Just popping in again to ask some advice about my big toe. Suddenly i've got a new swelling on my MPJ joint . It started with a sudden bruise and then the swelling. It hurts to touch but not to walk thankfully.
I have UCTD and Raynauds and am taking mtx 15 mg weekly and 5.5 mg steroids. I wondered if it was to do with vasculitis as my feet are very inflamed at the moment or a joint problem?. Im still having inflammatory probldms after the flu jab.
Your thoughts would be much appreciated. Luckily its not the foot im awaiting an op on.!.
Keep well and safe everyone and thank you in advance for any info or experiences ypu can give.
MistyX
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misty14
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Oooh misty that looks so painful!! Did you bang it at all , is possible you could have broken it ?? I think you should get it looked at and email your rheumy that picture.
In the meantime would an ice pack and elevation help ?
Thank you weathervane for your great thoughts. I havent banged it but should have thiught of broken because ive broken metatarsals in the past. I do elevate it but ice would be good. Im speaking to my gp this week and will tell him. My hospital consultants / nurses dont do email contact. Its phone only. Silly really.
Hope you enjoyed Strictly last night and are as well as possible. Xx😍❤😍Xx
I hope its not broken, but steroids can effect bone density unfortunately. My boys have had broken toes playing football and I broke a toe due to being clumsy, never the big toe though!!
I missed some of strictly last night but have tried to catch up , love the amazing Bill Bailey, what a man 😀.
Thank you weathervane for giving me the heads up about my toe!. I should have thought of broken but havent as ive broken metatarsals because of steroids and osteoporosis in the past and its following similar pattern!.
Strictly was wonderful and i love Bill and Oti. She is such a clever teacher. Jj and Amy were very moving so i was glad he wasnt voted off although tough on the others. Anton was a good judge, hes doing it for 2 weeks as motsi is stuck abroad. I cant wait for sat, its such an uplifting show.
Thanks so much stiff for your lovely wishes. Have you heard about your bloods?.
I m still waiting for my gastro plan. The registrar rang me amazingly last week and apoligised for delay and said hed see the consultant soon and they'd ring again when got it sorted. We'll see.
I think toe needs an xray. Its similar to when i broke some bones in my foot a while ago now.
Hi misty yes I think you could be right about an X-ray 🙏 wow excellent I’m glad you got a call and hope you don’t wait too long. Meanwhile I hope you get some help and relief with your toe.
No I’ve heard nothing 🤷♀️
Take care keep safe let us know how your toe goes too 🤗xx
Thanks so much stiff for your good wishes. Im sorry you've not heard anything. Its disheartening isnt it. Ill let you know how i get on. Keep safe too. Xx🙂❤🙂
Thankyou too misty, it is frustrating , but pandemic not helping at all . I just am grateful that neuro is even trying to help by looking into bloods but definately disheartening when I’d like to be seen and bloods may not hold the answers 🤷♀️ but dilemma of not wanting to be near hospital either. If I’d managed to find a new gp before pandemic I’d cope better but not having a gp I can go to is probably the hardest thing as nothings being recorded ( my own diaries and photos I’m keeping) and no help/support. The sooner this pandemic over the better 🙏🙏 being broken in a broken country with broken health service is not the best 🤷♀️ But we have each other and hope 🤷♀️🙏🙌🏻❤️🤗
Thats awful stiff not having a gp as they are our gateway to services. Ive often said if only we'd had more notice in march that this was coming it would have given us chance to do these things!.
Have you thought about ringing the neuro's secretary and asking about your blood resukts and if you tell her your still suffering they might give you a tel appt?. You could at least discuss it with a medic. Its not the same as face to face i know but it is what i did with my gastro dept and i got a tel. Appt.
Its hard with our illnesses without having a pandemic to cope with. Keep safe and take care X x
Thanks misty , I’m hoping it won’t be too long before I hear from him, things are never good timing are they 🤷♀️
If this hi/leg pain gets worse I may , I have been thinking of just sending a few more photos of late and advising him of what’s going on then maybe he will think to arrange tel appointment 🙏
Thankyou for best wishes 🙏 same best wishes back 🤗
That's definitely a good idea stiff. If our conditions change then we must tell the doctors and not worry about bothering them . Good luck with it and keep me posted too how you get on. Xx
How are you getting on?. Stiff. Just got gp go ahead for toe xray as could well be a fracture. Awaiting call from hospital with an appt. Hope your making progress too. Xx
Hi misty, great news pleased you got xray in pipeline 👍 hope not too long a wait🙏 I’m not bad thanks , feet easing off and hip pain I had a few hours of feet up yesterday which has helped and walking around on cold kitchen tiles seemed to take veins down a bit but then cold mottled feet 😂😂🙈 I also had a couple of aspirin which seemed to help I don’t normally take them if I take anything it’s paracetamol but they do not do much but aspirin helped a bit 🤷♀️ Or just timing. It comes and goes daily but coping, whilst waiting for now and reading up on it.
