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…

@Lanawondering

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.

Yes, it is unquestionably shit - but I promise it won't always feel like it does right now. There is a medication or combination of medications out there that will help you.

Four years ago, I was off sick from work, unable to hold a mug of tea and things like putting on clothes were agony whilst I couldn't sleep at night because of the burning from Psoriasis covering me from head to toe.

Two years ago, I was exhausted after work every day and couldn't lift a full kettle because it would hurt so much, my hand and wrist would collapse.

This month, I've been to the gym 3 times a week, done 10 circuits of the local rec where I've had a go at jogging for around 1 minute before walking and then jogging again. The weight I shift on the machines varies per muscle group from 10kg to 85kg and is increasing each time. And my Fitbit recorded over 14,000 steps the other day.

All because of a combination of a biologic which I've only been on since October, some custom orthotics, good shoes to fit them and expert advice from Physio.

I'm never going to be a professional athlete, obviously, I won't be able to skitter around on high heels even if I wanted to, I'm never going to climb Everest - but those

I know it's tough. But hang in there - it will get better.

Yeap, unquestionably is shit... somehow still trying to twist in my mind that although l can't defeat RA l still can do things my way and on my terms… and meanwhile life is passing by, l don't know how to motivate myself to start doing things that would keep that fucking thing under control, but exactly because I have to do it for the RA the rebelian in me symply is doing nothing… cos it feels someone is telling me what I can and what l can't do - something that i trully don't know how to twist in my favour… I'm no longer the driver, I'm the passanger… how the hell to live with that and be happy??? Rhetorical question, never mind, I know I sound like hormonal teenager... I've got a lot to learn and have to completely change how I think, have to build up myself from scratch basically into an entirely different person, I was just getting back my old self after the birth of my daughter and now back to zero. There is no more old self, there is only a new self and I don't know who that person is.. I can't pace myself, it's all or nothing for me and it's always have been all in everything I do and because I can't do much, I chose nothing... back to reading and learning... just ranting and moaning... and the doctors are driving me crazy... I'm having positive opk for 23 days in a row and 2 hormonal tests says everything is normal... except the low prolactin, but other than that it's all peachy. The blood tests are saying I'm losing muscle mass and perhaps my liver is working a bit overtime and again it's all normal... so either the meds will finish me up or the RA one way or another, what's the point?!? Guess I can try again the restrictive diet and taking all the supplements (I'm honestly sick just thinking of pills... and I'm one of those people that can take a handful of them with no issue..). Not giving up, but not fighting either... hopefully soon I'll find a way how to move forward. Again, just ranting, had to put my thoughts somewhere..

I'm so sorry to hear how you are feeling, it sounds so tough. I can remember being in pain and the methotrexate making me feel so ill. Injecting it really helped me, but there's so many other drugs to try, I hope you can see a rheumatolgist face to face and tell them how you feel, you need support it's tough going and exhausting until the disease settles.

Is there a hospital rhumatology helpline in your area? My trust have an answerphone service and they have been great thankfully and they ring back the same day or the day after. I hope you can tell someone medically knowledgeable how you feel and they can suggest something. In the meanwhile, have you tried a wax bath for your hands? Helped when mine where so painful.

RA is truly awful, I couldn't do loads with my little one and it hurts emotionally too and it made me annoyed, still does at times. I feel I've let them down so much as I couldn't do the normal things I wanted to when they were little.

I hope you can get some medication to suit you, there's so many medications out there you shouldn't be left to feel as you do. Really hoping you get some relief soon. Coming to terms with RA is so, so hard, I have good days and bad days, good days more the now medication has settled the disease activity. I can think and do things I could before. You need a regime to suit your body

Take care.. And I'd have had the cookie too!

NeverDropYourMoonCup - thank you... may I ask what exactly are your medications, how long it took them to start working, how often do you take them? I've been to face to face appointments, perhaps in the next few months I'll qualify for biologics, then we'll see... meanwhile still it's shit:)

@Lanawondering

NeverDropYourMoonCup - thank you... may I ask what exactly are your medications, how long it took them to start working, how often do you take them? I've been to face to face appointments, perhaps in the next few months I'll qualify for biologics, then we'll see... meanwhile still it's shit:)

Secukimumab (cosentyx). Once a fortnight after one a week for five weeks.

Had to try MTX and Humira first, which didn't do the job enough, but then on the crossover where Humira was losing effectiveness, I had a couple of steroid shots.

Never heard of this one! Thank you! Starting my research!! THANK YOU!!!

Sympathies for what you’re going through - it is very hard to deal with (both physically and mentally).

