Strange coincidences?

Hi has anyone else experienced the sudden disappearance of RA symptoms after six painful months, apart from a residual slight ache in hands and feeling of fatigue and still the deep heat in feet and wrists sometimes? I've been almost pain free for four days now. I'm not on any medication apart from Amitriptyline and this fading of symptoms has coincided with a post menopausal bleed (over a year since last period) and the quitting of caffeine and dairy products and also a lowering of ESR to 30. I don't want to count my chickens though and am going for a GP check up in an hour re the unexpected period (womb biopsy) but it all seems a bit coincidental and your thoughts and experiences, if at all similar to mine, would be much appreciated.

[Gina_K]

fingers crossed Tilda anything is possible.

[Hidden]

Hi Tilda,

I feel like you are following me about!!! This happened to me about 4 years ago. There had been a whole year between that and the last. I thought that all the aches and pains had been due to the build up before the bleed? It is so weird.

I have found this site - can you relate to this also - this was how I was.

palindromicrheumatism.org/s...

[Hidden in reply to Hidden]

Click on the "symptoms" at the top of the page... x

[Hidden]

Thanks Gina fingers crossed yes! Now crossing fingers for test results re hormones and not having uterine cancer as well but my GP thinks that it's more likely that my menopause isn't yet over and this is a straight forward period. As I can't recollect when I last had one this is quite likely - although the last one I recall was well over a year ago now. She also wondered if the arthritic attacks of recent months might possibly have been hormonal but has never heard of anyone having them so dramatically as a result of menopause before. She is wonderful this GP - we get on so well but unfortunately she only works part time because of having young kids so is often not about. She said she would feel exactly the same way about this uncertainty as I have been and was terribly sympathetic and has taken loads of blood 4 lots) and referred me to gynae and for a scan.

I do indeed feel I'm stalking you too Julie - sorry! Thanks for giving me a bit of a reality check re over enthusing about vanishing of RA symptoms. Yes I do relate to the Palindromic symptoms very much but again, despite raised ESR levels I notice that swelling has been mentioned and my experience to date has mostly has just been pain. The heat in my legs today has been dramatic - like wearing high riding boots with thermal insides. If it wasn't for you I would put all this down to still being perimenopausal as GP mentioned these being unusual hot flashes again.

Actually I almost emailed you privately this morning I was so baffled by this heavy bleed combined with vanishing symptoms - but then this GP pointed out that what I experienced over last few weeks might well have been a flare and now I might be experiencing the lull or aftermath. Still here I go doubled up with period pain like a silly teenager - craving hot water bottles and checking my breeks every hour! Tilda x

[Hidden]

Julie I take it back about the visible swelling sorry - i went on to read this; "Your body (as in my case) can be like a pinball machine with pain, stiffness, aches (niggles) or numbness just going from joint to joint or several joints together at once. This is because inflammation is present in the sub levels (not visible by the eye) of all the joints and that is the pain you feel but can't see. So even though you haven't a visible red swollen joint because of the amount of inflammation present, you still get the pain."

[eve5]

morning tilda

Can't completely say "it happened to me too" because I am taking mtx but I have "gone vegan" for the past couple of months and whether it is just that i feel I am doing something proactive, but definitely feel better for it, and much less fatigued. Having revolved my life around not being too far from my bed during this first year from diagnosis, for the last month, I have been out on my bike most days (weather permitting) - only a ten minute spin round the block - but this in itself has added to my sense of wellbeing knowing that I can do it. I wonder what brought you to the conclusion of following a dairy free diet?

