Swollen joints

I just realised today that I assume that other people have swollen joints that just refuse to go down but don't know for sure. Does anyone else have stubbornly swollen joints? (My knees have been swollen for nearly 2 years with only a little fluctuation.) Luce xx

[ShiningStar]

hello Luce i hear you at swollen knees ,,,mine are constantly swollen at the back & ache ,,also feel weak. My thumbs always swell,,,,& sometimes i wake up to a swollen toe & cant walk for afew days grrrr ,,your not alone!,,oh the joys of RA x

[Hidden in reply to ShiningStar]

Thanks ShiningStar! I've got so used to swollen knees and now wrist that I almost feel like they are normal. Weirdly, although things are not so good in some ways, walking is getting easier all the time! Maybe it's that Sulphasalazine which we have both just started! (have just answered your question.) x

[ShiningStar in reply to Hidden]

Your welcome ,,,it gets so frustrting at times because of how your body feels ,,fatigue ,,,side effects etc ,,,i find my emotions often take over . Ive been told not to worry if everything look orange when i go to the loo ,,,its harmless im told lol ,,,i wish you all the best hun ,,thank you ,,god bless x

[Hidden]

I never really swell Luce so can't help. The only constantly slightly puffy part of me is two knuckles and a forefinger middle joint but they don't really bother me except in the mornings when I struggle to bend my fingers until I've run them over with hot water. I was told by rheumy that one of my knees was inflamed when he diagnosed me and last year the physio told him in my telemed that my left wrist is a bit inflamed - which I noticed it still is but it doesn't hurt and I've assumed maybe it's just because my watch strap is a little bit tight? Ironically the worst pain I've experienced with RA has been in my wrists and the right, unswollen one most of all and yet zilch to see or feel. I don't think you should just see swelling as normal though. Tilda x

[Hidden in reply to Hidden]

I don't see it as normal when I think about it but I have got very used to it - just as well in some ways as I go swimming regularly without any self-consciousness & I'd be happy on a beach etc. Come to think of it I'd be VERY happy on a beach right now! The only time my wrist has really given me gip lately was when I wore a watch though it wasn't that tight. x

[Hidden in reply to Hidden]

Surely your rheumy has noticed the swelling though Luce? Probably this is one of the main reasons they want to get you onto anti-tnfs soon when they have gone through the motions with the sulpha? I think you should be excited at this prospect myself - the side effects are supposedly less if an issue and its much easier just injecting a drug once a week or every few even than swallowing pills in my book.

Speaking of which my wrist and hand flared up last night and so did my gallstones and my mouth went so dry I couldn't swallow - felt a bit worried about which NSAIDs to take re the sore tummy so this morning I've got my best splints on and am back to hassle my doc (can't believe they fitted me in on a last mo cancellation!) for what anti inflam meds to use as completely out of practice with drugs nowadays and not sure with sore belly either. I wouldn't bother him again but OH off on the boat tonight and I'm a bit concerned about being left with 2 energetic mutts and a revising (sleeping!) teenager for 5 days if my right wrist is starting to play fracture again. Blinkin' typical!

[Hidden in reply to Hidden]

Yes, as I replied to Polly the swellings have impressed all Rheumys so far! And it is one of the reasons for anti-tnfs being mooted. I'm not dissatisfied with my Rheumy on this score .... just wondering how common persistent swelling is.

Sorry to hear that wrist & gallstones are complaining but glad you got an appt. so quickly - hope you get some prompt help. Yes, so typical for stuff like this to happen when you've got more to do. Hope your revising teenager can be persuaded that dog-walking & feeding are good for fact retention! x

[Hidden in reply to Hidden]

Oh yes sorry to make you spell it out twice Luce re your swellings. I suspect that visible swelling is as much an asset as inflammatory markers that can rocket and positive RF and anti-CCPs in that means active RA but it also helps a person be taken seriously. However I realise that being taken seriously isn't the issue for you really - more about coming to terms. In this sense we are lucky on some levels and just have to follow medical advice as proffered and unlucky that we both have questioning and worry pot personas.