The thing is ALL of the medications have problems. DMARDS, steroids and biological. They can have different problems and side effects but most are quite toxic meds.

Agree with others that you have to give any of the meds more than 3 weeks. They take at least 6 weeks to work & the average is 3 months - even biological.

Glassesareneeded - Thank you for your kind words, I cried a lot as unfortunately what you saying is true... I've been with this for just 2 years and it totally ruined my life... I know I'll take charge some of these days, but still in the middle figuring out that part... I've been to countless face to face appointments, on one of them they even told me I actually don't have RA but doublejoints (too flexible...). I've asked 3 times are you sure, are you really really sure and the doc said "yeas, I'm sure, I've been doing this for 30 years blah blah blah..." It turns out due to my healthy eating, very clean, and exercise, everything disappeared from my blood test, except, of course, that my marker for RA is positive. I cried from happiness, I couldn't believe and I should know better... now I know better... I, of course, slowly reintroduced some food groups (I've always been eating healthy so not a big issue) and guess what? Tadaaaaa..... RA is back with vengeance... "yeah, you have seropositive aggressive RA, the symptoms are very similar to having double joints so some how it went into remission spontaneously.." Spontaneously my ass!!! Never mind... so had to start accepting that thing again and I really hope I never see that cocky idiot that told me I have no RA, he could at least explain, prepare me that this thing is hard to be diagnosed, but noooo.... he's been doing it for 30 years!! Support groups are not for me... although I'm in touch with TalkingSpace and another support thing, can't remember anymore as I'm starting to recognise that I can't accept it, which means I can't fight it/control it, while my life is passing by... So I truly hope someone out there can give me a hint how to approach that thing and accept that he's staying with me to the rest of my life... Again, not giving up, just pissed off, depressed and extremely angry... working on it... Thank you again for taking the time sharing your experience with me, highly appreciated it!

I'm glad my ramblings helped a little

I really hope you manage to get a sympathetic and knowledgeable rheumatologist who can prescribe you what you need. I'm not into support groups, however I too was really scared and angry about my diagnosis and its effect on my life. When I was low and immobile and in pain, I was able to tell a kind nurse on phone my feelings when getting blood results, and things started to fall into place, although it took much longer than I wanted it to!

When your RA is under control you will be able to focus on your life, but I know that when it flares with me and I feel out of control its hard to believe, and it still makes me cross what I couldn't do with my little one.

Take care and good luck. Hope you feel like you again soon, speak up and push for medication

MTX is a horrible and outdated drug, don't go back on it. Insist on Biologics, they can be life changing. Be honest how much this is affecting you and give your worst day as an example. x

It did help, thank you:) I'm exploring all available resources that could help me to handle this thing, but for now I'm stuck with leflunomide for at least 2-3 weeks... I hate it... not brutal like MTX, but I feel horrible... spending most of my time on the toilet these days... and I'm going on holiday on 19th this month, how I'll handle it I simply don't know... I'll have support, that's the main idea, so my husband can have some rest, grandparents will help with kids, but just the thought of travelling, testing, packing... I better stay pissed off - this is when I'm efficient in everything I do!

DP finds that methotrexate doesn't actually do much for him.
He is also finding it is upsetting his stomach more lately.
Question for those of you who have been diagnosed, I know you don't know my DP but he seems to be taking this diagnosis very well. Too well. Is this normal? He is still in pain but seems OK but often I do wonder if it is all a front.

@LemonSherbetFancies

DP finds that methotrexate doesn't actually do much for him. He is also finding it is upsetting his stomach more lately. Question for those of you who have been diagnosed, I know you don't know my DP but he seems to be taking this diagnosis very well. Too well. Is this normal? He is still in pain but seems OK but often I do wonder if it is all a front.

I'm sorry to hear we have a new member of our club... When he was diagnosed? If it was recently I'd suggest he is still in the denial phase... Which joints are affected- knees, shoulders, wrists, fingers?

@LemonSherbetFancies

DP finds that methotrexate doesn't actually do much for him. He is also finding it is upsetting his stomach more lately. Question for those of you who have been diagnosed, I know you don't know my DP but he seems to be taking this diagnosis very well. Too well. Is this normal? He is still in pain but seems OK but often I do wonder if it is all a front.

Some of us are more pragmatic. It's not as if it's anything we've done to cause it and it's not as if we can change it. Add into that the knowledge that there is a name for what it is and treatments for it, whether it's RA, PsA, any of the other autoimmune diseases or with a side order of hypermobility/EDS (I've got that added extra - big tip for anybody hypermobile - you're going to have to get used to exercising, as stabilising those joints is really important, otherwise, even when the inflammation process is in remission, you're still going to be in pain and exhausted from the effort of holding your body together - light weight training with machines to keep to a normal range of motion, swimming for cool water on inflamed joints and tendons, hydrotherapy referrals from Rheumatology - and ask about custom insoles from Podiatry, as if your ankles drop inwards, they are a life changer after about 2 months' wearing them) - and it's not always a great trauma to know why you feel so shit.

