Suffering from painful flare up

suzygirl

Sorry to moan, but I am in agony. I finished all steroids 5 weeks ago and since then have steadily detoriated. The plan was that the Azathiaprione would replace the steroids, and I wanted off them so I could lose weight and counter side effects, as they are not good long term and I have been on them for 4 years.

Usual joints have come up but also my elbow is absolute agony, now my shoulder and wrist have joined in rendering my right arm unsable at all. It isn't much good anyway, but this is ridiculous. Painkillers are not touching it and I woke every half hour last night in agony.

I can't use crutches due to pain, and am really fed up with it all. I don't want to go back on steroids but know that realistically that is what I will be told.

Had my vision tests today and my vision has detoriated and the damage from the optic neuritis was being masked by the steroids. I have my ENT appt Thurs to try and determine the cause of my dizziness. I havent been able to drive for a couple of months now.

My world is my home, I rarely get out and am exhausted, miserable and in pain. I know I shouldn't moan but this is the only place I can vent. Hubby is being difficult which adds to it all.

Maybe Thurs will suss out my problem and I an drive again or my mri results will enablle me to have a magic cure for my back probems When I do manage to go out I am so slow and my leg just wont lift which is so frustrating. I gradually grind to a halt when walking, no matter how much I will it not to be so. I am 40 :oops:

Feels like no light at end of tunnel at the moment.

Apologies for long self pitying moan.

Heather65

Hi suzygirl,
sorry your having a bad time and dont worry about moaning its good to vent especially to people who know how you feel,lets hope your appointment this week will help you ,theres nothing worse than being in pain ,
It can be horrible if you are stuck inside all the time perhaps when the weather is better you can get outside even for a short while or get someone to visit just for a cup of tea and a chat i know it can get you down but hang on in there ,
Heather x

stickywicket

Suzygirl, you are not moaning. You are simply being truthful. You are currently in a very unenviable situation and coping with it extremely well.

I’m not at all familiar with azathiaprione. Maybe it’s one of these innumerable meds that can take 3 months to work. I hope it is and it will. However, if it’s not, then it’s not working and you need something different.

I’ve never been able to use walking aids either. When wrists/shoulders/elbows have played up big time, I’ve tended to use a makeshift sling. Anything to stabilize them. (I’ve been known to undo a blouse button and stick my wrist in there – as long as there were no bewildered spectators around :oops: )

‘My world is my home, I rarely get out and am exhausted, miserable and in pain. I know I shouldn't moan but this is the only place I can vent. Hubby is being difficult which adds to it all.’

I think that paragraph says it all, Suzygirl. You are, very understandably, fed up with an intolerable situation and, in such circumstances, even the best of husbands get difficult because they are dealing with it, too, from a different angle and everyone’s trying too hard not to say too much.

Let’s take one thing at a time. Thursday first. We’ll all be with you. I don’t suppose you’ll get any results for a while so how about trying a change of pain meds? It might help. You never know. If not, you can always revert to the current ones. What about a steroid jab? (I know it’s steroids but a jab’s a bit different and might just tide you over a bad patch. The only other thing I can think of is a few of these ((())) – not much use but heartfelt, nonetheless.

frogmorton

Oh Suzy!!

this is not a moan at all.....and anyway if it is who wouldn't be moaning!

I hope teh ENT man has some ideas...might do you know - I went when I had 'directional vertigo' that made me sick all the time and v v dizzy - the world swimming and if anyone even sat by me on the settee I would be sick. I had an EEg too and some other tests. Fingers will be crossed.

They will be crossed too in the hope that the MRI shows something 'treatable'.

I am so sorry you are feeling that the steroids are the only option for you too, because I can tell how reluctant you are to return to them.

Sticky picked up on the sentence about your world being your home. If Things are not 100% with hubby it will be even harder to cope with with less contact with others outside the home. WE are outside the home and we do care about you - very much.

Love

Toni xxx

suzygirl

Thanks for the support guys and for understanding. I know its dificult for my hubby, I get snappy when tired and in pain.

