Everything an effort

theresak

Hello All,

I feel I should apologise for not posting much at the moment - I seem to be in a bit of a `dip.` I`ve been told I will probably have to stop humira after 8 years, as it`s no longer doing its job. My CRP has rocketed, and I`m to have more bloods taken in two weeks, to see if there`s any change. Apart from the `normal` RA aches & pains, I just feel completely drained of energy right now.

We had a family wedding to attend last Saturday, which was lovely, but a very, very long day, + travelling, and of course, it has taken its toll. In short, my normally stiff upper lip is not in evidence, and crushing fatigue seems to have taken its place.

I hate being a moaning Minnie, and will post more often when I find some energy.

stickywicket

You will post as and when it is convenient in terms of time, pain, fatigue and everything else and, believe, me, you'll have to work much, much harder at being a moaning Minnie. I'd give that 1/10

Weddings are draining affairs for the fittest and we do not fall into that category. I attended one recently and...... Lovely people, just a couple of hours away, hotel room for the night and me not too bad right now. But, factor in the extra walking, sitting on uncomfortable chairs with legs and feet at uncomfortable angles and the sheer effort of turning constantly to talk and listen. Exhausting :roll:

If the humira is not working the fatigue is inevitable. As is the nagging worry over what next...and will it work....without side-effects? I hope all this can be resolved quickly, painlessly and satisfactorily.

Please keep us updated (briefly, not so that it becomes yet another exhausting chore to be endured) and let us try to support you as well as you so regularly support others.

(At least the cricketers are doing their best to keep us happy. You have the perfect excuse for watching the final Test and the ODIs )

Slosh

So sorry to hear things are so tough for you at the moment. I do hope that they have an new plan for you.

((((()))))

barbara12

Theresa I dont think I have ever heard you moan,and I always say its good to talk about things..I am so sorry the humira isn't working for you, and after all that time..I am not clued up on these meds ..will they be able to offer something else in its place :?: ...I do hope things improve for the wedding...x

mig

I second what Sticky has said and I'm so sorry the humira is not doing it any more hope they can sort you out soon,hugs coming your way. Mig

daffy2

Sorry to hear you're at a low ebb Theresa, and I'm not surprised you found the wedding hard work. Fatigue on top of 'normal' fatigue is a real bummer, especially if it comes with worries over changes to drugs. I do hope you are able to get some solutions before too long.

dreamdaisy

Oh dear, I empathise because I know exactly how that feels. These meds have a best-before date as it were, and when they dip we are left wondering what next whilst struggling with everything getting more difficult. It ain't fun and you are not alone, we've all been there and had that.

People without our troubles don't grasp how hard it can be to socialise for hours at a time and the toll it can take. Add that to a failing med and no wonder you are feeling as you are. I reckon it's time for you to recline gracefully upon the chaise longue, watching grotty telly, reading rubbish books and supping endless cuppas, the latter preferably supplied by others. Be kind to yourself, you need it. I hope things begin to improve soon. DD

stickywicket

Assuming all is still a huge effort....((())) Go easy on yourself, Tezz.

theresak

Thank you, Sticky. Things are more or less as they were, but with the addition of rib and shoulder pain, so I'm having to resort to Tramadol. I'm beginning to get angry with myself for giving in, but I'm too tired, stiff & achy to do much else.

I will take up DD's suggestion of lying about, in the hope things will improve sooner rather than later.

There you are - getting better at the moaning, am I not? I'm not much fun to be with right now.

Slosh

You're not giving in, just being sensible and rather than spend/waste valuable energy on fighting with your body you are taking the time to allow your body some R and R time.

Hope it works

stickywicket

You are not 'giving in', Tezz, merely taking the only available option. Slosh is absolutely right. Give your body a break and, if you need tramadol then take tramadol.

Unfortunately the next blood test can't be rushed as I guess a reasonable gap must be left and, presumably, nothing can be done on the meds front until that's sorted. You are in a hiatus. It's frustrating and annoying but don't try to convince yourself you can carry on as normal 'with a bit more effort' because you can't. The chaise longue has your name on it for a while longer, I'm afraid Don't fight it.

dreamdaisy

Giving in? Using pain relief is not giving in, it's using a sensible approach to a ghastly situation. Pain relief has a role to play, we all know that it doesn't truly cut the mustard but it is there for a reason. I am not sure why people view using pain relief as 'giving in' - is it giving in to take meth, humira, leflunomide etc? No, they are methods to control disease activity and pain relief is a method to control pain levels, maybe not as much as we would like but it's there to be used.

Living with constant pain is not easy and we all feel it differently: one person's twinge is another's severe agony but I reckon it's a good thing that you have the tramadol option open to you, having another level of relief is comforting. I hope it dulls things sufficiently so that you are more comfortable in yourself, grotty telly, light reading and many cuppas may also help. There are times when we have to cede to the outrageous demands of our diseases and I suspect that this is one of those times for you.

