Dead legs: Does anyone else get dead legs... - Endometriosis UK

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Dead legs

Andys_Girl profile image
16 Replies

Does anyone else get dead legs? Its a pain that radiates from my hips downwards and feels like my legs are too heavy for my body, like a dragging feeling. It is so painful, almost like the pain you get when you have cramp in your calves or your feet. Tonight i'm in bed in tears wishing I could just chop my legs off! Is this endo related? My lower back is also very achey tonight and im very bloated, altho thats normal as i'm due a break in my pill this week :(! Xxx

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Andys_Girl profile image
Andys_Girl
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16 Replies
Linds123 profile image
Linds123

Hi I had pain that sounds much like yours, and it was referred pain. I had some in my back and stomach but the rest was in my hips and down my leg, on a good day into the back of my knee, on a bad day into my ankles. Mine was entirely endo related and unfortunately as I can't take neurofen or ibuprofen I was reliant on paracetamol that barely touched and oramorph which wore off really quickly. I hope yours eases off soon x

Have you been investigated for a condition called adenomyosis ?

Andys_Girl profile image
Andys_Girl in reply to

Nope i'm literally only just getting investigated for endo let alone anything else lol! 3 years in and still waitin for an actual diagnosis! X

Blondedia profile image
Blondedia in reply to

That doesn't cause pain in the legs?? It's to do with the uterus and womb.

in reply toBlondedia

Adenomyosis can cause problems with legs as the extra weight of the uterus can press on nerves that go down the legs.

I have adenomyosis and I get severe back pain and pain (and numbness sometimes) down my legs.

This is great website about adenomyosis

alternativesurgery.com/educ...

Shoppingaddict profile image
Shoppingaddict

Hey I'm so glad to of read this! Last week before my period I woke up with a really bad cramp in the top of my leg which spread down my leg over 2 days it was so sore to walk on, then yesterday lunch time I started getting a cramp in my lower back and by the time I went to bed last night it was painful to walk and had spread all down to my lower calf! I have had a laparoscopy which showed my womb was fine apparently but I suffer so much with bloatedness/menstrual migraines/stupidly painful periods/painful sex and an internal camera has shown my bladder is covered in what they said was scar tissue. Still no diagnosis! Xx

Andys_Girl profile image
Andys_Girl in reply toShoppingaddict

Your symptoms sound very similar to mine. The bottom of my back is so achey it radiates right through to my stomach and makes me feel so nauseous! :( my periods are hell and i constantly need to pee, feels like a permanant urine infection, i particularly struggle to it in when i need to go, which can be a nightmare when i work 9 hour shifts on my own in a shop from 2-11pm most days!

I took strong painkillers last night which dont necessarily take away any pain but do put me into a very deep sleep!

I hope you get a diagnosis soon! I dont have one either and am currently waiting to start zoladex injections, although havent had a lap yet!

Xxx

She-Ra profile image
She-Ra

I get this pain all the time, particularly when my endo has really flared up. I think its like sciatica where the endo causes trapped nerves. When i get it i find an anti-inflammatory goes some way to relieving the pain, to the point that i can get to sleep, so i would suggest trying that. I really hope that works for you. I'd just like to say you aren't alone, i struggle sometimes with feeling depressed and have a 'why me' kind of attitude but it does help to know im not the only one, though i wouldn't wish the pain associated with endo on anyone!

I'd also suggest altering your diet if you havent already done so, i found cutting out gluten, dairy, red meat and soya have really helped me too. It probably won't take all of your pain away but it definitely helps. You should read up on it.

I really do hope you get some resolve with your endo and that the doctors can do something for you.

Andys_Girl profile image
Andys_Girl in reply toShe-Ra

Thankyou for responding to my post, il definitely look in to the endo diet more! Xx

NoMorePain profile image
NoMorePain

On the back of what She-Ra said.... reduce your intake of coffee and alcohol - I found these also have a significant effect on the level of pain.

Wish you well & pain free days xxx

Impatient profile image
Impatient in reply toNoMorePain

Cut the caffeine and alcohol completely if you do have endo, or even suspected with endo. Neither is endo-friendly.

i would agree that sciatica is probably the cause, given the pain experienced.

Endo can aggravate sciatica but it is not the only cause of it.

Andys_Girl profile image
Andys_Girl in reply toNoMorePain

Thank you lovely xx

Andys_Girl profile image
Andys_Girl

I dont drink alcohol or coffee, and very rarely drink fizzy drinks, i basically live on water, milk and blackcurrent squash, and the occasional carton of cranberry juice. I think last night my endo flared up because I was stressed at work, and had also been stood up for 9 hours.

Thanks for all your help ladies :) xxx

Blondedia profile image
Blondedia

I have severe endo and a herniated disc in my back as well as deteriorated lower discs in my spine. I have been in pain for years. I have been to the Dr so many times about back pain, without any results, but then I got gynaey probs, so I was sent for an MRI, where they discovered that I had severe back problems, and also severe endo as well as cysts etc.......

I had a laparoscopy in February this year, I can't say I feel any better for it.

I went back to my GP last week because I am sick of the chronic pain in the left side of my groin and also the pain in my left leg, the lower back pain is a given.

Now the GP thinks it could be either the endo, and the lap hasn't worked, or, sciatica which causes pain through my leg, to my knee, I've had sciatica many times before, but always in the back of my leg, didn't know you could get it in the front of your leg!!

She also thinks that I need an x-Ray on my hips, so not sure what's going on.

I really sympathise with you, this constant pain is wearing. People just don't know the pain endo causes us women, but keep investigating whats causing your pain.......xx

dollypop1994 profile image
dollypop1994

Hi hun, I get this all the time- I posted last week asking about it as it is awful. It gets so bad that it can stop me from walking. I also get terrible pain in my hips & thighs. Someone told me it could be endo related so gonna ask my dr. Hope you feel better soon hun xxxx

Bobbluesky profile image
Bobbluesky

Hello, I know the feeling, I have this as well I call it restless legs it would drive you out of your mind. I have or Had Endo but had to have a Hysterectomy because of it, but I have Fibromyalgia as well and this is what causes my leg pains, my be you should talk to your GP as you could have this as well. Hope this Helped. All The Best and Kind Wishes to you.... Xxx

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