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've posted just an hour ago for different reason, but I truly need someone to tell me, even lie to me, that I'll be fine😢 it's so so not fair... I'm sorry, I just need to rant and moan cos can't cope and don't know what to do... I am a shell of my old self, I have two kids -9 and 2.5, horrific experience with emergency csections, 5 miscarriages in between, but not like just a bit heavier period - real fucking contractions on the floor on all four no matter if loosing the baby at 13 weeks or 6... 2 pneumothoraxes... somehow I truly believed that once I manage to get her to term, healthy and all and after I recover everything will be great.. big mistake! I've read somewhere that life starts at 40, well, I'm 40 and it sucks!!! After I waited for her for so long I couldn't pick her up, this was literally killing me.. And now I'll never be able to some of the things I used to do... I'm an ex sport gymnast, runner, fitness freak, had a great time with my son and now all they can see I can't get up from bed some mornings... WTF?!?! How am I going to cope? My husband is amazing, the love of my life, and it's taking care of all of us and I'm sick worrying how long he can keep up with this... I do have help and support, I just want my energy back so I can enjoy whatever I want to... I'm sorry, totally out of topic, I'm connecting with people with the same issue but still feel angry as hell... I truly don't know what to do...

Hugs. If the methotrexate didn't work for you, could you ask for a referral to a rheumatologist to see if biological therapies might be something you could be eligible for? Also - things won't always be like this. Hold on in there.

Also, of course you are angry - it sucks and it's not bloody fair. I would totally have eaten that cookie too.

Are you doing physio on your hands?

Agree with going back to consultant there are other things to try!

After 4 years on methotrexate my DP had finally had enough and got his consultant to change meds. In the last 4 years there have been tough times and there have been good times. It is shit and it's hard for him but not every day is hard and the most recent meds have much less side effects. You can do this you know you have too. Treat every day as a new day and keep on and on and on at the doctors.

Sorry you need to try harder with the methotrexate, the nausea does go away and it will help with your pain and fatigue. There is no manic wand that someone can wave for you. Your doctors will or should have told you that you need to persevere for about a year with the meds before you start to feel better. You will never get all your energy back but you will feel better. You owe it to yourself and your kids to get on with the medication, it’s the only option. I refused steroids and it made my rheumatologist very annoyed but I got on with the mtx which I take with hydroxychloroquine and sulfasalazine. The side effects are tough at first but it’s worth it. They won’t give you biologics or anything ‘better’ until you give the mtx a proper go.

Magic wand not manic!!

Sounds like you might benefit from some therapy to help your mental state and dealing with chronic pain. It's very hard but having someone to talk to might help.

I'd go with manic too:) I wouldn't last on MTX a year... I barely managed 3 weeks, I honestly thought I was going to die... I've already had an appointment and change meds, starting today and dreading them... can't remember the name and don't want to get up to check... but it's another DMD and afterwards if that doesn't work out - biological.. I'm not giving up, I'll fight till my last breath, the other day my son came to me crying and asking if I'm dating.. it just broke my ❤️ I just... what the hell I did so wrong to deserve this? I'm just filled with anger... a few days ago my husband got me a punching bag, which I can't punch of course, but I kicked the shit out of it... and it felt good... thank you all, I'm doing my best, I'm just so 😞

OMG... dying, not dating!!!!!

Keep going 4 years ago my DP had to sit on his bum and shuffle down the stairs his pain was so intense. Now he is back running not marathons but 2 runs a week and swimming. He couldn't take the Methotrexate tablets and went on needles with folic acid and coped with the nausea and lethargy. Over time it lessened and he got more used to it. He has low days and it has affected his mental health and he takes an antidepressant too now. But he is still working we are happy have a 9yr old and a 5yr old and he can do all the normal Dad stuff he didnt think he would be able to due to the meds. They are tour friend find a combination that works.

Mtx is far easier tolerated if you inject it. I assume you were also taking the high dose folic acid on non injection days to reduce the side effects?

Did they not give you im steroids to keep you going in the meantime? It's worth saying you need them.

In any case, biologics can be great. My second type are amazing, at any rate.

DP is on methotrexate and seems to be doing little to no good for him.
He is asking to increase it as hoping that may actually do something.
I see him struggle a lot but he acts like it doesn't bother him and that he is completely fine with it all. I'm not sure I believe him and worry he is just putting on a brave front.

@NeverDropYourMoonCup

Mtx is far easier tolerated if you inject it. I assume you were also taking the high dose folic acid on non injection days to reduce the side effects?

Did they not give you im steroids to keep you going in the meantime? It's worth saying you need them.

In any case, biologics can be great. My second type are amazing, at any rate.

All of this.

I self administer methotrexate injections once a week and take folic acid the other six days and it’s slowly helping me. I have no side effects apart from a slightly dodgy tummy the day afterwards but I think that’s worth it - my lupus is so bad that at times I can’t actually walk at all as the joint pain is so severe. With steroids (which I also take for Addison’s and asthma) and a long lasting steroid injection as well as the methotrexate I’m slowly getting some sort of mobility back.

However, if it really isn’t for you don’t give up- there are other things to try!

The acceptance comes and goes in my experience. When my pain is overwhelming I struggle to accept that this is how my life is at 40, how it's been for over 20 years. I was diagnosed as a teen, similar but not RA. You will find a way through. I couldn't have believed 20 years ago that I would still be functioning in this much pain. It's amazing what your mind can get used to.