Thanks for letting me know misty, please let me know when you have xray but great news your go ordered it 👍 thanks for asking after me , take care best wishes 🕊🤗❤️
Hi stiff, be careful with aspirin but glad it appeared to help. Cant we drive ourselves mad wondering? The mottling sounds like livedo a type of rash that can come with these AI illnesses. I have it. Have you been tested for APS or sticky blood its best known as.
Ialso just want to encourage you to contact the neuro dept. Ive just heard back from the gastros who wanted to discharge me. They're prepared to do a further test and ive got a plan about the treatment im on for IBD or inflammatory bowel. They will keep me on yearly follow ups too so they listened and acted on what i said. You could have the same so i hope you do hear from them.
Thanks for your toe good wishes. Ill let you know. Keep safe and well. Xx
Yes I will misty, I take nothing on regular basis, only when I really can’t take no more and I won’t be taking any more yet I just wanted some relief. I don’t know what the neuro is testing for and all I know the rheumy tested for was lupus , dermamytosis and lymes, but tests ok but that was 2018.
I’m also supposed to have colonoscopy every 3 years but over 5 now. I thought they would send for me as used to but not and I want that done too but won’t see about it until things improve with hospitals/covid. I was told skin was normal by rheumy but dermy said not and referral to neuro 🤷♀️ I still don’t understand but dermy more interested in getting eye/face and other stuff seen to rather than skin 🤷♀️
So glad you’re going to have further test and a plan 👍
Hi stiff, i hope your still feeling better and or you might have heard something from neuro?. Your dermy obviously felt your possible nerve problems needed investigating more than your skin. Im just popping up again to say i had to go to A&E to have my toe xrayed as had worsening pain and my gp's xray request never got thru. I rang the xray dept first to find out. . Luckily its not fractured but an acute joint flare that must be rested for a fortnight . If it doesnt settle im to get in touch with Rheumy. Im so relieved its not fractured. It does prove though how requests can go astray and how we must chase everything.
Ouch Misty that looks so painful. Could you have been bitten? It looks like a very angry red spot to the left of your toe. Sending you big Cwtches and I hope you can get some ideas from the lovely people here xxx
Thanks so much cecily for your good wishes. I am going to get it xrayed as thanks to you lovely folk on here , ive been reminded it could be fractured. Have had simular problems in the past with my feet due to the steroids and osteoporosis. I should have thought of it and havent and its starting to hurt .
I'm glad to hear that you're getting your toe x-rayed misty 🤗it looks very painful n I think it's only gonna get worse if u don't get it seen too!! U don't mess about with toes especially the big one!!
Take care n keep us posted on your x-ray results 🌈😽😽xx
Thanks krazykat for your good wishes.I do appreciate them and your so right about feet. Mine are a mess because of the arthritis. I will update soon as I can. Hope your keeping well and safe. Better news tonight about a vaccine. Xx
I had wierd swelling in my foot - and at the time if I - (e.g) lent my elbow on my thigh etc., the red pressure patch wouldn't disappear quickly. In fact red pressure points were freakishly slow when it came to disappearing all over.
Thinking this would be way too much for my Doctors - I kept it to myself.
To cut a long story short - I decided to share my foot with my GP - under the pretext of renal edema. He poked at it - and then applying pressure with his thumb on and off - watched the circulation and saw the same thing I was seeing in my skin elsewhere. The peripheral circulation was very slow in reacting.
He said it was a Raynaulds thingi and left it at that. ( he's not one for chatting )
I also had a bruise happen on the tip of my thumb for no good reason with an extreme weather change too. I hadn't bumped it and I didn't hurt. I think this could have been weird Raynaulds phenomena too.
