Has anyone else found their RA-like symptoms have gone into remission without the help of medication I wonder? I'm asking people to try and recall if this happened at all during the waiting-for-diagnosis period in the early days of their RA? I want to jump and shout and celebrate - and am doing so inwardly as even for a few weeks it's wonderful being almost pain free!
It all seemed to go away at the start of my first period in a year and a half and, having believed I was post- menopausal until this period, I have now read that there is such a thing as menopausal joint pain.
I say almost because hands still ache and I get terribly tired these days but I'm sleeping well and my feet and legs have not a twinge of pain - except for at night when I usually wake to some familiar pain and stiffness in knees briefly in the morning but then as soon as I get up it goes away. Should I stop haunting you all with questions and just say how very lucky I am or has this happened to others and then it's all started up again? I know I will get seriously depressed if it does so want to be realistic here. Sorry to keep asking all these stupid questions but the ups and downs, pains and uncertainty of everything has been so stressful this year.
If any of you have had similar experiences of periods of remission prior to medication to relay it might help me not to allow myself to get overexcited quite yet?
That is great Tilda, they do say that with sometimes it can burn itself out, lets hope it is true for you! Did you have a positive diagnosis for RA with bloods etc? I have read something about RA being linked to falling oestrogen levels, not sure what age you are?
I think for the moment it would be good if you just believe it has gone, and certainly if you are not positive in your blood for RA.
Just enjoy until proved different. ( and hopefully has burnt itself out )
Best of luck, Gina.
Hi Tilda, if your feeling better then that can only be a good thing.
Haven't you had your Anti-ccp results back yet seems a long time ago since you said you had them. I'd give them a call and see what's going on.
You may have a point about the menopause, I know some women who have had symptoms of RA whilst going through the menopause, some unfortunately have been diagnosed but some haven't, even though they had the symptoms.
I would just enjoy yourself at the moment.
I'm sorry to say though that you can't really call it a remission if you haven't yet been diagnosed, if you think about it it doesn't make sense. Like you say your still waiting for a diagnosis, and you can't have remission unless you actually have the illness/disease. Sorry I don't want to sound negative, if I've mis-understood you somewhere then please accept my apologies.
Take care
mand xx
I had a low positive for my rheumatoid factor (24 I think) and still not sure about anti-ccp result because the rheumy hasn't let my GP know and i don't have a number for him to find out. I've been assuming this must mean it was negative though.
I thought I'd wait a few more weeks and then go back to my GP once I have the results of hormone blood test in a week or so. I think a lot of things that happen to us relate to rising and falling of oestrogen levels you are right. I researched this a bit today and read that joint pain during menopause is quite common and sometimes cripples women briefly even. This is because oestrogen is low and this lowers the body's ability to absorb and tolerate pain. Nothing mentioned about RA in this context though but I feel sure they are linked because of the amount of people who get RA after having babies and druing and after menopause?
No you're quite right Mand and many thanks both of you. I suppose my GP was so assertive in the first instance that I had RA that I felt like I must have - but now of course it isn't remission it's just either a lull in symptoms or an end to them (desperately hope!). Last time I saw him he still thought it was slowly developing RA and apparently that is the most common way that this disease progresses. He said it was my family history of autoimmune diseases and at least one instance of RA in a first cousin that made him think this way. I will ask him to get the anti ccp results for me next time I see him.
I am definitely enjoying the lack of pain 100% but just know myself too well and don't want to fall into trap of saying it's all over and then finding it all comes flooding back and being devastated. That's why I'm asking people if this has happened to them and then things have got bad again. I'm trying to live in the moment but it's not really in my nature - I guess I am always on my guard because bad things have happened very suddenly to people I've loved (car crashes, heart attacks,death by misadventure etc) and this makes me a bit wary of getting complacent ever. Sad I know but it's just what I'm like - sorry?! Tilda x
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Either way Tilda I wish you good luck and hope you don't have the dreaded RA and it's connected with the menopause.
The problems us women have!!
Take care and don't overdo it either.
mand xx
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Tilda,
My symptoms were on and off for years in my 20's, complicated by another disease and steroid use, but what you're saying does sound very familiar I would think 'oh, it seems to have gone' until it returned. I know now that I was flaring when I had kidney infections and it was grumbling along in the background the rest of the time (hands, feet, elbows and knees).
Why not just take life a day at a time, fretting about it won't change anything, so it's either a 'good' day or 'better' day or 'bad' day - and like the weather each of these days passes
Cece x
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I am trying to take life as it comes most of the time Cece (lovely name!) - currently visiting oldest son in Edinburgh and having to hurtle from chore to chore for him so it would be hard work if I'd still been ill. It just niggles away at me - is this a miraculous burning out or is it still there do I have it, will I wake up in horrible pain again tomorrow and so on blah blah.
