RA - trouble with acceptance again and the doctors are driving me crazy…

[Lanawondering]

Still not taking meds, although gave the methotrexate a go, horrific experience, so it’s a hard no… I was already barely 40kg and when that came down to 36kg, along with all the rest of the beautiful side effects (I’ve developed very personal relationship with our toilet as she was my best friend during these times… sorry if tmi”). Afterwards I started on very exclusive diet, which I totally hate, but I reclaimed most of my body back, I even started running again sometimes, but my hands are still not giving in… and I’m not eating as healthy as before and still not ready mentally to exclude everything that I know works for me, but obviously will have to… But I’m again at that moment with the acceptance… I thought I passed that bridge, but now it’s really driving me crazy and I’m really really angry at… we’ll, everything. Why I’m back to where I was with acceptance? Because my hands hurt more than before cos I ate a cookie or two now and then? Or because I’m simply stupid and had to stick with the healthy eating? But, as a normal human being, I’d like to have that double chocolate chip cookie… I know what most of you’ll say, I know I’m foolish and have to be grateful, could be so much worse… but I’m not… I’m just angry, disappointed and feel like punished. Perhaps the additional health issues, nothing serious I’d say, but I hate going to doctors doesn’t help and the fatigue is back with vengeance…

I'm going to say something you might not want to hear. In time you can adjust to this different life. No it's not what you had planned but it can still hold joy. But you have to get to that point. I grieved for years about the life I lost, but I'm 15 years since diagnosis at this point. There are days that I cry because of the pain. I'm terrified of catching covid as I feel I have no fight left.

But, there is still joy to be had. A big change for me was establishing a good relationship with the rheumatology nurse practitioner at rheumatology. The NRAS has a good helpline and excellent resources for the newly diagnosed.

Ps, you are not selfish.

@StormTreader

I am so pissed off with him that I'm planning to refuse the biologics and let him see what happens.

Please don't cut off your nose to spite your face, if these might help you get your life back then thats got to be worth more than a minute of "Ha! In your face!"

It sounds really really tough, I'm sorry you're having to deal with all this!
One thing I did notice was you said you have Hypermobility and do Yoga - I have a few friends with EDS and Yoga is really not recommended because it makes you even more bendy when there's already too much give! For hypermobility, Pilates is the recommended exercise as it helps strengthen your core muscles that are doing all the work trying to hold your joints in place.

Ohhhh it's so tempting yet so foolish.. Honestly, right now I'm ready to do it just so he can finally understand RA it's not a joke and it can be fully controlled with lifestyle changes - and trust me, I did a lot of them, no alcohol, no sugar, no gluten... And? Still in pain and a pathetic version of myself and every time I hear "it's a state of mind" I'm looking around for a brick or something heavier (at least to attempt to throw it him...) and give him a state of mind... Probably too many things happening one after another, probably the bloody hormones, I don't know, but I've got the feeling I'll be furious for quite some time... Currently I've explained that if he doesn't want more fights I don't want him to speak to me... and I'm in the spare bedroom as just his presence provokes me to be nasty and he doesn't deserve that... Because of the lovely conversation I've missed my blood test appointment as I'm still very weak, and fighting took whatever energy I had... so that's that.. I know it's not his fault, I truly, truly know, but where has he been the past 2 years??? Looking after both children and me - is he blind? It's not going to get better with his silly advices, although I admit the first year when you are in denial you get what's given to you... Everyone is looking for the magic pill.. Thank you for your support, it will probably take a day or two to cool off and do what I have to.... thank you again, truly appreciate it

@caketiger

I'm going to say something you might not want to hear. In time you can adjust to this different life. No it's not what you had planned but it can still hold joy. But you have to get to that point. I grieved for years about the life I lost, but I'm 15 years since diagnosis at this point. There are days that I cry because of the pain. I'm terrified of catching covid as I feel I have no fight left.

But, there is still joy to be had. A big change for me was establishing a good relationship with the rheumatology nurse practitioner at rheumatology. The NRAS has a good helpline and excellent resources for the newly diagnosed.

