At its worst, Phil Mickelson’s Achilles heel was on fire, his knees and hips ached and his shoulder hurt so much that he could not lift his arm above his head.
Arguably the world’s most beloved golfer – and the winner of three Masters championships – Phil worried that his career might be over. He knew this for sure: The debilitating pain, almost crippling at times, was not the normal aches and pains of a 40-year-old athlete.
Something was seriously wrong.
“There was a lot of uncertainty,” Phil says. “I was pretty worried. I didn’t know about the long-term future; I didn’t know what my immediate future held. The mind tends to wander. Mine certainly did.”
And the mind started its racing: What is wrong with me? Whatever it is, is it treatable? Is my career over?
Just a year earlier, Phil’s wife, Amy, and his mother, Mary, had been diagnosed with breast cancer. So when his mind wandered, it tended to head toward worst-case scenarios. But what Phil was about to learn left him with more questions than answers.
Two doctors, his general practitioner in California and a rheumatologist at the Mayo Clinic in Rochester, Minn., told him he had psoriatic arthritis, an autoimmune disease in which the body’s immune system attacks the joints. Arthritis of any kind – and there are more than 100 types – is not a welcome diagnosis for anyone. For a professional golfer who makes a living contorting his body with powerful torque, it’s that much worse.
“They told me that this kind of arthritis was one of the more treatable ones,” Phil says, “but there were no guarantees.”
Since announcing that he had psoriatic arthritis last August, just before the start of the PGA Championship, Phil has remained quiet about his condition and the effects it was having on his golf game and his life as an active husband and father. But Phil opened up recently to Arthritis Today about the time leading up to his diagnosis and what he thinks his future will look like.
His Achilles Heel
“It’s been a tough couple of years and I had just gone through the most emotionally stressful time of my life with Amy’s cancer diagnosis,” Phil says. “The way that she took on her illness was inspiring and it sparked me to take on mine without delay, and that turned out to be very important to stop what could be permanent damage.”
Severe stress can be a trigger for psoriatic arthritis, says Eric Matteson, MD, Phil’s rheumatologist and chair of Mayo Clinic’s rheumatology department. But it doesn’t cause it. Experts think the disease is caused by having a genetic pre-disposition that is set off by an environmental trigger – say, infection, smoking or even extreme stress.
You are all in my prayers.
Prior to his announcement, I was a hypochondriac, over-reactor, and I just had a low threshold to pain. Numerous, sometimes vulgar, but ALWAYS extremely insulting and hurtful comments, attack me as a person inflicted with a disease that I can show and PROVE with the scaly rash on the back of my neck. Yet, I’m NEVER entitled to any kind of empathy for the excruciating pain and fear I’m going through.
Sure, EVERYONE has SOME form of arthritis, so right there, ALL my credibility is OUT the window! Add in the people who broke a leg or sprained their ankle… I may as well line up under the giant sign that says "WIMPY WHINERS!" with the likes of people complaining of hang nails, blood blisters, splinters, under the skin zits, and ferocious ingrown hairs!!!
I liked the description someone wrote of having your joints slowly twisted in the opposite direction nature intended.
I like to paint the picture to people of school kids playing kick ball using an overly pressurized, red, rubber ball that aggressively gets booted by a 13 year old 5th grader ingrained with anger management issues making a monumental line drive RIGHT into the tender, youthful, finger of a runt sized 3rd grader. After the adrenaline and shock leaves the body and when the body is fully conscious of its assault, the actual pulling on the finger, that unjams the plump, swollen, and inflamed finger, THAT is what PsA FEELS like. ONLY spread across numerous joints throughout our psoriatic arthritic bodies... simultaneously.
Usually, an incident at school like that will follow from every witness along with others who only heard the story, "That looked like it hurt." or "That MUST hurt!" Unfortunately, for PsA sufferers, we don't have an event or recognizable sign that physically affiliates us with the genuine pain we are in.
