Ping!

magenta

Hello,

I've been having strange things happening to my toes for a while. When I walk, my toes 'ping'! It's sore at the time and then it's a mild pain around the toe. Tonight, whilst hoovering, something 'pinged' again. It felt like the whole tendon in my toe snapped!! It's sore but I can still straighten it.

Any ideas?

Cheers,

Magenta x

lalla

sorry I cant help Im more of a crunch person but do hope you get sorted soon Take care <Linda

magenta

Thanks Linda,

I too am usually more of a crunch person. It feels like something is snapping. I don't know if there's tendons in the toe? It's odd.

Magenta x

jilly

Hi Eileen , I once had a ping in my knee, it came up in a lump and stayed there for 18 months . Perhaps tendons and arthritis go together . I was told hovering is not a good job for arthritis suffers , puts a lot of strain on the joints . Trouble is we can't look at the mess can we.... love jillyx

magenta

Hi Jilly,
It's just another thing for me to try and get used to-another thing to ask my rheumy.
I've always thought hoovering wasn't good for me

Nice seeing you posting again,

love Eileen xx

jenzie06

Is it the underneath the foot? The tendons can get 'knots' on them (I have them in my hands), I think its where the tendons thicken in places. I've had steroid injections into the lumps and it can get rid of them. Sometimes my fingers get stuck, I'll bend them then be unable to lift the finger up (trigger finger).

Is it rheumatoid? As it can affect ligaments and tendons. I've had both thumbs and my ring finger fixed as they have overstretched. The ring finger ligament could actually be seen falling off the joint as I bend my finger. Could this be a possibility?

Or is it fluid collection leaking out of the joints? That can feel like you are standing on a pebble and clicks audible as it moves back and forth as you move?

If it's none of these I haven't a clue sorry!!

magenta

Hi Jenzie,

I've not got rhuematoid arthritis. I think I have PA as my fingers and toes are very sore and swollen. It's under the toe.
The toe that pinged feels like the joint is like a ball :shock: It's round and my toe can't bend (same on the other foot). It just sticks out! I also get the feeling of walking on pebbles.

I dunno what it is?!

Thanks,

Magenta x

Mat48

Yes I get this sometimes too - do you mean in the pad underneath your toes. I get feeling like pebble under my toe usually first thing in morning then it seems to go or get less pronounced as day goes on. Haven't a clue what it is though - just another weird and wonderful thing in this new (to me) weird world of Ather I guess? If anyone knows it would be interesting to find out! :?: Mat
Ps I often find it painful to wriggle or bend my toes too those days .

magenta

Hi Mat,
Yep, I find I can't bend my big toe or the one next to it.

Magenta x

skezier

Hi Eileen,

Mine can do it and I am thinking like Jilly and Jen....

another thing to put on your list and hopefully when you get your appointment they will actually help you. Just about to do pm's I promise but a ((((( ))))) and a cuppa. Cris xx

magenta

Hi Cris,

My list is awfully long now. Hope this appointment comes soon

Eileen x

Mat48

Sorry I'm getting really confused here about who has got what because I'm on holiday so reading all on my v slow wifi on smart phone so please forgive me if I get names muddled!

Magenta when you say you think you have PA what makes you suspect this over RA? I am asking because we appear to have similar symptoms and I think PA and RA both effect toes and fingers so wondering if I might have PA now. I hadn't thought about this as no psoriasis to date until last week when I found bits on face and ear starting to peel which I've never had before - only eczema which itches and goes red. This was quite different. But could have just been an allergy or dry skin but strange to have all this skin peeling off my ear? Wondering how PA is diagnosed? I feel more and more muddled about how PA,OA or RA are diagnosed if bloods are sero negative? And do people get raised inflammatory markers with OA?

The underside of my feet is usually crunchy nowadays, especially in the mornings when I rise. But the pebbly one seems to arrive after walking and I found the ball of one of my feet was significantly swollen last time it happened. Mat

Mat48

Sorry I'm getting confused here about who has got what because I'm on holiday so reading all on my v slow wifi on smart phone so please forgive me if I get names muddled!

Magenta when you say you think you have PA what makes you suspect this over RA? I am asking because we appear to have similar symptoms and I think PA and RA both effect toes and fingers so wondering if I might have PA now. I hadn't thought about this as no psoriasis to date until last week when I found bits on face and ear starting to peel which I've never had before - only eczema which itches and goes red. This was quite different. But could have just been an allergy or dry skin but strange to have all this skin peeling off my ear? Wondering how PA is diagnosed? I feel more and more muddled about how PA,OA or RA are diagnosed if bloods are sero negative? And do people get raised inflammatory markers with OA?

The underside of my feet is usually crunchy nowadays, especially in the mornings when I rise. But the pebbly one seems to arrive after walking and I found the ball of one of my feet was significantly swollen last time it happened. Mat

magenta

Hi Mat,

I'm sorry :oops: I'm assuming you know all about my years and years of trying to get help. Mines is a long story which I'll try to cut short.

