Starting to get a bit sick of all this, to be honest.
I’m a 39 y/o male who was diagnosed with PsA and Ankylosing spondylitis about four years ago. This came after numerous visits to GP’s since I was 18 with back and troubles, as well as psoriasis, but it seems the dots were never joined as I am quite tall and my pains were just back pain.
Over the years I lost more and more mobility and I stopped going to the doctors about it as I knew what the answer was going to be. I had two children and would struggle getting around the soft play areas, sometimes almost getting stuck as I couldn’t bend properly. My job as an emergency call-out gas engineer meant I was either crouching or crawling around floors for most of the day and it was becoming harder and harder to do fairly basic things. Still, I persevered.
After going out for a little ride on my bike a number of years ago I noticed that my ankles had swollen up like oranges. Both sides of the joint on both legs were extremely swollen and tender. Funny, I thought, and dismissed it as getting older or whatever.
it kept happening intermittently, and I began to notice some other things happening. Since I had my first big instance of back/hip pain when I was 18, I’d walked with a limp. I had tried to jump on a skateboard and felt like I’d put my back out. After two or three days of agonising pain I went to the infirmary where I was told I’d ‘dislocated’ my sacroiliac joint (this was to prove an amusing anecdote for the rheumatology specialist some years later). My limp was becoming more and more pronounced. I was also having agonising radiating pains through my back. Ah, my kidneys must be packing up from a misspent youth I thought. My back and neck had also stiffened to the point that I couldn’t drink out of a can fully anymore. I simply couldn’t bend my head back to get liquid to pour out after the can was about half way drunk. Clearly, something was happening to my body. I wasn’t sure I wanted to find out.
At some point about five years ago I tore the meniscal cartilage in my left knee at work. If I thought my limp was bad before, now I was really rocking an ataxic gait. The doctors suggested physiotherapy to se if it would knit or whatever. I went a few times and was discharged as they thought it would heal fine and wouldn’t need surgery. At about this time I started to get some extremely alarming signs of swelling in my left knee. It would swell up like a balloon. It looked like some kind of John Carpenter-esque body horror makeup. It looked like my knee was a beluga dolphins head. It happened after I was having a prance around at a wedding, and I thought it must be to do with my torn cartilage. It went down after a week, and then after doing some mild prancing at another wedding, it went huge again. Like, super huge. It was while I was on a gas escape call out during the night, crawling around the customers home with a grotesquely swollen knee, ankles swollen like oranges, a spine almost completely rigid, with agonising pain in my back and sides that I reached my limit. I finished the job, limped back to my van, somehow managed to drive back home and called in sick.
I didn’t return to work for nine months.
Before this point, I’d managed to put up with the pain. I’ve had pain in my back and hip for as long as I can remember and I’ve just put up with it. I’d say I have a fairly high tolerance to it. This was to be put to the test in the following months. I was scheduled to have a cartilage operation to help with my knee. I was also sent back to physiotherapy. It was here for the first time that someone connected all the dots and mentioned arthritis. See, a week before I had went to the doctor about the pain in my ankles, as the focus was on my massive, bulbous knee. I didn’t want my ankles forgotten about, but I’d also run out my steroid cream for the psoriasis I’d had for most of my life. The doctor wrote a script for the cream, and arranged a physio appointment for what she suspected was flat feet. It was at this appointment that the physio took a look at me, my massively swollen joints, the plaque psoriasis on my lower leg, and the ridges on my nails, and said she thought I might have a type of arthritis that would tie all of these symptoms up into one diagnosis. She referred me to the rheumatology team. That lady is a saint.
I went to see the specialist about having my cartilage operated on. He laughed, and said no way was he operating on a knee that was so swollen. He said he thought I might have ankylosing spondylitis. A cute name I thought. I looked it up. It rang bells instantly.
Comments
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Hello @cardyfreak welcome to the Versus Arthritis online community.
What a story you have to tell! After almost a lifetime of pain and multiple other symptoms an observant physio started the ball rolling with a suggestion of Psoriatic Arthritis and finally a knee specialist spotting the Ankylosing Spondylosis.
I am so glad you are hopefully now having treatment for your dual diagnoses.
Now those two conditions together do not get mentioned very often, but there was someone back at the end of last year @Creaky_old_man he didn't seem to get much response to his post, but here it is:
He was active on the forum only yesterday so might spot your post.
This community is full of people who have one form of Arthritis or another sometimes more than one condition like yourself, but the main thing everyone has in common is pain. I wonder whether this might interest you while you wait for some of our members to come along and share their story/experience with you:
I do hope you will decide to continue to use the forum
Very best wishes
Ellen.