You are absolutely right- I don't want to hear that:) but at least can appreciate that you are not sugarcoating it and are being honest, thank you for that! As for the joy - no idea when, how and if I'll find it again. I'll never be able to live my life fully again and just have to accept it while trying to put on a brave face for my kids. Looks like I'm doing well on that front as my DS sad "mum, you are a worrier!!"... after I managed half an hour gardening....

I have had RA for 20 years, and I can't see anything in your post that hints that you have really accepted it, sorry. You are fighting it, trying to control it through diet, railing against it angrily, grasping at straws that worked for someone else - I don't think this is really doing you any good at all.

I think you really need to start treating yourself as kindly as you would treat someone else who is scared and in pain. You wouldn't be angry at them for eating a cookie or taking a rest, so be as nice to yourself as you would be to them. You wouldn't judge me for the decisions I've taken in my life, that are perhaps less impressive on paper than if I hadn't had RA, you'd see the context - so try to look at yourself that way.

With acceptance that you aren't on the path you wanted to be on you start to realise how few people actually are on their first choice path. The majority of my closest friends have something hard to deal with in their lives and I genuinely think they are happier than the people who strive to have everything perfect and impressive. The friendships and relationships I have are so much richer because I know life can be hard and I don't judge or compare and know how to support. Honestly, there are some up sides. The joy to having your own hurdles is not comparing yourself to other people - it can genuinely be a relief.

On a practical note, if I was you I would also ask for a gastro referral, I have Crohn's disease as well (related to RA) and your references to being stuck on the toilet, food sensitivities and mouth ulcers are something I would want considered alongside the joint pain.

Best of luck, have a big cry, it does get better.

I would have to agree with Alexa, I have had RA since I was 3 I am now 33. I am afraid there are days I still don't accept it or "get it wrong" because it's a daily challenge, the simple things are difficult and you only have so much energy for certain tasks. My medication has been change a few times and I am about to try biologicals as my body has decided the last two years to be in a continuous flare cycle every three months. That's just how it is, I take each day as it comes and when I get cross with myself I think "would I allow someone else to speak to me that way?" Answer is probably not. I am lucky to have a good team at the hospital and there are many Facebook groups etc when I was diagnosed there were no such things and it was a huge struggle. With all due respect to your husband with all the will in the world he isn't going to understand, he can try, I have a wonderful husband but have to remind him sometimes there are things I can't so mainly because I handle it so well at times, other times I don't, all you can do is be honest, and not doing something just to show him is not going to help anyone. To echo Alexa be kind to yourself.

OMG!!! How on earth you managed to live with this since 3?!?!?!? Thank God I have and not my kids... sometimes I'm such an ungrateful bitch, sorry for the harsh language...
I believe that the fact my husband apparently doesn't accept it or understand it holds me down, I truly expected for him to stay by his words "I'm with you whatever decision you take". Well, not really, his first words were after hearing the name of the new medication were "what??? and every week??? for life??? Do you know it can give you cancer, blah blah blah.... Yeap, that's all you want to hear when you starting to feel some hope. Tried to explain, didn't work, then told me any questions related to what to do with me and how to support me - there is a NRAS support line - call them, cos I'm tired of arguing, fighting, I hate when he says "you gave up"?!?? WTF!!!! I NEVER give up, pushed through lots of pain, 2 emergency c sections, 5 miscarriages in between, 2 pneumothoraxes, cracked ribs, and I can go on and on with lots of nasty things, but it will be tmi... but I do not give up! This is not a flu!!! It's not going to go away in a week!!!😡 Just... I don't know, perhaps I should try stop expecting him to understand and support me in the way I feel he should. After all - this is me and I am responsible for myself and my decision, sometimes I just need someone to say it's ok, it'll be fine... I'll start from there... But I'm still pissed off and I really hope I'll cool down in a day or two and start doing things constructively. He is supporting us enough, perhaps I want too much of him, he does the school runs, cocking... and looks at me as if I'm made from glass and I'll brake any second now... now this is really pissing me off but I'll work on it, I'll cry, than work on it, then cry...

