Hello, delurking, & thanks: Well, I've lurked here on... - NRAS

NRAS
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Hello, delurking, & thanks

lily2003
lily2003

Well, I've lurked here on this great forum long enough. Here's my long saga. Feel free to skim!

I joined early summer 2018 soon after a June morning when I woke up, Googled "stiff fingers upon waking," and knew, somehow, that I had RA. My GP ran rheumatoid factor and anti-CCP tests along with CRP/SED and, although my rheumatoid factor was a low positive and the CRP/SED were normal, my anti-CCP was (literally) off the charts. Here, in this town in the US, the labs apparently cut off at 250 and my anti-CCP was past that.

Still, despite my stiff fingers, tender knuckles, and having had the past two years filled with bilateral shoulder agony and repeat physiotherapy, my GP said, "Trust me, you don't have RA." I did get to see a rheumatologist, but the digital records between the GP's office and his did not coordinate and so he never saw x-rays. I guess my lack of visible inflammation and the normal CRP/SED made him say that he, too, didn't think I had RA.

By then it was early fall 2018. Between the June morning I Googled and that fall rheum appt, I had researched continuously. I'd done what many here have done and continue to do: read official medical papers online, doing the best to glean any helpful info despite the complexity and length. I read other forums, I read blogs. I watched videos. (I joined this sane oasis.)

I knew I had RA.

From that fall 2018 rheum meeting and through to late summer 2019, I tried so hard to believe the doctors. I still read papers and sites and blogs online. I still read posts here. But I hoped, until I could no longer. I looked up at the mirror one warm August day and saw my elbow had become a little balloon. It didn't hurt. I only felt it when I put my elbow on something (which, I guess I don't often do).

It was a popeye elbow (olecranon bursitis) and that was the sign I didn't know I'd been waiting for. Saw the rheumie again and got the official diagnosis. Because my CPR/SED rates were (and still are) normal and I didn't present with very much pain, relatively speaking, he started me on just 7.5 mg MTX/week and 1 mg folic acid/day. Within a week, all pain in my shoulders was gone. It was quite dramatic, so much so, that I wondered if maybe it was just coincidental. However, my fingers didn't really show too much positive change when I met him 6 weeks later. In fact, some minor deformities had gotten worse. I should also add that he finally ran x-rays which showed quite a few erosions, even on joints that have never really bothered me. He increased my MTX dose to 12.5 mg/week.

I was taking 200 mg ibuprofen/day because of persistent tendonitis in my inner left ankle. But this week, I've decided to stop that. I'll still take an NSAID now and then, but I don't think, for me, months and months of daily ibuprofen is what I want. It's only been a week since I stopped the ibuprofen and most days have been very tough with "tinman"-itis. But today I feel pretty good -- even my ankle.

So, since this is a pretty good day, I decided to finally delurk. I want to thank all of you here. The conversations have kept me from feeling completely lost and alone. As I mentioned above, they've kept me sane and grounded. And they've given me so much hope. So thanks all of you, my fellow NRAS-ers. I'm honored you let in those of us non-Brits.

Thanks!

19 Replies
oldestnewest

Hi Lily welcome to our forum x

Hello and welcome Lily, so glad you’ve taken the plunge and de-lurked 😊

A good word, delurking! Glad you found us useful, and then things have looked up for you. Fingers crossed for the ankles (or should it be toes crossed?).

lily2003
lily2003
in reply to helixhelix

Some of my toes are already crossed! :)

Another long story, but googling “RA feet” in 2018 also shocked me with pix that resembled my feet. I’d been proud of my crooked toes since I was a kid; proud that they appeared to be inherited from my dad and my grandmother (his mom). I always thought they were cool and unique.

I’m still proud they’ve kept me upright all these decades, but now I wonder if they're a sign of an RA DNA connection. Neither my dad or grandmother had an autoimmune disorder, that I know of. However, I’ve been rethinking my dad’s various conditions before he died.

Welcome Lily glad you found us. Hope your treatment continues to work for you.

Welcome

What a great post and lovely piece of writing too. This forum does stop the awful feeling of isolation and gives great info and support too. A personal question - are you just 17?

I hope things improve greatly for you.

lily2003
lily2003
in reply to Kalimers65

I’ll always be 17 inside myself! :)

Funny, 17 is the age I always say when people discuss how they view the world. However, I’m officially, chronologically 64.