I am now numb, achy, tired beyond reason, fizzing with heat and numbness and obsessed with my night resting splint that was made in the hospital this time last year for right wrist flares - my only wish is that I had one such for both ankles and feet and actually for my whole body would do nicely - like a hollow Antony Gormley made out of a mold of my body (would look truly horrible especaily round the midrift). Gormley wouldn't favour!

Hard to work out why something so hideously unattractive (peachy pink with white plastic and bright blue straps) can actually be so comforting and relaxing really but it really is. Especially as I can't hit the Naproxen until after I've delivered boys to the boat and returned home at 11.30 because it always makes me a bit snoozy.

Revising teenager pah! He's currently arguing about Scottish Independence with his older brother - who is thoroughly pro and has the bit between his teeth and the confidence inspired by a place in a good Scottish uni to read International Politics. When that's finished he will no doubt go straight back on Facebook!

[Hidden in reply to Hidden]

My kids still make me happier than anything but I remember the teenage years as a very mixed bag! It is beginning to sound as if you will be quite relieved to rekindle your (perfectly normal!) love / hate relationship with mtx! Ah, one sign of improvement & worry goes out the window .... for a while anyway.

[Hidden in reply to Hidden]

Yes I think I'm ready for a love-in with my metoject now! - wouldn't be the same for the pills though - always found them rather daunting? It has also made me appreciate how improved I felt with stiffness and general lack of tingle once I started taking MTX by injection - which directly corresonded with my ESR dropping dramatically and staying down. Good to feel that bloods and symptoms (even irregular and unusual ones) and the drug I'm taking all match I feel. I am wondering if dropping the Hydroxy (GP wants me to forget this drug now) will mean that I have to go up a bit with the MTX or whether 17.5 will continue to hold things down on it's own. Hopefully the latter.

Sorry this was your blog and I'm waffling about me. I love my boys and am dreading having two living far away soon but wouldn't want it any other way either. Our whole house is now full of teens and youngest is having a wee house party. Tilda xx

[helixhelix]

No, no, no.....I used to have podgy swollen knees and wrists and sausage fingers but the meds finally sorted them (plus rheumy with large syringe sucking out gunk), so I think you should keep pushing to see if this can be improved. I still have pudgy knuckles but rheumy said that this was typical so not to expect them to slim down, but other joints now look reasonably ok. Maybe you'll have to live with them eventually, but don't give up hope yet. Px

[Hidden in reply to helixhelix]

I gather you think long-time swelling is a no-no? In a way I'm fortunate as obviously swelling is a very visible sign that something's going on & Rheumys always take it seriously. They tell me it will go down eventually when something works well enough & your story helps me believe that. I've not had much luck with gunk removal - some improvement but swelling came back very quickly. x

[helixhelix in reply to Hidden]

Imagine middle aged women with podgy knuckles gamely doing squeaky Bjork impression..."one day it will happen, one day it will all come true, tra la la la la etc etc " Px

[Hidden in reply to helixhelix]

That's basically how I spend my free time.

[lynn-bel]

Hi

My knees have been swollen since diagnosis, 13 yrs. Always had podgey knees but worse sine RA. They dont hurt or feel swollen all the time but lately have been sore iand felt inflamed (you know, when they feel tight?) so have been taking more paraetemol and also Naproxen for the inflammation. I will ask at my next cons. appt early May about them a they seem to be bad at the moment - creaking and crackling quite a bit.

I still do exercises - walk, Wii Fit, and the Range of Movement (ROM) exercises on the Arthritis Care website so as to keep them mobile and supple.

I did have fluid drained off them when first diagnosed as the GP said there was a lot of fluid in them. That helped enormously. I test mine to see if they are retaining fluid by doing the "press" test - if they bounce back and the normal flesh colour comes back they are okay (did i explain that right?).

I would ask your GP or Cons. about it in case they can do something - are they painful all the time or just swollen with no pain?

Try Voltarol rubbed in them if they sr sore and swollen.

I never show my knees anymore - way too ugly!!

Lynn x

[Hidden in reply to lynn-bel]

Mine are making loud noises too. I also get very odd sensations in my lower legs - I've called it 'fizzing' before but perhaps it's more like air bubbles moving around and is linked to cramp in that it often comes at the same time. It lasts for hours, usually at night.

