Secret worries, fears and moans

Mat48

Nothing I can do but offload a bit really. I'm on holiday North of Dundee now with teenage sons, dog and hubby. Just want to get off my chest how sore everything is again.

My right hand knuckles are constantly slightly puffy and swollen, my ankles ache and my right neck, shoulder down through elbow into wrist throbs 24/7. If I remain in one position for long I amost cry out with pain. Hubby does everything from cooking to dishes as can't lift my hand - he doesn't complain or criticise but none of them seem aware that I'm not just being lazy - they all just carry on as if it was normal. Is it normal? Is this just going to be my life fromnow onwards - pain, swelling which only I can see, deep heat and throbbing and all out pain that only I can feel?

I asked both my sons if they can see my swollen knucles and hand and they say "no mum why do you keep asking you're obsessed- we can't see?!!"- and laugh - hubby says he can see but he's just got used to their changing appearance. If they all say that what hope have I got of impressing a rheumy in a month's time? Is this it I wonder? It's like being in a private jail and no one else can see the bars.

Sorry I sound so self pitying just wanted to get off my chest.still got no wifi where I am so can't self edit with ease!
Mat.

CJHunter

Hi Mat, you offload as much as you need.
Families dont really know what to say in my opinion, they dont want to upset you and also want to say the right thing.
Think you should tell your g.p and rheumy how much this is effecting you, maybe write down or keep a pain log, mood log and fatigue log they both need to know. Tell them everything, they cant help if they dont know.
As soon as you get home, get on that phone and ask for app to be bought forward or at least to talk to them about pain.

Take care and if you need to talk we are here.
Clare xx

magenta

Hi Mat,

Sorry to hear you're in so much pain, and on holiday too.

I just wanted to say hi and to let you know you're not alone in the way you are feeling. You sound exactly like me these days. I'm always in pain, always knackered and sad to say, usually (not always ) grumpy.

I'm waiting for an appt. for a new rhuemy, think it's my 7th or 8th rheumy now! I've started taking pics of my joints when they've been really swollen cos usually when I have my appt. it's the ONLY time my joints look normal. I'm also doing a pain diary as I forget the pain and therefore how to describe it to docs.

I also keep saying that I must be having a flare but realised the other day that I'm actually never better? That make sense? I too think, 'is this it?'

I hope you get some rest whilst on holiday and let your family do everything. Your hubby sounds lovely. He (and your sons) know you're not lazy, they are dealing with your pain the way they think is best. Hope that makes sense too.

Take care,

Magenta x

roses1

Hi Mat,

You are in the right place for off loadin and you dont sound self pitying at all you need to get things off your chest!

This pain we suffer is invisible really to others, we dont like to keep reminding them, and they dont want to be reminded, it doesnt mean they dont understand some of it, we all try to carry on as normal as possible.
Kids react differently and will have a blase attitude, if its not a gaping open wound they wont see it. They dont mean what they say.

Rheumy, dont worry about them , when you have explained your pains and they have seen your swelling and done their tests they should come up with a plan to help ease some pains for you.
I know what you mean about the private jail, it does feel like that at times, thats why its good to get on here with us lot who know exactly what it is your feeling. dont be hard on yourself, try and enjoy as much of your holiday as you can.

take care
Rose x

skezier

Hi Mat,

i am with the others once the rumo's have decided what you have and you start getting some decent treatment it will get easier.

you hang in there and leaving you a hope the holiday goes well and leaving you a cyber ((( ))) Cris x

Mat48

Thanks all - as usual just talking about way I'm feeling makes me feel better able to carry on. Yes uncertainty is the biggest bummer really because I'm quite stoical by nature really. Find it so hard telling GP everything and rheumy too - neither very sympathetic men although my GP is quite kind and says he see uncertainty is hardest thing to deal with. Not a lot more he can do. He's prescribed me everything he can including oral steroids but only take if desperate.

He can't bring forward rheumy apt just because it's unhingeing me a bit - as I live in remote island location and stuck in that regard. Just have to grin and bear it. Swallowed all pain meds now hope I can move about better in morning. Swelling never shows much with me somehow - my joints are a bit dainty unlike the bulk of me - and they seem to only inflame subtly!?

Thanks again, nite sleep well all, Mat x
Ps Crikey this bed is small and hard!

petals

I know exactly how you feel. I had the most excruciating pain in my hands and wrists last year, It often brought me to tears and I was so afraid of the future because I imagined that tis was it for the rest of my life.

However, once I visited my rheumy for the first time, I realised here is a person who actually understands this pain and BELIEVES me that this is indeed real. She made an appointment for me to have my joints looked at under ultrasound scan and then the inflamation became visible and was photographed. I was so relieved that finally there was proof that I was not going mad and that this pain was there even if others could not see it.

On my second visit to Rheumy I was prescribed my Methotrexate which has worked wonders and now I live a much more normal life (except for the occasional flareups) I still worry about the future and what will happen if I become unable to tolerate the MTX
but at least I don't cry all the time like I did before I was properly diagnosed.

Moan all you like, you are entitled, this disease is cruel and can push us to the limit but hang in there, i'm sure you will feel better one you see your Rheumy and get the proper treatment you obviously need.

