So most of you know that I finally cottoned on to needing to treat this PsA. So I dutifully took injectable mxt this time in late May. And in the second week I was simply unable to function at all coherently and had to take the week off work.
So I diligently reported that, was told mxt didn’t like me at all and was started on sulfasalazine. This week I’m on the optimum dose and have had no problems throughout the 4 week loading process. On 14 June I ran up my stairs in a panic looking for my cat and said ‘shit’ I think I’ve pulled something in my right thigh. By the 20 June I was taken to hospital by ambulance as I simply couldn’t walk anymore. It turned out I’d fractured my pelvis, probably due to my steroid intake over the past 18 months, intermittently but more often than not. And of course I had walked on this fracture for nearly 2 weeks too. So I’m given crutches and told to walk on them and it would take some time to heal.
Obviously I came off steroids as fast as they recommend. And lo and behold I’m now crippled with PsA pain in my left hip, buttock and down my hamstring. It had done this before last year and even on max dose steroids it took almost 3 months to allow me to cope at all coherently. And it’s showing erosions, as of this March. So now I’m back to not being able to walk yet again. My fracture is healing as my right leg is doing better but my left leg is utterly horribly painful. And both ankles are swelling horribly as it’s hot and humid here and I’m not able to move much.
And I’m just not coping anymore at all. I spend far too much of everyday in tears and I just don’t want to have to live like this anymore. My GP’s surgery is utterly hopeless but I do get to go back to Dr Ellie in Bath next Wednesday. But whatever Bath decides, none of it works fast and I’m just so done being in this much pain and this disabled. So utterly done and worn out with it all. I’d be taking my pet to the vet to be put down if it was suffering like I am now. So what’s the point?
I’m not much good on the emotional stuff BUT this stuff I do Know (or did.) The fact is if the injury is on the right, the left is going to go to hell _PsA aside. Unless its treated. Telling you to use crutches is akin to malpractice unless you are stabilized (external pelvic compression belt often called a Geneva belt.) Now of course I haven’t seen your x-rays and could be all wet. But for gosh sakes you need to be on a Roho cushion with even a stable fracture. Can you you get to an actual ortho? Even crutches need to be precisley fit. This was my favorite style as it takes all the stress off the opposite side: As I used to tell my students you need to be extra careful with the Bum as its cracked already.
the point is that you can get relief. coming off prednisone is a HORRIBLE (been there, done that). but if it is masking what’s going on then you need to be off it. and while MTX wasn’t your pal, sulfa is. And your visit to Bath my suggest other treatments still. So, the point (I’m getting to it) is YOU. You are still only at the beginning of this. You’re BARELY treated.
As the world’s least patient person I find it hard to give this advice, but please try to wait. It takes a long time. It has been over a year for me that I’ve had an effective treatment protocol. It’s no one’s fault. It just has been like that. And at times I’ve been super down and at times I’ve been super accepting. The point is that you are NOT in a fixed state. Your life, your emotions, your illness and how you relate to it are all fluid states. Today you’re mad and sad and in pain. And in a month you won’t feel the same way. Hell, tomorrow it might cool down, the humidity drop and you might eat an ice cream and forget for, like, 5 minutes that things are bad.
so, take all this in the spirit is is meant. Yes. It sucks. I hear you. Just have faith in all of us who (well except for the broken pelvis thing) have been where you are currently limping.
The point is, nothing ever stays the same, and this won’t either. It’s not remotely fun, pleasant, or even acceptable, but it will pass. Unlike my poor old lovely Labrador, you can follow basic instructions to rest, do PT, take your meds, and more
My heart goes out to you @Poo_therapy!!! I can only imagine where you are at right now, and I would say it is completely understandable given all you are dealing with.
Wednesday must feel like such a long way off… are you able to see your GP and get something for pain relief, or bracing, or something, in the meantime?
I truely do understand “hitting that wall” and wish I had some magic words that would take it all away for you!!!
It is sooo incredibly frustrating that things take to so long to improve… the best we can do is hang on to the knowledge that it can and will improve.
Biologics poo, biologics. I’m singing the same ol’ song but honestly, they are so worth a shot and you’re on course if you want to give them a go. Are you planning to ask Dr E about this option?
