Here’s an odd one. My knees have been swollen forever, with pain. They feel and sound squishy. But about two months ago I noticed something different. It felt like I had a bruise at the base of the knee in front, at the knobby top of the tibia. It’s been getting worse, not better. It is visibly swollen in that area, tender to the touch, and stiffer when I first start moving.
So what do I do? I start doing some research on Google. It actually seems to fit. I realized that with enthesitis it can be tender to the touch. So I look, and not surprisingly, there is an attachment point right on the tibial tuberosity, that knobby top of the bone. I may yet go to the doctor to be seen, as it is getting worse, not better and it has clearly been sticking around.
So now I’m curious, anybody else experience this type of pain and swelling? Did you get seen by a doctor and what happened?
Yes, I have Stoney. That 'bruised' feeling for me now extends in an arc right across below both knees. It is very tender to touch and sometimes when I'm standing or walking for too long it can really start to throb. It's a different pain to that inside my knees which I get say, going from sitting to standing, walking up the stairs or the odd time I'm stupid enough to try kneeling (tried it last week and got stuck on the floor!). The MRI's I got last year didn't show much of anything to explain what is going on. My new rheumy and most recently a knee surgeon examined them and the simple conclusion is soft tissue involvement ... so yep, entheses and tendons.
How are your elbows? I've got the same tenderness over the epicondyles. And front and back of my shoulders. Rheumy said that anywhere/everywhere there are tendons. Other than when I'm touched it doesn't particularly trouble me but I suppose it contributes to my overall discomfort and limitation.
It's all on my list of things to discuss March 9th back at the rheumy. Happy to share anything new which comes out the discussion.
Elbows it’s the joints. . . No tenderness to the touch. I don’t tend to get a lot of enthesitis, so this is definitely frustrating for me. Kneeling is utterly impossible, but the problem is that squatting isn’t a good plan either. I think I go next month too. Is there any treatment done for this?
I'd be interested to hear if there are treatments/avoidance techniques. I have it in my elbows like Jules and it can be triggered by reaching for/holding a 2-3lb object. After doing soft tissue damage where the achilles knits into the calf muscle my doc suggested compression garments for the areas that are frequently injured. This seems to work pretty well. I wear tubigrips on my arms from wrist to bicep if I'm going to be doing anything remotely "housework" related. And I have very strong compression sleeves for my calf muscles. I think the principle is that the compression doesn't allow the tendons to fully relax and avoids the spring/snap from being as dramatic as it might be which, then, lessens the impact on the insertion point (like how those tennis elbow braces apply constant pressure). Anyway, I'd hardly call it treatment but it has helped. When I remember (which I frequently don't).
Nothing I'm aware of Stoney but I wonder if icing might relieve it? Totally understand on the kneeling, even on a soft thick surface it hurts and my knees feel 'full' although I will do it in an emergency so long as I'm ultra careful and don't bend beyond 90 degrees but for me squatting is and has been impossible for well over two years .... feels like the whole knee will explode!
I agree with Jane, though, I can often improve how my joints feel and function with compression/support.
This is how mine all started! My knees hurt so bad and just walking up the stairs to my front door I tore ligaments and my meniscus. I have had to have scopes done on both knees and of course things repaired. This is how everything started for me years ago. 5 years later we are still trying to figure out what treatment to do. I have my first infusion tomorrow with Remicade. I am so nervous. Butt all other meds have failed.
I am using ice when necessary. I should try compression and see if it helps any. I’ve been using calf sleeves for my shin splints with a lot of success.
Jules G said:
Nothing I’m aware of Stoney but I wonder if icing might relieve it? Totally understand on the kneeling, even on a soft thick surface it hurts and my knees feel ‘full’ although I will do it in an emergency so long as I’m ultra careful and don’t bend beyond 90 degrees but for me squatting is and has been impossible for well over two years … feels like the whole knee will explode!
I agree with Jane, though, I can often improve how my joints feel and function with compression/support.
Stoney, I can endorse the compression garments made by 2XU. The recovery garments are not as snug as the compression garments. And the tubigrips come in different widths (to fit tiny wrists all the way up to big old thighs!) but as they come as a long tube you can cut to length to fit your needs. I have found these really helpful and keep two boxes (one for wrists/forearms and the other for upper arms) and they are really easy to customize. They also hold up a few times in the wash before the elastic is worn. Much easier to manage than elasticated bandages and less bulky than the Futuro wraps and braces I have tried.
PS: I have received no financial compensation for this endorsement ;)
Stoney said:
I am using ice when necessary. I should try compression and see if it helps any. I've been using calf sleeves for my shin splints with a lot of success.
Mine had gotten so swollen and tender that I finally decided to have it drained. That, plus the steroid injection helped for a few months. I'm going for an MRI to see what's gong on in there. It didn't get better with a bio change, and it gets so big that my pants are uncomfortable on that leg!
