This is very long – I just got to telling my story and wanted to get it all out. If you read it I’ll be impressed.
Around 5 years ago (at 32), when I was fit I hurt my right wrist at the gym. It was bad. Couldn’t open jars, drive, or turn taps on. Months. Not being one to be easily shut down I went back to the gym after a month and continued training with my wrist in a brace and favouring my left ended up doing the exact same injury to the left a little while later. I quit the gym. They took a very long time to get better but have never fully recovered. I was jogging still and trying to swim when my wrists were ok… Ever since I have to be very careful lifting anything or I will hurt them again and have done many times.
Next it was my lower back. stiffness and pain in the right lumber/upper gluts area. This never goes away for long. Quite debilitating. Have lived with this for about 4 years now. Getting massages and or osteopathy/dry needling every week to release the tight muscles in the glut area to live like a person for a few days. I must of taken a container load of anti-inflamitories and rubbed enough voltarin gel into my back to sink an aircraft carrier.
I kept asking the question. Do I have some kind of condition? No just tight muscles everywhere causing joint stiffness. Doctors, Osteos, Physios, You name it…
Next it was my knees. All of a sudden I couldn’t go up stairs too much pressure in them, sore to move and then wobbly on my knees. Crossing the road with traffic coming was scarey. Like an old man hobbling to get out of the way. they told me my knees were fine but maltracking inside, probably from the tight muscles in my lower back. We attributed lower back issues to most of my problems it seemed reasonable. and the fix for my knees was massaging the thigh muscles and they seemed to release. that problem went away. still comes back occasionally and ive learned to stretch my legs to solve it most of the time…
About the same time as the knees, i got a facial rash appear around my mouth, saw 3 dermatologists. All of them said it was Rosatia and gave me cream and anti-biotics. Never checked my scalp . i was on the anti-biotics for 18 months… only the cream keeps it at bay, if i stop the cream it comes back. Never made any connection.
Then about 12 months later my right ankle started up. then within a few weeks (as if right on cue) the left exactly the same. trouble walking… ankle pain, heal pain and especially tight Achilles tendon up the back of my leg. again this was not a cue for any myo/osteo/physio/gp to say hey something is up. i was now getting the muscles and tendons in my legs needled weekly also as they were all tight.
I believed for a long time that my lower back issues were the cause of tight muscles everywhere and the cause of all my issues. However I had a CT scan (which nobody suggested I decided) I was expecting to see all kinds of horrors and bulging discs/herniation’s etc. Nothing. No issue with my back of note. 1 slight bulge that could not explain my symptoms. Of note is the constant swelling below my wrists. Pain in all my joints and sore tight muscles and tendons everywhere in my body. I cannot drive very far in traffic without hurting my right foot. Cannot lift anything or do much.
It escalated to the point where I cannot even walk around the block. I went to a new GP who was amazed when I told him all my issues. We did blood work and he could see high reuhmatoid factors and suggested I go to see a reuhmatologist. I went after a 6 month wait and saw a very old man who I told my story too. He listened to me ramble on without cutting me off and at the end said “do you have a dry scalp?” I said “Yes” very dry. Always dandruff I cannot get rid of and sometimes itchy sores in the back of my head. I never worried about it much. Never thought it was serious.
He sent me to a new dermatologist who took one look at my face and my chest and my scalp and diagnosed my with Psoriasis on the spot. Said the 18months of anti-biotics was pointless however the cream “Elidel” was the right thing to use on the face. Gave me some medicated shampoo for the scalp and sent me back to the rheumatologist. I also have dry flakey inside ears and dry skin around my finger nails.
Now I was very concerned as I had read that undiagnosed and untreated psoriatic arthritis can lead to major deformity and disability. And as I was pretty much half way to disabled already after 5 years I had some real moments of dread, I went for a nuclear bone scan and was amazed when he gave me the results. They found no damage or arthritis anywhere in my body. Apparently all my issues are inflammation only and therefore with treatment should make a full recovery. I have read a few other stories on here and that seems to be a trend that nobody has any damage show up on a bone scan. Is this correct?
