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Anyone want to join me on a 'I have arthritis and I'm pissed off thread'?

78 replies

mineofuselessinformation · 11/10/2019 20:33

Just that, really.
I'm sick and tired of various joints deciding to grow bone and hurting like hell.
Today's joy is a painful thumb that really let me know about it when I got stuck in traffic so was turning my ignition on and off.
Attached is a picture of the offending digit, carefully bound in KT tape as that seems to help.....

OP posts:
PotterHead1985 · 12/10/2019 00:09

Heads, shoulders knees and toes!!!....

Well neck, shoulders, elbows, wrists, fingers, upper and lower back/pelvis, hips, knees, ankles.

So sore today.

PotterHead1985 · 12/10/2019 00:09

Where do I get that tape??

mineofuselessinformation · 12/10/2019 00:11

tigger, only cocodamol for the time being (30mg). Paracetamol and ibuprofen don't touch it when I'm in pain unfortunately.
I'm going to see a GP on Tuesday morning as I'm fed up with tossing and turning at night as my hips hurt so much.

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mineofuselessinformation · 12/10/2019 00:12

Potter I get it from amazon. It's Rocktape. Good stuff.

OP posts:
scissorsandpen · 12/10/2019 00:13

What were the symptoms of arthritis in hands my left hand all fingers have been so tender for months could it be arthritis

MountainDweller · 12/10/2019 00:20

Joining in for a little moan... post traumatic arthritis in my ankle, and facet joints in my back are not good either (plus a slipped disc). Ankle is worse since a fall in the summer and I can't even manage 5,000 steps a day Sad

Need to lose weight too Blush

Am on slow release ibuprofen, OxyContin and Lyrica but they only help if I don't do much.

tigger001 · 12/10/2019 00:29

@scissorsandpen any swelling, stiffness, numbness, tingling or heat through the fingers.

There are lots of different types of arthritis that display in different ways. The doc can feel any inflammation of the joints and blood tests can show indicators of certain types arthritis.

BarbedBloom · 12/10/2019 00:39

My knee has flared and is so painful. My medication has been increased to six a day now and they have given me the huge round ones I can't swallow. Angry Sympathy to everyone

BarbedBloom · 12/10/2019 00:41

@tigger001 I am having similar problems. Also avoiding methotrexate as long as I can, but on max dose of sulfasalazine now. Hope you feel better soon Flowers

scissorsandpen · 12/10/2019 00:47

Thanks maybe I should see gp was hoping it would go away. Think those ads on TV are effective in letting people know how debilitating it can be ...

tigger001 · 12/10/2019 00:51

@BarbedBloom oh it's just horrible, hope your flare up subsides. What's the big one ?

I think they are going to try and lower my dose of sulfasalazine to see if it will be effective but not diminish my white blood count/ immunity
I can't see a lower dose being effective in terms of reducing my arthritis symptoms though 😥😥

BarbedBloom · 12/10/2019 01:04

@tigger001 It is sulfasalazine but they have the thin long ones and the thick round tablets. For some reason the thick round ones get stuck in my throat but we had to go to four pharmacies to get them, so will lump it - literally.

I know what you mean. My levels seem to be fluctuating a lot but my inflammation levels are high even on the four pill dose so am now on six. If this doesn't help I have to have methotrexate and trying to conceive has to stop. I probably can't conceive without IVF anyway but it is just another horrible dilemma my stupid body has put me into. Lots of sympathy for you. Will keep my fingers crossed about your medication situation.

CeciliaMcFlange · 12/10/2019 01:08

Oh hello my people :)

I've had RA for the last year - got official diagnosis in January. I'm on Methotrexate and 2 other drugs and until this week I've been totally fine. Those of you who are avoiding taking Metho, can I ask why? (I know it's pretty heavy duty but it's worked well for me).

I painted our kitchen last weekend and that (+ maybe a LOT of cheese) caused a major flare in my hands this week. So am on 10mg steroids + other meds until my specialist appointment in Nov. He's keen to put me on Humira does anyone have any experience of this?

Also - apart from the cheese correlation - does anyone focus on diet as a way to ease symptoms?

HeadSpin5 · 12/10/2019 07:41

Hello Cecillia (and all!) I was diagnosed with ankylosis spondylitis about 12 years ago and spent some time on methotrexate - my aversion was indeed that it was so heavy duty compared to some, especially the potential liver effects (I recall monthly blood tests to monitor, not sure if the same now?). Obviously this meant restricting alcohol intake too! Also, it’s a big no-no in terms of conception so if you are wanting children then metho is not good - I’m sure I was told you should be off it for 12 months before even trying which makes planning TTC v hard, especially if you find it difficult to conceive. I fell pregnant accidentally a couple of years off metho and was so relieved i had switched meds earlier.

Speaking of which, I was switched to Anti-TNF drugs about 10 years ago - Etanercept first and then Humira. Can honestly say they have changed my life. I still worked full time but was in constant pain, and when had bad flare ups I remember being actually frozen to the floor in middle of the room as I couldn’t move. Now, whilst I feel it if I don’t inject often enough, ten years on I have a ‘normal’ life which includes playing high impact sport several times a week (netball); something I never thought I’d do again after my symptoms kicked in when I was in my early 20’s.

It is an immuno-suppressant though so you do need to make sure you eat well, get enough sleep etc - and if you do get ill you may find you take longer to shift it etc. But all manageable.