Never had any problems with my knees until yesterday when my right one swelled up in the space of 3 hours. Can’t sleep, walk or function. Feels like somebody has stabbed my knee with a knife. Not seeing rheumy for another 10 days and pain is so excrutiating - even with a compression wrap thing. God knows how I’m going to survive … Wondering what exactly the mtx is doing for me as it hasn’t helped my feet, wrist and now my knee. Any ideas for pain relief as ice, tylenol, heat aren’t helping at all?
Golfnut,
I use ibuprofen, or Aleve, especially if taking MTX. You want to avoid Tylenol since it can also be toxic to the liver, in addition to the MTX. Personally, I like to elevate, and heat my knee.I know it doesn’t really help the swelling, but it sure does make it feel some better.
How long have you been on the MTX? It took some time for mine to work enough to give significant relief, about 8 weeks or so. Talk your rhuematologist about increasing the dose or doing something different. There are some nice options for pain relief and for increased disease control. My knee aspiration and injection helped a ton. Oh, dont forget to ask for new imaging of your knee. An MRI would be best for the soft tissue stuff. Also, you can call and ask to be wait listed for an earlier appointment of they have a cancelation.
I can’t take nsaids I’m afraid so all I’m left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it’s actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
I know it sounds like not much for the level of pain that you’re describing, but what about a topical like icy hot or something like that? It more or less tricks your brain and can lower your pain level.
Also, if the knee is that bad to,or row, call your doctor up. They might keep emergency appointments open for situations like yours.
If you’ve been on MTX at the max dose and questioning if it’s working, then it may not be. I took it for six months with no improvement. Fourteen months is way too long to be waiting for it to work.
Just a comment about Tylenol/Paracetamol... I wasn't impressed when I was told to take it after my hip replacement - it didn't seem likely to be helpful at ALL! But the ortho nurse explained (and then I found out it was true for me) that generally we take it in the wrong way - just occasionally when we've already got a pain that we want to get rid of. It doesn't work well like that; but for many people, it is much more effective if you take it regularly at maximum dose, and then it builds up and starts working properly after about 48 hours, and provides pretty good relief for as long as you take it. You might be unlucky and be one of the people who don't respond to it at all, but if you've just been taking it the 'normal' way, try the 'max dose' way before you give up on it :)
Golfnut said:
Thanks grumpycat
I can't take nsaids I'm afraid so all I'm left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it's actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
I have had this for a couple of years, though it got much better after my first depo steroid injections, and is getting better again after the second one I had last week. It is particularly bad below my kneecaps, the tops of my feet, the backs of my ankles, my wrists, and sometimes the sides of my jaw, my fingers and the back of my pelvis - basically anywhere there's an attachment point, and esp where ligaments attach.
I decided about 6-9 months ago (after various online research) that it was very likely enthesopathy. I didn't have a diagnosis of inflammatory arthritis at that point (let alone PsA specifically) but I did (and do) have a (possibly wrong) diagnosis of hypermobility syndrome, which is a connective tissue disorder that particularly affects ligaments and makes them 'too stretchy', so it made sense that some of the attachment points might be sore...
My own experience is that doctors have not been very interested, although for me it has been a major concern, since it explains most of my significant and chronic pain. When I raised it with my GP, he agreed that could well be what it was, but he wasn't certain (fair enough; they're 'generalists', not specialists). The rheumy would hardly let me talk about it, and actually refused to examine me when I asked him to feel the lumps and swellings, and dismissed my pain as fibromyalgia. However, if I had already had a diagnosis of PsA, perhaps he would have been more interested...
There are several things that help me... Long-term, losing weight and exercise (swimming, in my case) to build muscle strength have definitely helped, especially with my knees. Keeping hydrated also seems to help. Avoiding any of your general inflammation triggers will help too, since it's yet another form of inflammation... Medium term, depo steroids help, but of course you can't keep using them. I have never taken steroid tablets, but I imagine they may help too. Short-term, compression helps (strapping, and even just wearing tight leggings!) but you do need to be aware that if you strap too much, your muscles don't have to do so much work, and as they become weaker your pain increases. Heat helps - my pain is much reduced in warm water, saunas, etc. Ice very definitely does NOT help me - though it does with muscle aches. Personally, I think that the cold causes contraction in the ligaments and so increases the tension at the attachment points, but that's just speculation.
Nothing so far, however, has made it go away. It is probably the worst symptom for me, and I hope that when my disease is properly controlled, it will improve.
If you haven't found it yet, the website www.enthesis.info is very informative.
