by Jan Tennant, Senior Editor, PRP Survival Guide

Pain is scary. It can make it hard to focus on anything else. It makes movement and physical activity difficult. It can make sleep impossible. Unlike many other symptoms of PRP, pain is invisible to others.

Unusual or intense pain is alarming for a reason. It is the body’s way of alerting us to something wrong. It should never be ignored. You can’t assume it is “normal for PRP,” especially if it is not related to the skin, joints, or known PRP symptoms such as swelling (edema)—examples of pain that could be serious include chest pain, back pain, pain under the rib cage, signs of infection, and severe headaches.

You will find support and helpful suggestions from the PRP community in the Land of Hope, but always consult a doctor if you have unusual or severe pain.

Treatment for pain associated with PRP varies and can involve anything from simple Tylenol to strong narcotics. Some may find non-drug remedies and stress-reduction useful. Just getting out of a chair or having a good night’s sleep is on the top of many people’s agendas (not to mention their spouse’s wish list).

Where does it hurt?! 

Pain means different things to different people. Do we even have a vocabulary to describe pain besides “burning” or “throbbing”?

Severity varies—from discomfort that’s not perceived to be in the category of “traditional pain” to “insanely intense,” “excruciating,” “unbearable,” or “horrendous” pain.

What do people mean…?

What do people mean when they ask, “What do you all suggest for pain?” Possibly people assume we all know what they are experiencing, but a careful reading of posts in the Facebook PRP Group shows that what people call pain can mean many things:

• PRP is strongly associated with the pain of stretched-too-tight skin and swelling (edema) anywhere.
• Pain in PRP can refer to painful or tender lymph nodes associated with wide-spread inflammation.
• Itching and pain are often mentioned together—some people find the itchiness itself to be painful, especially at night. Sometimes people talk of nerve pain or of sunburn-like burning pain from inflamed skin. Or they may have scratched themselves raw.
• Pain associated with PRP can also be a warning that bacteria have entered the skin through cracks or fissures and caused an infection in skin or surrounding tissue. Cellulitis is one type of serious skin infection that often requires IV antibiotics and hospitalization. It can be life-threatening.
• For many, pain means joint pain or muscle pain and cramping. Some joint pain may be caused by rheumatoid arthritis (RA), an autoimmune disease that can be associated with PRP. This must be evaluated by a doctor (often a rheumatologist), but some of the drugs used to treat PRP also treat RA. People have said their joints feel like they are crunching or popping and pinching.
• People suffer greatly from the pain of swollen or cracked hands and feet and the tender or throbbing nail beds, made worse by their misshapen nails that pinch their fingertips.
• All these forms of pain and discomfort can certainly be attributed to PRP.

Here’s some of what people have had to say about where it hurts. Because these were Facebook posts, typos, incorrect spelling, and some grammar problems have been corrected. The date are from the original post for reference.

Discomfort Not “Pain”

Tunde B, California, USA,10 Jan 2023

“Out of curiosity, could you explain what you mean by pain? I’ve experienced itchiness and dryness but wouldn’t classify it as ‘traditional pain’ so curious to understand.”

Lorna R, Oregon, USA, 15 May 2019

“I was uncomfortable, but never in pain that required medication for pain. My main discomfort was from the effects of dry skin, and edema.”

Painful Skin, Edema/Swelling, Nerve Pain, and “Flares”

Tierney R, Virginia Beach, USA, 4 Apr 2016

Reports an “acute flare and it’s spreading everyday….” She adds: “The skin on my thighs is beginning to show signs of splitting…. I feel like I have been scalded.”

LuAnn P, Minnesota, USA,10 Jan 2023

“I have pain due to loss of stretch of the skin.”

Lynn G, New York, USA, 15 May 2019

“The pain was searing at times, my pain comes and goes….”

Elysia M, England, 6 Nov 2018

“In winter the pain gets so bad it makes me feel like I have a fever too.”

