The above has become a very painful problem for me. I am waiting to get new orthotic review. I did get an injection in this sqidgey ball of liquid but doc got nothing out and it did' nt help. Do I need an MRI now in this ankle. I just can't face more surgery. :(. My Rheumy has advised going back to the surgeon that operated one left ankle last year.
Any insights welcome.
Gina.
Orthotics should help, get them to do it soon it can't be doing you much good as it is as you'll be adjusting your gait to compensate. I don't have much to contribute here except I hope you can get some relief soon.
X c
I too have this problem. I constatly have a swelling on my left ankle all around the ankle joint and it gets incredibly painful. My rheumatologist dismisses it eveytime i mention it. In fact it has got to point I am seriously thinking I need to ask for a referal to another rhematologist as i have no relationship with the one i have and dread seeing him.
Thanks for replies.
@ Dgordn, my rheumy seemingly not note rested either, but did Suggest having the surgeon review. I have had a fusUSB on the other ankle which worked well. My guess is the tendons & ligaments have collapsed ( that was the case in the other ankle) supporting the ankle structure due to the RA, when it was very active.
Well I will probably rng the surgeons sec on Monday, as rheumy says I don't need another referral. It's just one big miserable round of doctors, nurses and consultants. One problem leads to another. My bloods are normal, well no inflammation now. Does this mean all this damage was done when my ESR & CRP were high, a few years ago? The whole thing is so confusing, and you don't seem to get definite answers from Rheumys even when you ask questions like this.
Xx Gina.
Sorry shoud read interested & fusion. Damn iPad!
Hi Gina. Sorry you are having this trouble. I suppose the rheumy sees their job as being more to do with preventing us getting to the stage your ankle is at through drug therapies - once the damage has occurred it becomes a surgeon's problem and I'm guessing that inflammation that won't go away despite the drugs represents a degree of failure for them so no wonder they aren't interested?
My ankle tendon was bad for about four months and got so swollen (as you describe a hot puffy ball of flesh by my ankle bone) I couldn't walk on it at all for a few days. But as soon as my dose of MTX was raised to 17.5 it seemed to die down as did the pain in my knee joints. My physio seemed to think it was unlikely that it would have done damage because it was in the tendon/ soft tissue rather than the joint in my case. I'm fine now but dreading it possibly coming back once I drop my dose back down on Tuesday - but maybe it will stay away this time - here's hoping. I hated limping and found that other joints played up more because of my poor gait. I think you need to get those orthotics sorted out and see the surgeon ASAP. Good luck and hugs from me. Tilda xxx
Thanks Til,
I have had 3 sets of orthotics, and this 'ball' only recently appeared. Im not sure if the mtx will have any immediate noticable effect so dont worry. The damage is incidious, and as it is ligament & tendon, takes a long time to notice damage. Hopefully, your Rheum is right tho 4 years down the road with this disease, Im not sure of anything anymore with this disease.
#
xx Gina.
I know Gina - that's why I explained to him that I'm worried about the high ESR readings even without any pain. I think, as you say, this disease can be so insidious that even despite my rheumy's reassurances that disease activity is mostly reflected in pain and visible swelling I still feel an element of doubt. And unlike you I have sustained no damage to any joints or tendons yet so I have no real evidence to back up this worry.
I did ask a helpline person from this site once if with low level or even no pain the RA could still be doing it's dastardly worst and they thought it could. But my rheumy felt that this was unlikely so I'm hoping he's right. The thing is that so many members on here are experiencing pain with low inflam markers and not being taking seriously that I think and hope my rheumy must be right to say that pain is the guiding factor that doctors should listen to first and foremost. But I'm still not 100% sure that the pain isn't caused by earlier bouts of gnawing away of this RA by invisible stealth! This would explain high ESR readings with no pain followed by pain with low ESR and CRP would it not? TTx
And as someone helpful pointed out to me on my last ESR/ CRP question this reliance on high inflammatory markers as a sign of disease activity is dubious. It certainly confirms my rheumy's method of assessment.
jrheum.org/content/36/8/1568.full
I quote;
"Myth 2. There is a rational cutoff for active/inactive RA
Rather than distinguishing healthy persons from those with RA, ESR, and CRP are most often used as measures of RA activity. The usual clinical trial activity cutpoints for ESR are 28–30 mm/h and for CRP range from 1.0 to 2.0. However, there is no clear rational cutoff for activity (or for normality) of ESR/CRP in RA4,5?. Many people with active RA have inactive values of ESR/CRP and many with inactive RA have active values."
Sorry for failure to credit you Feather! I hope this works;
jrheum.org/content/36/8/156...
He is probably right, and so good your pain has reduced with mtx. As you are not on steroids, which seem to mask the pain, I woud have faith in the Rheumys assessment, you really do have to believe they know their business.
