Leg pain

[Louboo78]

Hi all,

I had my second lap last year and they found endo in my pelvic wall. Unfortunately the excision didn’t relieve me from pain for long and for the last couple of months the pain has become unbearable at times again. I’ve been waiting to hear from the hospital since my app in Mar was cancelled due to COVID 19.

I’ve started getting severe almost like a grinding pain in my hips and at times like tonight (yes I’m writing this at 3am!) my legs ache like mad to the point that my muscles hurt. I feel like I’ve run a marathon.

Does anyone else experience this?

TIA

[Moon_maiden]

Hope you’re feeling better now and got some sleep.

[Louboo78 in reply to Moon_maiden]

No unfortunately. I started my period yesterday and usually for some reason I get a bit of a break from the back and hip pain once it starts but not this time! This flare up has been a nasty one x

[Moon_maiden in reply to Louboo78]

Could it be muscular if its usually gone at this point?

[Louboo78 in reply to Moon_maiden]

No it’s exactly the same pain as I always get.

[Moon_maiden in reply to Louboo78]

Thought it might be worth suggesting. The pain consultant suggested amitriptyline last week as the endo is affecting the nerves somehow, but the GO’s weren’t suggesting anything. Is it worth going back to GP to try something else or combination and/ or referral to the pain clinic?

The pain used to ease for me in the first day or two once it started.

[Louboo78 in reply to Moon_maiden]

I’ve been trying to get hold of my GP for the last 2 days. By the time I get through the call list has shut! Getting on the phone at 8.30 tomorrow and will keep on dialling until I get through! I’m wondering as the endo is in my pelvic wall, if it’s hitting the sciatic nerve causing all of the pain in my hips and legs.

[Moon_maiden in reply to Louboo78]

Mine was on the pelvic wall, not sure if it’s that effecting nerves or bowel. I don’t get sciatica.

The best way I find these days is the online consultation form, gets a quicker response by far.

Hopefully you’ll get through tomorrow.

[Kimbad1990]

This is exactly how I have been feeling. My knees and ankles ache like I’ve done a big workout. I believe it’s inflammation??

[Louboo78 in reply to Kimbad1990]

I have no idea but yes inflammation makes sense. I’ve never had it like this before. Every night for the past week it’s kept me awake a lot of the night. No painkillers help. A while ago the doctor prescribed me Amitriptiline for at night just for pain and I’ve been holding off using them but I’m going to have to try them tonight I think... funny you say about your ankles as even my toes hurt sometimes! X

[Sophie87]

Hi, hope you're feeling better...

I'm suffering with pain like this for number of years. Pain goes from my left hip and all the way down to my toes, it was so bad that I couldn't walk because of numbness in my leg. Sometimes, like today, my pain is only around my hip area.

Many doctors said that it's endo pain but I wasn't convinced and kept going from doctor to doctor looking for the answer, until one doctor said that's sciatica, and that sometimes endo grows too close or on the nerve.

Now I'm on gabapentin and finally I have more control over my life, even though I still have some rough days but it's better than before.

Hopefully you have managed or will manage to get to see/talk to your GP and they will sort it out.

The only thing that I would suggest is to sleep with a soft cushion between your legs- it helps me

[Louboo78 in reply to Sophie87]

Hey so the doctor prescribed me Gabapentin last week and I’m not feeling any benefit from it as yet. I’m up to one tablet morning and night now but I can’t remember if it takes a while to get into the system? Did it take a while to take effect with you? X

[Sophie87 in reply to Louboo78]

Hi, I'm glad to hear that you managed to get to speak to your GP. Yes, it took a while before I could feel any benefit, unless you need higher dose.

It's your body and your decision but I would wait a few weeks and see how you feel

[Louboo78 in reply to Sophie87]

Yes I thought it would take a while. I’m just being impatient I think cause I’m in a lot of pain more often now! I’ll stick to the 2 tabs a day for the time being and keep fingers crossed they kick in 😊

[Sophie87 in reply to Louboo78]

I know what you mean, and I don't think you're being impatient, being in pain makes things very difficult. Fingers crossed! Keep us updated 😊

[Louboo78 in reply to Sophie87]

I will do 😊

[Louboo78]

In a weird way I’m so glad others have the same symptoms as me. Makes me feel like I’m not going mad! Mine is particularly worse in my left leg. Same as you, pain all the way down my leg and into my toes today. Other day’s just both my hips will hurt. I was on gabapentin before my last laparoscopy and then came off it after as I wasn’t in any pain for a few months. This is what I want to speak to my GP about going back onto. Well, I’m going to insist! Just had a major wobble this evening. Burst into tears through sheer frustration at this disease. Think a week of broken sleep hasn’t helped either! I’ll try the pillow between my legs also tonight. Do you keep your legs elevated on a pillow also? I’ve read that may help x

[Sophie87]

I know, it's all so frustrating, sometimes it's like there is no light at the end of the tunnel.