Kalimers65
Kalimers65
in reply to lily2003

Ah I see. Yes I’m about 18 but somehow my passport says 67! Are you carful with your diet Lily? I think , like others here will say, that a good healthy diet of lots of fruit, veg ( especially green veg ) no red meat , lots of healthy home made smoothies and water really helps. I was in a bad way last August, my CRP was 90 and my consultant wanted me to go on biologics which I didn’t fancy as I look after my little grandsons a lot and pick up their colds so I went 80% vegan, gave up coffee and red wine bar the very rare one as a friend said they were acidic and bad for RA. My last blood test was 12 and I feel so well. ( I'm on Sulphasalazine ). I’m waiting to get results of my blood test last Thursday that the consultant did. She said if it’s 3 I can start reducing . Since August I’ve been having reflexology each month too. RA has been with me on and off since I was 38 and I’ve had periods of remission before with no meds. I have been very very lucky and it must be awful not to have them. I just pass on my story to you Lily in case it might help.

lily2003
lily2003
in reply to Kalimers65

Thanks for your story, Kalimer65. Good luck on that blood test result; sounds like you're going in the right direction.

As I mentioned above, my CRP/SED inflammation markers have always been normal and, for someone with such a high anti-CCP result, I didn't present with swelling (until my elbow) or even great amounts of pain (other than my shoulders, which, it seems, doctors don't take as first-line evidence). I think my lack of inflammation and overwhelming pain is why the rheumie started me at only 7.5 mg MTX. I'm now at 12.5 to keep deformities from progressing.

Another thought my rheumie had – which I also had – is that I've been vegan for a very long time. And, about 7 or so years ago, I became a whole-food-plant-based (WFPB healthline.com/nutrition/pl... vegan. Well, a vegan diet is already plant-based, but it was the whole food part that I changed: minimal, if any, processed food, minimal to no added sugar, minimal, if any, added oils. I'm trim and walk an average of 3 miles a day (so my Apple watch tells me).

So, it does seem that someone pretty healthy with a healthy diet can suddenly be burdened by an autoimmune disease.

Kalimers65
Kalimers65
in reply to lily2003

Gosh Lily you have a great diet! That’s disheartening that you got clobbered with RA in spite of that. I hope you didn’t think I was preaching. I just wanted to share my experience in case any part of it might help. May be it’s a coincidence that I feel so much better and not much to do with a vegan diet at all! Very best wishes to you and I know how painful RA is when it’s in your shoulders, especially when you’re desperate to have a good sleep.

Where are you in the States? I travelled all over the States on the greyhound buses when I was 22. Loved it!

lily2003
lily2003
in reply to Kalimers65

Not preaching at all! It's great advice.

I've delurked (I can't take credit for that word, btw), however, I think I want to take my time with more details that might pinpoint my identity. I'm still working and would rather clients and potential clients not know about my RA unless I feel it's right to tell them. And I want to bide my time with the health industry knowing. (Google has no doubt sold my soul on this point by now, I expect…)

I'm sure I'll tell more by and by…

Kalimers65
Kalimers65
in reply to lily2003

That’s absolutely fine Lily. Primarily I wanted you to know that I had a great 6 weeks all those years ago. I studied English and American Studies at uni do visiting the States was very important to me.

AgedCrone
AgedCrone
in reply to lily2003

What business is it of your clients to know/not know you have RA?

It’s not catching & unless they want you to run a marathon with them, they probably wouldn’t be bothered.

I have never had anyone except friends comment....except to wave a finger in the air & day they have it too....although on questioning it’s usually OA they have!

As for the health industry,,....they only need to look on Pharmacy records, & there we all are...Busted on Dmards!

Hi lily .

This disease is isolating and frightening and I’m glad this site has been a help. Your very much on the ball and much more proactive than I was . Told I didn’t have RD even though had symptoms for many years . I should have believed in myself more.

Welcome lily stay in touch.

lily2003
lily2003
in reply to J1707

I believe it’s been your posts about your ankle suddenly clearing up that have kept my mood up about my own left ankle since last July. So thanks so much, J1707.

J1707
J1707
in reply to lily2003

Delighted I’ve been of help... there’s always hope 😁

Hi and welcome it seems you’ve had quite a journey already.

There are many of us who have had similar issues with awaiting diagnosis and feel that we knew there was something wrong even if blood tests said everything was ‘fine’.

Hoping the next stage of your treatment is very positive for you. Glad you decided to post because everyone’s story or journey helps to inspire others and some of us have made informed choices because of others posting what things have been like for them.

It helps so much too to know others have your back and know what you’re going through and have others believe in you even if sometimes the medical profession don’t. No-one will ever know your body like you but support from this forum is invaluable.

Hiya Lily, welcome now you've felt comfy enough to delurk (good one!). I'm pleased you find being here has helped but so sorry that despite your GP being on the ball enough to test you appropriately for the symptoms you presented he didn’t refer you to Rheumatology sooner. Most us us oldies now know that blood tests aren’t the be all & end all but looking at & listening to also mean quite a lot when presented with a patient who isn’t 'well'.

Anyway, I hope you'll become a regular sight now & hope things continue to improve for you. As you found, sharing experiences can really help & in some give them the impetus to push forward an unsure diagnosis. ☺️

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