Our eldest DS has asked that too. If I was dying. It is so heartbreaking to have them ask that, it's not what any parent wants for their child. I was very clear on that, I told him my illness can't kill. He said he was worried for me on Monday. In a worse patch of a very bad flare I've been in circa 4 years now. I don't want him to become a child carer like I was. I've told him clearly that I will get through this and that he doesn't need to worry, I'm the parent that's my job.

I know other chronically ill mums, it helps us fight. I couldn't go on for myself, I don't have a supportive partner. I have DC with SEN, a sometimes emotionally abuse H and am largely unmedicated as I can't tolerate most medications. I will survive whatever I have to for my boys and I am determined to get through this to a place where I'm doing better. You will get through this together.

I've got RA too and could not cope with MTX in either format. Like you, I was spewing daily with the pills and getting really scrawny and the injections sent my liver readings sky high, neutrophils rock bottom and picked up any bug going.

Currently on Sulfasalazine (the yellow peril) and there are many more options to try so please don't despair, there will be something that works and also suits you. I notice you are about to start a new DMARD yourself, if it's Sulfa, don't be alarmed by the yellow wee! Scary looking but completely harmless!

BTW, if you want that cookie then bloody well have it! I don't think there's any magic RA diet, we just need to keep ourselves at a healthy weight, to avoid straining our joints. Do you have a pair of compression gloves? I get mine from OT but they are cheaply available on Amazon too. Wear them at night and at rest and they do seem to help a little.

I was diagnosed in 2016, both hands. Methotrexate and sulfasalazine just made me ill. I started a monthly infusion (abatacept), still no joy.
I found a cheap, good quality cbd supplier (simply cbd), and within 2 weeks I started to get my life back...I was honestly suicidal by that point. But, if I didn't take the oil properly, I'd be in pain again. I'd gone from taking 90mg codeine 4x a day to 60mg once a week, if I needed it.
But, that only helped with the pain and inflammation, the RA was still progressing. So I got moved onto rituximab and that's been the game changer for me.
I was due a dose in March last year, but didn't get it due to covid, my last one was Aug '19, and altho I've had my bad days and I'm getting clumsier as time goes on, I'm nowhere near what I was like at my worst.

I've got to say tho, the fatigue and brain fog is killing me. I was always so active and chatty before, now I'm barely functioning.

I 2nd the compression gloves, they were magic. The ones I got from physio fell apart, but they had nearly identical ones on ebay. Let me know if you want a link.

I'm sorry to hear you have had/are having a rough time of it. I was on Methotrexate which everyone said was the 'gold standard' of treatments...finally a doctor told me that it only works on 65% of people. I was not in that fortunate group.

Keep going, push for some biologics. I've now been on them for the last 4 years (changing regularly as I'm getting used to them each time) and honestly they have been a game changer.

Thank you all for your support, I truly don't see how I'll cope but seeking help and tapping into all available resources... For all I know my life has ended one way or another...

@Lanawondering

Thank you all for your support, I truly don't see how I'll cope but seeking help and tapping into all available resources... For all I know my life has ended one way or another...

That sort of catastrophising is something you can do when there's uncontrolled inflammation - it's been found to affect mood outside of actual depression.

Ask for a steroid pulse. There's a good chance that will relieve your emotional state almost immediately so you can get on with finding the right other treatments for you. They're also handy for nausea and appetite as well as pain relief.

Oh bless you. I have an entirely different condition but totally get where you are emotionally. I’ve just eaten the biscuit too…I was so hungry and the restrictive diet just doesn’t seem to alleviate anything. I too can’t imagine living the rest of my life like this and am early 40s…I have no idea where acceptance or the confidence to keep going comes from but I could sure do with some!! Not hugely useful but your not alone💐

Compression gloves were a game changer for me. And bespoke wrist & thumb supports.

All I would say is there is hope. I lead a normal life now. My symptoms gradually wore off.

At one point I couldn't open a shower door, open car doors, dress or pick up my babies.

Wishing you well.

NeverDropYourMoonCup - I'm not going to argue, the way I think and feel now is not helping anyone, but so far haven't been able to feel differently.
And steroids was the first thing I tried and they wrecked me emotionally to the levels I never knew existed (but did not touch the pain) - my husband describes that period as living with Jekyll and Hyde...
I know I'll have to find the right meds and will take time, but I don't see it anytime happening soon... meanwhile my kids see they have sick mother and my husband transformed to a carer. That's a hard pill to swallow.

@Blinkingbatshit

Oh bless you. I have an entirely different condition but totally get where you are emotionally. I’ve just eaten the biscuit too…I was so hungry and the restrictive diet just doesn’t seem to alleviate anything. I too can’t imagine living the rest of my life like this and am early 40s…I have no idea where acceptance or the confidence to keep going comes from but I could sure do with some!! Not hugely useful but your not alone💐

I'm truly sorry you are in the same situation😢 I had ambitions, plans... I knew when and how and now I know nothing. Everyone with similar issues are saying that sooner or later things get easier and manageable- that's my only hope, but not today.... today is just another lost day... sending you hugs and love, don't know how to comfort you... perhaps we can have a chat and have a good cry together...

@livingthegoodlife

Compression gloves were a game changer for me. And bespoke wrist & thumb supports.

All I would say is there is hope. I lead a normal life now. My symptoms gradually wore off.

At one point I couldn't open a shower door, open car doors, dress or pick up my babies.

Wishing you well.

I've got everything possible to support my wrists and hands and it doesn't do much unfortunately... Are you on medication? I know there's hope... just still looking for mine...