I’m lost again…

[forislava]

I’m lost again and there’s no one to talk to.. I don’t know what to do, my head simply can’t process everything… I’m about to, hopefully, to start my first biological soon, I’m apparently entering prey menopause at 41, also have ADHD (not taking meds for the time being…), had a massive mouth infection with ulcers, blisters, my lips exploded… I’m almost over it, I look like I’ll drop dead any minute now cos I’m down to 36kg… it hurts, I don’t have energy, I’ve got kids, I’m so depressed and I’m so scarred… I just can’t handle it, I don’t know what to do… endocrinologists, blood test applications, RA appointments, mental health appointments, GP appointments… I just don’t know how to go through this and what to do, I’m down in the corner…

[Neonkittie17]

If you are in uncontrolled pain have you discussed this with your rheumy? Or doc to get some better pain relief. Also do you know when you are likely to start your new biological? Hopefully soon. Have you a thyroid issue to make you feel very unwell and plummet weight? Happened to me when I got Graves (hyperthyroidism) and went under 6 stones in weight. I hope you can phone your rheumy helpline and say things are unbearable and can they help you here. Maybe a steroid injection to alleviate the pain and stiffness of that is the case. I hope you can soon start your biologic and then you’re nearer relief and feeling better. I know it’s hard to juggle multiple appointments as I’m doing that at the mo but not ftf. Exhausting I recall going to them all. Gentle hugs. 💗

[forislava in reply to Neonkittie17]

Thank you so much for your quick reply… I have an app for my new medication on 23rd, although I’ve clearly explained that I’m on the brink of sanity, lasted 2 months on leflunomide and can’t anymore… the earliest they can see me is 23rd, which is not far. As for the pain - there’s nothing they can do.. codein doesn’t help, can’t tolerate paracetamol or steroids, so only ibuprofen… How long after they actually offer you biological you actually receive it?? The pain alone I can handle I think… I’ve been referred to endocrinologist but don’t have the energy to make an appointment nor I want to, my thyroid was semi-fine last time, I lost weight as I literally was living on yogurt, water and soups… I think.. how do I handle everything else? How do I keep being a mum? How do I find the energy to apply for secondary school… I’m a mess, total, thank god my husband is taking care of all of us, although we had a big fight over me starting biological…. I’ve let go of the idea that RA will decide miraculously to go away one day, but he obviously did not… his first reaction was do you know the side effects of those?!?!? HELLO?!?!?? Who do you think you’re asking??? All that shit of healthy eating, juicing, herbs, been trough it in front of his eyes - IT DOES NOT WORK!! Period.. We’ll get over it, but I’m still so pissed off at him, although I know he’s scared, I’m scared too… My main question is - how do I go through all of this, meaning maintaining a resemblance of normal life and not scarring my kids till I get a grip on myself, they can see and feel I’m loosing it and I’m so down I can’t even manage to pretend I’m so depressed and scared that I can’t function…? How do I do that? There’s no helpline working… OMG, I’m truly panicked and sound like menopausal mess… I’m sorry, there’s not even sense in what I’m saying…

[Neonkittie17 in reply to forislava]

Yes, there is a lot of panic for you I know. I hope your husband can continue to help and thank goodness he is very supportive. Panic doesn’t help us ... we can’t not do it though. I’ve been there too. Hoping it was something else and would go as one doctor suggested. It’s awful but once pain subsides and the biologic starts to work you’ll feel much calmer. If you don’t get your RA under control then that is a danger in itself. You’ve tried other DMARDS without success, so it’s the natural progression to a biologic. The side effects don’t happen to everyone but they have to make patients aware.

I don’t think you should pretend all is normal to anyone. I know you don’t want to scare your kids but if you explain some of it to them in a non scary way they may help you and understand you’ll be ok but it’s going to take time for medication to work. Your bloods will be monitored and you can let your rheumy nurse know if you have any issues with the new med. Ask yourself what may happen if you stay as you are? (Joint damage and even more pain.) RA won’t go away but can be managed really very well and you can get a lot of your life back.