However, he says I am unloveable know I am ill. It has changed my appearance due to steroids and immobility, I am now rather large when before we would walk and cycle for miles. He says it has changed my personality so I know have no good qualities, so theres nothing to me anymore.

I feel so worthless and hurt. My personality has changed but it has improved certain aspects of my personality. I do get snappy in shops when I am exhausted and people expect me with my 3 wheeler walker to move out of their way :shock: My walker is not a fashion accessory.

When you are in pain and throwing down painkillers like smarties, the last thing you need is this from someone you love. I feel its unfair when he has changed and put on weight.

I am so down and feel like giving up. I keep saying I will make a gp appt on the evening then get up and say I am fine.

It is just so so so hard. Anyone else have this trouble? I know I shouldn't really post something so personal, but many places I can be honest.

earthspirit

hisuzi - i am new on forumthe forum but not the disease RA.
i understand all that you say and espec about the personality change and feeling like a totally different person.

you have written in such a totally honest way and that shows a beautiful personality inside. you dont sound whingy only tired of the pain and the stress and dealing with your changed body. like others have said above, your husband is suffering from this diease too and i dont think we can expect others to be perfect carers 24/7. he is helpless really in all of this, not knowing what to do to help you.

i hope you get some proper pain meds. i swore i would not take dihydrocodeine but i wouldnt get out of bed without them now.

maybe you could take the time to talk to your doctor about other ways lf losing weight and regaining some of your fitness.

ive been having some terribly negative feelings myself, feeling so totally pathetic. its the disease, its not really a change in who you are, only if you actually let it. try to find a way to laugh at the stage of managing your condition.

i dont get out much but when i do and i find myself snapping at people in shops etc, i am aware and immediately lighten the situation by saying sorry and explaining to them whats wrong with me. (in brief, in words that keep the humour and humanity)

i dont do hugs cos they are just oh too painful (dont touch me)
but i am totally understanding of how you feel. none of it is odd or strange or abnormal. many have been or are where you are. hopefully you can snatch a few moments of delight in the beauty of nature or just something that makes you feel chilled out. the warmer weather will hopefully let you at least sit outside and just find a "me" space in your brain.

dont feel guilty about your thoughts & take a few minutes to give your husband a little time too. let him know that you appreciate whatever help and support he has been or given over the time you have been ill. let him know you understand how difficult it is for him too. dont do it snivelling and crying cos then you will make him feel guilty. try to do it when you can copose yourself to be the old you - the one that he knew.

lots of new drugs coming out to treat this disease. you are young enough to hopefully benefit from them.
hope you are feeling a bit better soon

suzygirl

Earthspirit, thank you for such a lovely post. It just helps to connect with others who understand. I wouldn't wish this beast on anyone, but the support you get from others in the same boat is priceless.

In so many respects I am lucky. I do have a husband and 2 lovely lads, a nice home and garden, friends and my little princess Izzybella (cat).

I am grateful but just struggling at the moment, with whats the point. It iks all so frustrating and painful, I give up. I am happy on the sofa and pottering about house, everything else is just too painful and difficult. Everyday chores leave me breathless with pain.

My hubby has been brilliant, but tonight a bit mean. Cooked every one dinner but me and refused to help caring for me like he normally does. It makes you feel so vulnerable and helpless. I hate that which makes me irritable as I refuse to show how it makes me feel.

Life with arfur is tough and complicated.

stickywicket

You’ve had an awful lot to put up with for a long time, Suzygirl, but you’re not going to give up now and we’re not going to let you. Of course you feel snappy at times. You have much to feel snappy about.

I’m sorry about the situation with your husband. It’s never excusable – and, in the vast majority of cases, it’s totally I accurate – to tell someone they are unloveable. None of us can really know another person’s marriage and only you, and your husband, can say if he really meant this or if he was speaking in the heat of the moment. Our families are under pressure from our arthritis too. It affects them differently but it does affect them greatly. Maybe, being a man (they’re not generally as good as us women at voicing emotions), it just all came out wrong. Maybe he’s so worried and upset about you that he’s bottling up all his own worries and fears. Maybe a good, long honesty session is needed. I/we find they're vital from time to time.

