Painful joints?: Hey ladies. This is a new... - Endometriosis UK

Endometriosis UK

70,593 members52,110 posts

Painful joints?

nicococacola profile image
17 Replies

Hey ladies.

This is a new symptom to me but does anyone get sore painful joints with Endo? Especially in your toes and fingers, that's where mine is at it's worse and my hips.

I've been tested for absolutely everything I can think of so I'm sure it's nothing else. I usually take B12 everyday to help with Endo related nerve pain but I haven't for the past week since they haven't been delivered, but boy am I feeling the effects of not taking them.

Thanks for reading and I hope you're all doing well today xxx

Written by
nicococacola profile image
nicococacola
To view profiles and participate in discussions please or .
Read more about...
17 Replies
Impatient profile image
Impatient

It sounds like Lupus

If they did check you for Lupus already, which other conditions have they ruled out, before we go hunting down other possibles ?

There was another lady on here who had pains, turns out she had all the symptoms of fibromyalgia.

nicococacola profile image
nicococacola

I've just been put on a strong mirgraine tablet called Lyrica. Do you think it could be that? I've read the side effects and there's an extensive list. It only started a week and a half ago which is when I started the tablets but I only just thought about it x

stevieflp profile image
stevieflp

Depending on what age you are - aching joints can also be a sign of peri-menopause which can occur a few years leading up to menopause. This is caused by a sharp reduction in progesterone. Estrogen reduces but much slower. I had that but take natural bio-identical progesterone cream which has helped with this symptom. Important to get to bottom of your particular cause though. Incidentally migraine hormonal headaches, aching joints, PMS, aggravated endo, fibroids, osteoporosis and quite a few other complaints have been linked with estrogen dominance. Have a read of the following:

Estrogen Dominance by Dr Michael Lam (also has a good website)

I have also switched to using products which are free of nasty chemicals - particularly xenoestrogens (chemicals that mimic estrogen and fool the estrogen receptors in the body to react as if you have more estrogen than you do). Apparently, depending upon where your estrogen receptors are more dominant, it will affect what symptoms will be triggered. I go for products that are parabens, Sulphates (SLS) and phthalates free (amongst other things).

All best wishes

Frances x

in reply to stevieflp

I think this is great advice Frances, I have oestrogen dominance, have fibroids and endometriosis, suffer migraines and painful joints. I think you are absolutely right about xeno-oestrogens, which can be triggered from processed food and too much of the wrong types of food, especially non-organic dairy and meats. Glad someone else has mentioned this, Thank you x

GrittyReads profile image
GrittyReads

I had similar aching when I was seriously perimenopausal, and the mirena coil - 4+ years ago - made a huge difference. I also upped my exercise about 2.5 years ago, with aerobic work and gentle, purposeful, specific weights and exercise. It was all carefully monitored to deal with several potential, postural problems and 'overdevelopments' versus 'underdevelopments'. That all made an unbelievable difference, on top of the mirena improvements. So, if you can rule out illnesses - I would see an excellent physio and get a course of exercise (but choose a good physio, maybe older ones who trained before it became a trendy thing to do).

However, I second what Impatient says about lupus - what have you been tested for, and what can be ruled out? Symmetrical aches, esp in fingers, toes, hips can be less obvious symptoms in those with another autoimmune condition: primary biliary cirrhosis (PBC); you should have had liver function tests, and maybe a test for AMAs. See if they've done those.

nicococacola profile image
nicococacola

I've had liver and kidney function testes done and they where all fine. I had them done at hospital. I've been tested for all atritises as they run in the family. Fibromyalgia would make sense as my mum has it and

I have mentioned to my doc but he says it doesn't look likely and didn't show up in my blood

My doctor didn't really say what else he has tested for but he said if there was something wrong it would of shown up.

I'm getting the mirena next month so that's good at least :) and I'm 20 so it's pretty daunting reading about peri menopausal stuff but it's great information.