It’s no shame to have RA so don’t think of it like that. I used to think that at first and if anyone is offhand as you’re not as you were or have to make some adjustments, then they ain’t worth bothering about. Obviously your husband is concerned for you taking a new med and he probably won’t ever feel good about you taking it, but be more confident in it as you become used to it and he sees you recovering and doing well. I wonder if you are able to phone the NRAS helpline and talk to them about what to do and how you feel as they are used to people who are unsure of taking biologics. I made that call and spoke to Victoria in 2013 who helped me so much. 💗

Not sure how long you’ll have to wait to get the med but you can ask at your appointment on 23rd. Glad it’s not too long to wait for that now. I hope that all goes very well and things move swiftly for you. 🙏🏻

[Marionfromhappydays]

I've found 1 day at a time and breaking things down into small but doable things.

You've sorted getting on biologics and that's great foot forward.

Now I would think of all the things you need to do and break them down Into smaller pieces and work through them at your own pace.

I've got children and find I run out of steam by about 5ish so I tend to concentrate on doing things in the morning. I've bought a slow cooker and can put on in the morning and don't have to cook later.

Maybe work on finding 1 new food a week you can tolerate that will help get back to a healthy weight for you.

Come here and chat to us, totally use this forum and get things out your system, we understand. A BIG part of having this disease is the mental toll it can take on a person, we are only human and we all reach maximum at some point. Xx

[forislava in reply to Marionfromhappydays]

Yeap, I totally lost it yesterday… still feel overwhelmed but there isn’t much I can do about it I think. The world won’t stop for a few weeks so I can sort myself out.. I’ve cried a lot again, than again, my husband is truly supportive, the thing is - we found out later on when I could talk like a an adult that I am sort off “nervous” regarding any new drugs, I just never really showed how scared I am and I didn’t understand why I’m so scared- of course it’s normal to be scared, but not to that extend - I talked with my mum who was totally surprised to see me crying like a little girl and panicked… question after question after question and she got to the bottom of it - I’m scarred and panicked not just because I might experience when changing meds, I’m scared to death what my kids will see of them and how that would scared them… My DS is 10 so we already had lots of conversations and he knows I’m not dying, I’m just finding the right treatment to get this under control… but the other day he told me for the first time that I look awful, offered to bring me some food or water, anything… that was the trigger I guess… I thanked him and said how kind of him, but it’s just because the mouth infection, it will pass. Didn’t think much about it until my conversation with my mum, we don’t get along easy at all and for me to call her was obvious enough for her… than she said with a smile “wellcome to motherhood” and then lots of crying and laughing… So I’m still a panicked mess, I tried to call NRAS but I can’t talk like a normal human being yet as crying comes first whatever I try to explain… I’ll try again tomorrow.

I’m eating more and infection is definitely under control so I’m sure it won’t be long till I gain some weight and strength back I hope…

And I truly envy you if you feel drained by 5… I usually wake up that way, but I know this will pass too once I got the right medication for me.

Once again this brilliant community helped me keep my sanity-ish knowing I’m not alone… Thank you!!

[Ali_H]

NRAS helpline opens at 9:30 in the morning..... 0800 298 7650 it would be worth giving them a call for sure.

Know that you’ve had a real sh1t time to get a RA diagnosis and the COVID situation has made it triple hard for you.... breath long and slow through you nose (mouth breathing exasperates distress/stress) and be assured that this too will pass - just not as soon as you would like.

Trying to make, get to appointments is a crappy bind but worth keeping up with as in the long run will help.

It might be worth getting a prescription of ‘nutrition’ shake drinks to get you physically through the weight loss and help keep your vitamins etc up.... I don’t know what’s the best out there to support with this but someone might have experienced such weight loss and be able to advise better.

I hope you turn that f-ing corner soon!!

