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NRAS
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Introduction

Hi, I was diagnosed with RA age 24, after a deep personal trauma and acute stress.

However, I feel like I have always had symptoms since I was a child - I loved gymnastics and despite being a robust, healthy child, doing anything too extravagant always caused me pain (handstands). As a teenager, I was very sensitive to the cold resulting in stiff joints (knees).

First symptoms appeared in my early 20s - I threw out the shoes I thought were causing me to be flat footed.

After my mother was diagnosed with MND, and I became her caregiver - jacking in my job in America and moving home- my RA symptoms returned with a vengeance. I was 23. My knees seized up and I couldn’t walk without 15 minutes physio, warm ups and excruciating first steps. Often, it was better to move as little as possible rather than prod the sleeping dog of pain. Soon the pain in my knees was joined by pains in my elbows, wrists, thumbs, ankles and middle foot.

I have had one joint fusion (talonavicular fusion) but fear my right elbow is beyond repair, too. I ache constantly, and of course worse in mornings or after periods of rest.

After 10 years of diclofenac, infusions and every drug imaginable (thank goodness for the NHS!) my general morale is very low. Bouts of gastrointestinal illness have lead to my next probable diagnosis of Crohn’s (unless the drugs have simply worn out my digestive track!)

I am fortunate that I don’t have a mortgage, but money is a worry since I was made redundant two months ago due to company restructuring. I don’t even know if my old career is one worth pursuing - it doesn’t inspire me. I feel so lost! Oh to be free from RA!

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Oh my! what a tough time you have had and continue to have. I can't think of anything useful to say at this point, other than there are lots of supportive, caring people on this site who i am sure will offer understanding and encouragement while you try and find your way forward.

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Thank you, Norisa. Just looking to speak to people going through similar as I feel I have already fatigued my nearest and dearest with my tales of woe. I try not to dwell long in the “poor me phase”. I am of course so lucky I have access to great healthcare through the NHS here in Northern Ireland. The team have been so good and kind to me, but I do feel like I’m getting worse at times. I am taking so much from other peoples kind comments and stories.

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Nobody on here is dwelling in a 'poor me'. Just saying it as it is in the moment. Take care.

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It's hard going, but you will find much support here.

What medication are you on ? Are you well controlled just now ?

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Thank you, Mmrr. I’ve already received some lovely comments. I am on Annual Rituximab infusions. I have in the past been on: Methotrexate, methotrexate injections, some tablets (leveno-something?), Cimzia and Humira. I had to stop the methotrexate about 4 years into treatment because of th nausea and bad effects on my stomach. I take x2 75mg diclofenac daily, along with pantoprozole. I also take some herbal supplements, and most recently ordered tumeric and glucosamine. I am also vegetarian (can’t digest red meat) and I do try to eat well, but sugary, fizzy drinks are my weakness. I have managed to reduce coffee and caffeine from my diet, and I don’t drink alcohol.

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Hello Roisin, my word! Too young to have suffered like you did and to take on the care for your mum too! I'm doing that now in my 50's for my mum who has dementia and I'm not good just now so I understand how you feel. My heart goes out to you. The loss we feel when we are hit with such debilitating illness's is just horrible. Everything is affected. But you know, there are recent threads on here which are very positive. One in particular from Cwendyn who has lifted us up with ' There is light at the end of the tunnel' When struck with RA it feels all is lost and I think that is because it takes such a protracted length of time to find the medication to control symptoms. But most of us do find the medication eventually and treatment is very different to 10 years ago. To be made redundant is just another blow! I hope that period of gloom is over for you now and things get brighter, I'm sure they will. Re money and work, can you perhaps apply for some benefits until you feel better? Have you heard of Personal Independence Payment for those with disabilities? It's maybe worth reading up on it and we can help you on here with anything. Don't feel alone because your not alone. You were lost now your found with caring folks on this forum. Stay in touch sweetheart. - Suzie xxx

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Thank you so much, Shalf! Your words brought a tear to my eye! I am so sorry about your mum suffering from dementia. It is such a wicked illness.

I used to look at mummy resting, so afraid of stirring her because when she woke it was always a case of waiting to see what new change was evident. It really ripped my heart out! I was so young and silly, it was a horrific time with some of the beautifulest moments I’ve ever had. I wish I had her back every day, but I wouldn’t take her back to suffer. She was 55 when she passed, and I was proud that I could be with her and hold her hand throughout.