You could also discuss a topical nsaid. Thosework well, unless youre completely allergic to them. Golfnut said:
Thanks grumpycat
I can't take nsaids I'm afraid so all I'm left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it's actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
This is absolutely NOT how to take tylenol. It is every bit as dangerous as MTX As far as hepatotoxicity. Some nurses don’t update the information they give to patients. Odd like to link an article, but my phone won’t allow it. Just Google, tylenol toxicity.
flow said:
Just a comment about Tylenol/Paracetamol… I wasn’t impressed when I was told to take it after my hip replacement - it didn’t seem likely to be helpful at ALL! But the ortho nurse explained (and then I found out it was true for me) that generally we take it in the wrong way - just occasionally when we’ve already got a pain that we want to get rid of. It doesn’t work well like that; but for many people, it is much more effective if you take it regularly at maximum dose, and then it builds up and starts working properly after about 48 hours, and provides pretty good relief for as long as you take it. You might be unlucky and be one of the people who don’t respond to it at all, but if you’ve just been taking it the ‘normal’ way, try the ‘max dose’ way before you give up on it
Golfnut said:
Thanks grumpycat
I can’t take nsaids I’m afraid so all I’m left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it’s actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
Unfortunately I can’t even tolerate a topical NSAID. I think I will call to get a steroid injection - really worked well on my feet, call rheumy to fast-track humira and maybe get a short-term strong pain relief to use in emergencies. I keep having these mini flares - no idea what they are - one nurse once said to me it was a rheumatic attack, where I am laid out for 3-4 days with severe swelling and horrible pain - usually in my shoulders or elbow but this time in knee. Thanks for all of your advice and help - you’re always understanding and supportive …
Maybe the guidance is different in the UK and US, GrumpyCat? Paracetamol (which is what we call Tylenol in the UK) is the recommended first-line analgesic for all sorts of pain relief, including all mild-to-moderate pain, and pre- and post-operatively if you have a hip replacement or bone fracture. (See for example this national guidance: https://www.nice.org.uk/guidance/qs16/chapter/quality-statement-4-analgesia and http://cks.nice.org.uk/analgesia-mild-to-moderate-pain#!scenario ). I was prescribed 4g/day for 12 weeks, post THR. Of course, people should always talk to their doctor about any drug changes, and if you're on MTX or have any other risk factors for liver problems, you shouldn't take it at all.
GrumpyCat said:
This is absolutely NOT how to take tylenol. It is every bit as dangerous as MTX As far as hepatotoxicity. Some nurses don't update the information they give to patients. Odd like to link an article, but my phone won't allow it. Just Google, tylenol toxicity.
flow said:
Just a comment about Tylenol/Paracetamol... I wasn't impressed when I was told to take it after my hip replacement - it didn't seem likely to be helpful at ALL! But the ortho nurse explained (and then I found out it was true for me) that generally we take it in the wrong way - just occasionally when we've already got a pain that we want to get rid of. It doesn't work well like that; but for many people, it is much more effective if you take it regularly at maximum dose, and then it builds up and starts working properly after about 48 hours, and provides pretty good relief for as long as you take it. You might be unlucky and be one of the people who don't respond to it at all, but if you've just been taking it the 'normal' way, try the 'max dose' way before you give up on it :)
Golfnut said:
Thanks grumpycat
I can't take nsaids I'm afraid so all I'm left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it's actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
Seriously. Don’t ever take tylenol in high doses unless you hate having a functioning liver. The dosing for almost all meds is to take the lowest effective dose, and this definitely holds true for tylenol. I don’t think there are different schools of thought. It is the number one contributer to modern hepatotoxicity.
flow said:
Maybe the guidance is different in the UK and US, GrumpyCat? Paracetamol (which is what we call Tylenol in the UK) is the recommended first-line analgesic for all sorts of pain relief, including all mild-to-moderate pain, and pre- and post-operatively if you have a hip replacement or bone fracture. (See for example this national guidance: https://www.nice.org.uk/guidance/qs16/chapter/quality-statement-4-a… and http://cks.nice.org.uk/analgesia-mild-to-moderate-pain#!scenario ). I was prescribed 4g/day for 12 weeks, post THR. Of course, people should always talk to their doctor about any drug changes, and if you’re on MTX or have any other risk factors for liver problems, you shouldn’t take it at all.
GrumpyCat said:
This is absolutely NOT how to take tylenol. It is every bit as dangerous as MTX As far as hepatotoxicity. Some nurses don’t update the information they give to patients. Odd like to link an article, but my phone won’t allow it. Just Google, tylenol toxicity.
flow said:
Just a comment about Tylenol/Paracetamol… I wasn’t impressed when I was told to take it after my hip replacement - it didn’t seem likely to be helpful at ALL! But the ortho nurse explained (and then I found out it was true for me) that generally we take it in the wrong way - just occasionally when we’ve already got a pain that we want to get rid of. It doesn’t work well like that; but for many people, it is much more effective if you take it regularly at maximum dose, and then it builds up and starts working properly after about 48 hours, and provides pretty good relief for as long as you take it. You might be unlucky and be one of the people who don’t respond to it at all, but if you’ve just been taking it the ‘normal’ way, try the ‘max dose’ way before you give up on it
Golfnut said:
Thanks grumpycat
I can’t take nsaids I’m afraid so all I’m left with is tylenol which is just useless. Must ask doc for an emergency strong med. have been on mtx for about 14 months and am at max dose - just wondering if it’s actually helping at all. I tried heat but that was worse - ice seemed to help a little bit. I will definitely ask them to look at my knee xx
