A new, lengthy investigation was triggered by an injury from a bad wrist position my wrist during my hysterectomy, last February.
From that injury, I developed a tiny ganglion inside my wrist joint (not on the outside) and synovitis. I couldn’t use the wrist for months, until it was investigated by an orthopedic doctor.
Such a tiny ganglion can be a big problem if it’s in the wrong spot!
Not being able to use your dominant hand for non-strenuous things like writing, typing, brushing hair and teeth, lifting a glass to take a drink, let alone cooking, crafting, cleaning, gardening or piano playing was probably the most frustrating period I’ve been through, health wise.
I never knew just how much I relied on my poor hand!
Ongoing inflammation is a problem
After a course of cortisone, I had a much better range of movement, although the pain remained quite high after I finished the course.
Because of this, and some really high inflammation markers in my blood, I got referred to my rheumatologist. He agreed with me, that with multiple joints with slightly to significantly limited movement and the inflammatory blood results, it was definitely not fibromyalgia.
Follow up blood tests said it was also not rheumatoid arthritis, gout or Lyme disease.
A hospital stay
Here in Germany, when the limits of the out-patient specialists tests are reached without a definite diagnosis, you get sent to stay in hospital.
There, usually barrages of tests are performed after they try to tease out your health history. Mine was more complex than they were used to unraveling, so I had to stay in there for just over a week.
I went in with a pain level of around 9, not being able to see properly, inflammation in my eyes and sinus, severe headache, and limited movement in my spine, fingers, wrist, knee, feet and toes.
The first opinion presented was the easy way out – ‘just fibromyalgia’. That was shot down by the boss of the section, who pointed out that fibro doesn’t actually cause any inflammation. Fibromyalgia is a common secondary problem, being triggered by the pain from the inflammation.
There is definitely an underlying problem.
So he popped me on cortisone tablets, mostly to see how I would react.
Just two hours later and the pain had all but disappeared. The next day, the obvious inflammation in my eye had cleared up too.
It was an incredible feeling, to feel all the pain drain away, leaving only a little muscle soreness behind from all the bracing I had been doing.
Xrays of my spine, hands, feet all said my joints are pretty (not osteo or rheumatoid arthritis), although they were severely limited by the soft tissue not allowing a good range of movement. Bone scan results won’t be in for some time.
The second theory was some kind of inflammatory tissue disorder, like lupus or multiple connective tissue disease.
Then, they seemed to get distracted with my skin issues and forgot a few of the other symptoms. The third theory was psoriasis, or rather psoriatic arthritis, without constant skin involvement.
The boss dropped in again, and noted my old costochondritis pain (from age 13), and sciatic pain (from age 11), plus the ongoing bowel and cervical spine inflammation, intermittent skin inflammation, and the newer eye and extremity joint problems, and pushed me up to the umbrella category.
Because the cortisone had worked so quickly and completely, I got a diagnosis.
After about 30 years since the symptoms began!
Many doctors prefer to call it spondyloarthritis, because ‘-itis’ means inflammation.
Under this umbrella category are psoriasis or inflammation of the skin and joints, inflammatory bowel disease, spine and chest inflammation, and other soft-tissue inflammatory problems.
It’s like I took a bit of each of the sub-categories.
Which actually means it probably won’t develop into a severe case, unless my body decides to go down into predominantly one sub-category.
Treatment is short term cortisone for severe and acute flares of the illness.
Long term, I’m starting on sulfasalazine and using eye drops as tear supplements.
The aim of the treatment is to get the inflammation in my body down to a minimum.
Inflammation levels have spiked repeatedly and severely over the last few years, according to blood tests, and it is now causing more chronic problems to appear. If the inflammation is allowed to continue unchecked, it could ruin my bowel walls, make joints eat themselves, or even fuse joints together.
Of course, there are therapies and lifestyle changes that will help in addition to the medication. And I have a head start on several!
It’s really not in my head
It’s very relieving to finally have a diagnosis, and especially one that isn’t fibromyalgia.
What was the longest time you have searched for answers, before receiving an accurate diagnosis?