.....eve xx

[Hidden]

Good to hear from you Eve. I started on a gluten free diet back in May to see if it would make any difference. When all the joint pain kicked off initially I had a sense that I was being poisoned by something I was eating. Can't explain why but with the joint pain came a terrible taste in my mouth for a few weeks and that left me with this sense? So I have been gluten free ever since. It hasn't done much for my joints or the pain but overall has been great for my body and I haven't had a twinge from my gallstones for ages. But along with the desire to get rid of pain somehow i also wanted to lose weight because have a family history of diabetes 2 and was extremely overweight - 4 stone to be honest. ]

So I'm now down by over 2 stone and some of that has been due to loss of appetite but some has been from being gluten free. I had plateaued with the weight loss though so thought I'd kick start it by dropping dairy for a while. i have a grand passion for cheese so this is hard. But by dropping dairy (apart from a bit of natural yoghourt with my gluten free meusli and fruit I find that because I don't like coffee or tea without milk I also cut them out too without meaning to. So this started on Friday and immediately the joint pain went - but admittedly now getting more and more twinges back in the night. But it's still largely gone and I'm able to get out of bed in the morning without dread and hobble or even bum shuffle down the stairs etc. I wanted to do this experimenting before MTX or whatever comes my way further down the line. Really interesting to hear that about your vegan diet and bike riding. I have made myself walk everywhere even when I was in bad pain in feet or knees - almost more then to try and lose the pain and swelling and that seems to work for me too but then I'm aware that i've not been nearly as affected as some who can end up in wheelchairs or unable to get about so this is just me. If found I didn't move about a lot I'd pay for it and be almost unable to. But I am wondering if cutting milk and cheese/ caffeine out has done the job inadvertently and it has also kick started the weight loss too. Sorry such a long ramble but i find the diet/ RA thing so interesting! Tilda xx

[eve5 in reply to Hidden]

it's funny isn't it that someone can say something that triggers a memory - you did it when you mentioned a bad taste in your mouth. I had it in the early days and just thought it was the pills, still could be I guess in my case of course. But absolutely agree that the diet/RA thing is fascinating. When I was first diagnosed a friend said she knew someone (and I cant remember the story exactly as to what qualifications this "someone" had) but that she had helped several people by recommending a "no animal" diet to several rheumatoid arthritis sufferers and that they had been cured. At this point I was in so much pain, couldn't lift the duvet, open doors etc and a wrist that felt as though someone was continuously pouring acid inside it that I didn't want to do anything except take conventional medicine and get better. I read somewhere that when you have chronic disease this is the time that you start to take proper care of yourself and I thought again about this no animal route when I too wanted to lose weight about three months ago. (Must be something about living on our line of latitude - we have a house in aberdeen although we are temporarily based in holland at the moment - it is so cold we need the extra layers!). I am not silly enough to believe that I will actually be cured but I am curious and plan to keep at it until christmas and then reassess myself.

Well done on the - 2 stone and so hope that your recent tests show nothing untoward.

.....eve xx

[Hidden]

Also found this somewhere notmilk.com/forum/798.html

[cathie]

Just sending warm thoughts to you while waiting for the porridge! My ra coincided with menopause. Not much more to add except solidarity!

Xxx

[Victoria-NRAS Partner Moderator NRAS]

Hi all

Diet is a subject that often crops up with regards to rheumatoid arthritis, and we have certainly spoken to a number of people that have cut out certain foods and found some improvement to their symptoms. However, it seems that which foods you might benefit from cutting out of your diet varies from person to person (and in some cases changes to diet might not affect the individual at all). Arthritis Research UK have a good source of information on diet that might be of interest to some of you:

arthritisresearchuk.org/art...

Kind regards

Vicky

[Hidden]

Hi again Eve and thanks for links Vicky. As I've said the caffeine and dairy elimination was just an attempt to kick start the weight loss again but I will research the diet related material you mention Vicky. I know I've experimented with being dairy free before because of chronic eczema when young and in pregnancy etc and it made no difference. But i guess it's all about changes, primarily hormonal ones I strongly suspect. Diet and hormones go together I'm sure and I wonder if big weight loss has also kick started my periods now i think about it? I agree with you Eve that there's nothing like the threat or reality (diabetes and RA) to wake us up and make us take better care of ourselves. How are you finding healthcare in Holland compared to Grampian Eve? Tilda x

[eve5 in reply to Hidden]

Hello again Tilda. Apart from the language barrier, my very lazy dutch and the rhematologist's not amazing english (so always attend with dutch husband) I find him completely charming. At my first appointment he almost apologised that there were only two rheumatologists working the hospital group but they were hoping to add another one shortly. I get seen at regular three-monthly intervals, but this also means officially I only get bloods done once every three months as opposed to once a month in the UK; but I feel like cinderella when he gets on his knees to squeeze my toes.

