My Psoriasis Journey – The Joint Pain Begins

So where did my joint journey begin?  For those of you have read my previous posts I’m inviting you on my journey to a diagnosis of Psoriatic Arthritis. 

Looking back I believe my joint issues started 8 years ago.  Though a piece of me questions if a problem I have had since childhood may be related but more on that later.

Eight years ago my husband and I were training to hike the Grand Canyon.  One day we were hiking and I took a step.  My knee was suddenly on fire.  I spent the rest of the day limping and in pain until we could get to the car.

I assumed I had twisted my knee by taking a bad step.  We were just a few short weeks away from our trip so I was worried. I knew ligament damage was a possibility so I was concerned.  But I was also sure that I could beat it.  I didn’t want to go to the doctor. I was worried I would be told it was normal for a woman my age (I was in my early to mid 40’s at the time) or that the doctor would want to do a steroid injection in the knee.  So I went home and used ice and heat and ibuprofen and elevation and rest and a knee brace.

Some days were bad enough we thought we were going to have to postpone our trip.  But I was bull headed enough I was going to make it work.  Or so I hoped.

As our trip approached I found some days were better than others for my knee.  A couple of times I noticed a twinge in my left knee as well.  Just to be safe I packed two knee braces.   And I anticipated that the hike down into the canyon on day one would be my biggest challenge. 

This was the trip where we were introduced to the use of hiking sticks.  And no they are not just for old people with knee issues.  They are an amazing tool for anyone who is serious about hiking.  The reality is that they probably also really helped my knees as they absorbed some of the shock that would have been on my them.

I felt happy to have made it into the canyon on the first day and still be able to walk.  In fact at some point on the way down I removed my brace as it just seemed in the way.  My knees actually felt better than they had in weeks.  There was some soreness (which I think anyone hiking into the Grand Canyon the first time experiences) but it wasn’t the kind of pain I had been experiencing.  I couldn’t explain it.  I knew if I had injured a ligament or my meniscus that it shouldn’t suddenly be better but I was so happy that things had improved I decided to just accept it.

After our 4 day hike we spent the night with my sister and brother in law.  He is a retired MD and told me I had been an idiot to do this hike with an injured knee.  I respected his opinion and knew he was right but things had worked out so I probably didn’t learn anything from my foolishness.  I was just happy that my decision to avoid the doctor had seemed justified.

Superhusband and I continued hiking after our trip and my knee only bothered me occasionally.  Crisis averted in my eyes.  Then a few years later we were training to hike the Inca Trail.  My right knee pain returned with a vengeance.  One day on a hike both knees were so bad we weren’t sure I was going to make it back to the car and I definitely had tears in my eyes.  Over time I thought my knee just became painful if I stepped wrong or overdid it.  But now these issues seemed to have just come from out of nowhere.  And once again I decided to push through.

The knee pain subsided again and we were faced with me being scheduled for a heart cath six weeks before our trip.  All the while I was being reassured by the cardiologists that this procedure would not limit my ability to hike at almost 14,000 feet.  My knees had stopped hurting so this was my primary concern now.

I came through the heart procedure fine and we started training again.  I really had no concerns about my knees.  I just knew I should be prepared with ibuprofen and braces. And I was.  

I had twinges of pain on the hike but the day we ascended Dead Woman’s Pass it was the hike down that both knees decided to revolt and I really wanted to consider just sitting down and staying put or give them another reason to call it Dead Woman’s Pass.  I was definitely the slowest member of our group but as before I pushed through and eventually made it to camp.  This time I was certain I might not walk again.  But obviously I got up and did it again the next day.

Honestly I think I failed to speak to a doctor about my knees because the pain never stayed long enough for me to bother seeing a doctor.  It might give me fits for a few days but it definitely would come and go.  Right knee is always involved.  Sometimes the left knee joins in just to keep the other knee company.

If you haven’t figured out by now my husband and I like to hike.  At some point we were out hiking with packs on and I thought I had stepped wrong.  I felt this horrible pain in the left side of my back.  My back continued to hurt.   I took ibuprofen and got a massage and it seemed to improve.  This happened in August before our Inca Trail hike.

I noticed after certain movements like cleaning a lamb stall that the pain would return. At one point I thought I had pulled a muscle near a rib.  It was a horrible pain. This time I sought out a doctor. 

The nurse practitioner I saw thought maybe I had injured my back so she gave me a shot and a medrol dose pack.  It didn’t really help much.