I've never mentioned the odd sensations or cramp to a doctor but I will. My Rheumy is aware of swellings & on the case but nothing's got them down so far. It is all fluid in my knees, not sure about my wrist.

I don't have a lot of pain at all - my knees don't work too well sometimes, they make a real bloody fuss when I want to get out of a chair but I can walk for miles usually. I do have a lot of erosion so they are kind of Sore Plus if that makes sense but not rotten pain.

13 years is a long time - have you managed to avoid joint damage? Thanks for replying. (Are you sure your knees are ugly? I think of mine as being rather voluptuous!)

x

[lynn-bel in reply to Hidden]

Hi, voluptuous is a better word! Like you, I can walk quite a distance with no problem and it is getting up adn down from sitting or usig the stairs that can be the problem. As far as I know I dont have joint damage tho' I must have some I guess, considering its been 13 years. Havent had x-rays since diagnosis, never on my knees so praps I need to have that done. Luckily havent needed joint replacements so think I am fairly lucky. How do you know about the erosion - through x-ray?

i may need to ask some questions at my next rheumy visit (if they give me enough time!)

x

[Hidden in reply to lynn-bel]

Stairs are hard going for me too - but I don't think it's the swelling that's the problem as much as the damage. X-rays showed up the erosion of cartilage and bone. It seemed to happen very quickly although the worst damage did correspond with a couple of periods of very nasty systemic illness.

I've recently had hands and feet x-rayed & I had to get quite assertive for that to happen.

It's so good being able to walk & walk isn't it? I'd like to be able to run & dance too but sadly that's not happening. x

[lynn-bel in reply to Hidden]

Oh, I really miss my jogging/running but yes, arent we lucky we can walk a ways - I regularly do country walks with a group that are about 3-1/2 miles but lately my feet are causing me problems so am cutting the distance down a bit. I find its better to do little and often at the moment. I do take Green Lipped Mussel supplement that is good for joints and cartilage so hopefully that helps. Wont list all the supplements i take - too many. I do think they help me though.

We just have to keep on trucking!!!

x

[sammiebabe70]

My Feet, Ankles Hands and Knee's are always swollen, im on 17 tablets a day and i feel nothing is working

[Hidden in reply to sammiebabe70]

I match your tablet consumption on a Sunday when I take my mtx. If anyone had told me a few years back that I'd soon be popping pills at this rate I'd have been distraught but now it's a grotty form of normal.

Thanks for replying, I suddenly wondered whether I was the only one!

I hope something works soon for you and for me. x

[lynn-bel in reply to sammiebabe70]

Oh, how awful for all that to be swollen - my hands swell only intermittently. There are good supplements like Vit. E, Starflower Oil and Fish Oil that are good for inflammation, they help me but everyone is different and you do have to give them a few months to kick in.

Have you looked at diet at all? I think that makes a difference as well.

Does your GP, cons. have any thoughts?

x

[Hidden in reply to lynn-bel]

I know you were replying to sammiebabe but I'm interested in supplements & wonder which of the three you mention you'd recommend for starters! x

[lynn-bel in reply to Hidden]

Hi Woolly and Sammiebabe - putting on weight is frustrating. I know some people lose weight withRA but not me. I am currently going to Weightwatchers and ahve lost 20lbs and feel so much better. I also eat healthiy and exercise but I think my age (64) and being retired now has slowed my metabolism down, so I have to fight harder!

Ref. supplements - I would def. take Fish Oil, Starflower Oil and Vit. C to start off with - Vit C is good for lots of things and is also anti-inflammatory. If you only want to take one, take the Fish Oil.

Taking MTX reduces ability to fight off infections and colds etc. so I take Vit. C to ward off colds as well. It''s the Omega 3 in fish oil and the GLA (Gamma Linolenic Acid) in Starflower Oil that is good for anti inflamm. Do give it a couple of months to take effect, dont give up if you dont feel any difference right away. Works for me but again, eveyone is different.

Good luck with it all!

Lynn xx

[sammiebabe70]

I have put on 3 stone in a year, my diet is healthy and i try to exercise i have convinced myself that the meds have made me fat lol...Sorry Woolly for taking up space

[lynn-bel]

Sammiebabe70 - see above.