Wow.... still really angry... with lots of spelling mistakes, sorry!

Ack, all medications have terrifying side effects listed, including death. Having an autoimmune disease increases your risk of certain cancers as well - if you don't drop dead of cardiomyopathy first because the untreated inflammation.

Don't refuse biologics. They are life changing if you get on the right one - and let's face it, having uncontrolled disease isn't living, really, is it?

I puke on everything I'm not allergic to. Antibiotics, painkillers, MTX, the lot. I inject the biologics Sunday night, go to sleep and - nothing. No nausea, no weight gain, maybe I sleep a little heavier, nothing but feeling human for the first time in years. And all for a tiny injection that occasionally stings. Yes, I'm careful with food hygiene, coming into contact with infectious diseases as much as I can working in a school and I'm very careful to take care of my feet and skin, but it's a small consideration compared to what has been stolen from me for almost 45 years since I first had pain aged 4 because I didn't have access to medication that worked.

Oh, and clean eating can fuck off. That's magical thinking if you don't have allergies or coeliac.

Take the bloody meds. Tell DH to take a hike if he goes all sniffy at the idea. There is no virtue in suffering. You aren't more worthy of anything because you think positively or won't allow yourself actual real help.

And be belligerent about it. You've got it, it's shit, you can't stop having it, fuck anybody who sees it as a moral failing. Its not anybody fault, it just is. So you take the meds, do the exercise and physio you can do and balls to anybody who says their nans sister's aunties dog's brother's cleaner's budgie cut out all food and meditated and got better by magic when she went for a prayer healing session ignoring the medication she also took and have you ever considered thinking happier thoughts. They're dicks and best avoided.

NeverDropYourMoonCup

"Oh, and clean eating can fuck off. That's magical thinking if you don't have allergies or coeliac.

Take the bloody meds. Tell DH to take a hike if he goes all sniffy at the idea. There is no virtue in suffering. You aren't more worthy of anything because you think positively or won't allow yourself actual real help."

Now we are taking!!!! I don't have allergies, I think and I hope, but I'm fucking sick of clean eating, juicing, healthy soups, herbs and all other bullshits out there claiming this and that.
We are still at state of "Cold War" at home, although we had some more heated conversations, but now I know why he acts the way he acts. He's scared... and helpless and doesn't know what to do, but at this point I can't help him, as I have to deal with my own shit - so silly of me to think that he really understood that I'll have this for life. I've accepted it, more or less..., and I'm scared shitless of the new meds and at the same time can't wait to jam that injection in wherever it's done... I'm scared what my kids are seeing, I'm scared of the fact that I have a 2 year old daughter and have to be a mother- something I'm very far of being right now...
Well, it sucks, it is what is, I'll accept the meds as I don't have a choice and hope I'll be one of those "lucky" once with no or very few side effects... because if its like mtx or the other one... I don't know, I'll bite the bullet and carry on...
But I'm still so so pissed off at him, it's gonna take some time for me to cool down... We know each other since we were 16 and just that led me to believe he understands... My mistake, not his - not that I'm ready to admit that out loud- but I will. Since the first fight it has been horrible... all my fears are back... he is constantly trying to talk to me and every time I'm getting more and more pissed off, but it will pass... Fuck it, if he can't find the common sense and lie to me (while I'm begging him to do so literally with the exact words) I will - I'll be fine, we'll be fine, our kids we'll be fine!! And from now on, I'll never ever let anything that irritates me pass by me without my saying- so God help those with the advices, I truly don't care, have been "decent" my whole life, don't have the time for it now, have far more important things to worry about than who thinks what. Let's see how long I'll keep that positivism...
I'll probably be in a nuthouse by now if it wasn't for all of you... thank you! And @NeverDropYourMoonCup - you truly helped me the " fuck it" attitude!!!