Ah, Poo. You will improve. It’s early days in your treatment cycle, you’ve already struck two DMARDs off the list, AND you have evidence of joint damage. The existing joint damage is an important piece of evidence. Will you take my advice? When you are there next week, push Dr. Ellie about how soon she might be able to convince the NHS that you need, really need, something more effective than these meds seem to be for you.
Biologics are not a miracle cure, but they did give me my life back when I was in a similar state to yours: in terrible pain (severe hip damage, needing THR), depressed, and exhausted 24/7. I started the bio, and within a few weeks I started feeling fleeting flutters of energy. That kept me going psychologically for a while. And after that, it was slow but steady reclamation of the lost bits and pieces of my life.
We put animals down when there is no prospect of anything but more pain. You have every reason to think that the tide can turn for you, just as it has for so many of us.
Hang in there. And hugs from me too. My, we are spreading a lot of hugs today!
I was assessed by an orthopaedic consultant when I first went to hospital in the ambulance. The fracture is small right where my right leg joins my groin. And I have been back to see the consultant on 13 July. And he said the more I walk with the crutches the better it would be as in some weightbearing is good. I go back to see him again on 13 August. I do like the idea of this belt though for my left hip the one with PsA - would it help that?
Your doc is not wron, he proll just doesn’t CLEARLY understand the condition of your right hip and that it needs some help compensating for the left…
Remember ANY pelvic fracture is the most painful of all. There is not a “bone” that take more stress and weight PERIOD. The fact you are able to motate as much as you do is amazing doing so with flaring PsA is miraculous. You have my respect and more.
Thank you. Reading that just made me cry actually. I don’t think I’ve ever faced anything more challenging than this frankly. Not now that the left hip/leg is screaming with PsA pain and the right one although improving is a long way from being coherent yet. I literally walk presently like someone with cerebral palsy. Any orthop in my experience and I’ve worked with so many of them, just don’t ‘get’ inflammatory arthritis and diss rheumatologists anyway too. So my orthopod guy in the hospital couldn’t give a flying ‘eff’ about my PsA. And since English isn’t his first language he couldn’t understand most of what I said anyhow. And wasn’t interested in trying to either. That’s why I’m so done with this. However I just need to keep going till I get to Bath on Wednesday. I am taking 100mg of Tramadol twice a day which barely touches the pain levels on either leg.
Throughout all this pain from 9 June to 20 June when I finally got to the hospital by ambulance and indeed since then, my GP’s surgery simply won’t allow me to see them or think it’s worthwhile examining me. I feel so adrift of coherent medical care presently, it also makes me cry and so feel so done with this.
Does sulfasalazine give you a rash and make your ankles swell horribly? Both my ankles are hugely swollen and barely fit into crocs any more. My left (so not from the side my pelvis is fractured) worse than my right. Although now from PsA that’s certainly the more painful leg by a long shot. And my left lower leg has a huge red/brown rash on it which isn’t sore or annoying but makes me think (probably stupidly) that I’ve got some serious infection going on.
I truly am so overwhelmed with it all, I fear I’ve lost the ability to critically analyse any of the stuff I look up. So any help you can give will be so gratefully received.
What a difficult place you are in right now! Although I can understand that the lack of mobility in your hips and legs might have some effect on swelling, it may be something else too, and although I can’t suggest what it might be, or if it’s linked to the rash, my instinct is to get that checked straight away.
Have you told your GPs office about the swelling? if they are ignoring it maybe someone from the UK can help with a suggestion?
I really feel for you right now. Gentle hugs (upper body only!)
Aww Poo… I wish I had someway to help you right now!!
I agree with Jen75, phone the GP’s office, tell them about the swelling and the rash, also perhaps you could ask if it is possible to increase the tramadol a little for a few days (ONLY do that on their advice though).
If that gets nowhere, are you able to phone the Bath clinic? They might have some ideas to help until your appointment on Wednesday…
Saw my rheumatologist yesterday and she was the voice of reason and calmness. Wasn’t worried about anything other than feeling so sorry for me given the rotten luck of fracturing my pelvis. Feels confident about waiting to see if the sulfasalazine does anything and quietly urged me to have more patience. Not something I have much of either, so I need lots of urging. The better news is that the fractured pelvis is now healing and I’m managing to walk a little bit without crutches which does feel better. Also getting out of my house and staying away for the night helped loads even if I had to be pushed around Bath in a wheelchair by Alan given the distances involved. It felt so good to be away and stimulated by something different. So onward…