My diet is pretty crud at the minute I must admit but I am changing it as of Monday

Thanks for all the great info girls xxxx

Lilykat197 profile image
Lilykat197

Fibromyalgia does not show in your blood, I was diagnosed with it back in December although I don't believe or want to believe I have it, I tend to put it all down to the endo. Worst for me are my hips and back and the all over flu like body ache.

They also suspect I have lupus which most definitely shows in your blood, mine came back inconclusive, I do have the antibodies but they are low so they think I am in a period of remission hence the low count, again I like to believe I don't have it, but bear in mind all these conditions are autoimmune and there is a definite connection in my case anyhow.

Make sure you get the right tests.

Hope you feel better soon xxxx

Lolaloo profile image
Lolaloo

Hi I suffer with joint pain but I have a under active thyroide which I think that's why have you been checked for that?

nicococacola profile image
nicococacola in reply to Lolaloo

Yeah I know I have been tested for this and it was clear :)

Hi there, sorry to hear you now have joint pain too. I was wondering if you are taking Cerazette, as I started taking this about 2 months ago now and have started getting joint pain too? I read somewhere that Cerazette can cause joint pain. Just a thought.

nicococacola profile image
nicococacola in reply to

Yes I am taking Cerazette! I started a couple of weeks ago. Thanks ever so much for informing me :) xxx

in reply to nicococacola

That's ok. I hope it helps. For now I can cope with the joint pain, but I have found my depression and anxiety getting much worse, so now I have to go see a psychiatrist. It's like selling your soul this awful disease. I hope you find a good treatment soon. Take care of yourself. Xxx

Now this is funny you should mention this, as around period time I get headaches a lot but also always with painful joints, there must be some kind of hormonal fluctuation connection here I would imagine. I always tend to feel better with a vitamin B-complex, I also take magnesium which can help with muscle cramps, make sure you are OK to take. I think there could be a possible link with migraine which again can be triggered by hormones everything seems to be loosely linked, I know in my case I suffer with endometriosis/migraine and muscle cramps, nothing else is wrong with me, so it's possible. Every joint in my body aches at times and yet I feel great when it clears, usually when the migraine goes. Hope this gives you some insight into things. Take Care x

Lillil profile image
Lillil

Hi yes i did and like you all my tests were clear. I noticed a pattern that when my endo was bad, my joint pain got worse. I put it down to hormones. It would get so bad i would cry in agony, had no strength to pick up a glass etc.

I had been on zoladex then depo, so had put it down to menopause. My gynae endo specialist made me come off all hormone treatments and the joint pain has massively improved. I still get it when im fatigued but not as bad.

If you are on hormone treatment you are at risk of osteoporosis. Make sure you take calcium and vitamin d and had an xray of your wrists to check your bone age. Also check you are doing some weight baring excercise to try and strengthen your joints - easier said than done i know.

If you are worried, dont let gp fob you off until you have an answer and def get a physio referral.

Lots of luckxx

Novouralsk78 profile image
Novouralsk78

I do. Really badly. I’m wondering if it’s a side effect from Cerazette..

What pill are you on ?

Novouralsk78 profile image
Novouralsk78

Hi

I’m experiencing sore knees and joint pain but I thought it was a side effect of the pill that I have to be on to control my endometriosis.

I take Cerazette.

It could be the meds, what do you recon .

But I hear you . It’s so annoying 😭

Iva

You may also like...

Joint pain and aches

to have really bad joint pain, mainly around my fingers, wrists, ankles and toes, but sometimes my...

Prostap and joint pain

this will help. My knees and hips are getting more painful and achy everyday. I'm getting really...

Severe joint pain - hips and knees - and loss of strength

standing/taking the pressure off my tailbone, then eases off. I've been having hip pain upon...

Hip joint pain

suffering from joint pain on my right hip, it happens mostly when I’m walking... could it be...

Joint pain and zoladex

experienced joint pain whilst having zoladex? The last few days my wrists have been so painful and...