NRAS
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I have lost the me I was.

Last year I was officially diagnosed with RA. Five years prior my blood work showed indicators that it was a possibility but I was not in any real pain and was in denial. After I moved to a new state and stopped working full time my feet, fingers, wrist and shoulders were unbearable and I found a new rheumatologist who started me on steroids and methotrexate. The steroids were a wonder drug and I stopped hurting right away. The methotrexate however made me sick and my doctor really pushed humira and so I started that 10 weeks ago. I have been tapering off 20 mg of steroids and just got down to 5mg. I am gaining weight, my heart races and they make me angry so I need off of them but my pain is not fully controlled. Everyday I wake up, after a poor nights sleep, never knowing what is going to hurt that day. I am depressed and feel so alone. I have a great husband of 36 years but he doesn't have a clue what I am going through. I think most of my family just thinks I'm depressed from moving and selling my business but that is not it. I'm depressed because I don't feel good anymore. I was a very active person before and now I don't have the energy to do anything. My brain feels like it is in slow motion. My thoughts are fuzzy and I don't like the person I have become. I keep looking into diet options that claim to help but I'm having a hard time sticking with one. I know I am so much more fortunate than so many people suffering out there but I don't know how to pick myself up. I am on antidepressants and can't say they are helping that much. What do I do? I don't know what else to try? Thank you for listening.

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Vicky darling remember you are not alone on here. I still miss the person i was before RA, so never fear your on your own. As to your family go and find some info on ra and give it to them to read otherwise they won't understand what your going through. I too have come of the steroids and i hurt in my hands especially so i too know the pain your feeling darling. What do you do to amuse yourself, i have found adult colouring books very relaxing and restful,there is no race to do it all in one go and you can pick it up and put it down when you want. Your on antidepressants and they will help you,but it is a slow process with these drugs so give it time. Remember darling you can post on here everyday if you find it helps you darling. Hugs from me.xxxx

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What a lovely reply Sylvi--- I was at the end of a very similar reply -- and it disappeared. X

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Hang in there with the right drugs things can improve but unfortunately it can take time to find the right combination of drugs to control this disease and then up to 3 months for them to be effective and the first ones you try may not suit you. Pain and depression can go hand in hand. It is extremely hard to explain to loved ones when it confuses us with all its ups and downs and even more so for them to understand - I am not sure if it was the other way around I would be as good as my OH has been. Have a look at the NRAS website as there is further information and some booklets that could help you and your family and they also run a support helpline you can ring and talk to someone. Farm

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Hiya Vicky, you'll find a very warm welcome I'm sure, now you're amongst people who know how very hard it can be to live with this condition particularly before the right meds for you are found. Try & focus on you & getting better, not on the rut you're in just now & hopefully things will start to look brighter once you taper off your steroids & the Humira does it's best for you. It's a game of catch up now but you'll get there, I'm sure you will.

I'm further down the line than you, had the hiccups of the early days, weeks & months, I'm fortunate that my closest family & friends understand now how it can be sometimes. I'm 8 years on now from diagnosis but what I'm sure has helped is my h has accompanied me to every Rheumy & nurse visit so has been there from me not being able to walk properly to where I am now, generally well controlled (on MTX, sorry you were ill on it, & the usual suspects) save for the odd blip, usually self inflicted, will I ever learn?!

Can I suggest you have a look through the NRAS website with your family nras.org.uk it may help them to understand just how very hard it can be & then maybe they'll begin to understand, though they'll never really know possibly they'll appreciate how it is to wade through treacle some times!

Take care & remember we're here, even if it's just to have a moan if that helps. :)

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Hi Vicky

I don't have much to add to the lovely responses you've had, but as they have said, you are not alone. Remember that as well as getting support from the forum you are also very welcome to call our helpline if you ever want to talk things through. We are available Mon-Fri, 9.30-4.30 on 0800 298 7650.

Kind regards

Victoria

(NRAS)

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Your not alone vickydp!

I feel the same way as you, but I remind myself that I don't have to let the disease define me. I just try to be the best me, despite this blasted disease, some days it is a loosing battle, other days I get one up on it!

Like you, I was also a very active/healthy lifestyle person, and now it is a real struggle since everything hurts and my energy is zapped by chronic fatigue. I have been down the methotrexate road, the endless selection of DMARD road, the prednisone road, Humira road and now I am on the Enbrel road.....My fiance is really the only bright light I have and I know he struggles to really understand my disease. He has a hard time understanding the pain portion, because I look 'normal'.

I describe my pain like this to him. ~ "do you know how bone tired you feel after a 10-12 hour shift of hard labour, where everything aches and you just want to go home and sleep?........I feel that way when I get up every morning and my day hasnt even begun" ~ He seems to 'get this better than anything I have described to him....you have to put hubby in your shoes in a way he understands....but...saying that, I think the only ones who REALLY understand is others that have Rheumatoid Arthritis...

Can I suggest maybe a RA support group in your community? they offer you a chance to meet people in your community going through the same thing, the teacher has very thoughtful information to help you understand the social and personal challenges you face. I went to a group at my local library and met people from ages 20- 89 in my group, men and women, and it help to know you are not alone.

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You haven't lost the you you were, it's still there inside you just a bit battered down by pain. And you will find a way to get you back out again, but as others have said it can be very, very slow. I know a year seems a long time, but in RA world it isn't really so don't give up hope that you'll get "you" back. The year after my diagnosis was the longest and most depressing year of my life I think. But eventually things improved, and I'm actually more joyful now as I am so relieved not to be in constant pain.

Don't give up hope.

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Hi Vicky. Please don't despair. We have all been where you are. It won't always be like this. Just hang in there, humira will kick in soon and you will start to feel better. It is difficult for people who haven't got RD to understand how we feel. We look ok, we sound ok and when people ask us how we are we say ok because it is easier than trying to explain and also we don't want to bore people with our woes....not so on this site. We are here to help each other and sharing your pain, your worries, your depression and your fear is a huge part of getting on with this awful disease. You can voice all your concerns on here as often as you like and no-one will complain. We are all here for you. Speak again soon. xx

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Have you ever thought about turning to a holistic functional doctor? Even tough its hard to step outside the mainstream it has helped so many and a growing number of doctors are turning to treatments of autoimmune diseases that are trying to understand and target the reasons for the immune dysfunction and give treatments for supporting the normalization of the immunesystem.

I know how hard it is and everyone of us faced with RA must make hard choices in a situation where you seldom have the help to see and understand your options.

And the decisions are made for you. Good luck and I hope you find the path that feels good for you.❤️

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Oh Vicky isn't RA awful? It does rob us of who we were. I too miss the me I used to be. I do hold out hope that one day these meds we take will finally bring us back to normal. I refuse to let RA define me. I think of RA as a piece of dog poop that I can't seem to wipe off my shoe. Maybe tomorrow my shoe will be "poop free" . :)

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Hi Vicky,

Just voicing your concerns brings into home to me that we are all this giant horrid RA type boat and like Sylvi said we are all here to keep each other afloat. Sure there are many days when the family see me doing stuff, as I keep going, but then I just get so stiff and in pain that I get grumpy or not want to do the washing up or whatever. That's life and as long as you have an understanding family, you are more than half way there. Education is the key. People need to be shown what we are suffering from, so they can help, or at best give a hug, smile or comfort.

Take care😊🌺🌻🌸

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