I was on steroids for two years before my inflamm rates reduced, but it is really difficult to say exactly when the disease activity started, could have been years. The goal of a rheumy is to get inflamm markers in blood to a normal level if possible with medication. Also, of course they take into account how you are in appearance etc, but mainly they seem to watch bloods for disease activity, well in my experience.
I don't believe that tey can say for sure what us going on in a joint, as an MRI is the only accurate way to know. I personally have had very little swelling.
Tilda, as we all know, everyone is so different in their experiences, with meds and pain and damage, we are all learning , most f us the hard way too. I think if you are feeling well and having some relief we should enjoy these times, I have had a good while, with little pain as such. Try not to worry bout what may or may not be happening, because this kind of thought is very frightening, and I think our bodies tll us quite quickly when something is happening.
You seem to be getting the kid of care and reassurance that we all knew you deserved, but it takes a professional to tell you ths.
I am so glad that you have a treatment plan in pace, and seem to be managing well these days
Kind regards, Gina.
Oh well I'm still confused Gina but as you say we have to trust the professionals charged with our care. I did quiz him a bit about this and he said that the ESR markers are still an important tool and often tarry with symptoms but not always. And if they don't, as in my case, then the absence of symptoms has to be the more significant thing to go by. In a way the high markers are quite useful in my case because they are keeping him focused and might ensure I get seen again in four months time I'm hoping.
You are right we have to trust the way we feel but my problem is I've been feeling pretty lousy since the rise in dose 2 months ago - I don't know if this is just coincidence though. So the consistently high ESR is making me wonder if something else is going on that's making me feel so generally unwell if you see what I mean? I'm seeing the GP tomorrow and am full of cold now after a week of a throat thing following 4 weeks of tummy stuff - blah give me back some normality one day soon please!!
Hope that ankle sorts itself out it's so disabling isn't it? TTx
Have you also asked about getting some physiotherapy? Not instead of, but as well. Since everything's connected I find that the stretching exercises I was given for my calves really help my feet, and so on. And if you've got some bits that are collapsed then even more important to make sure everything around is as strong as it can be? But sounds miserable, so v sorry. Pollyx. (and if anyone knows how to permanently stop iPads deciding what it is you wanted to write, then do tell...)
Thanks Polly, I do walk as much as I can and no they hav'nt suggested any physio. in fact after my ankle surgery the surgeon specifically said no physio! no explanation? I thought maybe as ligament & tendon damage rather than muscle, oh i am nor really sure will mention to my GP next visit.
G
Hi Gina,
I had a 'sqidgy' swelling on my right shoulder. Eventually about 18 months down the line my rheumy consultant arranged a visit to relevant consultant. Having seen the surgeon and had an MRI I was told they would do a minor op to remove it. Meantime went on to rituximab. By the time the appointment for the op came through the squidgy lump had disappeared. Dont know if it was the rituximab or if it cleared off in fright !
I will be seeing my rheumy at the tail end of August and it will be interesting to find out what he thinks it was.
Whilst my squidy lump was in a different place to yours maybe they disappear of their own accord which may be why the rheumys dont seem to take any notice of them.
I hope yours does a disappearing act, quickly.
Judi x
I also had a recurring painful, swollen pad on my left ankle, the rheumatologist did an ultrasound on my entire foot and said it was definitely not the joint, but inflammation across the tendon. After several months, it eventually calmed down of its own accord but it is definitely linked to a slight change in my gait when my toes or foot flare up. I inadvertently walk differently and must put stress elsewhere on the foot and ankle. The rheumatologist and nurses always tell me to wear a substantial shoe WITH LACES to help keep pain and swelling to a minimum and although I don't always do this, my feet feel better when I do. I am also going for my first appointment with 'orthotics' next week but if they give me a ridiculous insole that doesn't fit into any presentable shoes, I certainly won't be wearing it! As I said, the ankle pain did go away and hasn't been back for a while (even though I'm currently suffering toes pain), touch wood and that has nothing to do with extra medication as my meds have been unchanged for 2 years.
Hi I HAVE SWELLING ON MY R ANKLE EVERYDAY. I HAVE SYNOVITUS IN FEET AND MY RHUEMMY SAYS IT IS THE SAME IN THE ANKLE. DONT KNOW IF THAT HELPS . TAKE CARE
I had an MRI today, so that will explain what is going on..
Sounds in the right place for tibialis posterior tendon problems, which could be due to the way you're walking. Usually, if orthoses don't work, an ankle-foot orthosis (AFO) is the next option, followed by surgery if nothing else helps. I presume that they didn't try steroid injection in the tendon, as that's a pretty controversial one!
Hope the MRI shows up what's happening - there are a lot of structures in that area!
Sara xx
hi gina i know this is an old post but somtimes due to your walking gate or knee the ankle and foot can take the strain of all your body weight the load on the joint coming downstars is 3 times more than your body weight So the feet and ankles take some hammering through the day The ligaments are all their but they can get streatched under these condition be it a high ankle strain or inside /outside ankle fusion well its a hit and miss thing
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Has anyone stopped all RA meds due to awful side effects?
