Unmanageable pain and fatigue.

Starburst

Like the title says; my pain is not well managed and my fatigue is overwhelming. Fatigue is probably due to low vitamin D and low haemoglobin. I'm having more bloods, they suspect a stomach ulcer. :roll: To make matters worse, my mobility has deteriorated again. I suspect it's because I haven't been to the gym for 2 months as I keep getting out of breath. I'm being sent for lung function tests in case it's anything nasty, which is highly unlikely, but being breathless and weak is making me miserable.

Sorry for the complaining post and thank you in advance for anyone who has read. I am just beside myself and feeling like nobody in the 'real world' understands at all.

stickywicket

(((()))) Oh Sophie! You are beseiged on so many fronts right now and each on its own would be enough to lay a lesser person low. You are not 'complaining', you are trusting us to understand and care and that's a great compliment. To say I hope things will be easier soon is grossly inadequate but I do. Have some more (((())))

Slosh

Sounds as though you are having a really tough time at the moment and the thought of more investigations or tests is the last thing you need. I really hope that you start to feel more like yourself soon but in the meantime try not to overdo things and be gentle with yourself. Sending hugs (((())))

GraceB

Hi,

Sorry to hear that life has been unkind enough to send yet more dooh-dah your way. You really don't deserve this.

I hope that the tests are done quickly and you get answers as soon as is possible.

You are not complaining so please, please, don't think that you are. Here on the forum you offer support and advise to others on a regular basis. Now and again we all need to ask for some of that support to come back to us and at least here you know that the members know exactly what you are struggling with.

Be kind to yourself.

Take care,
GraceB

juliep123

I'm really sorry to hear that you are so unwell at the moment. I have severe anaemia and one of the worst symptoms is the breathlessness-its horrible. Hopefully when you get the anaemia sorted you will feel better .
I don't think for a minute that you are complaining (and even if you were you're entitled too!) . I really hope you get tests sorted out soon.
Take care and I will keep my fingers crossed that you feel better very soon
Julie xx

dreamdaisy

Sophie, you believe in living life to the full (full-time employment, holidays abroad, up for an award etc.) and you achieve it so it's no wonder that your RA is fighting back in the only way it knows how by doing this.



Some of us are riding bigger arthritis rollercoasters than others, as far as I am concerned yours is one of the biggest around. You've done the highs so here comes another low because this is how it goes. You will ride it out and emerge on the upward trajectory because that is what you do. We'll be there, pushing you along as best we can (bearing in mind it's literally an uphill struggle ). DD

mig

I echo all that the others say and i am sending some big squeezey hugs (((()))) Mig

stickywicket

Shove over, mig. I want to give her some more too (((())))

dibdab

Just these ((((((((( ))))))))). I really hope the tests come through quickly and answers are found to set you back on your feet. Keep sharing, we'll keep listening and caring. Sometimes life is the pits......but at the other side of a pit is a slope back into the sunlight, try and keep your eyes fixed on the sunny side, you are so courageous and determined you'll get there. More of these to be going on with ((((((((( ))))))))). xxx

theresak

Sorry life is throwing some tough things at you at present - I hope tests are done quickly for you.

Lots of positive vibes from me to you.

Take care. x

villier

Awww hang in there Sophie we are all behind you, you are not moaning only expressing how you are feeling and we are listening. A wee top up (((((())))))xxx

Starburst

Thank you for your kindness. I'm not ashamed to admit that I wiped away a tear or two and I don't really 'do' crying. I always worry that I'm being a moaning minnie but your kind responses always make me glad I've posted. I am very lucky to be in the company of such wonderful people who understand without me having to say too much.

I've got some appointments booked; blood test, chest x-ray, physio, rheum and waiting on a few more. I'm trying to refocus my thinking and not look upon them as a burden that interrupt my working day :roll: but a means to an end. Rheum nurse reassured me that an ulcer was unlikely and that the anaemia is probably why I'm tearful and exhausted. That's making me feel a bit better. I'm still not myself but that's ok. It is what it is and I'm just not 100% at the moment.

mig

ouch Sticky watch the elbows.

More hugs coming. Mig

stickywicket

You are never, ever a moaning Minnie. Indeed, you are a constant source of inspiration, as to what is achievable with this disease, combined with kindness, empathy and very useful, trustworthy information.