Lovely hearing from you freckle and your experiences that ease my mind about it. You've had a lot of foot problems havent you. ?. Trouble is ive got history of broken feet and suddenly developing similar pain after walking yesterday it needs an xray to rule it out. Im talking to my gp tomorrow about it so hopefully it will be dealt with ok. It feels better to talk about it because im having to keep it quiet with the parents. Not easy when your worried!.
Do hope all your family are coping. Our lockdown will last till early dec!. Dont know what they'll do after that!. Hows your area?.
I managrd to talk the gastro registrar round. They did want to discharge me. Im was so angry. They've agreed to give me a treatment plan as have confirmed i still have ibd!. Im now waiting for that decision!. How we have to fight!.
Hope your feeling much better after your procedure and you all keep safe. Thinking of you. Xx🙂❤🙂
I'm so sorry about youre battle with gastroenterology. They're one of the specialist groups that are just a bit too much like rhuemies ( with mind body connections stuff ) Its just.....just 😡 not good enough. I remember one gastro writing a letter saying I was sugar pilling myself with digestive emzyme pills. They were actually life saving - and it took another gastoenterologist several years later to go to the trouble of testing enzyme production via a simple blood test .....only to find I wasn't producing enough.
My broken bone / foot problems are mostly in the distant past- just a bit if a sore left foot now - although back then - post breakages there was the internal bleeding / swelling that came with the breaks.
Unfortunately I can relate to keeping medical issues from my family. Its must be really excruciating on two levels for you - although I hope you're motives are different from mine.
I keep my medical info from family both out of a sense that they have too much on their own plates - but also because they're incapable of understanding - and I'm always a bit traumatised by their response. Over the years I've just learnt not to share.
I hope you're able to cope with the lockdown and whats going on around you. We're all a little mortified by the news coming from Europe and the US. Its utterly horrific. I hope you and youre family will stay safe amongst it all.
We've all just emerged from a three / four month lock down ......but It's has a bit if a silver lining - because people have become much kinder and so much gentler with each other. Its been a real surprise. You wouldn't think it - but Its amazing how hard it is to come back out into the real world for many of us. Where all taking it slowly so's not to overwealm ourselves with the harrder aspects of the outside world. I know it sounds strange- buts it's a real phenomena here. However Its nice to - all of a sudden - value the little things that always went unappreciated and un - noticed. Lots of changes in priorities. I hope it lasts.....and at the end of youre nightmare over there - you all experience the similar thing.
(Unfortunately we've had a bad outbreak In the neighbouring state - ( South Aust ) and many of them have freshly crossed the border and are wandering around here ) A lot of the areas population have family, wine making & cultural connections to our little town - so were a little vaulnerable again - just when we thought we were ok.
Hello dear freckleThank you for your lovely message. Im sorry its taken me a long time to write. The gastros are particularly tough as they have attitude. Its awful what you went thru , its apalling when mistakes are made about life saving treatments!. Im pleased they've agreed to another stool test and if still high they'll do a scan. If all normal then they will keep me at yearly review as they've confirmed i do have Ibd . Its undercontrol from the drugs. They want me to try without my bowel medication to see how i get on. One pill less thankfully.
My gp appt was brill as he agreed big toe needed an xray, no quibble becos of my history. Two days later pain in toe worsened and i phoned the xray dept and they had no record of his request. Hed done it there and then. They said call back in a few dsys but i said it was worsening all the time so they said A&E. So i went thru that which isnt easy and had it xrsyed and luckiky no fracture. So relieved but what it was is an acute flare of that toe joint. Ibuprofen and rest. Its improved greatly thank fully. Im flaring really still from the flu jab and may speak to Rheumy next. I dread the covid vaccine because of flaring. How about you?.
Im so glad your foot horrors are behibd you. I think im starting mine as toes so misshapen now because of the arthritis.
We had the same feelings after our first lockdown freckle as you've experienced. It does feel funny to emerge suddenly into the outside world again!. Id forgotten how to shop and pin number etc. Im sure ill feel the same after this second one. Cant really do normal things as worried ill jeopadise any hopes for an op date. Ive had a letter that has reclassified me into the routine group so it will be even longer to wait now!. Its 10 months already!. They're working out a strategy for xmas and then back to strictness in new year. That will just make for flu and covid in jan / feb and jeopadise hospital services then. I sound very selfish and do realise its important for family gatherings but im struggling now with added pain and it wears you down. Im also missing my friends.