When I flare up, I want to crawl out of my skin and soft tissue and run around with nothing but a naked skeleton. I don't think friends, family, and others would react or view me any worse. I'm already FORCED to apologize, often in advanced, for being a b1tch and a freak because I don't like being social when I’m in pain and sometimes it forces me to walk like a cripple. I also hate to be man handled, MOST OF ALL, because it HURTS!!!
Perhaps I'm just incredibly unlucky but I get grabbed by the arm (even on the street/subways by strangers), bear hugged, high five slapped back b/c I INSIST on not partaking in this beloved American gesture, not to mention the powerful authority behind a firm handshake or the unwelcome advance of an a55 slap or hip squeeze... I think I'll stop here making my point... It's UNAVOIDABLE to NOT show you're in pain. As much as I try to smile and laugh along with it… the sparkle they think they see in my eyes is NOT joy, its concealed tears.
This really was the impetus for me to put something down on paper. I was almost at a maximum with Methotrexate, however every day was a struggle. A typical day would consist of heat pads in the morning, 8 co-codamol 30/500s, 120mg of NSAIDS (at the level for short term treatment of gout). I would have pain in all my joints and lack of mobility. At work, I teach, but in-between classes I would go for a sleep/rest, this was repeated at lunchtimes and after school. My wife would have to make the dinner and I would need a rest straight after that. My sleep at night was restless as nerve pains swept up and down my legs. I had no energy, no get up and go. My blood sugar levels were up, cholesterol, and my TSH was also high.
Here’s the good bit, 2011 has been a fantastic year for me, but how did I turn it around? Last year I made a New Year’s resolution, if I couldn’t exercise, I would radically look at my diet and calorie restrict my weight down. My resolution was no Sweets, Chocolate, Desserts, Cakes, Crisps, Fizzy Pop for a full year. Within 2 weeks I had lost 7lbs, within 5 weeks it had reached 14lbs. It was hard initially, but as time went on I became more resolute, and I started to adjust my eating habits, and finding work-arounds for the tempting times! I got myself into a regime of Oats/Muesli in the morning along with Fish Oil supplements, fruit and low GI bread for lunch, fruit in between or nuts (Pecans, Walnuts, Brazil etc). Dinners are carbohydrate free, with a mix of unprocessed meat, white and red, along with fish and 2 or 3 vegetables or salads. If I snack at night I used low GI oatcakes and some cheese, along with an odd glass of red wine. The difference this has made to me is phenomenal. I was able to get back exercising again in the gym (select equipment only) and swimming. Over the year I have come off the painkillers and anti-inflammatory tablets, I now exercise about 4-5 times per week, without any problems. Generally my joints are great, although I have had 2 or 3 short periods where my hip has flared up, usually from me thinking I am more able than I am! Skin issues are much less frequent. My TSH, Blood Sugars and Cholesterol have all come down to normal levels. My weight is now 12st, for 5’8” it is not far off a normal BMI. More importantly my energy levels have soared and I don’t rest/sleep during the day at all. My wife is grateful because I do all the shopping now, and her dinner is usually waiting for her when she comes back from work, and I have energy left for essential housework. I am able to put more into my own work now as a result. Overall my confidence levels are high and I am in better spirits than I have been over the last few years. The only downside is that I have had to invest partly in some new clothes that fit! (Although I did keep a smaller size wardrobe under my bed as I was reluctant to concede defeat to my condition) Needless to say, whatever the motives for my change last year, the benefits have led me to believe two things. Firstly, I need to keep up my regime for life, for my health and for my family (I have a son and daughter at University). Secondly, I am of the opinion that if changing your diet can have such a huge affect on my life, then it can for others who may be in a similar position. I never believed for a minute, I would be here and wanting to share my experience so badly. I know I am fortunate, and cannot rule out a future flare up, but for me this is real and tangible. If you’re in the same position as I was last year, depressed about your weight, problems with your joints as a result, lack of energy, worrying Blood Sugars, TSH levels, Cholesterol, then make your own similar New Year’s resolution to change your diet for the better in 2012. I'm sure you will not be disappointed. Good Luck!
I also went through the long frustrating mis-diagnosis phase, for more than 5 years. I think it was hard to diagnose because I was 19 when it hit, and I didn't "look sick". But the pain was overwhelming, stiff achyness deep in my spine and neck.
