helped me over time.

Warming Squares

The only thing that worked to make the Raynaud's manageable was to keep the little warming squares in my pockets and purse. This condition is triggered by a change in temperature, so keeping my hands warm lessened its frequency.

Hyperkeratosis on my Heels

I discovered on my own that my Vitamin D was severely depleted, and my doctor confirmed by doing a blood draw. She put me on 5000 units of Vitamin D for three months with the idea to back it off to 3000 units. Blood draws, however, confirm I continue to need the 5000 units. Vitamin D not only improves my skin issues, but it also helps with my fatigue.

Steroid Cream and Cocoa Butter

I have a prescription, low-dose steroid cream I use about four times a week to keep the inflammation on my foot under control. I also moisturize my feet right out of the shower with Palmer's Cocoa Butter. I usually put socks on, right after treating my feet to help with absorption. I also believe the Vitamin D keeps my flares under control.

Prescription-Strength Lip Balm

Scaling, peeling lip is a nasty side effect that has my doctor and I stumped. We don't know if this condition is a reaction to my medicine or a new appearance of psoriasis. Treating my lips with Dr. Dan's Cortibalm seems to help tremendously. I buy this lip balm at my dermatologist's office.

Keep Fighting the Fight

Looking back, I'm a little shocked that none of my doctors were able to diagnose my issue sooner. Psoriatic arthritis is an autoimmune disease, so it was responsible for my fatigue and depression as well as my joint pain and skin issues.

Today, I still suffer mysterious ailments because my immune system is so depressed, and I get fatigued quickly. However, my life has mostly returned to normal. But let me tell you, it's been a long nine years, and I can finally talk about this issue with some knowledge and with some success.

Other than self-healing, I think my purpose with this article is to reach out to anyone having these seemingly unrelated symptoms. I was at rock bottom, and I made it out of the darkness. I want others to know that there is help out there. Don't accept your condition as your normal. Nothing about psoriatic arthritis is normal.

I have added some links to articles that helped me understand my disease. I sincerely hope if you are reading this article, you do not have PA, but if you do, good luck on your journey, my friend. I feel your pain.

Read About Your Symptoms

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2020 Marcy Bialeschki

Comments

Marcy Bialeschki (author) from Cerro Gordo, IL on June 01, 2020:

Ayesha,

Thank you so much for your kind words. I am on the way of healing. Thanks again.

Marcy Bialeschki (author) from Cerro Gordo, IL on June 01, 2020:

Lynsey,

Yes! Thank goodness for the sun!! Thanks for sharing your personal connection to PA. It is more common than people think.

Ayesha from Pakistan on June 01, 2020:

I hope you really have a happy life ahead of you now. You went through a lot. Thank you for sharing your story. You posted your story beautifully into an informative yet encouraging article. Best wishes for you.

Lynsey Hart from Lanarkshire on May 31, 2020:

Thank you for sharing your story. Psoriasis and psoriatic arthritis are horrible conditions- I have seen my mum suffering with both for over 20 years now. I have a little bit of psoriasis, which comes and goes, but it is nowhere near as bad as hers. She gets medication for it- injections- that have cleared the skin up and also helped the inflammation from the arthritis. I have found that sunbeds keep mine at bay. I am keeping everything crossed that your symptoms continue to get better.

Marcy Bialeschki (author) from Cerro Gordo, IL on May 18, 2020:

Lorna,

I feel I can move forward now, hence the article. Thanks for your kind words.

Bill,

Some days their more struggles than others, but I'm definitely much better, thankfully. Thanks for the comment.

Bill Holland from Olympia, WA on May 18, 2020:

Well that doesn't sound like any fun at all. Thanks for the information and for sharing your struggle. Best wishes as you move forward in life.

Lorna Lamon on May 18, 2020:

You really have been through so much with this disease Marcy and like you I am shocked you did not get the proper diagnosis sooner. I cannot imagine how painful your skin was, not to mention feeling so tired and depressed.

Thankfully you now have the proper diagnosis and treatment.This informative article will help many people who are also suffering needlessly. Thank you for sharing your own personal story, and I hope that in time your immune system will also recover. Take care.

Marcy Bialeschki (author) from Cerro Gordo, IL on May 17, 2020:

Thank you, Liz. I look at those pictures and I want to cry. But everything seems to be going fine right now. Thanks again.

Liz Westwood from UK on May 17, 2020:

I am sorry that you had to endure so much before you got a diagnosis and treatment. Thank you for sharing. Your story gives encouragement to others. I suffer from cracked skin on my hands, especially in the winter and due to excessive handwashing as we have now. That alone is frustrating, but you had so much more to cope with.