And having a chest x-ray was quite a culture shock. A young, long-haired, necklace-wearing dude of a radiographer had me disrobe in a cubicle and walk in to be x-rayed top half naked. OH thought it was quite normal, well I guess it is if you are a man with no boobs, I can laugh about it now but at the time...mortifying. Though it did lead me to ponder the savings for the nhs with no robes to wash but not quite sure we're ready for the red hot dutch way of x-raying yet.

The GP here is not so clued up on RA and just threw into the conversation that he had another patient with RA who was on humira and was doing well on it and I should ask the rheumatologist about having it - hmm - I don't quite think it works like that. But to be fair to him this is a small seaside place with not many full-time inhabitants.

I am more than happy with the service of the GP practice doctors and nurses in Grampian and the rheumie is always just an email away which has been reassuring on the occasions I have needed to contact him so guess I have been quite lucky in that sense.

.....eve x

[Hidden]

Ps sorry Cathie should have thanked you for menopausal solidarity too!

PPS I guess we will have a better idea if after a resonable while we reintroduce meat, dairy, gluten and let each other know whether this coincides with flares etc?

[Hidden]

Thanks Eve I was intrigued to learn about Holland's approach to RA. I love the Cinderella story but would have passed out in horror with the X-ray situation. Maybe when I've lost the next 2 stone - but even then I'm really self conscious so I'd have just snuck away rather than be disrobed I'm afraid - prudish Brit that I am. We don't fair so well up here with the Grampian/ Aberdeen rheumies - mine didn't give me a number and we only get seen every 4 months by ours. There are no rheumatology nurses to ask about side effects etc once on treatment and I've got to wait until he's up in November for next probably inconclusive consulation. They seem to think this is the punnishment we deserve for living here but Grampian has the contract with NHS Orkney so it seems rather poor that islanders fare so much worse than residents of Aberdeenshire? I know people who been shoved out of wards following major surgery and have ended up passing out at the airport on the way home. I had to go and find a wheelchair for one woman a few years ago after she'd had a hysterectomy.

Don't even yet have anti-CCP test result back but I imagine that means it can't be a loud positive or surely he would have told my GP by now? I'm really at the mercy of one of two consultants who gives a fairly brisk assessment and our GPs. It's quite tough I admit but then again it's at least buying me time to experiment with food ellimination and excercise which is good. It would be different I imagine if I'd been completely unable to walk or move and had lots of visible swelling and very high positive test results and ESR. I think that would have warranted being flown down to Aberdeen but who knows? They probably know a bit more than your people in sleepy seaside village in Holland - but not a lot more it seems to me! Still relatively pain free although wrists and thumb joints are throbbing again and was woken with pain in the night. Sticking rigidly to dairy and gluten free though and a few more pounds have just come off! Tilda x

[Hidden]

Just a quick update. Didn't sleep well and ended up putting splints on because of hands throbbing and period pain intense. Now woken to some stiffness and a sore knee. Oh dear maybe not just dairy allergy or hormonal after all?!

[eve5]

Hello tilda, sorry you've had a bad night. The thing when you are in such pain is that you really can't help yourself much but if you could at least eliminate the stress of waiting for this result and contact the consultant's secretary - I dont think it takes more than two weeks to get results of the anti-CCP test. Do your bloods get sent to the mainland in which case the results should be accessible by computer if orkney is hooked up. Your stories of the treatment of the islanders being hurried out of hospital are terrible, someone needs a word in alex's ear.