All the best

Ali

[forislava in reply to Ali_H]

Thank you, I won’t need prescription nutrition shake as my ulcers/mouth infection is almost gone now, just little sensitive towards anything acidic, but I’m eating like a normal human being- food glorious food… My lips are fine too, but if I don’t apply at least once a day some blistex I think (it’s the only thing that works for me that works for cold sores) I can feel them starting to form again and I’ve no idea why.. no temperature, no flu symptoms, but anyway- obviously it’s not completely over yet but at least I can eat!!!! Not just that but I want to and I’m hungry- a feeling I think I’ve lost forever😁 I’m steering clear from the scale as I know they won’t be any positive change if any, but at least I don’t feel weak and dizzy and like I’ll drop dead any minute now…The COVID situation made it so much worse for me, although I realised that in the middle of the crisis as I was still dwelling on the thought “RA? Me? They’ve got something wrong, this simply can’t be happening to me!!!” Then the paranoia of germs - both my kids are going to school and nursery and they bring whatever it’s seasonal or on offer… That blasted my OCD along with ADHD to completely new level- coming home was like getting out of toxic laboratories- everyone was stripping all clothes to designated laundry basket, washing up hands thoroughly, than hand sanitizer, than picking up and putting on new, clean set of clothing- all this in my hallway… My DH followed the rules for some time thinking that this will keep me calm, but it didn’t- you can’t sterilise the whole world! It is what it is and my immune system- weakened or not - has to learn to deal with it… So that stopped and of course nothing happened… They still made sure washing hands first thing when coming home, etc, but no extremities…

Tried breathing- still can’t do it properly but I’ll keep trying, for me the best way to avoid a panic attack or calm down one is to do something- clean the bathroom, pay the bills, do the laundry, etc., anything to keep me occupied… but when I wasn’t able to do that as I was too weak I just freaked out completely…

I’ll keep writing and sharing here - it helps a lot and it means a lot to me. For now the best news is I’m eating again😁😁😁

[-Mii]

Biologics are amazing, Rituximab has changed my life for me, when your on the right drugs I promise your life will be different, stay strong knowing others care Xx💓

[forislava in reply to -Mii]

Thank you soo much of your reassurance!!! I truly truly can’t wait to get there and what you’re saying is easing up my anxiety definitely, thank you! I can’t wait for life to be different again in a positive way, just can’t take more misery and feeling the way I feel - helpless, cornered, scared and tired to death..

[helixhelix]

I could slap your OH! It’s obviously been a hard road for you to come to accept that you need to take drugs, so having him undermine this is just wrong….

My biologic took a few weeks to sort out, and then a few weeks to work but it has been brilliant. No side effects at all. Keep an eye in your skin, but apart from that the risks are far less than many other aspects of life.

Ali’s suggestion of nutrition drinks sounds good, as 36kg is way too low for an adult. And a reason to be getting infections

But overall it sounds like you’ve been dealt a very bad hand. Just not fair having menopausal swings on top of this. But you will get through it. I’m 11 years diagnosed now and life is 95% normal.

I hope you fimd someone to talk to about this, and get support at your apt on 23rd.

[forislava in reply to helixhelix]

I could that for you right now - the slapping I men - but I’m waiting for a blood test… After all this he and my mum suggested a “magical” pill Nivalin or Nivelin.. it’s for dementia but my mum knows someone who knows someone who knows someone who totally cured her arthritis with this🤔 I feel like I’m talking to a wall.. Of course, I can’t leave a stone unturned, had the stupidity to research it - I used to do that for a living so I’m good - and of course, it may control the inflammation and the pain and it’s not for prolonged use. It’s usually prescribed to quite elderly people to give them a year or two before the dementia took over… Oh, and best of all, because I have RA I at a higher risk to have dementia too…. So. I’m putting and end to this, truly don’t care who would feel offended or nod, no f*** to give anymore, it’s my path and what I decided or not - it’s my business. And if someone is stupid enough to try and advice me - he/she we’ll get what I have to say and I have a lot to say…So that’s that - will try to pass that frustrated easier than the last time, on another note I definitely feel better, eat solid food and basically eat normally, even spent Saturday by the sesside with the kids, so I’ll get my weight back. And yeap - menopause doesn’t help, but what can I do? I hope that when I’m a bit healthier with my normal weight my periods will be back… If not - we’ll, it is what is it…

But enough- I’m not going to live this way anymore and definitely stop chasing myths and legends. If you can have RA for 11 year and be back to 95% normal so am I !!!! Thank you! And leave the slapping to me😤

[Sheila_G]

Hi. I am sorry you are in so much pain physically and mentally just now. Having a rather unusual thyroid problem myself I know how debilitating it can be. I would urge you to make that appointment as soon as possible. You could be feeling so much better once they have pinpointed the problem. All the best.