I've had many years to get used to the fact it's there. I don't have to like it, but my opinions don't count for shit where my immune system and connective tissues are concerned. So I take my meds, even the ones that made me feel like crap because they might have worked, the ones that didn't work, exercised, took painkillers when I had to, came off them as soon as I could, tried new things and stuck with them and eventually, I got to the stage of the treatment pathway where I am now.

Where I am now is on the sofa bemoaning the aches and pains from yesterday's Leg Day in the gym. There's not so much space for generic arthritis pain when I hammered it at the gym yesterday afternoon - it certainly improves my sleep, too.

I know exactly how you feel… I was diagnosed with RA sep 20, as well as other autoimmune diseases and fought all the way to not have to go on Methotrexate.

Like you prior to diagnosis, I had been running 25 miles, always healthy, followed Mediterranean diet. It all seemed so unfair and I was convinced that I could handle it without chemo drugs!

Roll on a year and I became so ill. Couldn’t hold a mug of tea, put on my own bra, get my own shoes on l, go for a walk or get in the bath. If I had to get down on the floor, I actually couldn’t get up again.l and I felt so generally unwell, constantly in pain and so depressed.

12 weeks now on Methotrexate and although I still have a long way to go, I can finally see the inflammation receding. Yes there are some pretty bad side effects, (stomach upset , anaemia, sore mouth, hair loss) and i’m not sure that long term this will be the right drug for me, but it’s a start and how i’m feeling now is so much more preferable even with the side effects to how I was 3 months ago and that level of pain.

Yes it was fairly recently. It started with him not being able to make a fist, his fingers kept locking and were in agony as were his toes. Then his achilles heels swelled up. Could barely walk.
He just accepted it but even now he is on meds, he struggles. The edge has been taken off but he is still in pain. Yet he said he is fine with it all. I just think he is putting a brave face on to protect us all. He is like that. Always looking after everyone else. Just want him to know he doesn't always have to be strong.

I don't know if this helps, I was diagnosed with rheumatoid arthritis over 20 years ago. I'm still angry. Like you the medication affects my stomach. Then there is fatigue and brain fog. It's not been easy

However
The gp prescribed loperamide and it's been a life saver. I'm also starting to realise, that certain sweetners like sorbitol, affect the stomach.

It might be worth keeping a diary of what you eat and drink and seeing if there is any pattern.

Anyway- feel free to dm me if you like as I don't want to give too much away on here.

I don't know much about RA, but I did have a condition for a year that left me in agony (despite multiple painkillers including 3x 60mg of codeine a day) and unable to use one hand. I just wanted to say I understand the sheer despair you feel, and that it is totally shit and unfair. And I think you'd not be human if you didn't feel like that when things are so bad for you. It's not a failing.

I hope you find some better meds and other help soon. It sounds as though there will be other options for you, and I'm sorry you have to suffer through this stage, but from others experiences they've shared here, it sounds as though your future life can be a much better one. Hang on in there, one day at a time.

NeverDropYourMoonCup - so you hyper mobility joints too along with RA? And that's why if you don't exercise it hurts even when you are in remission? OMG... and I was always proud of my flexibility and now it's turning against me... Thank you for sharing that, one of the things I know how to do properly is exercise... only have fo figure out how not to take it to the extremes I used to... doing some basic yoga, walking, running sometimes, light weight lifting, but compared to what I was able to do before it makes me feel I'm wasting my time... but I'll keep wasting my time as what you said makes total sense. Good that I have my garden office equipped specifically for training:) I even got one of those things that you strap on your treadmill to put your laptop so I could work while walking... better go and dust of "my toys"...

@LemonSherbetFancies

Yes it was fairly recently. It started with him not being able to make a fist, his fingers kept locking and were in agony as were his toes. Then his achilles heels swelled up. Could barely walk. He just accepted it but even now he is on meds, he struggles. The edge has been taken off but he is still in pain. Yet he said he is fine with it all. I just think he is putting a brave face on to protect us all. He is like that. Always looking after everyone else. Just want him to know he doesn't always have to be strong.