,,,,,eve xx

[Hidden]

I don't know Eve really. If I reveal I know as much as I do about the names and reasons for the tests they've undertaken such as anti CCP etc the GP looks at me askance. I get the feeling that he thinks I'm being OTT. The nice woman GP is great and sympathised like mad but doesn't have all the answers and I've only seen her twice in past year because she works part time and is so in demand. I have been in once a week lately and feel they are sick of the sight of me but it's because I've so many unanswered questions plus such weird things going on in my body and no one else to turn to for answers.

Actually I think I'm just feeling knackered today because of the non stop bleeding /cramps and hand aches combined - but she said she'd phone if I was anaemic so I just have to take her at her word I guess. Sick of the receptionist's sigh when I phone about yet another thing! Sick of it all to be honest. Alex ain't interested in these parts because they are lib dem stronghold (although margin closing in quite tight now)! It's only from sitting in our surgery so much lately that I pick up all the hospital gossip - normally wouldn't have a clue!

Thanks for support anyway it is good to have someone to share diet related stuff and location specifics with. I'll stick at dairy and gluten free anyhow as it's great to be losing weight again at least!

Tilda

[LavendarLady]

Hi Tilda,just caught up with this blog. sorry you have had such a bad time but congratulations on the weight loss. I have been on the Dukan Diet and lost 20 lbs but am finding I am getting bored. Have often wondered if going gluten free would be helpful. I am also past the menopause - started it at 42 (my mother was also early) - put on HRT - 5 years later diagnosed with breast cancer. Just can't win sometimes. My mum was told it can take 20 years for the menopause to pass - I still get hot flushes and night sweats - what joy!

Don't remember a horrible taste but did and do get a very dry mouth and throat and lips get very sore as well. Don't know if it is connected.

Hope all goes well. LavendarLady x

[Hidden]

Hi Lavender Lady, I had no idea the menopause could be so drawn out! I've just spoken to a friend who is having hers and says she had a year between periods too so am feeling much more normal. She was having a huge hot flush as we spoke and I made her describe it to me in detail and it sounds like nothing I've ever had. GP thought thermal sensation in my feet, legs wrists, back and shoulders probably was an unusual form of hot flush but I don't get night sweats with mine - just lie there wondering if this is how it would feel to have put feet in microwave. Awful taste lasted two weeks and was like nothing I've ever had before or since - felt as if accidentally getting wadge of soap lodged in a tooth?! It coincided with arrival of joint pains everywhere.

Honestly this time six months ago I was told I had RA and believed my menopause to have been and gone -but now here I am knowing zilch about any of it! And in amongst all this uncertainty there's a strong possibility that we've got a new art job and that one day soon we might move away - so just about everything feels topsy turvey. Sore knee is only playing up if I go up or down stairs this time and hands are just a bit achy but no intense pains apart from menstrual - so have decided that I'm not going to get stressed about any of it. Resolutely not. Now going to sneak a lie down before other half (week of nightshifts) and dog wake and kids get back from school! Tilda x

[LavendarLady]

Hi Tilda, I also went a year between periods and that coupled with hot flushes etc proved to my GP I was starting/going through the change. Hot flushes are a feeling of heat which starts (with me) at about chest height, comes up to my neck and face which go red and I feel very hot and then recedes again. Night sweats are waking up with night clothes sopping wet and having to change the sheets which means waking hubby up who wonders what on earth is going on at 3 a.m.! The HRT was helpful in controlling the flushes and night sweats but as soon as I came off it after 5 years, they were back with a vengeance. I found a herbal remedy Menopace was very helpful in dealing with it. Eventually they did calm down but I still get the occasional one. At one point I was having 30/40 hot flushes a day! Not much fun at all. And flinging wide the windows even in the depths of winter as so hot. Felt I could have crawled into the freezer just to cool down.