[oldtimer]

I would agree - take one day at a time or it can feel overwhelming. Write a list of what is essential that you do that day.

Cross the tasks off as you do them - it gives you a sense of control.

I'm sorry that you OH is not supportive of what is happening next, but it does show that he cares for you and is worried. So let him do the worrying!

Could he take over any of the tasks as HIS responsibility, like the child care or the cooking?

[forislava in reply to oldtimer]

I’m trying, every day it’s different unfortunately, consistency went out of the door I believe long time ago… but hey, at least we won’t be bored…My DH is very very supportive, it turns out he’s even more scared than me… and than starts talking/saying things without thinking… he already does all the cooking, no complaints there at all, kids are at school or full time childcare - I know - sounds easy, but it’s not… I know lots and lots of people with no support at all and I feel shame that I’m not able to cope, but it’s just too much..

We had a chat, a few more fights, than again chat than I really hope he got the idea that I am no longer chasing myths- I want my life back, and if that’s the way, that’s the way.

Now my family and his family (different nationalities) if they don’t drive me crazy, don’t know who..🤪

[Deeb1764]

Call NRAS helpline they will be able to talk some of this out with you too and maybe give you some new iideas and ways to look at things differently too. x

[Neonkittie17]

Meant to say when I was under 6 stone, I was prescribed Fortisip and Ensure drinks to boost calories and nutrition due to my hyperthyroidism messing my system up. You can get these little cartons in many flavours on prescription as to buy they are quite expensive. x

[Vonnie10 in reply to Neonkittie17]

I was about to answer the same reply you needs some ensure .. or even marvel powder milk with full fat milk is very good my sister was told to use marvel with full fat milk by a dietician ... whilst your waiting to be seen .. maybe you need refereeing to a dietician.. your mouth is healing now so maybe your appetite will pick up sore mouths equals not wanting to eat..I have ra on biological and doing well. I was diagnosed with thyroid issues around your age but I’m ok now my thyroid hit when I was Perry menopausal as well.. I thought I was going mad had awful anxiety give my other half hell...if the thyroid isn't right you can fell horrible low moods fatigue anxiety and depression but once it Managed it’s like you’ve never had it.. take no notice to your husband he doesn’t understand how ra works you will soon educate him ..you’ll get better soon ra drugs are good .. and sorry your going through a tough time right now ..Hi K hope you well. Xx

[Neonkittie17 in reply to Vonnie10]

Hi Vonnie 🙏🏻 Yes, Marvel powder is a good base with plenty of cals and you could whizz some berries/fruit in with a hand blender or use a Nutri Ninja. Both fast. When you feel so rotten solid food is often not easy to face. Ten years after RA diagnosed I got Graves/hyperthyroidism which was what made me lose so much weight. I use to get big boxes of the Ensure on script. My OH would take his the car to the pharmacy back door. Load up the boot. You can get the powder now too and do your own. Boots sell this but I bet you can get that too on script. If the doc knows you’re really unwell with uncontrolled RA and struggling to eat and you’ve dipped under 6 stone they’ll write a script. Do ask them, Forislava.

You are of course right Vonnie about the OH. Mine was very confused re RA but oddness understand anything but he did know I was so tired doing nothing. Having kids to organise and look after must be exhausting with RA.

