Fibromyalgia brought on by endo? - Endometriosis UK

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Fibromyalgia brought on by endo?

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I have been aching all over every day and getting sharp pains in my knee, hip and back for quite a few months now and it has got worse in the past month whilst I have been taking progesterone only pills. I thought they might be the side effects of the pills but I did have some pains before taking it. I'm wondering whether this could be Fibromyalgia that has been brought on by my endometriosis and adenomyosis. I also have an underactive thyroid which I think could be linked as well. Has anyone had similar symptoms and been diagnosed with both Fibromyalgia and endo? What treatment did you take for it?

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11 Replies
tmc182 profile image
tmc182

Hi. I have both endo and fibro. Endo was diagnosed in 2011 and fibro earlier this year. I was given amytriptoline, which really helped. I think it helped me sleep more restfully which in turn gave me energy during the day and allowed me to be more active which relieved pain. I had a lap 10 days ago and that has really knocked me back both with pain and lack of energy. I was on cerazette (progesterone only pill) since 2013 hadn't considered that being part of the prob! Although it def lowered my mood and reasonability at times! I just had a mirena fitted during my lap so again pain and things now could be changing hormone levels. I would say see your GP you can always mention fibro and ask to try amytriptolyne it's an anti depressants which when given in low doses helps with nerve pain or something like that! Hope that helps sorry if I've rambled on a bit.

in reply to tmc182

Thanks tmc182, I really appreciate your reply and will look into amytriptoline. It's good to know what helps. I am also on cerazette, I just wondered whether the pains got worse or actually started when you first went on it in 2013?

tmc182 profile image
tmc182 in reply to

My widespread body pain and overwhelming tiredness and forgetfulness didn't start until 2015. I went back and forward to the docs and had multiple tests over about a year before diagnosis. I guess in hindsight it was about that time the cerazette stopped working for me and my endo symptoms began to show up again, hence now getting the coil fitted. But I hadn't considered whether the cerazette was causing fibro symptoms. I'll have to see how I go over the next few months once it's out of my system. contraception may have a lot to answer for!!

in reply to tmc182

Thanks for letting me know, can you please keep me posted as to whether your fibro symptoms improve once cerazette is out of your system and you have a coil. It would be much appreciated as it is good to know as I am thinking of giving up Cerazette and trying other options.

tmc182 profile image
tmc182 in reply to

I'll try and remember! I've also been looking at a forum on here Fibromyalgia Action UK. They seem very friendly and helpful, maybe someone on there has been on cerazette and can give you more info.

n1nastill profile image
n1nastill

I was diagnosed with Fibro in 2013 and endo in 2015. I have been on numerous pills for my endo including progesterone only pills, and its only made the fibro worse. I have come off cerezette three times, and in those times once it is out of my system my fibro feels a little better. I personally try and avoid any type of medication now as I am so susceptible to bad side-effects, so I am a believer in eating right and trying to exercise even if its just something as simple as swimming once/twice a week. Its been over three months now since I've last had a flare-up, and when I do have them they are pretty mild.

in reply to n1nastill

Thanks n1nastill, it's good to know this, I am going to seriously think about giving up Cerazette and look at my exercise and diet.

n1nastill profile image
n1nastill in reply to

I wish you the best! If you need any help or tips with exercise and diet just ask :)

My physiotherapist told me that after your in pain for so long you start to pick up on it easier b/c your nerves are hard wired to tell your brain. She taught me this teqnique called stroking. Use 3 fingers and apply light pressure around the body, it's helped my muscle aches and I don't have fibro (tested MRI).

Another thing to worry about is when your in pain you tense up everywhere and that's going to result in tensed muscles and pain. You want to release these muscles. One thing I do is legs to wall and then put 2 balls under my shoulder blades( bouncy) and lay on them with a pillow supporting my head and neck.

in reply to

Thanks Hannah, great advice, I shall try that out :)

in reply to

Oops sorry do legs to wall as a separate stretch from the ball one. For the ball one you can bend your knees or kept your legs stretched. Otherwise you might do a core workout which could cause more pain if your pelvic floor is overactive.

Your welcome:)

For stroking if anything tickles go slower.

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