One issue that has been alluded to in some posts is the stigma thing. Psoriasis on the skin doesn't bother me much, but I know a guy who will never wear short sleeves, and is very disturbed by the skin patches.
Another issue is the acceptance of others, some of whom are skeptical of this disease. This can become a relationship killer, and has for a few people I know.
My treatement has evolved to Remicade, and Neurontin, and soon I am hoping to get a spinal implant to deal with a severe lumbar problem, the failure of the L4-L5 facet joints, that are the small hinge-type joints on the back of the spine. The sympoms are claudication in the legs, deep spasms that are disabling, essentially I cannot be on my feet for more than a few minutes. I am hoping to get either the X-stop spacer, or the new Superion spacer, which are placed between the back side of the 2 vertabrae, to give the support that the failed facet joints can't, and alleviate the severe nerve pinch.
Remicade has dramatically improved all the other joints in my body, so I am actually optimistic despite my crippling issue with the lumbar joint.
I gave my young nephew this description of my pain issue from PsA/AS: I feel like the Tin Man from Wizard of Oz, before they squirted the oil on him. It's a persistent deep stiffness, essentially everwhere from the neck to the toes. And it cycles in a way that (other than the recent severe lumbar problem) can be mild or very severe.
Great to find a set of comments from others with this dread disease.
You will be included in my prayers.
I am sad for Phil that he too has this disease and yet I was pleased to hear that a celebrity status indivudual with this disease came out to make more awareness of the condition.
For years I have tried to explain to others what it is that I have and I usually have to just say it is very much like RA because no one has ever heard of PsA. Since the ads with Phil have aired, I have had several friends and even some family members come to me and say, oh, Phil, that famous golfer, has the same thing you have.
This might sound terrible, but because he is still able to golf with the medication, they don't understand how come I still have so many difficulties since I am on the same types of medications. They still don't seem to understand that the disease and the effects of the medications are different for everyone.
Phil, thanks for coming out and talking about this and thank you for publishing this article as well!
I'm very involved with the Arthritis Foundation and this is the charity where my heart lies because my daughter was diagnosed with JRA at 15 months. She is now 8 years old and as a mother with a child with Arthritis I understand what the consequences of this disease are. It is just a different journey for each person. I pray that your journey will allow you to be able to continue in your career and do something that you love. I have found a great support within the Arthritis Foundation for my daughter and my entire family. My thoughts and prayers are with you. My great hope is that they find a cure for autoimmune diseases soon!!!
Tammy
If you do not have insurance, check with your county health service.
HANG IN THERE - NEVER, NEVER, NEVER GIVE UP
God Bless
FYI...if you can't afford the drug contact the company...you can receive help.
I have been in pain major pain for about 18 years now and have been through the mill with it. My adult children do not understand what I am going through and how debilitating the pain can be and I do not know how to explain this to them.
I have Fibro, Asthma, GERD, IBS, and two other forms of arthritis on top of the PsA. I have had my right knee replaced and need to be looking at having my left knee done once I have insurance.
I have severe pain in my Back, neck, feet, knees, arms, shoulders and hips. Another sign I have is my fingernails have pits in them and my fingers have taken on the sausage form.
My days of kayaking came to an end two years ago because of the pain I suffer as well as the hiking; I still hang on to my kayak in hopes that I will be able to get back to it but as time goes by I am coming to the rude awaking that may not be possible. I still push myself to at least once a day to go for a walk even if it is to go get the mail. Yes! There are days I just can’t do it though.
My daughter thought I need a dog because of my frustration with being sick.. I do understand her thought was to get my mind off of my pain and away from the depression, but now I feel guilty when I cannot walk him. I love him dearly.
This insight into this form of arthritis is helpfuland to know that there is support out there is great!!
Help us garner that awareness at the largest fund raising event of the year for the Arthritis Foundation.
I will be Co-Chairing the event in Phoenix on May 7th at the Phoenix Zoo - it's a great time for family and friends to join together and raise awareness.
