THEN tonight my knee is playing up instead🙄 well...behind my knee. So have a support on that...
Fed up though!
No need to respond to this, just thought I’d update😁
From here is original post....
Hi all sorry if this is hard to read I find it difficult to type with my left hand, and the right one too painful and swollen to use.
This is first proper flare up since starting hydroxy a year ago... feels like my wrist is broken ... sausage fingers...swollen veins around the area, getting that hot cold pins needles numb pain. My fingertips feel so cold is this normal?
Just wondering if anyone else has felt like they were getting ill when they flare, I got up in pain at 3.30 am and I went all hot flushy and literally sweated and felt all weird, felt almost nauseous or that I might pass out or something. The sweat passed and I’m sitting here with a coffee and wishing I could get some rest. It scared me, I still feel a little odd.
I think I’ve been overdoing it and have had lots to worry about as my dads been in hospital and had so much to do, I’ve only had about 8 hours sleep over 2 nights .
Was supposed to be in work today but had to call in and cancel.
Feeling depressed!
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Ssmart
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Poor you. Hope you have some good anti-imflammatories and its starting to ease.
When I flare I feel like I'm coming down with the flu....achy, hot and cold in turn, and generally shattered. So could well just be that but if it persists get it checked out.
And it sounds like you need a day in bed anyway. If your Dad's in hospital he's being looked after, so you look after yourself.
Thank you so much, my dad has been through so much in his life, it’s thanks to medical advances in cardiac care that he’s still here aged 72 .... when he was a teenager they told his mum he “would be lucky to make 30 years of age”
The doctors do him proud but it’s getting to the stage where they’ve done almost everything they can.
This has definitely contributed to how I’m feeling the past few days, and I’m trying to take time out to look after myself, it’s just hard not to worry.
Thank you again for your kind words they mean a lot x
I have not liked your post darling as you have so much on your plate. Your flare is probally caused by the stress your under darling. As you have called in sick go to bed sweetheart and get the much needed rest, also take your drugs to help your symptoms as well. I am sending you hugs .xxxx
Thank you, I managed to sleep a few hours, will keep dosing myself up with ibuprofen. Feel washed out. Wondering if I am coming down with something, we shall see! Thank you both for your kind words xx
Thank you, I haven’t seen my rhumy since starting on hydroxy over a year ago, I saw the rheumatology nurse 3 months after starting it and then I’ve not seen anyone since. I’m allegedly on the cancellation list for appointments but I think half the patients in that department are also on the list! So I wouldn’t know who to call to be honest. The nurse won’t be there over the weekend but I could call her Monday if I’m still suffering I suppose. Hoping it passes quickly!
Most rheumy departments have a helpline you can phone. If not there must be some other way to contact them. If you don't let them know you're having problems then they think you're doing ok.
When my hands and wrists get really bad I use ibuprofen gel 10% and I wear the compression gloves especially during the night. Hope you get some relief soon.
Ivor some gloves from boots a while ago, they have two layers, some really tight compression ones with a fingerless glove that fits on top, I wear the fingerless ones to work but find the joint more painful when I wear the compression part than without so tend to stick to doubled up Tubigrip.
The joint is still sore but not as bad as it was last night/ this morning but I still feel very out of sorts in myself, and have had a nice nap this afternoon!
I'm so sorry to hear your pain. I too had a horrid flare up in my hands & wrists 2 days ago & the pain was unbearable - I couldn't dress myself or lift things & even going to the loo was a trauma. For me sleep is the most effective remedy to coming out of a flare. 2 consecutive nights/days of +8 hours make a huge difference. I take 30/500mg Co-Codamol prescribed by GP for pain & upped my dosage of Prednisolone by 5mg (to 20mg) for 24 hours when it gets this bad. Be kind to yourself, keep hydrated & soak in a hot bath in the morning with Epsom salts. Be kind to yourself, sending you blessings xx
Thank you for your kind words, managed to sleep through last night, I dosed myself up and I was so shattered I didn’t wake up once. I do need to try soaking in Epsom salts. Thankfully so far I seem to get one painful wrist /hand at a time, and even that is terribly disabling, I know what you mean about the toilet! Rest is definitely helping and I think (hope!) it’s starting to ease now.
Thank you, I hadn’t felt like that before either. It seems to have passed now, I have read flu type symptoms and RA so assuming something like that but was very odd and I’d rather it never happened again! xx
Look after yourself re unwell dad because these things have a way of rattling us far more than we initially realise. I know when I’m flaring as it usually starts with sweats and mild flu like shivering and feeling cold.