I was diagnosed with sero-neg arthritis 22yrs ago. I've never had a positive RF in my blood which has been tested now over 20yrs-hence me knowing I don't have RA. I've only ever had raised ESR once.
I've got fibro and OA in jaw and neck.
A Dr about 20yrs ago said I had symptoms of PA but as I didn't have psoriasis then it was a maybe.
I know you don't have to have psoriasis in order to have PA but I know it affects your fingers and toes. I get sausage fingers and toes. My nails are all pitted and ridged. My finger-tips are all swollen. I also get symmetrical inflammation which I think can happen too in PA? I self diagnose all the time cos I never ever seem to get anywhere with rheumys.

Are you sero-neg too? Hopefully I've not confused you further.

Magenta x

PS There's no test for PA-which is a bummer!

Mat48

Oh I'm sorry Magenta - that you have had 20 years of uncertainty is my idea of hell because I've had a year and am almost at end of tether so can only begin to imagine your place - you have my full sympathy and respect for not blowing up at one of these "specialists"! I just hope my story doesn't follow yours - uncertainty is unhingeing me as much as the pain.

I do at least have a low positive rheumo factor but my anti- CCP was negative so GP said that rheumy wouldn't be prescribing any DMARDs this time. My ESR was initially pretty raised but was coming down to only slightly raised last time it was checked 3 months ago.

I've self diagnosed too - switcher from Palindromic to PA to OA just now. PA because though ive had no psoriasis i have had pain in my neck and liwer back recently. Nails all a bit pitted anyway from previous history of chronic eczema. Achilles tendons sore now too which I've read goes with PA. I thought they could diagnose PA though x-rays?

I think I have OA in fingers because of Herbedian nodules springing up on each finger determinedly. I'm not sure that I would have OA in rest because it's a Polyarthritis which is more usually associated with the auto ones i read and is a bit symmetrical too although usually worse on one side than the other.

Good luck with the pinging toes - I've woken with wrist hell after a terrible night with shoulders but haven't braved it out of bed yet to see what feet are up to. Going home today - cant wait for return to kingside memory foam mattress and pillows! Mat x

magenta

Hi Mat,

Hope you've had a good holiday. I meant to say about there being no blood test for diagnosing PA. Drs can diagnose via xrays. I had xrays done in March on hands and feet but there was nothing to show but they were looking for OA-dunno if that would show up differently on an xray?

My fingers and toes since then have rapidly got worse and I think I have a Hebredens node on one of my fingers. I just have to keep going to GPs and pushing for things to get done. I'm positive that ONE day, they'll come up with something.

Enjoy your sleep tonight!

Magenta x

Mat48

Thanks Magenta. I think you are very long suffering to keep going to GP and pestering them. We have come back from holiday - or rather are nearly home now - a few hours left. Sitting in the car watching boys walk our dog in the rain before we get on the ferry home. It was okay but a bit frantic and not as chilled as I'd have liked. My joints flared up worst yet so that dominated it all for me as I couldn't handle the pain in my wrists shoulders and fingers at all. Couldn't get dressed or undressed without help or get out of the bath or drive, walk dog on the lead - felt quite scared to be honest. One evening I pulled off my top and was actually sick with the pain!

So tomorrow will see GP 2 weeks after I last saw him and hope that fingers still look like sausages and pain makes me as frank as I think I need to be. He's not the rheumy but at least he can document that I've been in flare for a week and it's all just getting slowly worse and worse. But suspect none of it will make a difference and like you it will all just go on and on
until finally I go nuts?! :roll: Mat x

magenta

Hi Mat,

Have you written it all down? Tell him how much it's affecting your quality of life. Take pics of your fingers just now if they're swollen. You can show your rheumy them too.
I've just been very unfortunate in that the rheumys I've seen, only seem to be interested in a positive RF.

I wish you all the best for your GP appointment, please let me know how you get on.

Take care,

Magenta x

Mat48

Thanks Magenta. Seems bizarre that rheumys are only concerned with positive RF ? you can have mine! My rheumy said low positive not enough to diagnose me yet and anti CCP more specific for RA and that's negative. I guess they can change but I have read of people's accounts of being 100 % sero negative and still having aggressive RA and these things change too as disease progresses. Some people seem to have been diagnosed purely on symptoms and scans. I don't know if you have had your joints scanned but I think this might be more sophisticated than x ray which only picks up
on advanced damage. I too had hands x-rayed 6 months ago and normal. I don't think they do scans of joints here and that's bad for me because that's when invisible swelling shows up apparently?

