New symptom: Hi All Anyone out there who has had... - LUPUS UK

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New symptom

MsAndyIvy profile image
18 Replies

Hi All

Anyone out there who has had swollen feet and lower legs from nowhere?

I can hardly hobble and they are so painful. I’m awaiting small nerve neuropathy tests but have been told two months wait and I can’t even find anywhere to do them privately.

Pins and needles, tingling and throbbing have all increased dramatically since last week but today my legs are incredibly ugly and sore.

Surely this symptom ‘isn’t in my head’, due to ‘migraines’ or CFS?

Getting totally p**d off now.

Should go to GP in morning I suppose but I know they won’t do anything until last lot of bloods are back.

Could be rhubarb gin poisoning I suppose 😂😂😂

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MsAndyIvy profile image
MsAndyIvy
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18 Replies
Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi MsAndyIvy,

According to The Lupus Encyclopedia, “one common symptom in people who have lupus nephritis is edema. This occurs when extra fluid leaks out of the blood vessels of the body. The effects of gravity then cause this fluid to collect into parts of the body that are closest to the ground. Since people are usually sitting and standing most of the day, they will develop swelling of the ankles and feet due to this fluid collecting in these areas”. The encyclopedia further states that in the early stages of lupus nephritis, it is possible to significantly decrease or stop the inflammation.

I would encourage you to make an appointment with your doctor to ensure you receive the correct advice and treatment for your symptoms.

Please keep us updated, wishing you all the best.

I’m with Chanpreet - could be edema and needs reporting even though, having just read Whisperit’s latest post, my faith in the medical profession is diidly squat. Maybe lay off the rhubarb gin though - lovely as it sounds to me! X

katidid profile image
katidid

Until my treatment I would get edema in my lower legs and feet. Got so bad at one point, I couldn’t fit into any of my shoes or wear fitted pants. Like you, I would hobble around because of the pain. Luckily it is very mild now that I am on my treatment protocol. Good luck, there is hope!

MsAndyIvy profile image
MsAndyIvy in reply to katidid

Thanks! Just need a diagnosis and some treatment. Other than ‘migraines’ I have no diagnosis. Drs say my symptoms don’t add up and the ‘numbers’ don’t show anything. So no treatment as yet.

I’m going to have to start pushing even more, it’s now been 5 mths

katidid profile image
katidid in reply to MsAndyIvy

Makes sense and I agree push if the symptoms have been going on that long. Generally speaking I have friends and family that suffer from swelling, neuropathy, etc. If you haven't already, I'd def recommend asking your GP for a referral to Cardio as well as Neuro (if you haven't been there already). Edema is a result of so many conditions, as is nerve pain. But, typically, depending on your age, good idea to get your heart and circulatory system checked out. Start ruling things out. Make sense?

sswains profile image
sswains

Has anyone had one swollen limb? I tend to get one swollen lower calf, ankle and foot swollen, and have to have a round of steroids to clear it up. The other leg might swell a little, but hardly at all. It really baffles my rheumatologist and my primary care Dr., and me!

MsAndyIvy profile image
MsAndyIvy in reply to sswains

My right leg more so than my left.

HeKe profile image
HeKe in reply to MsAndyIvy

How are your legs? I'm almost in tears here with increasing pain. No lupus diagnosis yet so I only have Naproxen. Interestingly my left is worse than my right. Sorry to bother you with this but I'm searching the site for similar situations.

Lisalou19 profile image
Lisalou19 in reply to HeKe

My feet are so painful, it’s a pain I can not describe. I brought a foot massager today from Argos, it was on offer £35. I could sit and use it continuously as it gives me some respite until I stop it. Pain is much worse during heat :-(

HeKe profile image
HeKe in reply to Lisalou19

I'm tempted to plunge mine into

a bucket of iced water 😁

Lisalou19 profile image
Lisalou19 in reply to HeKe

I think anything has got to be worth a go . Although my feet don’t like hot water

I literally want to super glue this massager to my feet!!!!!

MsAndyIvy profile image
MsAndyIvy

Hi

I still have pain in my legs but not as severe. Naproxen didn’t touch it. Amitryptaline seems to be doing the trick though. Migraines almost disappeared, loads more energy and pain is less. Also dampening of tingling sensations.

I hope that helps.

I’ve been gardening all day and my legs have been fine- until I’ve just sat down and now they are hurting but I think this is more me being out of condition.

HeKe profile image
HeKe in reply to MsAndyIvy

It's interesting. I'm really fit. My daughter couldn't keep up with me walking up hill two weeks ago, but when this beast hits me it robs me of all energy. Glad to hear you are feeling a bit better. Naproxen is doing nothing so I've turned to wine.

MsAndyIvy profile image
MsAndyIvy in reply to HeKe

Rhubarb Gin

HeKe profile image
HeKe in reply to MsAndyIvy

😂😂😂

HeKe profile image
HeKe in reply to MsAndyIvy

I must make some this year.

MsAndyIvy profile image
MsAndyIvy in reply to HeKe

Unfortunately I’ve supped all my medicinal sloe gin but I have got rhubarb schnapps nearly ready

MsAndyIvy profile image
MsAndyIvy in reply to HeKe

I’ve completely ceased up now! Hobbling.

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