I realise this probably sounds tactless to all of you who live with this horrible reality day in day out but a few weeks ago I was in lots of pain too and decided it was best to assume that I had RA and deal with it. Now I've got to wait until mid November for 2nd consultation and no one else where I live with any expertise or experience to discuss it with you see. But I'll shut up now and enjoy each day and night that I sleep and wake relatively pain free I promise. Weather here is VERY erratic so hope for more continuity! Tilda x
Hope you're ok tilda, the weather here in Edinburgh is on/ off. I hope your symptoms continue to abate, it's impossible to know though isn't it. Bit of a cloud over you. Have you had an esr result? In Scotland they don't seem to put as much weight on crp, and I think it is a bit of a short term result, while esr gives longer term picture. Those more tuned in to the scientific definitions should be able to confirm. But I'm sure the blood results shouldn't take this long, it's normally a couple of days here to get it back.
Hi Tilda,
I went into remission for a few months but then again I was pregnant........your not pregnant are you??????
sorry, silly sense of humour, thats great your feeling so good and to feel like that without any meds is amazing. Will keep everything crossed for you....
Strange weather here also, but at least it not snow yet!
Hi Tilda, if you feel blessed then enjoy it! As others have said, it's quite important if you have RA to develop a calm approach to life & pacing yourself so you learn to live as much as you can when you can, and try not to get too down when things are bad. And if you haven't got RA then developing a zen like calm can't be a bad thing either - so it's win:win if you can minimise fretting about what might or might not happen and enjoy where you are. Having said that I too have had days where I was sure it was all a big mistake. So far none have lasted that long, but I'm hopeful that one day I'll feel fine. Polly
Hi thanks to you all. Well I blinking well hope I'm not pregnant Williby! I think it's all related to hormones and the fact that symptoms appear to die down in pregnancy is part of the same thing probably. Too coincidental that the chronic pain disappeared for me with the arrival of my first period since April 2010.
Driving back up the way now in thick drizzle. Legs siezing up with stiffness after a few hours in the car so we stop soon for a lunch break and walk dog quickly. Better stop this as getting car sick now I'm writing but just wanted to thank Cathie for understanding that still got a wee dark cloud of uncertainty hanging over me that can't fully shift. The ESR or CRP was 30 coming down he said about 3 weeks ago so that makes sense too. Not sure what became of anti CCP but the consultant hadn't had it back when he wrote to GP and think that takes longer to process for the lab. As I said I guess thateans probably negative but it would help to know. Still got to find out what hormone test says and see gynae so I'll hopefully get to bottom of mystery one day soonish!
I think you're right Polly to say we learn from adversity and I've learnt tons for sure so whatever the outcome I'll be a thinner wiser version of me even if my hands are now always a bit feeble and achy and I do get very tired these days - at least I'll have learnt how to pace things better as a result! Thanks all. Tilda xx
Ps just stopping off for my OH to visit a garden centre right by the Nairn / Aberdeen exit Wiiliby - thinking of you nearby and your little gems in yet more drizzle! Tilda xx
ahhh, I know the place your going to/been already, howdens?
for a minute I thought you were passing nairn and thought great!! pop in for a cuppa, but doh! your not and that was ages ago
and, you never know Tilda, I could be a pshyco mad woman with hundreds of cats!!!
if you are ever planning on passing through give me a shout and I'll hide the cats
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Lol!! you have a wicked sense of humor, we should see/hear more of it!
When you said above about being pregnant, it so made me laugh. It's what we need sometimes a bit of humor on the site!!
mand xx
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Well I am glad it made you laugh Mand! - I can't think of anything more nightmarish than finding I was pregnant at the age of 48 (and a half) with 3 teens and some tantalising glimpses of freedom peeping at me just round the corner - can you?!
Until a few weeks ago I'd been thinking "Phew at least that's all over and done with" and now, following that unexpected period, I'm thinking "heck even the occasional bonk has to be planned for once more". Hubby going online for contraception just in case I wake up for long enough for the use of... otherwise I guess we can always pass them down for the next generation?
And on that front hoping that sons are with it about birth control too (they seem fairly savvy to us but you never know) because I'm certainly not ready to be a granny yet either?!! (deleted below because I tried to do those smiley faces and failed and then tried to LOL but it came our wrong too - put it down to whisky and horror at mentioning S*X at my grand age?!)Tilda xx
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Hi Tilda, I'm glad you saw the funny side of my comment, after I'd submitted it last night I had second thoughts thinking I may have upset you by laughing at wiliby's comment.
So, I'm glad I didn't. I suppose we have to have a sense of humor with RA, laugh or cry as they say.