  I did start to notice that if I had to spend much time sitting that the pain was much worse.  I also felt that walking helped it.  And when it was too much to bear a massage would usually help as well.

I went back to the doctor when there was no improvement.  I told her I felt like my left hip was painful too.  She manipulated my leg and looked at my back and said she wanted me to try Airrosti.  Now I am not a fan of chiropractors and I had heard that Airrosti was extremely painful.  I was desperate and agreed to try it.

The Airrosti doctor was very nice.  That made it so much harder to say the things I really wanted to when he did the treatments.  Dear lord did they hurt.  He thought maybe my issue was with my psoas muscle.  So he did his treatment and then I was shown some physical therapy homework and off I went until next time.   I looked like I had been in a car accident from all the bruising after the treatment.  I would not be able to have anymore massages until this was done.  The next morning I thought everything felt better except for the bruising.  The relief lasted about a day and it never helped again.  He tried different areas and different exercises but in the end I felt worse and was removed from his treatment plan.

So back to the doctor I go asking for imaging.  Of course the biggest fear is a bulging disk.  I keep telling her that I felt like there was pain in my hip also.  She wanted to do a lumbar spine MRI.  I begged that the hip be included as well.  She finally agrees but of course insurance says no.

I started physical therapy and waited on the results.  I also asked for gabapentin for the pain.  This actually seemed to help me sleep better than the 800mg of ibuprofen there times daily was doing.  The MRI was pretty boring and my level of pain was still high so my physical therapist encouraged me to see a spinal doctor. 

The spinal doctor actually said my MRI was beautiful and after examination he concluded that my pain was from my sacroiliac joint.  He said most people with sacroiliac joint pain have it from an accident but some people just have unexplained pain.  He started me on a high dose of tapering prednisone and wanted me to see another doctor.  He explained that this other doctor would put a steroid injection in my joint space and that would be diagnostic for SI joint issues.

So off I went to the pain management doctor.  Please understand this issue had to be addressed.  At times my pain was so intense I could barely function and would find myself crying out in pain as no position was comfortable – sitting, standing, laying down.  I wasn’t sleeping well because of the pain.  But leading up to these appointments had been a long journey.  I could experience pain like this for a month and then suddenly it would go away;  maybe not 100% but enough to just be background noise.  At this point the pain had come back with a bit of a vengeance.  But by the time I saw the pain management specialist the prednisone was starting to do some good.  My pain levels were down to a 3 or 4.

He asked some questions and diagnosed sacroiliac pain.  Prior to the prednisone I was started to develop some possible sciatica as well. The physical therapist thought the Arrosti may have aggravated my nerve. Once again I asked how this joint issue happened and once again I was told since it wasn’t an accident I was one of 10% of patients with this issue because I was just lucky.  But there was no need to worry because he would do the steroid injection in my joint and I would be pain free for an indeterminate amount of time.

I will tell you I honestly did not want to that injection but multiple people were telling me to do it.  My physical therapist really wanted me to try it.  I guess after seeing so many failures for my daughter I was really dreading this.  But I signed up for it.

My daughter drove me to the appointment.  And I can honestly say that I was not having any pain.  I asked the receptionist if she would tell them I wasn’t in pain because I wasn’t sure how we would know if the injection had worked.  The office staff seemed bewildered that I could be pain free.  They asked the nurses.  The procedure was cancelled until my pain returned.

I wish that was the end of my story but obviously you know it is not.  I have a lot more to tell.  But today I will tell you one thing that I have learned since my diagnosis of Psoriatic Arthritis. If you google sacroiliac dysfunction or sacroilitis psoriatic arthritis comes up as one of the top differentials.  It helps to know what you are looking for.  Symptoms that differentiate it from other forms of arthritis is that it is worse in the morning and usually gets better as the day progresses.

I had complained of stiffness in my back every morning to my primary care doctor even questioning if I should get a new mattress.  She had written prescriptions for my psoriasis.  None of the other doctors asked about my other joints though I did volunteer that my back was stiff in the mornings and my hip hurt on occasion too.  No matter how much I pressed for a cause for the pain in this seemingly (to me) small joint the answer was always there is no reason you are just someone with idiopathic pain.  We’ll never know why. 

We’ll continue this journey in my next post.  But here is my reminder to you.  Psoriasis is an autoimmune disease.  You may have a little bit of psoriasis or the misfortune of being covered in plaques – it is still an autoimmune disease.  There is inflammation occurring in your body and we need to be fighting that.