Find the event on Facebook: http://www.facebook.com/home.php#!/event.php?eid=188994627800824
Or find us on http://arthritis.org
All the best to you!
Mark
Arthritis Board Member
Co-Chair 2011 Arthritis Walk
On a positive note, the drugs have improved so much over the past 18 years. In the early days, drugs like Naproxen, Methotrexate, and Cyclosporin were awful. The TNF-alpha blockers are miracle drugs. I've been on Humira for about 3 years now and was on Embrel for about 4 to 5 years prior to that. I'm in less pain now at almost 50 than I was in my 30's and early 40's. It's still hard for me to work out because I have permanent damage to my Achilles heel, knees, shoulders and hands.
I hope Phil can help bring more attention to arthritis and PsA in the same manner that Michael J. Fox has with Parkinson's disease.
I was glad when I was told that more of the story was being told here now & in a more realistic way until I read the disclaimer at the end of page 3. Is an Enbrel sponsorship the reason that the truth is now told that PsA is a "real" disease which can affect heart, lungs, and eyes and that Phil will not be cured after a year of treatment? I hope not.
http://rawarrior.com/phil-mickelson-psoriatic-arthritis/
Thanks to Phil, and Arthritis Today Magazine, for finally making it clear what his physical problem really is. I sympathize with him, and appreciate his bringing it to the surface. Perhaps other sports figures suffering from the same disease will do likewise so this disease, and coping with its daily symptoms, will finally get some recognition by the general public.
It's also inspiring to know that someone like Phil has found a way to cope with this disease, and be able to play a sport in which it can have such a profound influence on one's playing ability.
Keep hitting that ball, Phil. It means so much to so many!
drains on both sides of my chest to drain off fluids outside the lungs. I was told that this was a somrtime occurence in RA patients
Having said that, I am sadly disappointed that when I myself called Mayo for help with my pain (RA, fibromyalgia, RSD), I was told that that do not accept new patients for any of these illnesses. Why not me? True, I am not famous or rich. Also true that the amount of pain I endure as a 'regular', struggling American, is just as debilitating. Really, Arthritis Today, this created more frustration to the general population than you can imagine.
I have struggled for 20 years and believe me at one point I was ready to give up. Unfortunatly I read that some that have commented don't have insurance and are not being treated and I am sorry to hear that because the sooner you can get some form of treatment the better. This will never go away and will progressively get worse the medicine just makes it easier to live with. I am maxed out on all the medication that I can take and just pray that I don't get any worse because I have been told there is nothing else that they can do for me. I currently take the maximum dose of injectible methotrexate, i have remicade infusions every 8 weeks, i take max on naprosen twice a day, folic acid, mscontin twice per day for the pain and this was after trying enbrel,humira and the nonsteroidal antiinflammatories.they didn't work for long.
A statement was made that this was one of the better diseases to get but believe me I don't see it that way. I am very thankful that the medication is available but that is only true for people that have insurance because before I got my medicare I couldn't get the remicade infusions that I needed. I was told it cost way to much because it was $9,000-$10,000 per infusion therefore i couldn't have treatment until I had some form of insurance or could pay for the treatment at the time of service. I am very lucky to have people that love me enough to help take care of me because I definitely needed them. As you know I have my bad days and my good days but I will never give up and give in to this disease I am a fighter and have everything to live for. I could probably write a book about my journey but i haven't yet but the one thing I can say is you totaly look at life and the things others take for granted and you just thank GOD for who you are and where you are in life. Thanks for reading and I hope they continue to educate and manufacture new medicine to help us all.
You are all my heros. NO ONE knows what we live through each day. People say they understand, but we know they really don't. I'm sure you are like me and you hide your pain and you smile anyway because if we acted out like we truly feel, no one would be able to be around us. Pain changes a person.
Good to know that celebrity people, such as Phil, want to tell their stories to lift others up. I really enjoy the articles in Arthritis Today and look forward to them.
Peace and wishes for all for "good" days.
