So my friends, some of you may know I usually get yearly flares.
This year its crept on slowly and sneakily. My main areas of pain are upper back (T6 - T10) area where a MRI a year or so ago showed bone marrow oedema, right shoulder, DIP joints on most fingers, and several toes, the pain is bearable but nagging. Other past pain areas are still making me aware of pain but its background pain. My P is alot worse, I’m wondering if my bowels are involved in some way as I’m suffering with constipation and also very loose stools, pain and bloating.
I’ve coped at work, not always well but got up, got there, done a busy shift, got home, but that’s about it…no social outings, no swimming, I’ve just not had the energy. Staffing has been crap since Christmas and that has taken a toll too.
I’ve run out of spoons utterly and completely, the fatigue has wiped me out.
My last Rheumatologist app. (in Jan) was a waste of time as only 1 doc was running 2 clinics (had to wait 1 1/2hours!) I’d never seen her before, although she was very nice she didn’t seem to have a good grasp of PsA and was flustered. Have another appointment soon as she wanted a quick follow up so I wasn’t too bothered.
I have been off sick from 27th Feb as I realised I wouldn’t be able to function at work ( got up, struggled to the car, couldn’t get my seat belt on or done up, burst in to floods of tears and couldn’t stop).
I feel a bit of a fraud, I’ve no major swellings, the pain has been a lot worse in the past, so why do I feel so bad? Why am I just so fatigued that I sometimes can’t speak coherently?
See my GP on 14th so hoping she can pull a rabbit out of the hat!
The fatigue really seems to be hitting you hard. It's difficult for many of us to believe the severity of the exhaustion we feel.
Some things that have been suggested to me by my rheumy when dealing with exhaustion are addressing sleep (pain management at night, doing a sleep study to see if there's an issue there on top of the PsA fatigue); vitamin levels (B6, B12, D) - deficiency in any of these is common in PsA and can cause major fatigue; balancing rest and exercise - not enough of either can be detrimental; thyroid hormone levels; and most importantly, PsA treatment. Some rheumys dismiss complaints of fatigue/exhaustion - I think simply because they can't imagine how life-altering and extreme our exhaustion can be.
Talking exhaustion with your GP may be beneficial. That was actually one of the facets of my care that got me my PsA diagnosis - and diagnosed my hypothyroidism and severe vitamin deficiencies.
I am so sorry Louise. I know how hard you have fought this. It may feel like defeat but it really isn't. The fatigue may have one this battle for now but you are winning the war. Fatigue is a sneaky adversary but you are wiser and stronger. Rest now and re-marshall your troops. You will prevail I know!
Oh Louise, I’m sorry, this is just awful for you. I know how hard you try to keep going, and I also know that when you say “I’m done”, it ain’t for nothing. Rest, my friend, and gather your strength. If winter comes, can spring be far behind?
I’m thinking the same as Sybil … time to push for a biologic? Weren’t you contemplating that a while back?
Thinking of you, and sending gentle hugs!
Thanks for the wise words guys :)nym, sleep is often an issue, sometimes sleep 10 hours straight, sometimes pain prevents a good night. I’ve adjusted my Amitriptyline dose with a hope that helps, and the doc I saw in Jan did mention TFT etc but didn’t carry the tests out, thinks she forgot but will mention it to gp.
Thanks Michael, I know its a long war lol but i get frustrated that the flares are so different each time, its not easy to try and explain it to myself let alone my boss.
Sybil, I’m what is now called an Associate Practitioner, its sort of the role of the old SENs (State Enrolled Nurse) we are mainly used in specialised areas like Dialysis so we run with fewer registered nurses and a Sister. We basically do the same role but they have more general nursing education and qualifications, whereas we are highly experienced and trained in our own areas. Also big bug bear; they’re registered and I’m not…something we are trying to change to protect the public but the gov. are slow to correct this. It is often physically and emotionally draining at work and maybe something I will have to look at in the future and make further adjustments. Thanks for the encouragement, often working within the NHS seems a thankless task especially with the media input.
Thanks Seenie, yep biologic meds were discussed a while back, then the consultant felt that it was best to hold off for the meantime. I intend to revisit the topic next month with a detailed diary of what I’ve been like.
When I told work I was going off, the phase that nearly came out of my mouth was “Thanks, but no thanks!!!” Luckily I didn’t but, I really just can’t do it at the moment x
Louise, the answere is right thete in front of them. Bone Marrow Edema. It needs to be treated. I'm sure your GP can pull a rabbit ot of the hat with a little arm twisting. Yes its time for the bio drugs. They call it edema, but its really suppresion. Of course your beat.
I had my own experience this week. my surgeon paid me a 20 buck bet in the ICU. I told hom there would be a bleeding problem... My entire chest and back is one big bruise. I'm goong into town in a bit to get topped off.
It'll work out for you, it always does. You do all the right things.....
Ooooo, so you’re a multi-coloured Lamb! Bless you! You take care of yourself.
Thanks for your advice 
Ugh, Louise. So sorry you feel worn out. Sleeplessness had become a bit of an issue for me lately so the doc prescribed me pills for the nights when I can't get to sleep (usually because of pain/discomfort). Some nights I only need half a pill to send me off to sleep. And the fact that the pills are there if I need them is often a good enough cure for sleeplessness.
I hope for your sake that they move you to biologics soon. I know it's a tough wait and a tough process for folks in the old country and I thank my lucky stars I moved to the US 20 years ago! I hope your next rheumatologist appointment goes better. Thinking of you. ~ Jane
Louise,
I am so sorry you have hit such a rough patch. And I understand your self doubt. It is easy to feel guilty, a fraud. But nothing could be further from the truth. I recently came to the realization that I had been struggling with this illness well before diagnosis. And I had an epiphany of sorts ... I took stock of all things I had accomplished despite the illness, of all the days I had pressed on and pushed through. I came to the realization, that we with PsA are real troopers. I heard a doctor explain that folks like us adapt to our situation and tend to under report our struggles because to us it becomes the norm. We tend to be very stoic out of necessity. You are anything BUT a fraud. I applaud your efforts to stay active and keep pushing forward. But it definitely sounds like you need to rest and take good care of yourself. As always, it appears you have already received good advice and support from lots of folks here. I just wanted to chime in to say you most certainly not a fraud.
I hope you are able to start a biologic and get some relief.
Thanks for the advice and support Jane and dandlyons…I feel pretty useless at the moment and I know that’s half of the problem…the “critical parent” inside me doesn’t cut me any slack so I’m going to punch her in the face and gag her!
So eventually saw a GP, was supposed to see mine on Friday but my appointment was cancelled, ended up seeing a new GP to the practice this morning and pleased to say she was lovely and very thorough…numerous tests to follow and a follow up appointment for beginning of April, much relieved
Hurray! it’s never a bad thing to meet a new practitioner and discover them to be thorough, and lovely too!
You’re so right Seenie, have been registered with my GP for over 20 years and we have a good working relationship, Its a largish practice and although I have seen most of the other GPs there, she is part of my support network and prefer to see her when I can…I was a bit stressy this morning as some of the issues were a bit personal, but have no worries about seeing this Dr again
I'm glad you found someone who will cast new eyes over your entire wellness plan! Glad she ordered some tests and follow-up!
Thanks Jane me too x
I am glad you got another GP on your case again. Fresh eyes can be very helpful. You are in my thoughts and prayers Louise <3
Thanks Sybil and Michael x