It's totally ok to be scared, all of you, it's a bumpy road many people think "arthritis" is just reserved for the elderly but it isn't. It's something that changes your whole life. It won't always be like this I promise but your feelings are valid be it anger, sadness, frustration it's all ok to feel. I really hope your new medication works for you because it certainly sounds like you and methotrexate do not get on, it's great that there are lots they can try now and hopefully they can tailor it to you, pain management is a big thing and if they get that on an even keel things won't seem as bad. I actually made an RA friend, we are same age, same condition, same operations etc but also very different because it's an individual journey. Keep talking to your nurse/consultant/online forums even if it's just to get it off your chest! I really wish you all the best :)

That's more like it, @Lanawondering!

Bear in mind that whilst you have uncontrolled disease at present, it can take a while to feel things improving, despite the possible expectations of an instant fix - there's a lot of healing and strengthening to go on before that point.

You've naturally become deconditioned through the disease progression making it impossible to maintain normal levels of strength and fitness - and uncontrolled inflammation affects mood separate to actual depression or distress from being in pain/the emotional impact of a lifelong condition or having a dozy git pulling faces at the thought of medication.

As a result, you won't be 'back to normal' straight away if that's going to happen, it will take time until the feeling good days outnumber the not good/no different - and longer again until good is feeling normal.

In my case, I could say about the first Biologic that it was a massive improvement but not quite good enough - but this one, unlike almost every other medication I've ever been prescribed, I can tell the consultant 'I'm not stopping taking this until you tell me I have to'.

The main difference is that this isn't a short course of antibiotics to deal with an earache or some painkillers for toothache where you only need it for a week and everything is fixed. This is something you do need to keep taking because the underlying condition does not disappear once the symptoms are kept at bay.

I made a crap analogy on another related thread where I likened autoimmune disease to somebody constantly thumping away on your knee with a hammer. A painkiller and thinking nice happy thoughts about raw food diets and smoothies might briefly distract you from him banging away, but he's still there doing more and more damage

The other medication is the equivalent of taking away the fucking hammer before it wallops your feet, hips, back and hands as well. It certainly isn't 'giving up' or a failure to want to take that twat's hammer away and shove it up his arse sideways so he can't come back and have another go.

You can do this. And when you find that combination that works best for you, it'll be worth it. It won't erase the previous years, but it's bloody nice to not have more of the same or worse. And it's certainly a better way of your OH seeing the difference than hurting yourself by refusing all treatment.

(Sorry, that was a long warble)

@NeverDropYourMooncup

I made a crap analogy on another related thread where I likened autoimmune disease to somebody constantly thumping away on your knee with a hammer. A painkiller and thinking nice happy thoughts about raw food diets and smoothies might briefly distract you from him banging away, but he's still there doing more and more damage

Oh you truly made me laugh 😂 Thank you! I might use it🤔 not that I think anyone would understand but I like the analog.

I'm definitely taking the biologics, thank you so much for keeping me positive!

On a different note - I announced to my family that I’m changing my meds to biologics and that might be a game changer - after having specific conversation that support for me now means respect my decision even if you don’t like it - my dad truly truly pissed me off.. (how did the font change!?, I can't do that when I'm trying but there you go...) As I’m sure it’s obvious my first language it’s not English, I’m Bulgarian - I was told that I need to see psychiatric and I said I already did that and even have diagnosis, a few, I was told point blank - then there’s no point trying to talk or help you - you are Englishwoman (as he refers to me quite often recently) with psychological issues…😱 I exploded in my head, but before I managed to put together words and try to lower my voice, I just closed the lap top… What the hell….???? He still thinks it will pass, or he doesn’t think, I’m not sure but do not intend to talk to him any time soon. Got my blood test today, Wednesday I have appointment with my rheumatologist and hopefully I’ll be offered biological- and I’ll take them!!! I’ve got the feeling everyone is against me and can’t understand why… It truly hurt… I’m not crazy, it doesn’t matter where I come from… I’m sick… how on earth could he say that to me…

@NeverDropYourMooncup

Oh, and I love long warbles:)

@NeverDropYourMooncup

Honestly, your attitude is infectious (in a good way!!), mine was the same before the bloody RA entered the picture...
I know, I'm fully aware that it will take time, although there's nothing I can do for that silly stupid hope that the first one I try will just get me back to 95% - I know it's not going to happen quickly but I still hope like a stupid cow...