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The rheumatology team sent me for an MRI scan of my full body. They discovered that every one of my vertebrae was swollen from my skull to my hip. That the ribs and cartilage that hold them to the spine were also swollen (that’s what the radiating pain in my back and sides was), that the left sacroiliac joint in my hip was completely fused, and the right one was partly fused. A blood test showed I had some swelling factor result of over 150. Apparently, anything over 5 is bad. But it seemed like we were finally getting somewhere.
As all this was happening I was in constant agony. I couldn’t tolerate any NSAID’s stronger than ibuprofen so those weren’t an option. All I could take was codeine and that stuff gives me a sore head. I could barely walk, the fatigue I was experiencing was unreal, I was basically helpless. I describe my life during that period as like living under a veil. I can’t remember much of it, it’s like trying to remember things in a dark room with a low power light bulb. Thankfully my partner is wonderful and she helped me with my kids and was a constant source of strength for me. Not sure I could’ve managed without her.
Anyway, I finally got the diagnosis of PsA and AnkySpond and was given Amgevita. It seemed to work at first, and I returned to work in March 2019. After being back at work for a week, we then received news of the ‘virus of unspecified origin’, covid. Lockdown. Immune systems in danger, blah blah blah. Having just recently been told to stop my meds for a few weeks as my immune system has bottomed out, I found this new news rather disconcerting. Because of the nature of my job, I worked right through the initial lockdown, going into peoples homes looking for gas leaks, all very worrying. The Amgevita also stopped working. I was given some steroid injections and trialed a tablet called etoricoxib. It made me feel like I was sea sick for the two weeks I persevered with it, but alas it was doing nothing but making me ill. I ended up having to go off work sick again.
I was given methotrexate to inject. This had no effect. I was then given benipali to take alongside the methotrexate. This helped at first, it certainly relieved the fatigue I was experiencing but didn’t really do much for the swelling in my knee and ankles. It did enough for me to plod on, as I’d been working through far greater physical limitation than I was then experiencing, but something the doctors and nurses had said kept sticking in my head- my meds should make me feel as good as I feel after a steroid injection. I was nowhere near that.
I continued to take the stuff for about 18 months, but within that time I had a number of extremely unpleasant flare ups that I collectively refer to as ‘the ankle-snappers’. It would go like this: over a week or two I feel myself getting more and more stiff, pain begins to build in my ankles, swelling increases in knee and ankles, until one morning where I would be woken from my sleep with the feeling like my ankles had been snapped. As if Kathy Bates from Misery had hobbled me. Like someone had taken a sledge hammer to my ankles. This was a new type of pain, one that left me feeling haunted afterwards. It certainly recalibrated my understanding of what pain could be. The only thing that relieved it was steroid injections. These would generally give me about four weeks of benefit before tailing off and the cycle would start again; increasing pain, swelling rising, ankles snapped. I had a bad run of about four months like that before it stopped getting to the point where my legs felt like they’d been broken, but the memory of the pain was there and it was dreadful knowing what was coming as the steroid wore off. It really have my mental health a kicking. I’m a pretty positive guy and I try to power through a great many of the issues I’ve had but this thing was arresting. The terror I’d feel knowing that over the next few nights I might be waking up practically screaming in agony is difficult to explain.
So now we come to the events of the last few weeks. I’ve been taken off benipali and am waiting to start secukinumab. I’m currently off work as I’m having more ankle snappers. The last steroid injection I had lasted two weeks before the agony kicked in again. After almost five years of serious issues with walking, my left leg is like a toothpick. I’ve lost so much muscle mass and conditioning, it’s practically useless. I have dreams about it turning black and falling off. I also get agonising pain in my hip. I was at work last week and couldn’t even get my leg into the van without using my arms to lift it up, pushing through the agonising pain in my hip, to get it into the footwell and shuffle it along so I could hoist the rest of myself into the seat. I feel utterly ruined. I feel worse than I did before I was diagnosed. I constantly feel like I’m flaring, like the best my medication ever does is try to hold a door closed but there’s an unrelenting enemy on the other side of, constantly probing for weakness. I keep being told there’s loads of things to try, but the length of time of takes to swap over between medicines means multiple instances of having my legs feel like they’re broken. I won’t say I’m beginning to give in to despair, but I am pretty un excited about my future. I’ve been taking meds for three years and I’m worse than ever. That’s three years of not being able to move faster than a walk, not being able to have a kick about with my sons or a bike ride or a nice walk with my partner. It’s not even a walk, it’s more like a zombie shuffle. I need crutches to get from bed to the toilet taking tiny baby steps cos I can’t bend my ankles or put any weight through them. I get hardly any sleep, and when I do I wake in the night in sheets of sweat, in agony until I can jam the latest handful of tablets down my throat and wait for the mild relief it provides.