Petals

julie47

Morning mat48

Sorry that you are having so much pain at the moment and it is putting a dampener on your holiday. :sad:

I hope when you see the rhummy people that they are able to give you the meds that are going to bring this disease under control. When they give you the right meds you will start to feel better.
As for your sons not being able to see your swelling, they don't really know what they are looking for but don't worry, the rhummy does.

Take care
Juliepf x

mig

Hope the holiday goes as well as it can.Mig

traluvie

Just wanted to send you hugs(((((X))))) and hope you feel better soon.xx

Mat48

Thanks so much. I must try and have more faith in myself and in the expert I know. Last time I saw him he could see nothing and only had the bloods to go by. I had an x-ray of my hands and wrists back in June and that was normal - which I found very reassuring at the time but now with all the pain and stiffness I've had since I just worry that no one will believe me because they still look quite normal - except that GP noticed that right hand knuckles are swollen. But so is my wrist but he couldn't see it? And although my Inflam markers were raised and my rheum factor positive - recently the rheumy has written to GP saying anti-CCP negative and he thinks unlikely that I'll be diagnosed with anything or prescribed a DMARD this time. It's made me doubt myself and them somehow?

Always feels bit better in the morning for me though. I know others don't and I'm usually very stiff but it's all a bit more manageable than at night when it always feels unbearably painful. The sun is shining too and we are meeting a friend so I'm much better able to grin and bear it all now. You are all very kind and know exactly how all this pain can affect us when it's at it's worst. Thank-you! Mat x

sailrib

Sorry you are feeling like this. I know how hard it is.

My family couldn't see any change in my feet where my arthritis is. When I say I cant bend down or squat down, they think I am been lazy.

It is so much an illness that no one can see.

I hope things get easier for you. I would struggle to give you any advice though.

You can always moan on here though and people will listen.

x

Mat48 wrote:

Nothing I can do but offload a bit really. I'm on holiday North of Dundee now with teenage sons, dog and hubby. Just want to get off my chest how sore everything is again.

My right hand knuckles are constantly slightly puffy and swollen, my ankles ache and my right neck, shoulder down through elbow into wrist throbs 24/7. If I remain in one position for long I amost cry out with pain. Hubby does everything from cooking to dishes as can't lift my hand - he doesn't complain or criticise but none of them seem aware that I'm not just being lazy - they all just carry on as if it was normal. Is it normal? Is this just going to be my life fromnow onwards - pain, swelling which only I can see, deep heat and throbbing and all out pain that only I can feel?

I asked both my sons if they can see my swollen knucles and hand and they say "no mum why do you keep asking you're obsessed- we can't see?!!"- and laugh - hubby says he can see but he's just got used to their changing appearance. If they all say that what hope have I got of impressing a rheumy in a month's time? Is this it I wonder? It's like being in a private jail and no one else can see the bars.

Sorry I sound so self pitying just wanted to get off my chest.still got no wifi where I am so can't self edit with ease!
Mat.

Mat48

Oh such a relief to know that others get to this Hitchcock-like "it must all be in my head" point also - although sorry too that others have to endure this of course. Today both shoulders ache badly and psychologically that always makes me feel like I'm carrying the world on them :roll:

But it is really sunny here now and the trees look stunning with all the autumnal colours so I intend to carry it all with good grace at least. Famous last words but we can only try?

Mat48

Me again back in usual nightly pain fest. Still in hands, wrists and shoulders but soles of feet lumpy and swollen too when I walk. It's making me feel so low. Woke at 3am with insomnia and realised that while I was waiting in main lobby of hotel lodge for my laptop to upload upgrade last night I had 2 diet cokes from the bar - having not touched caffeine for months. No
Wonder I was buzzing?! But pain and stiffness in fingers was once again an issue - maybe made worse from wearing splints at night for my wrists which are horrendous?

Had a good weep when I found myself unable to get out of the bath last night and had to call hubby - very humiliating. Could hardly wipe after toilet and had to use wrong hand (sorry if too much info but this us my confessional!) then couldn't pull up jimjams or zip up boots this morning. Altogether I feel quality of life is deteriorating rapidly. I am seeing GP on Monday and will ask him if I can up the quantity of Amitriptyline and codeine to 20 and 30mgs respectively. Don't want to take steroids as don't want to put on weight, create further sleep probs or mask symptoms for when if I finally get to see rheumy 2nd time in end Nov. But equally I don't think I can cope with this level of pain for 5 more weeks. How long do flares last and if I take oral steroids what happens when I stop does any one know? GP said to go up and down in stages replacing ibuprofen with Prednisole and vice versa. If I can take them and come back off in time for symptoms to be present again for rheumy guess that might be the answer but would appreciate advice from those who have taken Prednisole orally before. And I realise everyone is different of course but always good to here experience of others before deciding.

Next query - do flares usually die down after a period if Arfer isnt being treated or will all this probably just keep escalating until I get diagnosis and right treatment? I know, once more, that this is a question for my GP and rheumy but a weekend on holiday mid flare seems a long time to wait so if anyone here has advice on what I might possibly expect to happen it would be great to be prepared.

Fingers and wrists now locked - it's as if someone or something has beaten me up or a car crash and I've been reassembled but nothing quite fits or joins up or fits together anymore? Hell as you all know only too well. :sad: mat xxxxxxx

Ps good news pain is so dominating that I've completely lost my appetite so hopefully won't get home to usual post holiday weight gain!?