Can I ask what biologics you've been so far on?

My parents keep pushing their "miracle" pill to me so I've just stopped communication for the time being... Just to entertain you - they are sure Nivelin or Nivalin will cure me, because my mum knows someone that knows someone that knows someone and she completely cured her arthritis with this... Well, the thing is, this is prescribed for quite elderly people and it's for dementia- it gives them a year of two before the dementia takes over... and one of the side effects is decreasing inflammation in joints, which is good, but it's not for prolonged use cos it's toxic if you don't have breaks from it. BUT!!!! Because a Bulgarian professor (no disrespect to the professor here!!!) it will surely cure me! And than I lost it and was told that I'm English women with mental issues and I'm beyond help because of that... sooo, there you go! Still can't believe he said that to me but never mind, I'm sure one day I'll laugh, but right now all he'll get is a pissed of English woman :)

Sorry you need to try harder with the methotrexate, the nausea does go away and it will help with your pain and fatigue

Please copulate far away from me. Take your patronising attitude with you while you're at it.

The fact is, methotrexate does not suit everyone. Some people simply cannot tolerate it. MTX is a first line treatment and there are other DMARDS and then biologics to try. So no. OP does NOT need to 'try harder' - she needs a treatment that suits her and MTX clearly isn't it.

I speak from experience, having RA myself. OP, if you need a pal, let me know : )

@RobertaFirmino

Sorry you need to try harder with the methotrexate, the nausea does go away and it will help with your pain and fatigue

Please copulate far away from me. Take your patronising attitude with you while you're at it.

The fact is, methotrexate does not suit everyone. Some people simply cannot tolerate it. MTX is a first line treatment and there are other DMARDS and then biologics to try. So no. OP does NOT need to 'try harder' - she needs a treatment that suits her and MTX clearly isn't it.

I speak from experience, having RA myself. OP, if you need a pal, let me know : )

@RobertaFirmino Thank you... I'm sick of hearing you need to try harder... I am trying very hard every f day... tomorrow I have an appointment with my rheumatologist and hopefully, hopefully 🙏 I'll get biologics as honestly, I can't cope anymore... Good news is I've managed to put on some weight (hurray) and from 36 I'm now nearly 38kg. I wonder how harder you can try with this BMI and two young kids... Many thanks for your support, much appreciated, I do need a buddy, I'm scared to death of the biologics and at the same time can't wait to stick them wherever they should be sticked.. So fingers crossed I'll survive tomorrow:)

Hi all, thank you for all the kindness and support and moreover reading through my crazy moaning about everything… I’ll be seeing my, well, some rheumatologist today, shortly and if I’m offered biologics I’m taking them - I’m scared to dead but they are last hope at this point so I want them like yesterday, despite the fact I’ve never been more scared in my life… So yeay!!! Wish me luck!!!

Well, I’m starting humira in the next 3-4 weeks so I count that as a success and the next step on having my life back. Having said that… please tell me it’s not a certain cancer dead sentence while on this..? I know I’m silly, but I used to be a researcher and can’t help it… statistically I’m free game any way just having RA, but, but… lymphoma…? Please someone slap me and tell me something positive for humira before I go ballistic…. Gosh, these days I’m hysterical, stopped the bloody hormonal s* they gave me just so I stop bothering them as it turns out most common side effects is depression and anxiety?!?!? No wonder I was suggested to get antidepressant too, which I didn’t, but come oooon! Im taking the hot waves, mood swings, whatever… if nothing shows up in the next few months I’ll deal with it, right now I'm sufficiently depressed and scared on my own with no medication… sorry… a dumb attempt of black humour… My GP is lucky she’s not working today… So, back to humira, I’ll take all positivenes you kind people can give me!