Living with arthritis support

Haddington76

Hi there,I have just joined today so not sure how this works! I am 43 and diagnosed with RA 2 years ago.I litwrally woke up one morning and could not move both my hands,my wrists felt as though they had been broken .Luckily I have a great G.P and the diagnosis was pretty quick.Last year,I made the decision to quit my job as I was not coping with physical side and side effects of meds were just too much.I am now on Methotrexate,hydroxychloriquine,sulphazalizine and folic acid.There was a lot of changes in my meds to find the right ones as I am also epileptic and some meds were not agreeing with other meds.Generally I am managing meds and RA and swim and eat healthy.I am struggling jyst now with pain and constant tiredness though and feel like Im always having to cancel meeting friends at last minite as I just cant face getting ready or going out! Im really beating myself up about it and feel like they must be thinking Im exaggerating.Does anyone else feel like this and have any advice? Thank you ,Im a mum of 2 and feel like my children have their own lives so shouldnt be burdened with me! X

[Deleted User]

Hi and welcome to the forums,members here have a wide experience and will offer advice - if you require any information please do nt hesitate to ask.
Al

Haddington76

Thank you

stickywicket

Hi Haddington76 and welcome from me too. I'm on meth and hydroxy too. No sulf for me and the folic acid is just a supplement to deal with possible difficulties from the meth.

I'm glad all has been relatively well for you so far but, as an old hand at this RA lark, I'm wondering how well the meds are working if you're in so much pain and so tired. How are your blood tests? Is your rheumatologist happy with them?

Having said that, I think we all have to cancel things because we're just not up to them. I prefer my social life to be a daytime one now. I tend to crash in the evenings.

How much to tell who is a big question. If we tell those closest to us, both family and friends, nothing much they will see that that's not true and feel excluded. Especially, if we simply say we're tired or 'don't feel like it' as an excuse. They will be hurt. On the other hand if we bang on about it all the time they'll be, with some justification, brassed off with us. Treading the middle line is an ongoing difficulty but it has to be done. Try googling The Spoon Theory which is a good way of explaining the fatigue to others.

My kids always knew I had RA. I had it before they were born. There was a lot I couldn't do with them but that simply meant being more inventive about what I could. I brought them up to be independent – able to do laundry and cook etc – partly because I needed to and partly because it helped me. They are now rather nice, caring adults with sons of their own. We still all have fun together.

Haddington76

Thank you so much for your reply,I have been reduced to 20mg Methotrexate over the last 2 weeks ( been on 25mg)as my white blood count had dropped,so Im assuming the pain has returned because of this?I am having my bloods done tomorrow to see if the reduction has helped my white blood count.It is the tiredness that just seems to be there most of the time that is getting me down.I have great friends and family that are really supportive but your right,its getting that balance between the stiff upper lip and being exhausted or the banging on about it I cant seem to find!

And yes my 2 kids are more than capable of helping out more,I just need to stop doing it all,competely self inflicted! Thank you again x

stickywicket

I hope the reduction will help but, if you're so tired, maybe the disease isn't nder control and, if so, you might need some other med instead eg biologics. Unless these are what you can't have. Please let's know how you get on.

Haddington76

Thanks again for your reply,is there other medication available that could help with the tiredness? It was my epilepsy medication the neurologist had to change as it was not clearing the methotrexate out my system.That all seems to be fine now I have changed my epilepsy meds..I will let you know how it goes with bloids,thanks x

stickywicket

I don't know if there is any medication that helps with tiredness. What I do know is that, if the meds you're currently taking aren't controlling your disease, you'll feel tired. Your routine blood tests will show how well your disease is being controlled. Here is some information on biological meds which are used for inflammatory arthritis, usually only if a patient isn't helped by ordinary DMARDS (because biologics are more expensive).

But, other things cause tiredness too. Again, your blood tests will show if your iron levels are high enough. Mine are always on the low side due to my RA and also the meds. Also lack of certain vitamins can cause tiredness and I can never remember which they are but don't go taking supplements without first checking, either with your GP or pharmacist, that they won't interact with any meds. Here's what the NHS calls 'The Energy Diet. https://www.nhs.uk/live-well/sleep-and-tiredness/the-energy-diet/