I’m doing alright thanks Vonnie .. really busy trying to sort my immune. 😑 Hope you’re doing well. Steady and calm with the RA. x

[Vonnie10 in reply to Neonkittie17]

You’ll get there K .. I’m doing ok thanks, glad of the handsmaid tale at the minute it’s keeping me busy glued to the tv.. 😘

[Neonkittie17 in reply to Vonnie10]

It’s taking a lot of time to organise everything for my immunity but I’ll keep plodding on with it. You can’t not really! Hope you are steady. I’m watching HT on iplayer but I’ve read the book a long tome ago. I usually buy some big box sets for the autumn/winter. 💗x

[Vonnie10 in reply to Neonkittie17]

Keep going you’ll get there in the end ..I need a good watch what’s HT .? The weather changing and so are my joints 🥺

[Neonkittie17 in reply to Vonnie10]

Handmaid’s Tail! 😀. Hope you can keep your joints steady. Change in weather better for me as I am wiped out at the mo on abx.

[Vonnie10 in reply to Neonkittie17]

Oh yes HT it’s brill I was glued to it. Think I over did it yday cleaning in the garden so won fault. I don’t kno when to stop. X

[Neonkittie17 in reply to Vonnie10]

I do it frequently. Really wiped out this week. 😑😴 You have a rest at least some of this weekend. 💗 I’m still watching Handmaid’s on iplayer.

[Amy_Lee]

I am so sorry to know that you are in such a pain stage at the moment. I had muscles wastage at the early stage of my RA too, I was left with only 38kg the last I weighted, then my rheumy sent me to physio to build my muscles back. It was a very painful process though but I just had to do those exercises my physiotherapist instructed me to do. However, just I did it to the level of pain I could tolerate. I did it twice a day, morning and evening.

In my case, I ate very healthy food as I could just take any food without any problem. I also had 2/3 of my thyroid removed. I was diagnosed RA during my menopause year.

Suggest to just fix up your appointment one at a time as instructed and go ahead to see your doctor, once you have gotten the right medicines to treat your problems, you will slowly get back to normal.

Do not give up. I was diagnosed in Jul 2014, I started my treatment immediately without any delay. I have been in remission since Nov 2015 and I have my painless life back since.

I told just anyone around me that I have RA and I was in pain. I felt good to make it known. You will be surprised how much help others willing to provide the moment they know how sick you are.

[Nadine-NRAS]

Sorry to get to this late on a Friday afternoon but please call us on the NRAS helpline on 08002987650 on Monday-Friday 9.30-4.30.If you are still feeling like things are spiralling, then call the Samaritans over the weekend on 116 123.

You have every right to be feeling the way you are, but listen to these amazing people, who have been through it, just take one day at a time and know you are not alone.

[Hoshe_53Dab]

My dear forislava, I’m so sorry to hear of your situation, I wonder if you feel able to speak to God whose son Jesus came to Earth to save us, all he requires is that you speak to him about your situation, you may not get an immediate improvement, try making it a daily request. Alternatively get in touch with the Premier Christian Radio prayer team, visit premier Christian radio.com, they are a digital radio service and are also on freeview 725,, I will also pray for you

[forislava in reply to Hoshe_53Dab]

Thank you for your reply and support, I truly appreciate it, but unfortunately religion is not for me, I’m a complete atheist, apologies if that offends you, I appreciate your support and willingness to help, truly, I’ll try to find my own path and wish you all the best with yours! After all, kindness does not require religion.

[forislava]

I do and I will keep taking them, the infection is under control and I can eat a bit more and normal food, I couldn’t get any helpline last night so I called my mum… I’m still a total mess but it is what is but I got to say - you really made me laugh - never ever before attempted fake collapse but it would be interesting to try🤣 but I won’t need it - my GP did a home visit and just seeing me did the job, I got paramedic within the hour at home, got some fluids in me plus painkillers and then more fluids- honestly, amazing people, they stayed for around 2 hours to make sure and actually see that I’m feeling a bit better. Honestly, I look hideous… so if do a fake collapse not sure how fat they’d go… thank you, you really made me laugh🤣🤪

[forislava]