I too dont want to worry my parents who are in their 80's. I dont always get right reaction from dad but they are hugely better than yours. Im so sorry about it for you freckle as it makes life very lonely.
Its wonderful the kind spin offs we've had like you after covid. Just hope it continues as you say.
Ive written enough. Take lots of care navigating after lockdown and be so careful of that local spike. Thinking of you. Xx🙂♥️🙂
Hello again Misty,My turn to apologize to you for my late response. Being let out and about - apart from the good bits - means catching up on so much - and its been draining.
I've been thinking of you over there - bad enough you're in lock down - let alone the suffering you're going through. I'm glad you haven't fractured you're toe and I hope the inflammation has settled down - with REST and medication.
I'm heading back and forwards with family and I've had to create some new boundaries regarding what I can and cant do due to illness and disability. I hope you do too.
My parents -being just a tad on the narcissistic side are a little too demanding over every little thing. In stark contrast I have a quadriplegic brother and he hardly asks for anything.
I'm glad to hear that at least you're family are a bit more normal.
Bit of a bonus - I've gotten to know my elderly aunt a bit more and shes become great company. We have a lot in common. Its a start - getting back on my social feet after the 2015 flare. Very much out of social practice.
......................
I think if you're government is going to lock you all down - they need to follow through until things genuinely improve - without taking breaks here and there - even if it is Christmas. This may sound a bit ruthless - but for the greater good - of your own and others health the restrictions should be prioritized over everything else.
I wont say much more for now - except to say I'm pretty well - and to warn you to make sure you're well and truly organised with you're Doctors - and at the front of the line when lock down eventually lifts. Here there are now huge waiting lists for practically everything medical and there are stories of people who have become recently unwell needing urgent help and not getting it quickly enough. I believe - or rather hope where you are - it wont be nearly as bad.
One positive here in Victoria - pretty much every step the state government made during our second wave is now been scrutinized via a large public inquiry. Its become apparent that the public health system in our state has been badly mis -managed by government departments for a long time. Hopefully it will bring about broader change. Perhaps the same thing will happen with the NHS ?
With vaccinations - I've been lucky never to have a flare like reaction. I hope you've recovered from that too. I've never really read up on them ( except to understand that live ones for us might not be the best ?) As for the new fangled synthetic reproductive micro - techno bots ?!? and other stunning vaccination technology coming through.......I have no absolutely no idea.
I suppose the name of the game is to create herd immunity with the vaccines. I know here - it will be the elderly, sick and immuno - suppressed that will get first access - so I'll have to 'try' and think myself lucky and go into the frying pan first - take the risk.
Hello lovely freckle, my turn to apologise for taking longer to reply to your lovely message and kind thoughts. You are still my inspiration as you understand the difficulties of navigatung health with family members.
I do hope you are coping better with life after lockdown, takes a while to get used to it again. I can so relate to you saying how draining it all is!. Im exhausted permanently now thanks to covid life. Im so pleased you have got the bonus of a new relationship with your Aunt. That is wonderful and long may it continue.
Do hope your parents and brother are coping. Do hope you stay well now for a long time, you've earned it.
I do agree with you about our govt and christmas arrangements. Just relaxing rules for 4 days will create mayhem and its put an added pressure on creating christmas for those days which is making people put trees up eetc so early!. I just hope people arent disappointed when it comes. Im feeling the pressure and my xmas wont be any different!. In jan we will pay for it in flu and covid cases and no ops being done!. But i have to swallow it and cope. I treasure people like you who really undeestand . My parents dont entirely and we're clashing more i am trying to do selfcare more and think of you urging me on .
Ive had to contact my rheumy as flare just hasnt abated and ive got pericarditis again. They've recommended 15 mg steroids for a week and then go back to 5.5mg. I asked about the vaccine plan and they think its somethibg that should come from gp so im asking him at our next catch up appt. Its so easy for us to get caught between hospital and gp and be ill piggy in the middle of them both. If im not better rheumy's want to know which is great. Thank you for your good advice re the doctors. Im keeping them all busy but need their help and advice.
Gastros are willing to follow up in 3 months if i come off my bowel drug. It all depends on the result of my calprocten test. Its very sensitive for inflammation!. Should know that soon!.
Im thinking of you too freckle, hope your navigating your way thru dec ok, not an easy month at the best of times without covid!