I researched my new diagnosed condition and I discovered all sorts of symptoms I have lived with for years without ever knowing anything was wrong. Depression, Anxiety, Feelings of unreality, fatigue, lethargy, paranoia, depersonalisation, bouts of extreme melancholia, Brain cloud… Im not sure if I have experienced all these but a good portion of them. Certainly the brain cloud. I thought I was going senile as I struggle to think of things sometimes. Conversations can be difficult. The plot thickened however as I got deeper and discovered the link between PSA and Panic disorder. I had never had a panic attack in my life until about 5 years ago when I experienced something that changed my life forever. Around the same time I hurt my wrists for the first time.
On this particular day I took a new brand of creatine monohydrate at lunch time and stacked it with my usual preworkout mix, changed into my gym clothes at work and jogged to the gym as I always did back then. Then on my way through the front door of the gym nearly died. My heart was racing. I was spinning out, couldn’t breath. My friend the trainer there looked after me. Sat me down gave me water. I was seeing birdies like in a cartoon. It subsided over about 30 mins but I was not ok for the rest of the day. Over the course of the next month I had minor reoccurrences of the same thing daily. Felt like I was falling backwards and had to keep moving forward to escape it. Very horrible. I went to hospital but the doctors could not find anything wrong with my heart or blood pressure. I saw a few doctors who said it was panic disorder and I should see a shrink.
I have overcome the panic for the most part. It doesn’t happen often now but sometimes I have an episode. Something in my body changed for ever that day in my nervous system. I am still not the same. I have moments at work where I freeze up with nerves talking in a group. I have had to give up coffee as even now 5 years later if I have 3 sips I get an attack instantly. Well it turns out this is actually due to PSA and slight dips in blood pressure. I stutter occasionally.
Does anyone else have Panic disorder?
The rheumatologist believes that the day at the gym I describe was some kind of storm and the moment the desease switched on in my body.
I certainly feel like a shadow of my former self but am hopeful that with treatment I will make some kind of full recovery.
On treatment, the Rheumatologist gave me Saloproxin/Salofixane I think it was. Voyage to trip out city! I took it for a week and had an upset stomach, dizzy, headache, sores on my toung. The day I upped the dose to the desired dose… 4 pills a day I had a major episode at work where the room was spinning so I have stopped taking it. Waiting for my next appointment with the rheumatologist. Hopeful the next thing will be different.
I have read about gut health, leaky gut, and lack of good bacteria in the gut leading to the cause of these types of conditions. My rheumatologist says that is all bull but has anyone explored this? I would like to know if there is merit.
This is very long – I just got to telling my story and wanted to get it all out. If you read it I’ll be impressed.
thanks for sharing that story,and welcome,a real brief version of my own story goes back about six months,i stepped in a hole at work,wrenched my knee…and it was all downhill from there, i ended up in a massive flare up and couldn’t get out of bed,drive,get in the shower or wipe my bum.ive been taking prednisone,and sulphasalizine.still having daily problems back fingers,legs,wrists,…but much less.at least i can still work…ive had a DX…psoratic arthritis.there were problems in many areas years before but i ignored them.
\hope things come right for you.
Your story is very typical of my own, though mine has progressed more slowly over 15-20 yrs. I have the EXACT same issues though, and it’s amazing how similar you sound to me. I’m not sure I would have ever been diagnosed had it not been for my orthopedic surgeon who refused to accept my knee problems as just being osteoarthritis. Until recently (last winter), I only had the stiffness, tight hip/glute muscles, achy tendons, inflammation in knees that came and went for no reason, wrists that refused to cooperate just like you described…but most of it had no rhyme or reason. My rheumatlogist told me there is an epidemic occurring where people like you and me are suffering but being blown off as having a pulled muscled, sprained wrist/ankle, bad posture causing an achy back, etc. I was lucky to find one of the good Drs who didn’t write me off and really dug into what was happening to me. I hope you have someone similar in your corner. Just know you are not alone, and this site has loads of valuable information.