I hope you feel better soon. DD

hileena111

Aww Tezz

I'm sorry you are so bad. It is not giving in to take meds and as for moaning.....never heard you moan before and even that post is jut a little whimper
I felt as if I was giving in when I hired a scooter for the first time {years ago} until my 20 something {at that time} daughter said "You aren't giving in mam, its a coping mechanism and lets you do what you otherwise couldn't".....out of the mouth of babes
You do whatever you need to do to help yourself during this and don't feel guilty
Love
Hileena

stickywicket

((()))

theresak

Thanks - I booked a telephone appointment with my GP this morning, as I need a new prescription of Tramadol. He's coming down to see me before afternoon surgery.

stickywicket

Good. I like your GP.

When my kids were young and my original knees seriously old, my GP lived just up the road and, when one of us was ill, would sometimes pop in on his way home for lunch or back from it.

I hope yours can help.

dreamdaisy

Hello, how's things now? Did he pop in and was he able to offer some further help? DD

theresak

I only actually rang as he's no longer allowed to put Tramadol on my repeat script, but he has a way of dragging facts out of you & said he thought it would be best to call.

While he thinks I'm probably in a flare he thinks it's not prudent to assume everything is down to RA & he could see I was beyond tired. He wanted a full set of bloods, as he thinks I could be low on iron, and he wasn't prepared to wait another week until my blood test is due. He asked the Community Nurse to call to do my bloods, which she did.

So having been told to get plenty of rest, and with my Tramadol replenished, I'm keeping the chaise-longue warm.

Thank you for thinking of me.

dreamdaisy

I am pleased he kept his word, you may have a treasure there!

So, the dreaded F word has been spoken; that is one explanation because they happen despite the meds, auto-immune arthritis being a determined beast. Low iron is another good reason for the lethargy, that mixed with a flare is a nasty combination. Hopefully the bloods will show what's up and steps can then be taken. In the meantime listen to your body and do what it needs: sometimes we have to withdraw from life for a while until things are sorted back to the usual norm. I wish you well. DD

stickywicket

Good. That's how it has to be for a while but I admire your doc's speed and efficiency. I prescribe plenty of cuppas, a newspaper with crossword and sudoku and a good book. I hope Mr T's a good cook.

theresak

Well, I saw my GP for blood results yesterday. My CRP/ESR continue to climb, which is not good news with regards to the efficacy of my humira at present.

My iron levels have, naturally, gone in the opposite direction, far too low, which hopefully goes some way to explaining the crushing fatigue.

I have lots of lovely (not ) iron tablets to take, and a further blood test in the not-too-distant-future. I hope the iron will have the desired effect and perk me up. I think the flare has abated somewhat, though when stiffness sets in it seems to take forever to loosen up, and my neck makes a rather alarming clunking noise along with my jaw.


It`s not nice, RA, is it?


Thanks for your support.

By the way Sticky, Mr. T is indeed a very good cook - not great at clearing up afterwards, but definitely a good cook.

stickywicket

theresak wrote:

By the way Sticky, Mr. T is indeed a very good cook - not great at clearing up afterwards, but definitely a good cook.

Mr SW usually cooks on Thursdays so Fridays are kitchen de-greasing days

It sounds a bit like 'good news / bad news'. As ever, it seems as if you can only take one day and one step at a time. These things won't be hurried. The potential humira failure will also be worrying on the 'what next' front and worry, as we know, is also a no-no.

So your neck has joined the timpani section :roll: Great

daffy2

While you're trying to up your iron levels you may want to rethink when you have your cuppas if they are part of your daily routine? Tea can block iron absorption, so avoiding tea at or close to meals may help. Vitamin C can help uptake, and if nothing else upping the fruit and veg intake might help to offset the well-known downside of iron supplements!
I do hope you start to feel a bit better soon, it's difficult coping with things going wrong on several fronts.

theresak

Thanks for that, Daffy - right now I'll do anything to feel better!

stickywicket

I could be wrong about this - I often am :roll: - but, having had more than enough iron problems, resulting in far too many cameras, and being an inveterate tea drinker, I've gone into this a bit. From what I can make out, tea only prevents the absorption of non-heme iron ie that from non-meat sources. So it's probably fine to wash a meat meal down with it. Also, I think the main culprit is the tannins so a cup of Redbush (Rooibos) tea should be relatively OK any other time as it's low in tannins.

How are things now, Tezz?

theresak

Things are slightly better on the pain front, thanks, Sticky, but it's the awful fatigue which is getting me down. We have our grandsons staying until Wednesday - I couldn't disappoint them by not having them here. Clearly their parents have had a word, as they are falling over themselves in their efforts to be kind. Bless them, the 10 year old made me a cup of tea at 7.30 this morning! Nick currently has them at the park, playing cricket. They're normally good while they're here, and once they go to bed, I go too.

My older son has volunteered to take them cycling in Hamsterley Forest tomorrow. If nothing else, having the boys has cheered me up a bit - last week was tough, and I just felt so down, which is not like me.

Onwards and upwards, as they say! At least Usain Bolt beat the druggies yesterday!