I hope that’s what it is, rather than something he really believes. But, even if he did believe it, you mustn’t. Here on the forum, we can all see how kind and helpful you are. That’s the real you. The arthritis can’t alter that.

tillytop

Oh I am so sorry Suzy.

I don't know what I can say other than that I am thinking of you.

lots love and ((()))s

Tillyxxx

suzygirl

Thanks for being so supportive, as always I feel better this morning emotionally. I always feel worse of an evening. I have given myself a mental shake and shall dust myself down and start again.

It has been a difficult few weeks with lots going on and Saturday night my eldest son was attacked and beaten up whilst out. This really upset me, and my hubby was cross I was upset, he felt I was taking it out on him.

I am thinking clearer and may see if I can get in to the gp.

I appreciate all comments, as they do help. Tilly and SW. I do think the carers role is hard and they are bound to crack at times. Honesty is very important to both of us, sometimes he is too honest though!!!!

Thank you all

skezier

Hi Suzy,

Oh flower its unfortunetly how we all feel at times and I am glad to see you say your a bit better today.

The optic neuritis... flower its the ban of my life and they still haven't told me if i will go blind or not though thy have said now they can't tel whats active and whats damage.

I so wish you didn;t have it and just wanted to say one thing which is don't forget it can recover to some degree in between flares.

I hate the lack of depth of colour.... everything is over exposed.

Oh and the other thing they told me was the mtx is meant to be good at controlling it..... I say meant.....

Leaving you a bucket of hopes and so many good vibes that this will soon ease off for you and you will feel a lot better.

((((( ))))) and a sachet for Izzy Cris xx

fowls48

Hi Suzy


Hope you are feeling better today , Sorry you are in a lot of pain i'm sure this weather does not help ((())))xx


karen.

PatriciaH

Oh Suzygirl what a tough time you are having. Having been on steroids for the past two years, with all the outside changes to weight, face, hair etc, I can empathise with how you are feeling. It is a terrible illness that we are dealing with and it sometimes brings with it sadness.

Both you and your husband will be struggling to come to terms with the changes in your lives. I have been a 'carer' and the feeling of helplessness is just terrible. This is not to say your husband's comments weren't hurtful but probably said out of pure frustration at what is happening to you both.

Life brings with it so many difficulties - add to that long term illness and it is a mix that makes for a volatile situation at times. I really do hope that you can both put this few days behind you and look forward.

I am sad to read about your son. This has happened to my son twice. Just awful. They soon pick themselves up though even though we will worry about them always!!!

Take care Suzy. Hope you can manage to get to see your GP and perhaps get some better pain relief for now until your other meds kick in. For me only Oramorph works...

Patricia x

suzygirl

No gp appts, have to try again tomorrow. Receptionist said try phoning at 8.30am for an appt, I had called at 9.15 and it took me 15 mins to get through!!!!


My hubby is normally really good, as some of you know. It is hard for him as he does so much for me, and I just seem to be getting worse. I have been really really down the last few weeks, I need to speak to the gp about this. Trouble is its the pain and frustration that get me down, and not much can be done about that. I get inpatient with myself, and I am already on anti d's.

Am going to have a calm day, light my oil burner and think happy thoughts.

Karen, Cris and Patricia, thankyou for your kind words, I appreciate the support and consider myself fortunate to have somewhere I can vent.

((( hugs))) to all

RosieGlow

I am so sorry to read how badly you are suffering at the moment Suzy.

Whilst it is desperately hard for the healthy partner to fully understand, I believe, however, that there is a line which should not be crossed. Namely, personal insults. That`s the last thing you need.

You have been very honest on here about how difficult you can be, due to all the pain. Maybe you both should spend a little more time, expressing your worries and fears - and in your case, the hurt you are feeling, regarding the comments made. Don`t hide this hurt.

When you do see your GP, perhaps you should ask about changing - or upping - your anti-depressants.