Yes I photographed my knuckles and sausage forefinger but my GP never seems that impressed by my swelling. I think he and rheumy put a lot of store by visible red hot swelling and I've only had that twice. It's swelling swelling show us with them! Will take pain diary in but it's only a 15 min appointment so he won't have time to read it. And he wants me to impress the rheumy with my sufferings as much as I do I think because otherwise he gets egg on his face?! Tough times these. Have a good night yourself and will update you tomorrow if anything significant happens when I tell him of my week. Mat xx

magenta

Hi Mat,

I've had MRI's done on various joints, the neck being the most recent-getting results of that this Friday :shock:

I would like ultrasounds done and bone scans but the drs don't want to know. It's the swelling with me too! The drs never see what I see so they won't refer me for any scans.
Last year, I had something 'pop' out my neck. I had to really push for an xray and that's when they found the OA in my neck.
Get a good sleep and hope the dr's appointment goes well.

Magenta x

ironic

Hi Magenta,

I have the pebbles under my foot too; mine was diagnosed as Morton’s Neuroma. I had insoles fitted by the podiatrist and it has really helped.

I also have Nodules under my big toe which I first thought it was just painful hard skin due to wearing wide fitting shoes but sadly in my case RA was the culprit.

I hope you and Mat get some answers soon.

Lv, I x

magenta

Thanks I,

Hope you are well

Magenta x

Mat48

Hi Magenta. Just to update you GP visit went fine. Told him about last week's flare and showed him relevant bit in my diary/ symptoms log with photos of swollen joints. He was surprisingly positive about them and advised me to take more whenever there's visible swelling in synovial joints like knuckles and middle finger joints as he finds it helpful to see the evidence.

Thanks for encouraging me to take them as I did fret that he might think me a bit OTT/ hypochondriac?! But typically all swelling had more or less gone down by this afternoon so showing him yesterday's shot of knuckles and sausage fingers made his eyebrows rise! I can tell him how both shoulders and neck ache til I'm blue in face but he doesn't seem interested. Maybe shoulders are something else like fibro but they seem to hurt most when I move position and connect to wrist pain somehow?

Anyway he's arranged to do blood tests early in morning next Wednesday for inflam markers, thyroid and FSA/ hormonal ones. Wonder if I should ask for a repeat RF to see if it's gone up or down- can it change much over months do you know? Whatever - the journey continues on and on and I wonder if there will ever be a conclusion? :???:

magenta

Hi Mat,

I'm glad your appointment went well. The pics went down well then eh? I'm definitely showing mine then (I've never done that before but I was advised recently to do it).
My dr is the same with my shoulders, he won't refer me for an xray as 'it'll only show up what you know already'. One GP has told me just to get on with it!

Good that you're getting more bloods done. In my surgery, they always do my RF as a matter of course-even though it's always negative I think it can change over months but I'm not 100% on that one.

They're doing the right thing and hopefully there will be a swift conclusion

Magenta x

Mat48

Hi Magenta,
Sorry but I just get so cross for you each time i learn more of your story! I don't know why some people get diagnosed because their rheumys and GPs trust them where others like you don't? They should have suggested photos etc by now. Mind you i wasn't invited to show them either but I just told him that my OH had pushed me to (a bit of a white lie but OH did encourage me to after the flare of last week!). He said the best ones were of my knuckles and fingers. I know that with a low positive RF and a negative anti-CCP I'm going to have to demonstrate to rheumy how bad things are as much as I can and GP knows that too. Shoulder pain will never show itself and he realises this and so disregards it in quest for me to get a diagnosis.

X-rays only show damage when it is too late whereas scans show inflammation that is sometimes not picked up by the blood tests and is often not visible to the naked eye. What do they want - to wait until we are crippled by whatever we have?! Whatever happened to early diagnosis and treatment to prevent disease escalating?

Is there anyway you could move to a new doctor now or get a more sympathetic and switched on GP? I'm only at the beginning of all this but if the rheumy is dismissive of shoulder pain or bangs on about "need to see you in full flare" when he only comes up here every 4 months and sees me for 30 mins max - then I will actually contemplate leaving our home of 23 years, having first researched places that have better rheumy medics.

I will only put up with this uncertainty for so long and then I'll go PING - never mind the toes! Sorry Magenta - I've been doing too much research tonight after a few weeks of no laptop and it seems to me that those who shout (or sob?) loudest get help and that's what is required even if it doesn't come naturally to us.

Yes do take photos and a journal or pain map and be as assertive about the PA that you suspect you have as you possibly can. Hate doing all this myself there's nothing I dread more but there it is - the only way! :shock: Take care please.
Mat x

magenta

Thank you Mat,

I haven't told you then about the many times I've been so upset about everything and lack of treatment and went mental, that I've been told I'm depressed or even asked 'do you self-harm'!!!

I've been discharged from so many hospitals-my new referral is about the 8th new hospital.

I want to catch it before it detroys my joints but basically told I'm too young and I have to wait until I'm unable to move before they'll do anything.

I'll get a good dr one day

Take care Mat,

Magenta x