Living the RA life: Hi there, I'm struggling Physically... - NRAS

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Living the RA life

Hi there, I'm struggling Physically and Mentally and Diagnosed in Feb. Since then my life has been takn over by Hospital GP, Nurse , Physio, Orthotics and this is basically my future. So why is it people can't understand I feel depressed? I can't get release from pain and just want t sleep. I been taking Methtrxt injections past 4 wks n now my hair is falling out and I have red lumps coming up on my face. But hey Iyl keep smiling if it keeps others happy. I had t get that off my chest as I feel people around me are worst to understand.

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It is hard and not everyone understands, try to surround your self with those who get it and limit the damage from those who don't. Sometimes you just need to not see people. Things will get better, but it takes time.

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Thank you, someone had said that very thing less contact with negative people I'm definitely going to do that

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I'm so sorry that you are feeling like this. I'm sure all of us have been there, to some extent or other, and it's so difficult when friends and family do not understand.

It might help if you can talk to your GP,and tell them how you are feeling. They can access help for you....perhaps counselling...a chance to talk things through. There is also the NRAS helpline, where you can talk to people who have lots of experience, and can even arrange for you to talk to someone who has had the same experience.

There are lots of us who have felt the same, so this is a good place to start! You're not alone now. Take care, and pop on here whenever you want.

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Thank you, I think Counselling is what I need just t say how I feel and I know I won't b the only one

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I completely relate to this as an active mother at 39 being diagnosed after having my daughter who is now 1 after breast feeding RA came in and took over and pain not getting better still on mtx and hydroxychloriquine and steroid personidole which are lowered and then have to go back up because of pain .. I’m also on pain killers which don’t seem to work for long of naproxen tramadol and then I take amtripilyn also ... I can’t work and am trying to states focussed and am tying to go down the root of ESA which is proving very hard also - finances are tight yet I need all the medications to function and can’t just rely on my partner

It’s frustrating painful and can get you down but the site does show that there can be light at the end of the tunnel .. keep persevering doglovers

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This is a really good place for support and to vent. Sounds like it might be time to talk to your rheumatologist about the methotrexate. Are you also taking folic acid?

And there is help for depression. Please ask for some!

Hope this helps a little.

Big hugs. Jill

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It is a shocking disease. I hate it when people say they have also got arthritis and ask if mine improves when it's warm.NO it doesn't and mine is not like yours but immune system attacks joints n makes them swell with pain etc etc.You waste your breath as ifif they not interested nothing you say gets through. I often thought about printing condition off on paper and giving to them.

I would persevere with trying to get ESA and get letters from GPS etc to help your case.

Must be hard for you with this disease but also wonderful to have your baby to love. People on this site are so helpful and caring so do stay with us

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Do give yourself time, I’ve been diagnosed for two years now and still struggle to accept it. As a society we expect everyone who is ill to get better (or be gone) there doesn’t seem to be a place for accepting some illnesses aren’t curable (let’s add a hope-full ‘yet’ to that ). I’ve had to stop seeing some friends because they don’t want to understand. On the positives there are lots of things the Rheumy team can try, keep telling them and asking for help. I had the hair issues, they reduced the mtx dosage and increased the folic acid. And I talked to my hairdresser, she restyled it shorter which helped and puts a conditioning treatment on it regularly - it’s not the hair I had before RA but it’s improving and therefore so is my self image. Work out what you have to and are prepared to accept (I’m smiling at myself saying that because I’m still at the ‘none of it ‘ stage) and keep pushing to get what you need. There is a wealth of people willing to share knowledge on this site that can help you too - just ask. Take care