Drink loads of water to replace that sweated out and allow yourself to ‘enjoy’ your duvet day. And finally remember that we are human beings not human doings so just be for today!
Yes I agree, as well as my dad being in hospital I had to manage to take my daughter to a concert! Admittedly I was sitting down for it, but I was very stressed about travelling 140 miles there and back... which we did in one day... and I think I had only 4 hours sleep that day.... need to look after myself more... I’d been feeling so well TIL this, with only niggles, so I can definitely vouch for the fact that avoiding stress and getting enough rest are important!
Not sure what the hot cold sweat thing was all about, but I felt out of sorts all day yesterday. Not exactly Ill just a bit not quite with it. If that makes sense?!
Hi there, im afraid my experience has been the same exactly, this has happend a few times, usually when i have been run down or weakened due to something else and I describe it as the rheumy "winning the tug of war" with the hydroxy.
I thought after a good while on hyroxy that the evil disease had gone or was in remission, but twice forgot my dose and on 1 occassion for 2 days and i swear i could feel the change happening then too.
Hi, funnily enough I had missed one dose of hydroxy the day of taking my daughter to see her much loved panic at the disco, as I forgot to take it with me.....
I assumed this wouldn’t have any effect as thought it builds up in system over time, but I could be wrong! X
Hi. I know how awful, agonising and debilitating hands and wrists flares can be. It’s impossible not to have use them! My rheumatologist has sent me twice now, over the last couple of years, for a fluoroscopy. It’s done with X-ray on the joints and all fluid is drained and steroid jab into the joint. It’s uncomfortable but with local anaesthetic, it’s worth it. Perhaps your consultant might consider that for you. Perhaps you could ask - what’s the worst that can happen? I wish you well very soon
Such an event is either an infection starting such as flu when bed rest and possibly reducing steroids is indicated, or it is a RA flare when the reverse is needed e.g.intra-muscular steroid injection. Time will tell .
When my hands/wrists get really bad, usually from overuse..and it don't take much of that with my poor mitts! I wear these bad boys, which are not cheap and might look a bit macho for females, but don't let that put you off as they offer excellent support for both hands and wrists. After a day or two of wearing these my hands/wrists have usually recovered enough for me to go back to wearing my more lightweight less supportive wrist supports.
Thank you for this... is it easy to put on? my rhumy gave me a support and last time I attempted to put it on I was in agony trying to do the straps then realised I was doing it wrong and gave up and sat and cried at it instead 😂
I've bought the largest size to allow for easier fitting. It can still be a bit of a squeeze with my deformed right hand, but not too bad and much easier than putting a glove on, something I don't have a cat in hell's chance of doing! The most difficulty I have is undoing the velcro straps, which have been trimmed to a suitable length so I have just enough left to grip when I undo them. I'm ok undoing the right support but have to use my teeth for the left as I don't have a strong enough grip in my gammy right hand. Not ideal I know, but I have the same problem with the velcro on my lightweight supports. That said, if you do decide to go with wrist supports then it might be a good idea to try a cheaper more lightweight type first.
Thank you! Very helpful, I don’t mind wasting a little bit of money on trying supports as when I’m in agony I’d pay anything for it to stop, so if it takes trying a few to find “the one” then so be it 😁
Pain has now decided it wants to transfer to the shoulder, and I’m about to have a seriously hot bath and stick an audiobook on while I’m
You have a lot to condend with. Hope you're feeling better. Your symptoms are different but I suppose you also suffer fibromyalgia.
When I have break out pain I feel like I'm coming down with something but it's just fibromyalgia pain going nuts. Recently I had a blood test and my vitamin D was extremely low. I was told to take 2 vitamin D tablets for a week to get my levels up quickly. Taking vitamin D made a huge difference to my fibromyalgia. Pain was reduced to just discernable. I have had huge improvement in my symptoms also by taking Q10 once a day.
I think I could use some more up to date blood work, not had any for 18mths ish
I am already on b12 jabs every 12 weeks at GP surgery so when I’m next there I think I’ll ask for a few tests xx
Thank you 😊
I had very similar symptoms as you, and it turned out to be an allergic reaction to the diclofenac I was taking at the time. My advice would be to see your GP ASAP and explain what happened. Take care 🤗X
Your hand sounds exactly how mine gets in a flare up. I can't sleep literally AT ALL because of it. When lying down, the nerve-type tingling prickling pain gets even worse, so I have to sit up all night. Walking around is best for some reason.
