So where do I begin?
2 and a half years ago, I was on vacation to Egypt, and contracted a bad stomach infection. It started 2 days before we were going home by waking up at night with a bad sweat and stomach cramps., but the mrs, always prepared, had something to stop diarrhea in her bag of tricks, and it did the trick. For 2 days, just enough to get home. Then it came back with a vengeance. I spent every waking minute for 10 days on or in close proximity to the toilet. Every 15 minutes or so, I would have to go. Bad enough that I didnt even dare drive to the doctors, in fear the 20 minute car ride would make me soil myself. I lost 6kg's in a week.
And as it started to get better, it actually felt like the infection took a guided tour of my body. I got pain in the hip area (at the top of the hip bones), lower back, and it felt like having the flu, and it did not get better. But in time it did.
I had, truth be told noticed problems with some joints before, my jaw has been a constant problem for 18 years (teeth grinding at night, pain from jaw joint, clicking noses in my ears etc, and the last few years its been like my neck was very sensitive to a wrong sleeping position. But these were all short lasting, or manageable at least.
After this, I had real problems with stiffness and pain in the lower spine and hip/SI-joints (as I found out it was). I started physical therapy, and 6 months later he was going to correct something in my neck to help with a shoulder that ached and lacked ability to rest. That neck correction (chiropractor move) cost me 8 months of constant and agonizing neck pain at the very top of my neck. It still comes back in flares. (yep, I've learned to appreciate the term). My jaw that has always been bad, got way worse. Now it sounds like a popcorn machine even just opening the mouth at times, and those noises.....they HURT.
I went to my GP ofc. Initially I had no clue what was wrong with me. I'm 37 with no previous cronic pains, and I worried the pains was from cancer somewhere inside. He assured me, despite taking no tests, that I was "the wrong age and group for any of the cancer types that could apply". Strangely I believed him. Something in the back of my mind told me the same, "it's not cancer."
But I started to notice things. I realized I got worse when the weather turned worse. I noticed that cold made things worse too. I tried regular prescription free painkillers, and they could not touch these pains. The things that did help, was wamth, and excercise. (Only a lot later did I find out that sometimes cold packs do too) I have spent literal hours in a stretch in warm showers and baths. Oh and the exercise.......thats a tricky one. When I do one, I will almost feel drugged up and high afterwards. I've liked to exercise before, I have been a competitive kick-boxer, I have trained Wing chun Kung-fu and Aikido for years...but this sensation is new. It's a regular painkiller. What a dream to have a medicine like that, huh? ...only to find out that the constant pains drained my body to a level where actually getting one done isnt always possible. More often not actually. Fatigue they call it. I had to find that out myself as well.
I tried again and again and again and again to tell my doctor that my pains are real. He was and still is convinced its in my head. Much as a result of a 20 year old anciety diagnosis. Oh, he took blood tests ofc. once they were returned negative, he gave up.
I started reading about what I thought it felt like, arthritis. I am an avid reader, I have a reading speed that is frankly a shame to people who spend time writing books, being able to swallop up a 900-pages book in a day and a half. And I have a good memory. So I put those skills to work and looked up all and anything arthritis. Ankylosing Spondylitis fit a lot with my symptoms. A lot of them.
I got my nerve up and asked the GP for the blood test, and he actually even ordered MRI of the SI-joints. To my suprise the blood test was negative, and the MRI showed no fusion of the IS-joints. (Later I found out that this early in the disease it would have had to be done with contrast injection to better spot inflammation, wich was more likely to be present than fusion).
The disease kept going. 2 years into the disease I had experienced joint pains in lower spine, IS-joins, spine, neck, jaw and in my chest. (the last so powerful, and accompanied with muscle cramps that even the ER personell was convinced it was a heart attack.)
I got Neuropathy symptoms; altered sensations to cold and warmth, needle pains, nerve pains, pain at the top of my head where actually touching the skin was painful.
I got sores in my nose that never grow, despite a specified antibiotic cure for it. GP's responce: "thats odd". For a while I wondered i I had Crohns.