I know I’ve been lucky, my rheumatologist says I’ve reacted particularly well to the TNF drugs (and Ank Spon in a relatively young female is unusual) but if you’re fortunate enough to be offered them (not all HAs do) then grab with both hands, would be my advice! Feel free to PM if want more info 😊

TottieandMarchpane · 12/10/2019 07:45

I’m in. My hands are driving me screwy this week. My spine playing up, I am used to, but my hands hurting like this just feels like a provocation too far.

Could it be the turn in the weather? Or is that an old wives tale?

EdersonsSmileyTattoo · 12/10/2019 08:13

Can I join please? Psoriatic Arthritis here so I have awful scabby skin as well as lots of joint activity Sad

I’m on my 8th biologic as nothing touches it, I was diagnosed 13 years ago after I had DS, my Consultant said having DS possibly triggered it.

I was finished from work in 2015 as I couldn’t cope anymore and had so much time off sick.

It’s a bastard of a disease and it’s not fair, I hobble about like I’m 90, not 47! Sad

SnipSnipMrBurgess · 12/10/2019 13:04

Edersons have you tried roactemra for the PA? Mine cleared up a treat until it stopped working.

Am on xeljans now and am struggling tbh. I need to make an emergency y appt with the rheumy

MitziK · 12/10/2019 13:41

Humira seems pretty good if the company has any to deliver.

Going through MTX asap and finding out whether it works or not seems to make sense if hoping to start TTC, as Humira is OK for that, but most places insist that MTX has been tried at least before funding is approved - if you tell them at an appointment that you want to conceive, they'll be able to advise you with that in mind. And on a purely mercenary note, as Humira is used for some people TTC off licence, it certainly won't hurt to have the medicine already approved and funded/treating your inflammatory disease, rather than trying to stretch to pay for that on top of all the other IVF treatments and procedures.

I definitely don't have as many side effects from it compared to MTX, anyway, which was sort-of-working, just not enough. I can get a headache immediately following it and get tired the next day, but I have it at night and sleep through the headache/have an early night after work the next day.

For example, my injection was 9pm Thursday, I slept fine, felt a bit rough at 5.45am when I got up Friday and work was a bit of a slog (it being the first day of my period hasn't helped). I went to bed at 10pm last night, woke up just after 7 today and I feel, well, OK - I spent a long time in the bath this morning and could feel all the little facet joints gradually loosen and free off in the process of gently stretching in there. I'm pretty sure that my feet are less swollen because a lot of my shoes seem looser, too.

However, where hip pain is concerned, I'd say get your Vitamin D levels checked. Mine was ridiculously low and my hip had been horrendous for years, despite a memory foam topper, supportive shoes (and a fucking walking stick for three months). Since I got up to better levels, it took about six months, but the pain in my hip completely vanished before starting Humira. I just had pain everywhere else to deal with

Other people, though - they're the real problem. Especially the 'Well, everybody gets backache' types. I'm politely bullish now, and not above mentioning to HR that I'm sure they didn't mean it that way, but comments about laziness regarding people who are unable to lift or stand for prolonged periods would be problematic in terms of Equalities Legislation/potentially be seen by a union, ACAS or a Tribunal as Discrimination towards people who have a Protected Characteristic.

Guess who doesn't encounter issues when it's 'normal' for staff to stand up for four hours, but smiles and fetches a chair or says 'of course the boxes will be moved, I'll call Site Team now, as they've got the equipment to do so safely'? Believe me, it took a long time getting to this point, but I don't have to apologise for having a disability and other people don't have a right to criticise - and even if they do, they can Fuck Right Off.

Reducing inflammation has another benefit - it really helps your mood, as it's not just pain, lack of sleep and the inherent physical restrictions that affect it - inflammation in itself is now being seen as a cause of low mood. I found this out initially when having steroid pulses, where feeling tearful lifted within a couple of hours and the next day always felt 'happy' - now I feel far more on an even keel - and research is backing this up.

SistersOfMerci · 12/10/2019 13:51

I love a good moan about my PsA, I'm on biologics and did my injection yesterday so just waiting for it to kick in because my bloody dip joints are throbbing today.

I've shoved a load of painkillers down my throat and surveying the utter shit tip that is my house and then ignoring it in the hop it will magically tidy itself without the use of my hands Grin

Crunchymum · 12/10/2019 15:45

I not only have arthritis but I'm lucky enough to have Psoriatic Arthritis (so I'm covered in Psoriasis too!!)

Thankfully the actual arthritis is currently in a period of remission [thanks to Methotrexate] but yeah I'm never in great health / fully energised or able to do exactly what I want (mine manifests mainly in my feet so I have to think about distances I walk / shoes I wear as it can cause a flare!)

It's been such a huge shift for me but this time I couldn't walk so I'm thankful for periods of OK health.

Crunchymum · 12/10/2019 15:46
  • this time last year
zenasfuck · 12/10/2019 15:52

I have psoriatic arthritis and it fucking sucks. It has stolen my life. I can cope with the pain but it's the mobility limitations and fatigue that get to me

HeadSpin5 · 12/10/2019 15:57

MitziK yes I definitely had to I ‘try’methotrexate before I was able to move on to Humira...

Chewbecca · 12/10/2019 16:03

I think something in the weather is affecting hands currently, mine are worse than they’ve ever been & others I know have said similarly. However, I have also just discovered that voltarol gel is pretty effective on my knuckles.

makingmyway10 · 12/10/2019 16:05

It sucks Sad

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