I've told my Rheumatologists about this (and I've had several) and none of them want to admit that it's an RA flare. They keep telling me that it's tendonitis and tenosynovitis, caused by the RA. They say that RA doesn't cause that kind of pain. I get so frustrated. I don't know what it is, but as sad as I am for you and your pain (I totally get it), I'm relieved that I'm not the only one that struggles with that kind of flare up.
It's been happening since I was diagnosed. In fact, it happened several times before I was diagnosed, which was why I was going to the doctor so much to figure out what was wrong. It took a year for them to finally test me for RA and everything came back positive for RA. Oh, and yes on the flu-like symptoms. I feel them every day. Achey all over, and exhausted.
Wow yep that’s me... and it’s like if I even try to move my fingers there’s tingly nerve pain, at one point on my worst flare to date, I felt like someone had a knife in my palm, preventing me moving anything and the prickly hot burning feelings spread from fingertips to above my elbow... just when I thought I’d got comfy it would go crazy again.... and I’d be sitting up/walking around clutching my hand like a baby 😂
How long did yours last may I ask?
It’s the hardest thing in the world to try to explain to someone but I think yours is the closest type of pain to mine I’ve heard! Mine was before diagnosis too, and I even took myself to a&e with it once! All the best to you and hopefully we don’t get it too often! Xx
The worst of it lasts usually about 3 days. The first two nights, I just pretty much have to get used to the idea that I won't be sleeping. And it's very frustrating because I'll be absolutely exhausted, and I end up dozing off, but that pain and tingling wake me up after about 30-60 seconds.
Also, I meant to tell you how sorry I am about your Dad. Stress is a huge trigger for me as well. I lost both of my parents in the summer of 2016, just 6 weeks apart. I was (and still am) devestated, and my flare ups were every 2-3 weeks. It was awful.
My hands get that vein protrusion as well, and a lot of times the underside of my wrist looks like there's a large superball in it. My fingers are so swollen and painful that they get extremely pale, like there's no blood flow, and I have to use my other hand to even try and bend them over a little bit. It's hard to explain. If I try to bend the fingers backwards, it's a pain I can't even tolerate for a second.
I've spent nights in tears due to the pain involved with hand flare ups. I've even gone to the ER once, it was so bad. They just gave me a shot of a strong painkiller and sent me on my way.
My Rheumy has had me so frustrated lately because my CRP levels went down to normal about a year ago, due to a huge diet change. But my pain and flare ups never went away. He now says I'm in remission, but I tell him I don't think so. And the last time I saw him, he was so done with me, he just told me I have Fibromyalgia. Ugh!! I have looked up those symptoms and I don't have anything remotely close to them.
I was tested for carpal tunnel, and that was negative as well. BUT, here's what I have noticed the last couple of times I flared up; and by the way, I always know when I'm going to flare. My hand gets a certain 'ache' to it, early on in the day (which also brings me to add that the flare ups have always come at night).
When I know one is coming on, I have started to lay on a tennis ball on my shoulder blade area. You mentioned your elbow pain---YES! me too!!---But check the area between your shoulder blade and the area that leads to your underarm. That is always a trigger point for me, so I started laying down on a tennis ball where that pain is. It doesn't take the flare up away, but I've noticed that it makes it less severe. I have no idea why that is, or what the shoulder blade pain is, because anytime I bring it up to a doctor (including my rheumy), they look at me like I'm nuts; but for some reason, that seems to be a big trigger point for both the hand AND the elbow.
Just something to check out the next time you get a flare up. Hopefully that won't be anytime soon!!
From the achyness before a flare right down to being tested for carpal tunnel... I had electrical conduction tests in neurology department... all negative except one nerve on my left arm does something weird but apparently an incidental finding and wouldn’t be anything to do with my symptoms....
My flares have always been worse at night too I’ve had the pain get progressively worse from 4pm onwards never had it start in the morning...
at least a&e gave you a shot they pretty much told me a&e was for emergencies only such as broken bones/bleeding.... they X-rayed my hand and said see yr GP as you obviously need some help but accident & emergency wasn’t what I needed.
I tried getting myself tested for everything including Lyme disease....
😂
my doctors all think I’m nuts too especially the GP.....
I eventually tested positive for RA
It’s nice to know I’m not alone, however I wouldn’t wish it on anyone and I wish you well!
Hi Ssmart, sorry to hear you’re having a tough time. I always flare up when I’ve been under stress, usually after things have settled down (stress-wise). It’s almost as if I’m ok while the adrenaline is pumping then after the stress, when things settle down, I flare up!! I often feel like I’m getting something like flu also st the start of a flare.
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