Joint and Muscle Pain and Cramping

Annette B, Arkansas, USA, 12 Jan 2021

“With my initial onset I had horrible joint pain. It seemed to jump from joint to joint.”

Kim R, West Virginia, USA, 8 Nov 2022 

“All my joints in my hands hurt.  My knees hurt not to move and hurt to move.” 

Jan H, California, USA, 6 Dec 2022

“I’m experiencing excruciating pain in both knees and hips, even the replacement (how is that even possible!).”

Sally N, England, 12 Jan 2021

“My partner is having severe muscle cramps, he can’t sleep, just wondering how this is connected to PRP? His hands, feet and calves, he’s decided to sleep downstairs tonight.”

Hand and Foot Pain and Painful Nails

Patricia B, Florida, USA, 4 Jun 2022

“I have pain on the top of my foot, achilles too. When I lay down at night I get pains in random areas too…. I wonder too if all this pain is from my PRP. I had x rays of my foot and they didn’t find anything.”

Catherine P, Oregon, USA, 28 Oct 2022

“On my fingernails. A deep pain that throbs like I just slammed the nail in a car door. But I can touch it fine, no bruise.”

Teri R, Indiana, USA, 28 Oct 2022

“My nails became pinched during the year of the acute phase. I’m in my fifth year and have one toenail that is still pinched and causes pain at times. Even the weight of sheets hurts.”

Quality of Life: Pain Hurts

Pain is just one more detriment to our quality of life, making those of us with PRP unable to enjoy life or to do the things we love to do or must do. Pain keeps people from relaxing pastimes such as crocheting and from necessary tasks, such as driving with painful feet. Pain makes movement difficult, causes psychological problems, and results in poor sleep. Finding the right pain remedy (medicine or non-drug alternatives) is essential for our quality of life.

Just functioning from day-to-day

Peggy W, Tennessee, USA, 10 Jan 2023

“When I was hospitalized, I was given dilaudid [hypomorphone, a narcotic pain medicine] and it was effective enough that I could eat and sleep and function, but they wouldn’t send me home with it.”

Mobility

Ginny M, South Carolina, USA, 31 Dec 2015

“Today I can’t move without head to toe pain. I am scared because my internal pain is starting to outweigh my skin pain.”

Pamela W, Scotland, UK, 12 Jan 2021

“I found great difficulty and pain getting up from chairs, floor etc had to try and hold onto something to get up.. Balance was a great problem and had several tumbles staggering backwards.”

Tierney R, Virginia Beach, USA, 6 Nov 2018

“….the soles of my feet, the edema, the stinging and burning. It just wouldn’t go away. I was using a walker to get around.”

Pain and the Psyche

People who are suffering physically are often also in psychological pain, including anxiety and depression. Reducing pain helps psychological stress but reducing stress, anxiety, and depression may help with pain.

Azucena R, California, USA,12 Jan 2021

“My body aches all the time and I feel so tired like I got the life sucked out of me.”

Phyllis I, Missouri, USA,18 May 2018

“The visible signs of this illness are sometimes easy to cover up and sometimes not. People act like they are ok and all the while, they are screaming inside in pain in their feet, hands or wherever…. It is ok to let others know you don’t have the energy to do something, you don’t have the energy to even walk across the room or you are in pain. You don’t have to pretend everything is ok….”

Patrick W, British Columbia, Canada, 17 Jul 2022

“…. I was losing my mind, I was in agony and full of anxiety, my doctor prescribed a pain medication and for me was a game changer, reduced my anxiety and made my pain tolerable.”

Sleep Issues

Like its close ally, itch, pain causes many sleepless nights. People lose sleep due to joint pain, muscle cramps, and sore feet and toes. Restless leg syndrome adds an additional burden for some. Pain is often worse at night. Some people find they can’t settle into sleep and others wake up during the night—often waking their partner in the process. Many of the medications and other pain-relievers people turn to are specifically to help them get some sleep.