Thinking of you.....Rosie x.

stickywicket

I’m glad you tried for an appointment, Suzygirl. I know how hard it is to actually go through with these resolutions once one feels a bit better but there comes a time when one has to acknowledge that the ‘betterness’ won’t last. I hope your luck is in tomorrow.

I do know that your husband is normally good. That’s why I wonder if he’s finding things really tough too. Maybe he blames himself in some way for your son’s getting beaten up. (Shouldn’t have let him go? Should have given him a lift/lent him the car?) These things aren’t necessarily completely rational. The only person to be blamed is the attacker but fear and anxiety make us react in ways we wouldn’t normally.

When I said ‘honesty‘ I didn’t mean the blunt, in your face kind I meant the calm, talking things, and especially feelings, over without blame or accusations. Mr SW and I usually find this is best achieved over a bottle of wine – mind you, aren’t most things?

I hope you manage that ‘calm’ day and, if you’re feeling worse again this evening, come back here.

bubbadog

Hi Suzy, I've read all of what you posted and I'm alittle late replying but I wanted to say I have been suffering with a flare up on my left side for around 3 weeks now, and my husband seems to be of the same group like your's 'here we go again', 'not this again'. Quite off when it starts but he gets more understanding as the days go by. I know it's because he can't make me feel better it's out of his hands and he wants to get me better but I've told him being nasty doesn't help!
I hope you manage to get an appt with your G.P mine are as bad if you call after 9am you will be lucky to get an appt with your G.P for that week! earthspirit is right in what she said, you do have a beautiful mind, what you wrote to me about my sad news was written with kindness and was sweet. (thank you by the way) and I know from my own situation being stuck in doors 5 days a week gets to me! And then when I do go out I get stressed easily by feeling clostrophobic in a wheelchair surounded by people.
I send you big (((HUGS))) and hope you don't suffer too long with the flare up and hope you get some pain meds soon. Take care. xxx

suzygirl

Thanks SW and Amanda, things are much calmer in our house. I had a sleep this afternoon and feel better for that. Lack of sleep definitely doesn't help!!!

Amanda, you hit the nail on the head regarding being stuck in then feeling claustrophobic when you get out. I find that a lot, I can't cope with crowds anymore.

SW, we tend to chat things out over a bottle of wine as well. It is hard as although only one is diagnosed it does affect everyone and then we still have to deal with lifes little dramas as well.

I will bounce back but I am going to try for another appt tomorrow and speak to the gp.

Thank you all.

stickywicket

suzygirl wrote:

SW, we tend to chat things out over a bottle of wine as well. It is hard as although only one is diagnosed it does affect everyone and then we still have to deal with lifes little dramas as well.

I will bounce back but I am going to try for another appt tomorrow and speak to the gp.

You are spot on with that, Suzygirl, except that what happened to your son was no 'little' drama.

I like your plan for tomorrow.

suzygirl

Just a quick update, I spoke to the doctor today and told her everything about how I was feeling and the pain. She contacted the rheumy nurse to see if I can up the Aza. Also is going to contact pain clinic for support and I have to go back to see her next week, so she can assess how I am doing.

It was hard to be so honest with her, but also a bit of a relief. I know it isn't good to get so down. The gp thinks I should be offered some other med such as humira and other names I can't remember and have never heard of.

She has given me extra pain killers and I can up the Mst. She was so nice and supportive and offered to get me help, with things but I don't think we qualify.

Now I just have to get through the week!!!

julie47

Hi SG

Sorry I haven't popped in before now, but I just wanted to say how sorry I am that you are having such a bad time at the moment.
I am pleased to read though, that you have now been in touch with your GP
and that she was very understanding. I'm glad that she's coming up with some different ideas to help with your pain.
Sending you hugs ((((((((((())))))))))) and get well wishes.

Love Julie PF X

stickywicket

Well done, Suzygirl! It’s not easy to tell the whole truth with medics and, as one who has failed on multiple occasions :oops: (Do as I say, not as I do) I am very impressed. I hope it all helps. You’ve earned some success.