Hi Misty. I just had another read of you're post - without a migraine........I'm still shocked by what you're going through - with the British covid outbreak, lockdown with difficult parents, - and now pericarditis and more prednisolone. I hope you're starting to feel better now and you're self care strategies, along with more pred in you're system are beggining to make you feel better.
It's becoming very hectic here and I think my mind and body may be paying a very high price. My mind is wilting quite badly - ( so some self care needed there )
I've just qualified for disability care - that helps with home help and rehabilitation etc - which was quite a task to apply for in itself - but right now I'm off to my parents to try and help them with all the very jobs I'm finding increacingly impossible to do for myself.
Sadly - the hardest part is paying them the narcissistic feed that they demand that's a bigest drain. Its exhausting. But off I go.
I just want to say that I've very much valued you're support and online friendship - we have had a lot in common.
Very much thinking of you over there and hope you're Christmas and New Year has some joy in it despite the great adversity.
Dear freckle, thank you for your lovely message. I feel too how similar we are and you've been my inspiration for self care and coping with family alongside such a difficult illness. I can only imagine what you've had to go thru to get disability care but im glad you have got it. Although its a bit bittersweet for us , i hate having to renew mine. I hope you got an outside charity to help you claim.
I too get migraines and mine have returned since covid so it must be stress. I do hope your feeling better enough to tackle your parents. I feel for you what your having to juggle. Will / can you stay over xmas?. Just hope you'll manage ok.
Our xmas is now one day because of the cases surge. Thank goodness for the vaccine. My parents may be jabbed in a fortnight!. Hope you get the chance soon.
On the healthfront ive achieved a lot since my last message. Ive got a vaccine strategy from rheumy ie extra steroids as luckily they've helped. My stool test for gastros was high in inflammation again so they said stay on bowel drug and review in 3 months. Not bad when they wanted to discharge me. Our bodies talk in the end dont they?.
My nurse friend has encouraged me to ask my surgeon if my toe coukd be injected while i wait for op. Im hoping santa grants me that as still in a lot of pain. Wont get op till at least Easter!.
It proves freckle how we must fight if we have the energy. Ive also developed some good self-care strategies so its easier with my parents again. Do miss my friends as you must too.
Im going to try to keep the cute pic going till Easter so keep watching my post.
I hope you're still holding up over there and survived Christmas with those self care strategies.
I'll keep it short as I've struck a sudden patch of high blood pressure problems with some awful brain fog - and waiting on an slightly fast tracked MRI of the noggin. ( actually hoping that this time it is 'only anxiety' 🙃 )
I'm a bit shaky and short on words at the moment - so for now I'll keep an eye out for you're snuggly posts.
Dearest freckle, lovely to hear from you. I hope you survived covid xmas too. Thought of you. We had a lovely , relaxed day . Im so sorry at your latest problems, high blood pressure always a worry. Excuse my ignorance but does noggin mean brain mri?. Do let me know your results, sending lots of thoughtwaves. Im needing my new strategies but they are working thankfully. Got so much pain in toe and hope for help in jan. No chance of op because of covid crisis. We've just been put into a higher tier with more restrictions but have the possibikity of a vaccinatiin appt soon for us all. Emotional rollercoaster today really!.
How is your area?.
Im also worried and distracted by knowing my dear U.S penpal who has lupus has covid so dearly hope she gets thru this too.
Sending you lots of love for a happy, safe new year and good news on health scare. Keep me posted. Xx😀❤😀❤🤞❤🤞❤🤞❤🤞❤🤞❤
Noggin does mean head - so I'm having to ease up on glowy screens and internet communications for now. It's become very draining to try and keep up with most communications right now.
I think the BP and headaches are just a bad reaction to pred withdrawal - nothing serious - but it's good they're checking the old brain just in case.
I'm glad to hear you're Christmas went well.
I hope you're friend in the US gets through her covid infection without problems.
You look after YOURSELF and stay safe over there. We're having small outbreaks here that are a bit hair raising but It's nothing in comparison to whats going on over there.
I'll definately let you know how things go after the MRI - and when I'm feeling a little better.
Dearest freckle, so sorry at your suffering. You can adjust your computer and devices screens to limit blue light that might help. I bet u already do it though. Many thanks for your good wishes and 🤞for your mri scan. Thinking of you and keep safe. Pop up as and when you can , just look after yourself.
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