Yes, I was, my GP knows me and when I said I can’t come see you, even the surgery is 2 mins drive or 10 mins walk, I’m too weak, he just said than I’m coming… Although we had our differences and arguments he truly cares and knows when something is far from right… I’m lucky the surgery is that close to my home. And I’m requested for a check up and blood test on Monday but I think I’m making progress, fingers crossed! And it was stupid of me not to call/ask for help earlier… I was so weak and couldn’t speak… I’ll know better next time, if there will be a next time, let’s hope not🙏

[Hoshe_53Dab]

So sorry to hear that after all who knows you and loves you more than your maker

[KittyJ in reply to Hoshe_53Dab]

Please read the rules of the forum 😊

[Hidden]

Hi. Some good comments & advice on here for you….. I would also access your IAPTS team; ask your GP to refer you if it’s too much for you atm. Your ADHD will be in overdrive and you have enough on with the RA.

Also get your partner to read the NRAS website… you should too so you feel better. Knowledge is power!

I remember speaking to someone on the NRAS helpline years ago, and I felt like a weight had been lifted, just from speaking with her. It is very isolating, and people do not know what RA is….

Take care. Day a time. Stop beating yourself up. Xx

[forislava in reply to Hidden]

I still can’t call then as when I try to explain something I start crying and that’s it, even if I get a grip on myself it’s not for long… crying seems like the only thing I’m good at these days… except being pissed off… but I’ll keep trying, I’ll definitely talk to them, just waiting for my hormones to live me alone!!!!

[Hidden in reply to forislava]

Having a safe space to cry is good also xx Take care xx

When I was first diagnosed I was really bad for a couple of years (mentally & physically). It does get better once the tablets kick in, and you really should get some Mental Health support… it is a part of RA that is often overlooked. Something has just blown your life up… Of course you are upset! The worst times in the future, will not be as bad as they are now. Honestly x

[forislava in reply to Hidden]

I know, my ADHD is full bloom now and I’m entering menopause at 41 (I don’t know how much I can take if there is more to come…) Knowledge is power, no doubt about it, I’m getting slowly back on my feet - meaning mentally - but my parents are still pissing me off so I’m I communication with have been ceased until further notice… I’m still not ready to talk without crying half the time, which further frustrates me, but I will speak to them, just need a few more days I think to get it out of my system… if still there than I’ll call and cry… not much I can do about it, my bloody hormones are driving me crazy!!!My husband knows all about, he’s just scared, turns out even more scared than me… He’s my rock, we are fine and will get through this one way or another

[Honeybee61]

So sorry to hear you're having a bad time lately. You've had lots of great advice here. The one thing I would recommend more than anything for your appointment, is to write down all your questions. When I see my Consultant, my mind goes to mush and I forget everything. I wish you the best of luck for the 23rd. Take care. xx

[forislava in reply to Honeybee61]

Thank you, Debra, that’s what I’m doing right now and I’m sure I’ll add more before 23rd!!!!

[Hessie5]

Hey Forislava - sorry to hear of the pain and frustration you are having to deal with. RA can be testing times, but know things will get better. Right now you are looking at the entire staircase, do try to take one step at a time to alleviate some of the overwhelm you are experiencing.

You can get great help from this forum as we have all been down to the wire where you are now. Start by writing down an issue list and speak to your consultant and post here too.

Take it easy - you are going to be fine. -Hessie

[forislava]

I’m so sorry for the constant drama coming from my side, I don’t have anyone else to cry to and know that I’ll be understood… After 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.. 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…

[Hidden in reply to forislava]

The joy of parents….. HE DOES NOT UNDERSTAND. Don’t take it on board x

[forislava in reply to Hidden]

Easier said than done… don’t know…. I’m not planning to speak to him at all for a looooong time so let’s see, I still can’t believe he said that though?!?? And he is an educated man, English literature teacher?!?!? Perhaps getting old doesn’t help him either, but I’ll stay pissed off for as long as I feel to.

[forislava]

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!!!

[KittyJ in reply to forislava]

Good luck forislava, we’re all rooting for you to feel better soon x 🤗