Man, I really hope this secukinumab works.
I’m not entirely sure what’s compelling me to write this, either. I tend to not talk about my condition anymore cos what’s the point? It’s the only thing that’s happening to me, and it’s all just incredibly boring. I’m boring. All I have to talk about is how much pain I’m in and I’m not so selfish as to think anyone should have to listen to me bore on about how sore my little ankles be. Perhaps the anonymity of this forum helps, I can just get it off my chest and in doing so somehow experience some kind of catharsis. Maybe, maybe not. All I know is that it’s all starting to get rather boring.
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Sorry I had to split the original post cos it was so long! Here’s a photo of my knee for a laugh
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Oh my goodness @cardyfreak
What a terrible time you've had. I am so so upset for you and totally sympathise.
I know that pain and that fear. It's dreadful and I am lucky this only happened to me a few times before i got diagnosed and my treatment has to a large extent kept things under control for me since my diagnosis.
That was 14 years ago and still this day i could cry about the first time I woke up 'stuck' an din so much pain I couldn't stand it went right through every bone. I will never forget it I couldn't even tolerate a sheet on my body it hurt so much. You must have the highest ever pain threshold to have gone on so long without treatment.
I rang the helplines when I first joined this forum and they were just lovely so very very supportive and waited while I bawled my eyes out (lower pain threshold here😳) I think their number is here
but the best thing I ever did was to talk about it and here was where I felt most able to. At home the family were upset, work didn't care (obviously) and friends were probably bored with it.
So I hope you'll decide to hang about and talk to us while you start your new meds secukinumab and I really really hope this is the one for you huge (((())))
Toni x
Ps by the way you write so well your descriptions are painful to read but also have humour in them. I just wanted to say that.
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I do feel for you. You have had a horrendously rough ride for far too long and have tried so hard to just get on with things. You have been let down more than once by your medics and yet you do retain your sense if humour which is fantastic.
I'd guess that the difficulties over meds working well, and continuing to do so, is because the disease has managed to get such a hold. It should never have happened but it has done and the only way is forwards.
Mine is RA but I've had knees like that. I think the most fluid they took off was one and a half giant syringes. I've since had both replaced. My ankles, in the end, fused themselves and stopped hurting and swelling.
I was at my worst when my sons were young. Best ever advice was given by a childless friend. "As long as they have plenty of love and affection they'll be fine." They did. They were. And now both are good Dads themselves.
Please keep chatting to us if it helps at all. I thoroughly endorse @frogmorton 's last sentence.
KBO, as we say in this household.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright2 -
@stickywicket when I finally got my cartilage operated on last year they drained quite a bit of fluid out of the joint, 300 or 400ml or something. Yummy. It came straight back of course, but it was fun while it lasted.
I feel like I could do with a good session on the rack. I’m sure most people would fear the rack in medieval times, but I think I’d welcome it. Some of the deep pains I get in my ankles or hip or spine feel like if I was just being stretched out I’d feel a series of cracks and pops and I’d be back in business!
Hmmm… I wonder if I can get referred to a torture chamber by a physiotherapist?
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There are many who regard physio departments as torture chambers and physiotherapists as sadists😉. However, I don't know where I'd be without my regular exercises and I have learnt that the less I feel like doing them the better I'll feel after. Funny old world. Funny old disease.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Ouch @cardyfreak
I tried clicking my big toes once in the middle of a flare (I used to click them pre arthritis ) it was agony!!!!!!!! Oh you wouldn't have thought it could get worse, but it did!
gente exercise though like Sticky said that is usually worth it.
Take care
Toni x
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I cannot imagine going through that for 4-5 years, your stoicism is quite remarkable. I hope when you start your latest biologic it works well for you.
My dad, in later life, had need of physio and he referred to the staff as physioterrorists !
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@cardyfreak I agree with @stickywicket and @frogmorton , you have the patience of a saint and the pain threshold of a warrior. It’s remarkable that you have managed to stay sane and written so eloquently, a veritable Frida Kahlo.
I am so sorry methotrexate did not work for you. I assume your Rheumatologist explained to you how it works, by interfering with the replication of attacking T-eff cells, knocking off their furious multiplication rate. Their attacks peter out when they die 3 months later and few new reinforcements have arrived to replace the exhausted & dead rogue T cells that arrive misinformed and attack harmless tissues because they were ill trained and misinformed by the trainers, (dendritic cells).
That is why methotrexate unlike steroids shows no immediate benefits. You need 3months of it to confirm it won’t work. However if your immune system has figured out how to circumvent or disable methotrexate it will not work. That said, I had heard it does not work with A/S anyway, but i could be wrong.
I hope your rheumy is looking for solutions for you and has not given up on you.
