Rheumatoid Arthritis

Thanks Teetime. He is under a rheumatologist and I imagine that the problem is really that he won't engage. But at least we know some of what is involved and nag encourage him to access more help. He's a selfish old b****r and it all impacts on his wife.

HI kitty he should be under the care of a rheumatologist who will organise all this for him if he tells her/him whats happening. There are many new drugs available for RA my BIL is badly affected but gives himself a weekly injection of something wonderful and expensive and takes no other meds and can function fully now. You do have to engage with your long term illness as a patient though and some people just wont they try to ignore it and it gets worse and worse.

Thank you for your input. Don't know whether my bil will take any notice but at least I'm not so much in the dark.

My best wishes to all suffering this awful disease.

It took me 20 years to accept I have a progressive disease and associated auto immune problems. I believed I'd wake up one morning and it would have burned itself (rather than me) out. What a B that you can't have methotrexate or the biologics Marydoll. Yes, they carry risks but they give a quality of life and diminish the damage the RA can cause. Great to read your positive posts.

The biggest hurdle I had to overcome was to actually admit to myself that I had a chronic, progressive condition. I thought I was invincible, boy was I wrong!
Due to my chronic lung conditions, I am limited in what medication I can be prescribed. No Methotrexate or biologic treatments. Hence the reason for my RA being unstable at present.
The advice I was given was plenty of rest, but try and stay active. My DGD's pram makes an excellent walking aid. The days you feel good, make the best of it, but listen to your body and rest when you need it. Unfortunately I don't always listen to my own advice. I just want to make the best of the time I have. I still travel abroad (although travel insurance is extortionate and my hubby has to carry my luggage) and I also have a very busy social life. I admit, I can get a bit low at times, as there are occasions when I have to cancel holidays or social events, or am wiped out with fatigue, but so what. You just look forward to the flare up calming down and the next adventure. With the correct support, you can still live your life. I hope Kitty your BIL gets the help he needs.

I'm another RA person and support the post above by Marydoll. I also worked for much longer than, on reflection, was wise. My GP and consultant were both advising I retire but financially that wasn't the ideal option, in addition i did enjoy work. Like Marydoll, I eventually became so ill, I had to retire. My RA is stable currently, I'm on one of the biologic treatments, which gave me my quality of life. The chronic fatigue that goes hand in hand with this disease is beyond description.

Stoicism can be a bonus at times but so can being honest about bad things are.

Kitty I am shocked and sorry at the lack of support your BIL is receiving. I too have RA but have a wonderful consultant, who has been so supportive.
Also, I have access to a rheumatology support nurse (in fact she phoned me yesterday to ask how I was faring) a physio, an OT, I attend a fatigue support group run by OTs (which has far surpassed my expectations) and when my pain became unbearable, I was referred to a pain clinic.
I too was stoical and refused to give up my job,(despite being advised to) until I became so ill, I had to retire early. Being bloody minded nearly finished me off.
Although my RA is not stable at the moment, it is not for the want of everyone pulling together to try and help. Is your BIL being too stoical and both GP and consultant are actually unaware of how very ill he is feeling? Just a thought.
It is an awful condition. I have had little sleep at all the last few nights, due to my pain levels and the chronic fatigue drags you down so much.
A Blue Badge enabled me to keep working for many more years than would have been expected and a PIP has allowed me to buy gadgets which make my life easier. I was very proud and embarrassed initially, as I had paid my way all my life, but what a difference they have been in helping me retain some measure of independence.
I am so sad at how your BIL is suffering, please urge him to re-think and consider asking for more support. Nothing ventured, nothing gained.
I found that, before seeing my GP and Consultant, if I wrote everything down in bullet points, it allowed me to focus without becoming too upset. It seemed to help get my case across. Every best wish to your BIL.

Thanks Charley. I'll mention OTS!

He could ask his GP for a second opinion but it would be worthwhile to do his homework first and have a named person he wants to see.

It sounds to me as though he should have a physio as well as an Occupational Health home visit to see if there are gadgets which may help him eg he may need a stair lift to make life easier for him, simple things such as long handled shoe horns, and a picker upper. There are items to help him get dressed eg put on his socks but to me they are difficult to manage if one has limited mobility in one's fingers.

There are armchairs which can assist him out without ejecting him. The chair should be the correct height so that he does not overly struggle. If a plate moves on the table there are mats available to stabilise them to make eating easier. There are lots of items, I am scratching the surface.