I work in PR/communications and have been looking for jobs in the charity sector, even parttime, that would keep me ticking over until I figure out what I’m doing with my life - and get a handle on some of these RA pains. I have looked into some benefits, but I feel at 34 I should be still contributing to society, not weighing down the system 😔 People are always to surprised that I have RA - I am tall and of athletic build. This sounds terrible- but I think I don’t get a lot of sympathy because I don’t look unwell - despite the fact I walked with a limp for 2 years (before talonavicular surgery)

I also ride horses (which is much more mental that people realise, so I ride quite well for a disabled person!) I would love to do something healing and work with animals. I am fortunate in so many ways, I do have to be mindful not to get sucked into the depths of despair because I have so much to be thankful for. To put things in perspective, my friend’s 4 year old has been diagnosed with type 1 diabetes. He has been so good about it! Making sure his levels are checked, being mindful of what he eats. If a 4 year old can cope with what life throws at him, I can only be inspired! X

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What can i say that would help you which for me is hard darling. You need help and you need it now darling. I would say get another rheumy asap darling. Hugs my darling.xxx

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Thank you sylvi, that is such a tender and kind message! You have brightened my day. I hope you are managing as well as you can, also x

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Darling i am getting there,hopefully by the new year things will look up.Thank you for asking.xxx

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I was diagnosed when I was 27, after my 3rd child, 6 years later my husband left and 2 years later he killed on his motorcycle, I had to raise 3 kids on my own, due to my RA I only work 16 hours for the NHS, I love my job but I struggle everyday, 3 years ago I was also diagnosed with Cervical Dystonia, extremely painful,I am so determined to keep my job as these conditions have taken so much, I claimed DLA to help and was doing well, then had to change to PIP and I lost everything, they said because I work I am deemed fit. I couldn't afford medication, food, bills etc. Eventually I won standard care at tribunal, I am now going through this again, the stress made my conditions worse and this caused 2 surgeries, I have never suffered with mental health but now I feel so down, wake up everyday crying, wonder if I can keep fighting, it's hard enough dealing with ill health without fighting the government. Sorry for long post just needed to tell someone. X

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oh bless you sharlynn, sending you much love xx

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DArling you can tell us anything you want to thats what we are here for. Anytime you want to have a moan or offload stuff we will listen to you darling. Hugs from me with oodles of love thrown in for good measure.xxx

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Thank you. Xx

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That’s appalling! All these cut backs are causing a lot of suffering for many. I hope your situation improves soon Sharlene.

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I know it can be really hard to feel positive when you feel you have to do backflips to prove yourself to the govt.... sending you love, I hope your problem resolves itself soon x

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hope you feel better soon and things turn round for you real soon roisin84

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I feel I need to apologise to roisin84 as I jumped on her post with my situation and I probably should have done my own post, it's just while I was reading the post it made me think about the struggle I am going through and just needed to post there n then. I have just made n appointment at GPs as I feel I need to speak to someone. So I am sorry for jumping on this post what I should have said is welcome and I understand the struggles with this condition. Xx

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When you go to your g p see if you can get some counselling too.

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Thank you, I have just got back from GP and they have referred me for counseling, I am so upset it has got me to this point. X

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Don’t be upset Sharlyn. You have had a helluva lot to cope with and at a young age too.

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Not at all, I’m glad you shared your story. You sound like a very strong person and you will continue to prevail - but life is so tough at times x

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I also live in n.ireland and I am grateful that I get nhs treatment. I was diagnosed about four years ago and have still not found the treatment that works completely although I was diagnosed early enough to limit joint damage. I have an excellent rheumatologist and care team and hope that you get the same excellent care.

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Having a diagnosis in your early 20s is awful Roisin. The 20s should be a carefree decade. Constant pain is draining physically, mentally and emotionally . Most people don’t understand the huge effort it takes for us to try to live a bit ‘normally ‘ or the pain, near agony that we are sometimes in. - family especially can be unaware and insensitive and even callous.

This site is great because we all understand and can support each other.

I hope your pain decreases soon.

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Thank you for your empathy kali - i don’t want to feel sorry for myself for too long but I do think that people underestimate how much energy it takes for me to work at the level I do. Which incidentally is far lower than the level I would be at if I weren’t chronically ill. I think they think it’s just aches and pains, not gnawing and grinding bones.

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