Kendra H, California, USA, 20 Apr 2016

“Burning wears me down. And interferes with my sleep….Writing this ‘in the wee hours of the morning’ when the burning wakes me up…. Better sleep helps us heal.”

Peggy W, Tennessee, USA, 15 May 2019

“I wake up after a few hours of sleep convinced that I’m literally on fire.”

Kim R, West Virginia, USA, 28 Oct 2022

“I’ve had to sleep on my stomach with my toes hanging off the edge of the bed they hurt so bad and this is my going into fifth year…”

KEY TAKEAWAY 
Some Pain is Not to Be Ignored.
Get Medical Advice and Attention

Infections: Cellulitis and Wounds

Some pain is too important to ignore, especially when it comes with signs of infection, such as fever, redness, heat, and swelling in one place on the body, as occurs with the serious infection called cellulitis. This serious infection occurs when cracks in the skin can allow bacteria in, which if left untreated can rapidly spread into the blood stream or lymph glands, causing life-threatening illness. People with PRP may also find themselves with wounds that do not heal. This is not the time to self-diagnose. Just be aware of these potential, serious sources of pain and do not hesitate to get medical advice and treatment.

Cellulitis

Abbie C, Texas, USA, 12 Jul 2020

I woke up one morning with pain in my ankle. Turned out to be cellulitis. Had to take antibiotics and keep it elevated for about a month.

Judi T, Montana, USA, 5 Feb 2020

“Has anyone with PRP gotten cellulitis? I never ever had it until I got PRP, now for the 2nd time in a yr, I have gotten it in my left leg. Its quite painful…. This is some nasty stuff, cellulitis. The PRP is worse but who needs more problems [with] pain when you have PRP, right? “

Eileen S, Pennsylvania, USA, 5 Feb 2020

“I got cellulitis on my lower left leg 4 years ago! I was in hospital for a week. Iv antibiotics ! Then visiting nurse for 2 weeks! More antibiotics! Then off to visit the doctor at the wound care center for 4 more months! Finally discharged with a nice dent in my leg”

A Serious Wound That Would Not Heal

On March 28, 2016, Bill M (Texas, USA) shared a series of posts about a long-time PRP friend, a school teacher, who was suffering terribly and having a hard time getting her medical team to understand how her serious leg wound related to PRP.

The “Ding” signaled an incoming email on my iPhone from Bab P. Her distressing message:

“I am in deep pain. Everyone dreads waking up in the middle of surgery. I did and it was the most unbelievable…deep pain I have ever endured….. My legs are miserable. I cannot find a good position. I tolerate pain really well, but this is beyond my experiences. I count on your prayers my dear friend.”

“Those of us who keep Bab on our radar, knew she was scheduled for surgery during her high school’s Spring Break.” She had wanted to deal with “a cantankerous leg wound and severe water retention that has even perplexed the Mayo Clinic in Rochester, MN. Now toss in PRP (Onset 1996) and you get the picture. The wound simply will not heal.”

Besides the gruesome wound under all the bandages, Bab found that “the surgery doctor cannot admit PRP played a part in my condition. I even told her several times to look up our page. How can we get anyone to believe us if we do not press for education?”

In the end, she reported: “Sore all over after third surgery. They want me to transfer to a skilled facility because keeping me off my feet is helping in healing. They want me on IVs and off feet.”

Possible Medication-related Pain

Rib Pain

In August 2018, Holly K (Pennsylvania) asked, “I started having sharp pain in my back under the rib cage on the left side worse when I cough, sneeze, take a deep breath. Went to urgicare, chest xray was clear they think it is costochondritis, inflammation of the rib cage where the muscles attach.  Is this related to the PRP?” Her post elicited sympathy and some shared stories of similar pain. Johnny A (Sweden) “had excruciating pain down my rib cage on both sides. Some days it was so bad that any movement would feel as if my skin was being torn off my body.” His pain lessened when he stopped taking methotrexate.