Best of luck. LavendarLady x

[Hidden]

Thanks LavendarLady. k I've just come in from work because this blasted period thing is going on and on and I'm having to put feet up now! Joint pain has definitely eased off a lot since all this - feet haven't given me any jip so I think it must be more than coincidence.

The heat in feet is terrific now and also in knees, hands wrists and back. Never in face as trad hot flush and I don't sweat at all with this deep heat - and I believe Julie experienced this deep heat too. So while resting up for 30 mins before I go back up to the studio I decided to Google these symptoms in with menopause and found myself on an intriguing forum - which i guess is American ths.gardenweb.com/forums/lo... - and which so far has made for a rather interesting read (normally these type of random forums leave me as frustrated as before - and often leave off mid flow. I was interested to note vit D deficiency mentioned (could be a big problem this far north and is at the heart of the world's highest MS rate here in Orkney I'm told) and also something called "parvovirus B19" which is the adult version of slapcheek that kids get and causes joint pain and is often mistaken for RA? Well we will just have to see. For today I'm just proud at having resisted some very tempting looking cheeses, meatloaf and cakes when out with other half - I just had dairy free salad, soup and a glass of water while he stuffed his face - halo glowing at my fab self discipline at least!!!

[LavendarLady]

Hi Tilda, Yes in the Orkneys I would imagine sun light is deficient. You may need to take a Vit D supplement. Have a word with your Doctor about that.

Glad to see a halo is glowing as long as it is not a hot flush!

The feeling of heat everywhere could also be your meds as I get hot feet as well and sometimes feel heat in my joints. I am on MTX and anti tnf Enbrel.

LavendarLady x

[Gina_K]

Just reading this blog now. I have read that fluctuating oestrogen levels have been linked as triggers for RA. They don't really know (or care maybe!)

Anyway, I was at the heights of night sweats when I was diagnosed, but my endocrinologist (have underactive thyroid too) did a special test that confirms menopause finished now. As I had a hysterectomy in my 30s (severe anaemia ie. haemorage & blood transfusions etc gosh I've really lived the dream eh!)

I did'nt really know it was happening, but here I am just 50 years young and done & dusted. Have to say all my pals are menopause this & menopause that at the moment,facinating.....

[Hidden]

Oh dear yes Gina - I've got a few friends who are going through menopause and I had been feeling a bit done and dusted too (although no hysterectomy - poor you what a lot you've been through) but evidently not anymore so they are back to lording it over me and explaining the nature of a hot flush blah blah. I've never had one yet but guess maybe I'm going through a very long winded change and maybe even joint pain is a symptom of hormonal change - although it woudn't explain the elevated inflammation counts and the low positive RF - or maybe it would? I am starting to feel I know nowt. The GP took a blood test to see what hormones are doing now.

I do know I've been sleeping like a log (hip hip horray!) since my period, dairy and caffeine free stuff started - ie over a week now having not slept more than a few hours at a stretch for almost a year. Actually more - since my mum died 18 months ago. Still very tired (mostly sleepy rather than fatigued) in the day time and lurking joint pains that haven't come to much yet.

The deep heat in feet and elsewhere (like injected boiling oil) is still here and my hands feel very feeble these days - hard to open doors and use keys and get pesky medicine out of foil wrappers even?! And they ache continually - especially at the base of my thumbs just now. And the hard nodule on my top middle finger joint (Heberden) is becoming very large indeed. I did ask my GP about OA but he thought I was a bit too young (still 48) and there was too much symmetry. And so my mystery continues....

[Hidden]

ps I think there should be far more research into the links with fluctuating oestrogen levels and RA. The fact that arrival of RA often coincides with major hormonal changes should be more than a clue to the medical profession - but in this current climate of underfunding I guess you are probably right about them not caring. Just keep shoving steroids and toxic meds at us all because it's easier/ cheaper than funding serious research??

[Hidden]

where have you gone Tilda?