In the end I pushed to see a Rheumy. She went over me, did all kinds of checks, and said I checked every box for Ankylosing Spondylitis (I had not even mentioned to her that I had earlier suspected that.), apart from positive blood work or MRI. But with that absent she leaned toward "a rheumatological response to the stomach infection" I got prescribed Voltaren (NSAID) for the pains.
Trying the Voltaren for 14 days I found two thing: after a few days my fatigue was better, finally! -and the pains seemed at a lower level.
I got a new prescription and used them daily for 6 weeks. In the end I had to quit, they were absolutely murdering my stomach. Acid burn, heart burn, stomach aches, stomach cramps, bloating, diarrhea...you name it. Now, 6 months later I still have severe problems with my stomach.
My GP made me feel ashamed to be visiting him. He was very clear about what he thought. I ended up one day crawling on all fours at work, and still didnt see him, for the shame of it. When finally a friend of the mrs saw me, she pushed me to go, she is a physical therapist. Turned out that particular pain was a "large, central L5/S1 disc prolapse that pushes on the left side nerves and touches the right side".
And then just before my summer vacation started...I started noticing a rash on my upper arms. I have had it in autumn/winter the last 5-6 years, and 2 years back I mentioned it to the doctor again, and he said it was nothing, just dry skin, but a skin doctor could check it out. By the time I got an appointment it was gone again, and the skin doctor said to come back when it reappeared.
That fall it didnt return and I forgot about it. So now I ordered a new appointment after waiting for it to get as visible as possible.
Psoriasis.
he checked me over and found out that the "ecsema" in my groin that my doc had given me creme for was inverted Psoriasis, and that I had Psoriasis on the elbows, upper arms, knees, heels and belly button. It was just so little that I had never given it a thought that it might be that.
Two things happened at the same second: I remembered reading about Psoriasis being linked to a LOT of the auto-immune diseases, that the Rheumy had asked if I had it, and simultaneously he said "even if it's not bothering you much it's so important to know, as it can lead to arthritis that does not show up on blood tests!.
I could have french kissed the guy right there and then.
My status now:
The skin doctor wrote my GP a letter ecplaining the diagnosis of Psoriasis, and the GP hasnt even responded. In fact he has quit as a GP. The added dimension is that I now realise that the "cold damage skin peel" I suffered to my ears in my 20's was probably a psoriasis outbreak, and that the jaw problems may well have been arthritic all along. This makes what always felt like a wrongful panic anxiety diagnosis (including an 8 month stay at a psyciatric insitution) that never fit seem like something else alltogether. My problem was, and it took me years to realise, with balance being compromised, as my jaws were always worse when it hit. And to the point where pressing my jaws it felt like fluid under pressure. What I did not have and never have had apart from one time, was a depression. I am simply not capable of having one, as I know for certain. Because the one time I did have one it was horrible and produced by a psyciatric drug. I had that episode of "anxiety" for close to a year, then no symptoms of it for another 8 years, then another one, and now again the same symptoms. But they do not scare me. Horribly uncomfortable, yes, but giving me anxiety; Hell no. My anxiety was back then classified as rare "as it only manifests in bodily symptoms"
I am booked for appointments to a new GP n a week, then the week after a head of department for physical medicine at a major hospital that I got in contact with earlier to try and figure out the cause of my joint pains, and the person at my work place that deals with company health insurance tomorrow. She has promised she will push the insurance company to get me straight to a rheumy again bypassing a GP referal. I am pulling out all the big guns and going to war.
I will be telling them:
That I have had severe joint pains for 2 and a half years. That they do not show up on blood work (unless you specifically look for and discover anemia or slightly raised CRP)
That my joints get swollen and warm to the touch as confimed by my wife.
That I can literally feel that something has changed in my jaw and neck joints. The way they make noises, the way they hurt and move, and that I want MRI's done of my entire spine, neck and jaw.
That a vacation to Spain gived me a week of bliss. It literally means a week painfree, and coming home is painful.
That I suspect Psoriatic Arthritis of the Sponylitis kind.
Do I wish for a diagnosis? -Oh yes. This thing is here, it's not going away and darn it; I will not have people thinking I am imagining it anymore. Even more so; there is help to be found and ways of some relifef and I need them. Not the painkillers, I'll crawl before I resort to them, but yes; I want help!
-gilth-