Oh I'm so sorry😥 it started for me like that too, still can't make a fist most of the mornings and still hurts... don't know how he does it... I'm not on of those people that would think is dying simply because of a flu/broken hand/leg/lung... you name it.., I just do what I got to and push through. Always. This time I can't see how to do that... I was doing the brave face for a year or so until I totally over exhausted myself and than I realised what I'm doing it's not going to work this time... I was also the one taking care of everyone and it's extremely hard for me not to be able to that and ask for help.. If you think your DP is struggling, you know him better than anyone, find a way to talk to him, he'll try to say again he's fine, but nothing about having RA is fine... But if he truly found a way to accept it, please ask him for me please how he did it?!?!? Joking:) Sending hugs to both of you, let him know you are there for him even if you think he knows that, it never hurts to say it again:)

@Lanawondering just checking - by RA you do mean Rheumatoid Arthritis?
I have RA and have had it since the age of 3. I'm roughly the same age as you now.
I know you seem to be struggling with the diet but 5 years ago, for unrelated stomach issues, I took the jump and started the Fodmap diet. No gluten at all, no lactose.
The positive impact on my health as been ASTOUNDING. My RA symptoms have all but vanished. Just do it, seriously. When one has auto-immune diseases, there's always something new popping up and just recently I've struggled with a new condition and my diet has been restricted even further which I do struggle with to be fair.

But chocolate cookies
a) are not worth it
b) exist in gf varieties.

Just try the gf diet for 4 months - completely - an if it doesn't work for you, then you can try the next thing. I might just change your life, it did mine.

@Lanawondering Thank you for your kindness. We really appreciate it and wish you well xx

Hi all, back again... no much difference... managed to have a semi-decent holiday, been on leflunomide for 2 months and I've stopped it... no effects whatsoever except the side effects of course...
Oh and I tried clean eating, exercising still can't make myself to stick to it, just it hurts and can't be bothered.. On top of that apparently I'm starting menopause, no period for nearly 3 months... When we got back in UK my daughter had the hives for 24 hours, but my mouth exploded with ulcers, blisters and swollen lips bigger than my face... And about a week on yogurt, water and soup I'm back to 36kg, couldn't stand up... Nearly fixed that, don't ask... and on the same day my GP sent me to hospital just 3 days after we've been back we had to put down one of our dogs... She totally lost movement in both back legs and no matter what we did, medications, masages, very light walks on a sling around her stomach she just perished in front of my eyes and I could see she is in pain... My DH cornered the vet and asked now what, what's the options and what is better for the dog - spinal surgery, which she may not survive or being put down... She was 14 years old so surgery was out of the question and I couldn't be with her because of my stupid mouth... my 10 year old DS held it together better than me. So she's gone, at least she is not in pain anymore. Then I emailed my ra team to explain that I stopped medication and the mouth explosion thing, got an appointment on 23rd next week and was ready to try biologics as I apparently can get one now... Enmbrel or something like that was given to me in a leaflet to educate myself so they better give me that... And here comes my incredibly very supportive husband who is very worried of this new drug... Although he said he will support me whatever decision I make, that's not the case... he asked me if I read the side effects, cancer, limphoma, blah blah blah - all the side effects on anything taking so far and he can't seem to understand why I have to take it all my life... He's an educated man, practical and my stone basically, brilliant father and husband... How the hell he didn't got the message so far - there is no cure, no diet, no nothing, you can only ease the symptoms?!?!? Had a big fight, told him to shove his support up his arse and get the fuck out... I finally found a piece of hope that something might work and he had nothing positive to say about it.. except the side effects of course... So I don't know what to do anymore... I can't handle RA, menopause, being mum, being sick again for a week, I love him and my kids but I truly do not want to live anymore... don't worry, just venting, will never act on wha I just said. I am so pissed off with him that I'm planning to refuse the biologics and let him see what happens. And not following his constant advices - eat that, not that; go for a walk, if you go to to bed earlier you'll be able to wake up earlier... yeah right... I'm sick of it. I know what all of you will say - that I'm selfish and don't appreciate the support I have. That's ok, I just want to be left alone and if possible no major disaster in the near future cos I can't take it...

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.

Sounds really tough.

RA is hard for everyone, and very stressful.
I had to reply when I saw your update and you mentioned embrel. I took it for 6months when I started and it whacked it into submission. I could walk, move play with my little one. I got my independence back and choices. Please don't refuse it without asking lots of questions that address your concerns. I get where your husband is coming from, but honestly you know the pain and its you having to deal with it day in, day out. Please ask more from your team. Based on my experience I'd strongly recommend anyone offered it to take it, but make sure you ask loads! It gave me my life back, and I believe is 'gold' standard treatment.

Good luck, I hope things settle down for you and your family. I know myself how stressful situations effect my RA and my resiliance