AFTER READING THIS ARTICLE I MAY HAVE PS. I
WILL SURELY MENTION THIS TO MY DR WHEN I SEE HER NEXT MONTH. I BELIEVE THE STRESS HAS A LOT TO DO WITH IT. I WAS CARETAKER FOR A LONG TIME FOR MY WIFE AND DIDN'T SLEEP MORE THAN A FEW HOURS EACH NIGHT, BUT THE DAY THAT SHE PASSED AWAY THE PAIN COMPLETELY LEFT MY BODY. AFTYER 3 1/2 YEARS I STILL HAVE LOTS OF PAIN BUT NOT NEAR AS MUCH. I LIVE ON PAIN MEDS EVERY DAY. HAVEN'T HEARD ABOUT HUMIRA OR ENBREL.n
A more eloquent post that I wrote:
http://anissastein.wordpress.com/2010/08/12/right-and-wrong-about-pa/
I'm pretty sure the specialist will test me and tell me what I can do to help my issues. I do try to golf, and I have extra thick grips on my clubs. I couldn't lift my arm over my head either, or reach under, and a specialist is treating me for tendonitis. There is arthritis in that shoulder, but the tendonitis is what is hurting.
I wish all of you could get some good insurance so you can get the help you need. I'm glad Phil shared his story!
"Modern" Research continues its Myopic Approach in dealing w/ Sickness & Disease... hence no Real Cures after Eons of time & $$$'s w/ the World's Greatest Minds!!
Using the Vegan Diet as an Absolute in a *Research Project* , w/ 1/2 cooked & 1/2 raw being a near term goal, most anyone would see a definite improvement in their afflictions, general health, & well being in a relatively short time!! Though, most will need some cleansing regimens added in as they are making their transition.
Why Vegan?? Do Not Kill is an Immutable Law of the Universe, & there's only one reason that a cow has milk, & a hen lays an egg... & it's not as our food - Common Sense!! By ingesting something the body was never designed for, ones body will malfunction, i.e. Sickness & Disease!!
"One day a Man's Food will be his Medicine!" Hippocrates. I say that Day is Today, through the Extreme Intellligence of God through Nature - there are Reasons foods grow in different seasons, have different colors, & certain shapes***
BTW, I believe the Book that persuaded Phil Mickelson to become a Vege was mine, "The Real Cure for Arthritis" [Amazon], that I sent him last Spring, before he was diagnosed! I did get a thank you note a few weeks later, but no further response after my query to him to see if the Book was mine~
There's a New Frontier in Health & Healing, that starts w/ ones most Precious Habit [eating]!! i've been a Vege, since 1980, a Vegan since 1990, & am currently transitioning to a total Raw Diet... don't worry, properly prepared Food always tastes good as changes are made, only it will begin to serve you much better - God Speed***
I agree with Nancy, going off your medicine and then returning to it when the symptoms return is not typical. Once the cat is in the bag the idea is to try to keep it there, not let it out again and start all over.
Sure the tnf blockers and other biologicals are great treatments, if they work, and an even bigger 'IF' they last.
I have RA and have been on Humira since July 2010. Before I started the treatment this disease did cripple me. The Humira worked miracles....but just a month ago the joint pain has quietly crept back in again. It is still relatively mild but I must face facts, the drug is failing me and it hasn't even been a year yet.
There are many who don't even have the resources to try these incredibly expensive drugs. They will never feel relief, even if it is short lived.
I feel for Phil and everyone of us that live with these illnesses but these articles make our diseases sound pretty benign to people that have never experienced this kind of pain. I expect better from the Arthritis Foundation. We need some awareness, not more of the same 'hurt & ached' articles.
Psoriatic Arthritis might be treatable for Phil. But for thousands of us out here Psoriatic Arthritis is debilitating and disabling for the rest of our lives.
Living with Chronic Pain is one of the things that no one understands unless they experience it and I wouldn't wish this on my worst enemy.
It was 1999 that I was diagnosed with Psoriatic Arthritis as well as Fibromyalgia. I was 36. I was a mother and has a spouse. I lost my relationshp due to the severeness of this disease.
I wish Phil well and hope that he won't need treatment. But he (and everyone else) needs to realize just how permanent this disease is.
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