But it does help to know that other women have similar or the same experiences and that we're not getting mad or feel like we're making things up, especially when we're going to doctors.

You definitely need to keep trying to see someone, I know it's very difficult now because of covid

I completely understand your feeling of frustration, sometimes all this feels like a bad life sentence, and yes, if you can't even sleep how can you function...

And about cushion, I tried to keep my legs elevated but it didn't work for me. Then I've read somewhere about cushion between legs and I must say that it works and helps me to fall asleep

[Louboo78 in reply to Sophie87]

Will definitely try the cushion between my legs tonight. Think I’ve worn myself out with the crying so hopefully I’ll sleep better. That and the amitriptiline will hopefully help!😊

[Louboo78 in reply to Sophie87]

Hi. So I’ve been on the Gabapentin for the past 4 weeks and the last couple of days I’m experiencing bad aches in my arms and fingers aswell as my legs again. Is this is a side effect and just wondered if you’ve experienced anything like this? I have read that some side effects can start a while after starting Gabapentin but just wondered if you suffered like this? I can’t remember it doing this when I was on it last time xx

[Sophie87 in reply to Louboo78]

Hi,

I'm sorry to hear that you still having problem with pain So you still have pain in your legs?

No, I haven't had pains in my arms or fingers when on gabapentin. But it may be beneficial to note this things down and mention it to your gp if you feel like the pain is getting a bit too much? x

[Sophie87 in reply to Sophie87]

Also, I was just wondering if you had any blood tests done recently? x

[Louboo78 in reply to Sophie87]

I had some bloods done about 3 months ago. Checked for everything like anaemia and thyroid. All ok. I’m wondering if a lot of this is down to anxiety to be honest. More so with the aches in the arms. I suffer with an anxiety disorder anyhow and wondering if I’m working myself up🤦‍♀️I’m getting so stressed out with feeling pain more often. It’s getting to the point where I don’t want to plan anything ahead in case I get a flare up. I’m keeping a diary of my symptoms now so I can show the consultant when I do eventually get to see one! Xx

[Sophie87 in reply to Louboo78]

I asked about blood tests because I had few tests recently because of pains in my legs and they found that I may have iron overload. And from what I've read this may cause joint pains etc. But if you had them all then it's not the case.

You're right, anxiety and stress may contribute to your pains as it causes tensions in body....

It's so hard isn't? It's like one thing after another, we're trying to help our body to relieve pain and other things comes alive causing extra stress and worries I'm there with you... xx

[Louboo78]

As with pain in my legs, yes it’s still there. Not as bad as it was so I think the Gabapentin might be doing something but it’s still enough to keep me awake at night when it happens. I’m currently on 600mg a day and wondering if I should go up to 900mg which is what the doctor said was the max I could go up to if needed. Trouble is I find the gp’s don’t know enough about endometriosis that they’re stumped as to how to help with pain relief when you ask xx

[Sophie87 in reply to Louboo78]

Gosh! That's a lot gabapentin you're taking Do you feel tired and sleepy during the day?

I know what you mean about gp's x

[Louboo78 in reply to Sophie87]

I don’t feel too bad although I do get quite sleepy during the afternoon. If I’m out and about I can push through it but at home there are times I just want to crawl into bed! I’ve kept the Gabapentin at 600mg and just going to give it another couple of weeks to see if it kicks in more. Like I said, I do have an anxiety disorder and I think worrying about my legs hurting can almost bring on stress through my legs. I’m trying CBD oil to help me with that so hopefully that will start to work soon too ! Xx

[bonnieclyde97]

Hey!

I experience this quite a lot! I've had a huge flare recently and have found in my bloods my magnesium was low! I've started taking magnesium supplements to settle my legs! And it's actually helped! Whether or not that's a little in my head because I want to feel better I don't know but maybe it's something of a suggestion.

Hope you have a better night!

Eve

[Louboo78 in reply to bonnieclyde97]

I’ve read about magnesium supplements so maybe I’ll give that a go. I take vitamin B12 to help with the tiredness so will try that too😊xx

[bonnieclyde97 in reply to Louboo78]

Let me know how you get on! Xx

[Louboo78 in reply to bonnieclyde97]

I will do 😊xx