Not sure how to start

Luigi

Hello, my name is Luigi,
I live in somerset and have been dealing with Rheumatoid arthritis now for almost 23 years now now, I've been on various medication for it over the years. I now inject Methotrexate and have a new tablet form drug called baracitinib. (Excuse the spelling) alongside the methotrexate. I still have really bad days and I do have good days. I was on tablet form for everything but made me extremely sick.
Only a few months ago I couldn't even get out of bed, but I had to force myself as I cannot afford to lose money through lose of work. And yes there are occasions when I feel like enough is enough as the pain is just unmanageable but my family keep me going. Rheumatology department are so stretched there is a long waiting list.
I do need people to talk to and I have never asked for help before as I feel to proud, but things just get a little to much sometimes and it would be good to talk to someone who really understands the pain and suffering I have. It makes me a grumpy old **** and I'm only 45. This is not like me as I love life, or did, and was always the fun happy guy that everyone wanted to know. I just shut myself away now.
Am I talking rubbish or does this all make sense?

[Deleted User]

Hi Luigi and welcome to the forum!

Firstly, I am sorry to hear how you have been feeling. This is nothing to be ashamed of, as living with arthritis brings with it many challenges which when faced alone, often seem too much to handle. The very premise of this forum is to help in situations like this, to offer a place for people to work together and provide help to each other, so rest assured that we are here to help and what you mentioned in your post will resonate with many of the members.

It is nice to hear that your family act as motivation for you to keep persevering, having a strong and loving family is definitely as beneficial as any medicine. Having said this, sometimes everyone needs some additional support when everything seems a bit too much to handle. Our helpline team act as a completely confidential service and are available over the phone: 0800 5200 520 (Mon-Fri 9am-8pm).

From your post you mention that you are finding it difficult to act like your normal self in work and social situations because of how you are feeling. I hope that this forum provides some useful information and that you are able to get back to being the life of the party that you once were.

Please join in any of the forums where you feel comfortable and let us know how you are getting on.

Best Wishes,
Alice

dreamdaisy

Luigi, that all makes perfect sense, you are talking to people who get it because they've got it and know exactly how things can be.

I am not in a similar position to you because I am female, have psoriatic and osteoarthritis, have no direct family apart from my husband, was self-employed and am now retired but arthritis affects my life on a daily and nightly basis and has done since 1997. You never really get used to it, neither do you get used to the reactions of those who, because the word arthritis is in their vocabulary, think they know what it is. I take injected meth and humira for the PsA, they do nothing for the pain or help my mobility but they do control disease activity and that's as good as it gets.

A friend of mine has been on barictinib for the past six months or so and she has been desperately ill with a massive flare, it aggravated rather than alleviated her RA and her hospital have taken her off it. I know it is a new med, and I am sure there are many who are doing well on it but we never here from those who are because their natural assumption is that everyone else is too. I was swapped to imraldi back in April, it's the biosimilar for humira. That was not a good move, after a few months of feeling worse and worse I left a message on my rheumatology helpline, was given a cancellation appointment and my consultant immediately swapped me back to humira. I say immediately because that was in June and I received it in September.

Rheumatology departments everywhere are under immense strain, it's one department that never discharges patients but in your shoes I would contact mine so they are aware that things are not as they could be. DD

stickywicket

Luigi, it all makes perfect sense, you are not talking rubbish and I strongly suspect you are not 'a grumpy old ****' though, if you are, welcome to the GOS club

Arthritis has a way of getting us down, even the 'fun guys', even those of us who try hard to put on a brave face. As a wise friend once told me years ago – everyone needs somewhere where they can just lay down the pretence and tell it like it is. It helps us to remain 'ourselves' for the rest of the time. Pretence is a weighty burden to carry about. It drags everything down.

I started with RA as a teenager and, in my 20s, 30s and 40s, I kept going much of the time for the sake of my family. We do it for them and yet, paradoxically, they are the inspiration which enables us to keep doing it. I'm now in my 70s and our sons are both grown up with sons of their own. We still have great times when we're all together. Financially, they missed out on things when they were young as there was only my husband's wage coming in but I don't think it did them any harm.

I don't know how your situation can be eased but here's what I'd do.

1. Let my rheumatology helpline know. Ask them to check my inflammatory levels. Sometimes the DMARDS are actually working even if it doesn't feel like it. In that situation there's no point in fiddling with them. It's just a matter of pain relief, exercises, distraction and lifestyle changes.

2. See your GP about altering any pain meds you take, asking for a referral for physio and, maybe, to a Pain Clinic. Physio exercises are rarely what we want but often what we need.

3. Change whatever you can that could help. Sometimes we have to face unpalatable truths and, unfortunately, so do our nearest and dearest because arthritis affects the whole family albeit in different ways. One of the hardest things to learn, and keep on learning, is the balance between not moaning all the time but, equally, not shutting them out from what inevitably is a huge chunk of our lives. Tell them, factually, when stuff is bad. Work out, together, ways of doing things differently. Keep them close. They love you. They want to be there.

I'm very glad you found the courage to open up. I do hope we can help.