New and confused

[Kathyk]

Hello everyone! I have been reading posts on this site for a while and have decided to take the plunge as I feel I need some advice. I was diagnosed with RA a few months ago and seemed to be doing ok on the methotrexate when I had a nasty chest infection and everything went downhill. All my joint pain symptoms came back with a few new ones, and now that the infection has cleared up I am left with rice crispies noises every time I move (from the joints I hasten to add!), daily fatigue which comes on after an hour or so of activity and stiffness in the ankles which never really goes away. The pain in my hands remains, although not as severe as it was. I have been off work with this for two weeks (first sickness absence in five years) and am worried about my ability to return to my job (which I love) next week as planned. I feel as if my body changes every day, and I find something new to prompt the question "is this part of the RA?". Like really dry skin and vertical ridges on my nails, the latest development. Or am I just a hypochondriac and turning very little thing into a disease?

[bassiefromholland]

I have RA for over 20 years.ntge last 2 years with bad inflammation. You aren't hypochondriac at all. It looks like inflammation. Lot of the symptoms you ave I have got also. I started with infusion of Roactemra/Tocizilumab last week. I hope it Will get the results I hope for and I hope your RA Will get controlled soon. I wish you all the best!

[Kathyk in reply to bassiefromholland]

Thanks Bas, and hope you get some relief from the meds.

[Hidden]

I so relate to everything you are saying about yourself. It really does get to the stage where every little thing, which in the past we would have dismissed as insignificant, becomes a potential symptom of this disease or related connective tissue problems.

I'm four years in and have so many symptoms which can't be accounted for that I've just very recently decided to blame them all on my RA. So now if my nose starts bleeding suddenly and people look a bit horrified I'll tell them it's just the disease - even though I think it's actually Sjogrens dryness. Or when I'm doubled up with tummy pain I'll tell my family it's all part of RA whereas it's more likely to be my gallstones or gastritis or a reaction to years of NSAIDs. Same goes for skin.

My youngest son laughs at me quite a lot because I'll be comparing the ridges on my nails or weird spots or whatever to his or my husband's and he says it's just nothing/normal to have odd rashes, nose bleeds, sores in nose, ridges on nails etc.

My GPs similarly often dismiss things as just OA/ wear and tear or hormones or ageing or gastritis. They may well be right but it's all happening to me in my body and this disease is very insidious. So blaming RA for everything helps me psychologically and it also helps educate people who think it's just arthritis - I think even my GPs have learned quite a lot more about RA from having me as their patient! I actually feel quite liberated by having this disease to scapegoat now and plan to avoid doctors until i really can't where before I've always taken weird new symptoms in to show them for identification and reassurance.

Oh and I do have horizontal ridges on my toenails which probably relate to drugs rather than systemic disease. Vertical lines are usually put down to ageing from what I've read.

I have also had flu followed by pneumonia so I understand how totally wiped out you feel. Hopefully you will rise to the challenge of getting back to work but I don't think many people's workplaces would make someone redundant for being off for a few more weeks with a chest infection and RA flare up. My flu started early in March and I'm still feeling very fragile and need to sleep an hour or two every day. So please go gently on yourself and get another doctor's note from GP if you need one.

It's very early days for you and a lot for your brain and your body to take in. Be kind to yourself and keep posting. Twitchy

[Kathyk in reply to Hidden]

Thanks Twitchy. Great to hear that I am not alone. I quite like the idea of just blaming everything on the Ra and just getting on with things as best I can. It does put things into perspective when you think "if I hadn't been diagnosed would I be worrying about dry skin? No, I would just get some hand cream!"

I hope you are feeling well, and thanks again for taking the time to reply.

[Hidden]

Really pleased to have been a bit useful. It helps sometimes just to accept but it has taken me four long years so you must be a quick learner! X

[allanah]

Hiya! Great you have posted here!

I tend to write down and take pictures of what I notice and take it to my Rheumy meeting. He says ye or nay!,! Xx hope the drugs kick in very quickly x

[Kathyk in reply to allanah]

Thanks Allanah, I have started keeping a diary of stuff to talk to doctor about. Hope you are keeping well.

[pm52]

Hi, I have psoriatic arthritis and take mtx and enbrel. I too have terrible problems with my nails, ridges, splitting and breaking, apparently it is all part of this disease so probably the same with rheumatoid too. I experience flairs when my joints are extra painful and the fatigue is terrible, my body feels like lead, but enbrel has helped this tremendously. So be assured that this is all part and parcel of these auto-immune diseases, sadly, hope your treatment helps.

[Kathyk]

Thanks pm52. I wasn't sure if the nail thing was only if you had the psoriatic type of RA or if we could all be lucky enough to get it ;-)!

I will show them to the doc at next meeting, see what he recommends (probably a manicure...)

Best wishes,

Kathy

[allanah]

Let me know K cos mine are so split and sore at the moment too x