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I’ve been taking methotrexate for about two years. My blood work often comes back with very low swelling indicators but my body says otherwise. The swelling in my ankles and knee is unmistakable, the nurses often write down their observations in the notes of my appointments; knee like a football, warmth of joints evident through clothing, etc. So whether it’s efficacy is too subtle for me to notice, I’m still left writhing in pain hoping for something less discrete in its action.
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So frustrating when bloods don't reflect visual/actual physical signs or pain levels@cardyfreak
Still on we go....
When will you be starting your secukinumab?
and just out of interest have you never had oral steroids in between changes of meds or while waiting for oen to start working? I know they are not ideal in the long term, but short term many of us have found them a very useful 'holding' treatment almost.
Toni x
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I get a steroid injection during flare ups. They usually last about four weeks but the last one only lasted two. I had another steroid on Monday and it’s relived my symptoms almost completely now. I usually get given kenallog but because it didn’t last very long last time they’ve given me a different one with a higher dose, fingers crossed it lasts a little longer this time.
I could barely walk at the hospital, truth be told I should have been being wheelchaired around. I couldn’t even manage the gentle inclines in the corridors, I was having to take tiny sideways scuttling steps like a crab. It was a pretty pathetic sight to be honest and when I got back into my partners car after the injection I’m not ashamed to say that I started sobbing. I don’t know if it was relief knowing the agony would soon be lifted, dread knowing the cycle was about to restart, pity at how pathetic the image I had been reduced to was, likely it was a combination of all three.
I haven’t started the loading doses yet, there seems to have been much confusion between the rheumatology department and the hospital pharmacy. I should have had it weeks ago so I’ve phoned up a bunch of times and been told it was going to pharmacy, or had been lost by pharmacy, or a new script had been sent only to discover it hadn’t. I’m assured it’s there now and should be ready in a few days.
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Be proud of what you achieved at the hospital. It wasn't 'pathetic': it was heroic. In the Disabled Olympics it would have been lauded. In daily arthritic life it merely passes unseen and unrecognised.
I hope things will improve soon.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright1 -
Hi @cardyfreak
Can your GP/rheumatologist not give you some heavy painkillers? Last year when I was in a similar state I was eventually prescribed dihydrocodeine(DF118). I was prescribed it and paracetamol and the combination took the edge off the pain. It's a pretty potent opioid so does come with downsides but at least it helped me.
I hope your new biologic kicks in quickly.
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Been a while so thought I’d engage in some threadromancy and update what’s been happening in the intervening years.
First, a photo to show my progress-
Yes, I’ve made none 😂
I’ve been through a few medications now. The secukinumab didn’t work, I was moved onto Eternecept (a JAK inhibitor I believe), that also didn’t work, and I am currently on Guselkumab which, after the initial loading period and commencement of the regular two-monthly injection regime, is producing the effects illustrated above; that is to say, I don’t think it’s quite hitting the mark.
I had a lovely 150ml of fluid drained from the knee in November, along with an intra-joint steroid injection that lasted for a month. The intra-muscular injections last betwee five and seven days now. The above picture is seven days after my recent steroid injection a fortnight ago, a triple dose of depomedrone, and it following the previous steroid injection administered a month before that.
Still searching for the right med, still clinging on to the hope I’ll get there one day, but I feel peacefully resigned to the realities of the pains and agonies I’ll be suffering for the foreseeable so that’s something at least 👍🏻 yayyyy!
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sorry, it was upadicitinib, not eternacept, I’ve had that one and moved on 😂
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Have been prescribed Bimzelx/bimekizumab and am being considered for yttrium synovectomy in my knee and ankles. Actually quite excited at the thought of the synoventomy, I think that’s got the best chance of giving me tangible improvements to my quality of life, which has reduced considerably.
I’m on a redeployment list at work now too, my physical limitations are now too great for me to continue in my relatively physical role as a gas engineer. Crawling around on floors with a knee like mine can become quite tedious in a relatively short time, surprisingly.
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And also @frogmorton I was prescribed oral steroids between meds this time, as well as an injection into my knee. Three weeks later and my knee is huge again, the oral steroids seemed great at first but as the dose tapered down they quickly lost their efficacy. Oh well, I’m seriously buzzing about this synovectomy talk though. I’m well up for going nuclear on the traitorous body parts that are causing this pain and swelling, rather than singing them a lullaby with these injections 😂
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@cardyfreak definitely not boring. I wonder if the synovectomy in one joint would allow the other joints to settle down. Just a thought.
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Hi cardyfreak oral steroids are a fantastic wonderful temporary fix unfortunately they are such a double edge sword that we can't use them long term😕
Good luck with the synovectomy let us know how it goes everything crossed for you
Toni x
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