Rheumatoid arthritis for many years

[Lesley_1]

Hi everyone. I am 59 and have been treated for rheumatoid arthritis for 28 years.

I live in constant pain, some days worse than others. I also have bulging lumbar discs that limit walking and standing so I have an electric chair.

I feel I am losing the battle with the pain and chronic fatigue as each year goes by.

I have just had carpal tunnel repairs on both hands from Rheumatoid arthritis. Lots of joint stiffness and nerve pain.

I started on the Xeljanz last year but we are finding my ESR continues to climb monthly. I have also had Angina for only a few years less and I am guessing that the chronic inflammation is causing the angina to become more frequent.

I find it totally depressing that steadily more and more issues are occurring, now I have cataracts starting.

I didn't realise when I was first diagnosed how much it would affect my life

[oldtimer]

Sorry to hear that you are having such a bad time with your RD. It sounds as if you are not well controlled if you are still having such a lot of pain. But it's worth looking at every type of pain relief - from distraction, relaxation techniques, to wax baths and TENS machines to help.

I too have pain every day but I've learnt to live with it most of the time. I keep busy and active with walking (not up mountains any more), swimming and gardening sitting down. The Rheumatologist says that I am "undertreated" but I am not prepared to have some of the awful side effects that I had with previous medications. Some of the things I'm developing I guess I might well have had even without the RD as I age - like the OA and cataracts.

[Lesley_1 in reply to oldtimer]

Thank you for your comment. I tried the Biological medications (humira and orencia) and they had a lot of side effects and created more issues than they solved.

I have also been under a lot of stress over the past 18 months and that makes everything worse.

I take many vitamins at the suggestion of my rheumatologist.

So yes I know I'm under treated but I'm trying to steer a middle road.

Two years ago I got the Influenza virus despite annual flu shots, within three days I was very very sick. I didn't realise I had double pneumonia as well as I'd never had it before.

I was in intensive care for six days in quarantine.

At that time I was taking Lefluomenide (Arava) plus my other medications.

I had just taken my methotrexate the day before I got sick but was still taking Lefluonomide not knowing that it stays in your system for three weeks which added to the severity of the pneumonia.

I went into hospital on Monday with my Webster pack and on Thursday morning they came in with my weekly methotrexate.

Fortunately I was able to tell them I wasn't taking that as I was sick.

The nurses didn't understand so arranged for the pharmacist to visit who told me the Arava was worse! And that I was correct in not taking them. I stopped the Arava then and didn't take it any more.

This is the difficulty with the medications. It has to be weighed carefully doesn't it? So that's the price I pay to not take it, is to have more pain and fatigue.

I like to have aromatherapy oils going in a vaporiser and I bought myself a medical lambswool whichh I feel helps.

I haven't looked into tens machines. Any tips about that would be appreciated.

Many thanks for replying,

It's nice to talk to someone else with it.

[oldtimer in reply to Lesley_1]

I had pneumonia in January - fortunately there is "Hospital at Home" here and I had an oxygen saturation monitor to put on every hour and to ring 999 if it fell below a certain level. I've had Hospital at Home before (sepsis on a drip of antibiotics) and it's excellent here with district nurse and GP supervision. Much prefer it to going into hospital.

TENS machine - the local pharmacy lent me one (for a fee which was later deducted from the price) to try. It has pads that you place according to diagrams for various sorts of pain and then sit, or lie, with it on. You can use it walking around, but I can't see the point - I use it while relaxing, listening to music or reading. I used it originally for nerve root pain from the prolapsed discs in my back, but it is also useful for other types of pain. . I find it most useful for nerve root pain.

I do agree that it is a balance between gain from the medication controlling the RD and the side effects which sometimes make life not worth living!

[Lesley_1 in reply to oldtimer]

Thanks so much. Gosh we sound very similar. The nerve root pain is the worst. I get so that I can't stand it. Going to bed and taking a Valium helps