Don’t worry about the length it’s not too bad! And you had a lot to share! (I might be biased since my average post is longer then your introduction though )
Yes it’s best to start as soon as possible, but it takes a while for it to be “too late” and for some people it’s sooner then others… so it’s hard to predict. But 5 years doesn’t seem like that late compared to other stories I read so I’m sure you’re fine!
It can take a while before you find the right drug for you… failing because of side effects is the quickest way to find out a drug isn’t for you… but I’m sure you will find your miracle soon!
The mental stuff sounds familiar… I don’t have any diagnosis yet though… I could always control my fears and even when I was sure I was having a heart attack I just went on working (dying seemed like a better option then going to the ER and nothing being wrong…)
Welcome too. And you write so well it didn’t seem long. It’s so scary at the beginning isn’t it? I was like you when I was given methotrexate but I’m coping just fine with the sulfasalazine. So different drugs react differently with everyone. Keep that in mind - it’s useful. Now to see if the sulfasalazine works. That’s the next hurdle for me. And my PsA started following a bunion correction operation, I just never got better after that. Had skin psoriasis badly in my teens but it’s practically non-existent now. I see you’re in Australia, there are quite a few members from there and they can help you navigate too. Keep sharing how you get on. And remember as other have said you’re not alone with this anymore.
I have never read anything involving “leaky Gut” that didn’t invariably lead to a sales pitch for some kind of a miracle treatment. There certainly are some types of "enteric PsA, but none are caused by leaky gut.
Thanks for you comments everyone. very appreciated!
Yes… there was $1200 worth of tests to be done that werent covered. I didnt do it, it was a little worrying to me. and wanted to speak to the Rhuematologist first.
However i’ve heard this on many fronts. my mother is into reading all about health and has her own auto-immune condition (Hoshimotos/Thyroid), there have been a few books published by a few medical people over the past few years suggesting microbes get through the gut and enter the body which are then attacked, and the resulting inflamation travels around the body. the fix is eating healthy and inondating your gut with microbiom/probiotics, l-glutamine. It sounds a bit far fetched but wanted to raise it incase others had looked into it and found some relief. I suppose it never hurts to eat healthy anyway.
As i said above my Ruma said “thats a load of bull”… and I was quite impressed by him - he nailed my condition in 2 seconds flat - like he already knew long before i finished talking. So far he seems quite on the ball so i’m inclined to beleive what he says.
Nickace, welcome to our PsA clubhouse! The floors creak, but you won’t notice cuz all of us creak too.
Yes, quite the story that you have, and looking back, there were so many symptoms that got ignored, blown off, blamed on other things. A great number of us here have had very similar experiences to yours. My diagnosis was twenty years coming, and by the time I got it, I had written myself off as an over-exaggerating middle-aged whining hypochondriac. I wasn’t quite as lucky as you were, though. I’d had two knee replacements and severe foot damage before someone finally decided that there was something wrong with me.
My advice to newbies who come here is this: accept the most aggressive treatment that your rheumatologist is prepared to give you. Don’t mess with this monster! You’re lucky not to have damage. Do what you can to keep it that way!
We have some really fab members in Australia who know the PsA ropes, and I’m sure they will be in touch. One of our moderators, @Jen75 is from Aus as well.
Glad you found us, and we hope that you will be glad too!
PS You have no damage. Wonderful, fabulous, amazing! Embrace the treatment, and you may well find that you can live a reasonably normal and happy life, despite this disease. I should have told you that, except for the pain caused by my extensive joint damage, I feel better now than I have in twenty years.
Well that is good news for me.
I am glad you feel better but what a horrible story you have.
What a monster!