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Hi I really understand how you feel. I was diagnosed in March 2017 and have had a terrible time just feel my whole life is crumbling before me. My head and body do not get each other. Mentally I want to continue with life as it was but my body won’t let me. It’s a constant battle. I can’t make plans I have lost my confidence I worry constantly about losing my job, not being able to do things, tiredness I have little or no motivation I don’t sleep well. Can’t be bothered with anything. I have had about really bad 12 flares and flare at least 5-10 days per month. I’m exhausted and really don’t think anyone gets just how hard this disease is. I know there is no cure and Dr’s have to follow protocol but I’ve had enough. I’m just pumped with steroids metho and other drugs which make me feel worse. Now will try biologicals am told by Rheumy that I’m one of the 20 out of every 1000 where they can’t control disease. Told by Rheumy nurse that things will get worse. How am I meant to stay positive and happy? I have always had an optimistic outlook on life but this disease is relentless. I hate moaning but I just need to get things of my chest. Thank you for listening.

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Well, telling you that your condition was uncontrollable and that it is going to get worse really helped. Not. In your position I'd seek counselling as you sound so low and maybe look for a different rheumy. You know, one who is positive and proactive. I truly feel for you. Hugs

J

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Hi MandiS

Sorry to hear you are having a bad time of it. I just wanted to comment on the 20 in 1000 thing. I’ve never heard that before, although some cases are harder to find a successful treatment for - and some may ultimately be ‘resistant’ to treatment - as far as I know there is no way that your Rheumatologist could possibly know that you won’t respond until you don’t!

It took over 10 years to find a regime that truly ‘works’ for me, I’m sure there are plenty of options left for you yet.

If you continue to get that attitude from your rheumy team I’d look into moving personally.

All the best, don’t give up!

🙏🏻

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Hi I can empathise with your situation as I’m sure we all can. I have had my diagnosis since my 20’s and am 43 now. The pain and disease activity are far from under control and as such am about to start my 4th biologic. I guess in time you learn to live with it and adapt your life accordingly. I still get frustrated with people who say “are you better?” Or just ignore that I’m so unwell most of the time. (Including close family members) you need to try and look after yourself and your own mental wellbeing. It is a huge challenge and journey but I think that people with an AI condition are incredibly brave and strong. We are all here for support and laughs and tears. This site is a god send for me as no one else could understand. Take care, Sarah xxx

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It is very hard for people to understand what this invisible illness can do to a human! They can't imagine how constant pain just drains energy like a pulled bath plug. You have to stay strong though and keep fighting, because only you can become master of this condition (with the help of medication of course). Get the people around you who don't understand to read this story from the NRAS website. I hope the link works, if not look it up on the NRAS website under "my Story - Rheumatoid arthritis guy". nras.org.uk/stories/rheumat...

All the best and keep on ranting please.

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I know how you feel. Himself and I joke that, if it wasn't for doctors, hospital, podiatrist, dentist and optician appointments, we'd have no social life. Anyone with an incurable, invisible disease will be sympathising with you and it's rotten. It hits you on every level. I'm two months short of my second anniversary and my mind still writes cheques my body can't cash. I don't try to educate people anymore as most simply don't "get it" and if one more person tells me they "have a touch of that in my finger" I swear I won't be responsible for my actions. Please, keep in touch, keep ranting and we're here for you. Hugs

J

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I know exactly how you feel. My life seems to consist of doctors, hospitals, physio, podiatrists etc etc. Some days, like today, I even have two appointments in a day.

I know how you feel about the stupid and ignorant things that people say as well. Some examples I have had said to me are "Are you better now?" "Perhaps you need a holiday, then you will come back all better." "Well you look alright to me". "When will you stop whinging about your aches and pains?" I have arthritis as well, it is in one of my knees." "I think you should go for a five mile walk every day and you would soon feel well again." "Have you tried eating parsley, someone I know was cured by eating it." These are just a few I can think of at present. I tend to just keep in contact with people who are understanding or who are unwell themselves now. Maybe you could look around and see if there are any RA groups or pain support groups in you area, they really do help.

I wish you well for the future.

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Sorry that your feeling down but it's natural getting to grips with this disease and we've all been there,some people that don't have it just don't get it and never will but don't worry about them save all the strength you have for your own fight and eventually things will improve, we're all in this together xxx

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