The appointments are, unfortunately, necessary 'burdens' which will, ultimately, make your working day run more smoothly.

The anaemia might well be why you're tearful and exhausted but, with all that going on, who needs a specific reason? Everything is in flux and, although you know that rationally it's almost certainly just a common or garden arthritic blip, what the head says and what the emotions feel can be utterly at odds at such times.

I disagree with your final two sentences. I think you are very much yourself – strong, resilient, being sensible even though it's hard to be sensible, wobbling but determined as ever to stay upright and not too proud to ask for help. Yup, that's our Sophie.

mig wrote:

ouch Sticky watch the elbows.

Ah, if only I could, mig

Slosh

Make sure you keep us posted with the outcomes of all the appointments. In the meantime give your self a treat or several. You deserve them. And, please, don't overdo things.

dreamdaisy

I reckon that all auto-immmune practitioners know that the previous worst wasn't as bad as the new worst, but adjusting to the new worst is always a challenge. This is one challenge that you have met, will meet soon and will meet again because you have a very strong inner Weeble, but every Weeble needs a break because weebling is tiring. ((( ))) DD

Slosh

Just wanted to check in and see how you are today.

daffy2

So sorry that you're not so good Sophie. I think your comment about seeing the tests etc as a means to an end is a good idea, but I agree that being anaemic does make everything that much harder to deal with - including trying to put a positive spin on unwelcome interruptions to your day! Here's hoping you get some answers, and more importantly ways to sort the problems out.

juliep123

Just wondering how you are today xx I hope things have improved , even just a little. Take care
Julie

Sarahd1609

Sophie,
I hope you get the help you need soon. The constant fatigue is draining enough as it is, but when that then makes pain unbearable it can all become too much. I've had to be signed off work as I tried to keep going but couldn't. I kept telling myself if I could just get some more sleep I could deal with the pain, but in reality I need to deal with the pain. Sleep is something that seems to have been a cycle in my life. I've gone from sleeping (literally as a baby) to not sleeping as a party goer, to sleeping pre child, not sleeping post child ( thankfully for only 2 weeks)back to sleeping pre arthritis, then sleep, what's sleep?since being diagnosed.

Does your local NHS operate a pain clinic that can run alongside rheumatology? Mine do, tho I'm yet to be referred. I have however found that a tens machine does supply a little relief as I have PsA that affects my lower joints and Ankylosing Spondylitis in my lumbar spine. It's not a lot but anything helps.

One thing I have learnt from others on this site is listen to your body and that there is no single cure to fix the conditions we have, but sometimes talking with the wonderful friendly people and Admin on here can sometimes be that ray of hope when it can otherwise feel darkest of all.

Keep your chin up and if ever you need to talk, you'll always find a helpful ear here xx

LignumVitae

Oh Sohpie. I'm sorry I'm late in getting on this thread but I just wanted to send a deluge of (((((()))))) your way. It seems terribly unfair that you are battling 'stuff' again. We all know it is a neverending carousel ride but even so, we hope for a break once in a while and you don't seem to be getting them which is unfair. Cry, scream, be tearful and the rest. You work hard, you battle hard, you are allowed to get emotional when the chips are yet again down. Do all you can for the evil fatigue and forget the gym for now, it will happen again one day and there is no rush getting to that day. As is ever you, your amazing way of seeing things and staying focussed on the positive and the route forward is a shining example to us all. Even when you feel at your worst remember you are a very amazing young lady.

dreamdaisy

I know we're not that far on since your original post but I am wondering how things are going now? I hope the sun and warmth is helping things to ease. DD

Starburst

Thank you for checking in on me and for the additional kind replies. I had another teary episode reading them. I'm quite emotional at the moment. :shock: I went to bed last night at 9 pm which was lovely. Pain meant I wasn't asleep for an hour or so but I was able to switch off my mind a bit more than usual. I'm anticipating a weekend of doing absolutely nothing and I hope that will help.

Slosh

Glad to hear your weekend plans. Hope it does the trick.

dreamdaisy

Hello, I hope you were able to achieve an idle weekend and that you are feeling better in yourself. ((( ))) DD

stickywicket

I hope the weekend helped. I've been thinking of you. ((()))