any ideas? Feeling generally worse each day at the moment!
Fluid filled swellings on both legs below knee on... - LUPUS UK
Fluid filled swellings on both legs below knee on inside then also under ankle bone! Whats this about?
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saranne
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11 Replies
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If you're taking steroids that would likely be the cause. Mine often swell to the point where it feels like the skin will burst, especially in hot weather or if I'm unable to get my feet up for a few hours. Either way, you need to see your GP immediately. To ease the swelling lie down with your legs raised on cushions above heart-level and try to rest as much as possible. Bad luck Saranne and let us know how you get on. x
Thanks - sorry to her you have it badly too,
I was panicking last night because lots of other pains esp in my back and hands. I am on steroids, although its a low 5mg dose. Saw the gp yesterday morning because I had very flemy cough and painful, not able to go to work. He was running v late listened to my chest and gave me the blood test results, taken because of other problems recently. I rolled up my trousers to show the swelling said its worse in evening and I don't remember him saying anything!!! He does know I am at 6th monthly rheumy apt on wed so thats good, but I often find symptoms or unusual events are just not explained there as well!
Its not the whole leg or ankle but like pouches of fluid. has gone down a bit over night.
Will stop panicking and keep legs up and not go in the sun or shopping, not been to shops since Feb as always too tired!
Thanks for being there x
This is a symptom of kidney failure. Please call your doctor on Monday morning.
OK thanks, with the lower back pain is what had me worried last night, I will follow it up!
As gazorpf said that's sounds like renal failure symptons. If you have the same fluid in your lower back (if you push your thumb in your lower back for a few seconds and you can feel your thumb impression) I would say it is almost definately renal failure. Have you been feeling dehydrated and been vomiting? How long have you noticed this fliud (odema)? If its months you may need to go the hospital straight away. Don't mean to scare you but the early signs of renam failure is odema. You may want to start a low or no salt diet, reduce the amount of potassium (red meat, banana'a tomatoes). Kidneys are very reisilient and it can take a lot to damage before they are beyond repair.
Thanks for your reply, I have the blood test results my GP took and there is nothing to indicate kidney problems, i have had severe cystitis a lot started 35 years ago. I was told kidneys may be scarred and that explains why i start passing blood v. quickly. But its a rare event now, once a year..or less.There has been blood trace in urine occasionally but the Rhyeumy clinic never tests, I always tell the nurse to and she does the dip stick, but I should ask for more? GFR borderline normal a few years ago, but I only see blood test results if GP does them. So may have happened before?
Only blood test problems are- slightly raised anti DNA anti bodies, I always slightly over on MCV and MCH so enlarged red cells they said 'normal for me'? but because I had a bleed on roof of mouth, hanging down blocked airway till i tburst! Vit B12 and folate tested, in normal range but only just, and I have results from 4 years ago also just in normal range. so there is a new more specific active B12 test I could ask for.
Vit D still low but 3x what it was.
my legs are constantly aching and feet feel like I am walking on a ball. But swelling in specific areas not all over. Back hurts all over and hands...
So does normal GFR this time mean kidneys OK?
I need to be so much more assertive at appt. now and ask to see test results and question more, usually my q's are met with blank shrugs! But also had pain bad eneogh to think heart attack, in feb. Heart was totally normal, no ulcer gall bladder ok but some inflammation - i have well controlled ulcerative colitis - so no explanation but they may be more interested now!
I am not coping with constant pain in my job and hardly leave the house when not at work, so although I can see why they are not concerned because bloods OK ish and no major organ involvement I am not OK.
If I decide to stop work-and need to tell them on WED - its a school- then major financial implications, I would never get back and what if a different med would help me get back to how I was? No answers really and didnt mean to off load all this but only folk on here understand.
I read your details LloydE and you have really been through a lot, so thank you for taking taking the time to support me. Very impressed that off drugs now so it can happen!
O Saranne - I really sympathise with you!!!! As do all of us who have read your plea...for answers! Sometimes our GP's need a really good SHAKE! They seem to be SO complacent (not ALL of them, obviously...) - definitely OVERPAID!
I had similar symptoms (on top of everything else!) with the swollen, burning, lower legs, for about 2-3 weeks before asking for help. The Rheum. clinic didn't even ask for a urine sample ! - and the Doctor I saw there, just dismissed it as something to "expect at my age" !!!!!! Kidney problems do not always show on standard blood tests - do you always give a urine sample too? Like the others have said, it can be a serious issue, and should NOT be ignored, especially if you are taking a drug like Methotextrate or a steroid.
I DID get assertive with my GP (who prefers to spend consultations telling his own corny jokes!) and insisted he look at my legs (he wasn't even going to do that....). He thought "it might be odaema" so prescribed Furosemide ( a diuretic drug), twice a day. The Practice Pharmacy only had a limited supply of these - even though it is a commonly prescribed drug for this ailment - so had to wait almost a week before I could get to the twice-a-day dose. This has reduced the swelling, but I still have an uncomfortable burning sensation around the ankle joints.
To put it bluntly, I am so pissed off with both my GPs and the clinic I attend, that I've asked for a referral to a specialist Lupus Clinic at a large hospital about an hour's drive from here.
Re your job - is there someone kind on your Senior staff who you could talk with and explain your predicament? They may be prepared to let you work reduced hours until you have your symptoms better managed with medication that works for you. The job I had to retire from early had an early start (just as schools do) but my Manager allowed me to start at 11.00.a.m. in the final year, which was a great help and gave time for the DLA allowance to be granted.
Just one more tip - take someone(you trust) with you next time you have an appointment with a medic. They are less likely to "brush you off" and you may just get the help you so need!
I'm just going to add that while swelling/fluid retention in the legs can indicate kidney problems in some instances, I apparently have better kidney function than both my GP and consultant but my legs and feet swell to hell at times as a result of steroids. For sure, this is not good and will have some effect long-term but is not necessarily of immediate concern.
Swelling in both lower extremities is a sign of possible kidney failure. Please call your rheumatologist.
Hi Suranne, just read this post, I too have these swellings, below my ankle they are hard and really unsightly, the swellings below my knees are soft but still ugly. I have had them for years, but today was googling again and saw your post, i enquired on health unlocked about maybe increasing my thyroid tablets which i now think i will do. Have you had any joy with finding out what they are and curing them? Denise x
Suranne...It sounds like your at where I was several years ago. I have had Ra for 34 years, sjogrens for 9, pericarditis for 6, and recently diagnosed with fibromyalgia. I have had 8 joints replaced in the past 25 yrs due to my RA. About your working, I had to stop in my early thirities due to not being able to get around, etc. The lethargy is so bad some days I don't even geat dressed.Someone suggested getting assertive at your Rheumatologist apt, YOU BET!! You have to be your best advocate! I know you feel alone and people don't, cant understand, this is an awful illness, but I encourage you to never give up. If you have family, husband, kids, parents, siblings, let them in your RA world, they can be a great comfort. I know what you mean about the inner calfs, mine look like sumo wrestlers legs! Try to keep a positive attitude and find things everyday to laugh or smile about. Im listing my email in case you need a shoulder. Hang in there girl!
Superauntie@live.com
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