Ask your dr. if you should be putting on weight with the meds, I asked and got a no, which prompted me to take action!!! I was gutted I couldnt use MTX as an excuse.

[Hidden in reply to lynn-bel]

Don't apologise for your input Sammie - this seems a very useful discussion to me. Lynn-bel I'm going to try fish oil ... also someone on here a few months back mentioned that acupuncture helped with swelling & inflammation so I might give that a go but at the moment I'm about as proactive as the average dishcloth. x

[lynn-bel in reply to Hidden]

Good luck with the fish oil. Holland & Barratt are very knowledgeable and helpful if you have questions of what to take. I also buy from Highernature.co.uk and they have nutritionists you can talk to. Their products are a little more expensive but from very good sources and high quality stuff. No shipping charges either!

x

[Tinwoman2]

Yes, Luce, I have fingers & hand knuckles & my right big toe that have been swollen for years. Even surgery on my knuckles didn't stop the swelling. At least my hands don't hurt much, usually. I've been on Mtx, Arava, plaquenil, prednisone & folic acid for way over 10 years. I am eating better than ever & exercising (walking) 3+ times a week. The swelling is 'normal' for me.

Hope you get answers soon on your swelling.

Christine

[Hidden in reply to Tinwoman2]

Glad to hear that your hands don't hurt usually. I used to think that the swelling was a temporary thing but evidently not necessarily. I tend to think of it as the least of my problems and it's interesting that it can go on and on without causing too much trouble (?). But puzzling. Like Tilda says it does help get Rheumys attention though! x

[Neonkitty]

Hi Luce, sorry you have swollen issues. I am very swollen In places and it is often the pooling of fluid into my ankles or the inflamed swollen tissues over my knees and behind them. Combi of fluid and tissue. Has always gone down with steroid injections. It creeps back in. I am now awaiting a biologic.

Sometimes the Rheumy has managed to draw off a lot of gunk from knees and I have then been able to walk but sometimes she has said it is the inflamed tissues and not fluid so there is nothing to draw. Quite recently I had a Baker Cyst behind the knee which was isolated and would not easily drain. I have found when my RA well under control I have no swelling and when out of control like now ... Swelling, immobility and rotten pain as you have had (so sorry as I know where you are with that). My hand knuckles are always the first tell tale sign as they lose definition and they don't have mountains or valleys if you know what I am saying! They return to normal once the RA under control.

Hope you are soon less puffed and feeling much better. I am slim but my knees are like blancmanges just now, losing their definition, but I can see worse knees .... Much bigger knees from whom I imagine are people without RA, wandering about in shorts and above the knee dresses, so don't hide them away. Let some air on them when this warmer spell starts! Treat yourself to some nice shorts and vow to wear them outside!! ;-).

I hope you can be considered for an anti-TNF. I am almost there ready to start.

Love Julie xx

[Hidden in reply to Neonkitty]

Thanks Julie,

Many moons ago I used to life-model for art classes and I remember one woman huffing & puffing & when asked what was wrong she said of me 'she's got the worst knees I've ever seen!'. So healthy & knobbly or RA-ed and puffy I'm obviously not blessed in that department. I'm not especially self-conscious about them though and I'm quite happy in my own skin generally -life's too short not to be.

Yeah I think my swelling went down somewhat with a combination of steroid injections and tablets - but it's never gone down completely. I've not had real pain for ages though & don't need painkillers - just take Naproxen for the anti-inflammatory effect. So anti-TNFs have been mentioned because of hard to control inflammation & speedy joint damage I think.

I was talking to my youngest son on the phone last night. He's not always the most sensitive of men & hasn't really engaged with what's going on with me. I told him that my Rheumy doesn't seem to think that DMARDs will work in my case & that I have to have another high DAS score in order to qualify for anti-TNFs. My son thought about it for a moment and then said 'That must do some funny things to your head ... 'cos you want to do everything you can to get better but on the other hand you've got to stay bad or even get worse to get the drug that's most likely to work!' I think I've underestimated him!

Glad you are getting there with the anti-TNFs - hope it all happens soon & makes a huge difference to you. Thanks for replying. x

[Neonkitty]

Hi Luce

It is a nonsense isn't it that you have to go down the slippery slope for the anti tnfs! My husband said exactly the same as your son!

xx