Take care Tilda
mandxx
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Hey I'm really hard to offend Mands!
I get a bit worried/ overly sensitive that I shouldn't be here on this site but I seem to need it until I know that i really don't if that makes any sense?!
And I think everyone needs a sense of humor to get through life - I know no one who is exempt from pain or strife of some sort and know quite a few who really struggle because they can't laugh about things and let it all weigh them down so much. Laughter gets us through it all a bit better I've always found.
To make you laugh on same topic - a woman who came briefly to our choir asked me when my baby was due a few years after I'd given birth to last of my kids. I came up with "Welll any day now actually - oooh oohh oh here it comes get the kettle on now!" and had everyone else falling about laughing as this stupid cow got up and got the kettle on! She was mortified but honestly...?!
Tilda x
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LOL!! very good Tilda, I would loved to have seen her face!
mand xx
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Hi Mand, if you ever met my husband you'd totally understand where I get my sense of humour, he's a complete bampot, I'm the quiet one! and my poor students, think I've traumatised a few in the past xx
Ha ha we had our dog in back of car and he gets beside himself over cats! Ended up racing for the boat as usual - we always estimate it wrong but then we should take into account the slow traffic through drizzle and fog up hair pin bends for the top half of the journey but somehow it always slips our minds! I slept through the garden centre part I'm afraid to admit.
So blinking tired these days I could sleep for China?! Would love to pop in on you one day though and meet the toddler who looks SO adorable. I take it you decided not to return to work yet then if you are home on a Friday? Still a tad achey and stiff but really nothing on what has been so feeling very upbeat. Just pigged out though so must make sure that relief and high spirits don't lead me astray on the plan to get down to target weight (2 stone still to go!). We are home to find youngest son (14) has been off school with a flue thing and middle one is out at a nightclub listening to live music - hopes to be back sometime (the early hours he means). Heck there's no escape from parenting - it's either trolley dashing round Edinburgh Asda with 19 year old or cleaning up after a week of teens home almost alone (a GP friend kindly house sat but was out working mostly). Take care and keep the kettle boiling (for us not for cat litter mind) we'll be by one day! Tilda x
Hi Tilda,
Hope you had a safe journey and are cosy at home now, not going anywhere today, so dark and drizzly but we're all nice and cosy
I don't really have any cats, but do have a dog (who loves other dogs) and as I said to Mand, a husband who should come with a health warning!
Your right, not back to work yet, was signed off for a further 6 weeks, doctor thought I shouldn't rush back until we have the okay from the consultant who I'm due to see at end of this month. I have mixed feelings about that, I love my work but to be honest although I am so much better I'm not sure how I could handle it just yet..
Hate diets, I am trying also, been a whole 2 days!! all I can think of is food, I lost a lot of weight with the onset of RA but the past month or so it's started to go on, I wonder if it's the Enbrel I started 7 weeks ago...
Your situation is a strange one, I think I mentioned to you before I have a friend that happend to, full blown RA for 4 months and then it just went away, that was 8 years ago..... oh I so hope it doesn't get bad for you again.
must dash, baby waking up, take care & have a good weekend x
Thanks Williby - sorry I think I landed a bit of a preachy one back on your question post earlier but it just all set me thinking (displacement for getting up to our studio and working while I can or walking dog in howling gale and rain - yiuck!).
Re diets I'm starving but have gained a couple of pounds down in the City where temptation is everywhere. Here in our house at least it's just the contents of our rather smelly fridge or dry, gluten free meusli but must do a shop later to change that. Our freezer seems to be turning on and off so got to polish off the contents over coming week so that's going to be interesting re diet also. Luckily lots of frozen berries to divert me from the ice cream and the bread!
I woke twice last night with pain in various parts - a finger and a knee mostly and I still get very stiff and sore after lying or sitting but it seems to go away once i move now at least. I'm taking all your advice and living for each day though and TRYING to learn the art of patience. This has been 8 months since it all kicked off and I don't think I would have thought of RA if my GP hadn't been so adamant after the positive factor result. If I'd been negative for that I don't think I'd have been any the wiser but I'm hoping to be like your friend and just be experiencing the last twinges and after effects now.
Hey Ho - must go and think about making some lunch - lentil soup sounds about right! Big kiss to the baby for me - mine is 14 now and is still in bed but then he has got man-flu!
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I would think 'oh, it seems to have gone' until it returned. I know now that I was flaring when I had kidney infections and it was grumbling along in the background the rest of the time (hands, feet, elbows and knees). 
Is this RA or not. I'm very confused
Swollen neck joints 
Zero negative RA
Terrified to start tis drug
The big question for those who's pain has ever vanished for a long while...?