Hers turned out to be gastritis, the inflammation of the stomach lining, which was diagnosed when she finally went to the emergency room. It can be bacterial but in her case, it was probably due to another recognized risk factor: she speculated it was caused “from years of high dose ibuprofen due to all the inflammation I have everywhere knees, back etc.”

Chest Pain

Pam A, England, 17 Jul 2020

“I have a pain in the centre of my chest for about 6 weeks. Thought it was from gardening but it’s not going away. Feels achy and heavy and I can’t roll over to sleep. Is this PRP, meds acitretin methotrexate or something else? I was ignoring it as had toothache, sinus, earaches, leg aches. And it’s all PRP.”

Several people said they had experienced this sort of pain, which they attributed to acetretin and which was helped by taking ibuprofen. Pam’s symptoms improved when she took a lower dose of acitretin. However, the overwhelming consensus was that she should see a doctor right away. Some respondents pointed out that chest pain with toothache can be the sign of a cardiac problem. As Lorna R (Oregon, USA). said, “I am advising you to report this chest pain to your physician…. Do not ever assume every ache and pain or other discomfort is a result of PRP.” Pam promised to see her doctor to rule out heart problems.

• Unlike many other symptoms of PRP, pain is invisible to others.
• Always consult a doctor if you have unusual or severe pain.
• Do not ever assume every ache and pain or other discomfort is a result of PRP.
• Pain varies in intensity
• Pain varies in location
• Pain means different things to different people. One person’s pain is another persons discomfort
• Pain and Quality of Life don’t go together
• The absence of pain is a healing milestone.

Loose Ends

1. About the Author

Jan Tennant’s PRP journey began in October 2016 with the appearance of a telltale spot on her chest. It took another four months before a diagnosis of PRP was made official. She considers herself in remission and no longer taking biologicals.

Prior to PRP Jan worked for a major pharmaceutical company, producing reports on antibiotics, heart medication, migraine treatments, the economic cost of depression, quality-of-life, and other topics. As an engaged member of the PRP Support Group she has volunteered her time and considerable writing talent to the PRP Survival Guide as a proofreader, copyeditor and writer. See Eyes and Impaired Vision . Effective in January 2023, Jan agreed to serve as the PRP Survival Guide’s Senior Editor . YAY!!

Jan resides in Ringwood, New Jersey with Malcolm, her husband of 32 years.

2. Drilling deeper with the NPF

Some PRP patients and caregivers may want to dig deeper into the issues related to PRP and PAIN.  As Jan Tennant researched the topic  for PRP Perspectives, she  identified four articles worth sharing. All are from the National Psoriasis Foundation website. (psoriasis.org)

https://www.psoriasis.org/advance/living-with-chronic-pain/

Interesting, nontechnical article about chronic pain and how it is perceived in the brain. You can find out why you can’t always point to where it hurts. It explains how people have different settings for pain, like a guitar amp that may be tuned up too high. And it explains how “Pain that emanates from the amplifier in the brain is called centralized pain,” which is common in immune disorders. “It’s usually accompanied by other central nervous system symptoms, such as fatigue, mood changes, sleep disorders and memory loss.”

https://www.psoriasis.org/chronic-pain-kit/

How to get a Chronic Pain Kit, with tips on tracking pain, understanding ways to treat pain, and voicing your concerns to family, friends, and medical providers. You can fill out a form to request a kit and you do not have to have psoriasis or psoriatic arthritis—it has a place to put a different diagnosis.

https://www.psoriasis.org/advance/when-psoriatic-disease-strikes-the-hands-and-feet/

Explains why pain in our hands and feet—with their wealth of sensory nerves and complex anatomy “has an outsize effect. The symptoms can be more intense and more upsetting.”

https://www.psoriasis.org/search-results/?q=arthritis

A link to articles about joint pain caused by psoriatic and rheumatoid arthritis, as well as other types of arthritis.

3. Peer Review This Article

Whether you are a PRP patient or a PRP caregiver, your perspective is important. Use CONTACT to share you thoughts about pain. What did we miss?