Just found out some great news, not

[415068]

Hey everyone, just found out that I have fibromyalgia on top if my endometriosis. I was just wondering if anyone has any tips or medication or any advice they could give to me.

Thank you

[Purple_Badgers]

Hi! Not sure I have much wisdom to impart, but at least I can tell you you’re not alone. I had been very confused about how tired I was getting, even after sleeping a lot. And couldn’t figure out how I could still be in pain, even while on strong painkillers for endo. Then recently my GP said she thinks it’s fibromyalgia, as rounds of blood tests found no inflammation or other potential causes of my problems.

It’s a blow, as I was managing the endo and had just been listed for surgery, so looking forward to feeling better… but it feels like the positivity has been taken away by the addition of a new diagnosis.

I really feel for you and hope you get all the support, care and treatment you need and deserve xxx

[415068 in reply to Purple_Badgers]

Thank you and I get it I was having max of 14 hours to minim of 4 hours sleep and was not waking up refreshed and just getting use of having one condition and get slapped in the face with a nother one, i hope the surgery goes well and recovery is good. X

[WH2023]

This is something I’m being investigated for too! Been diagnosed with endometriosis recently but my doctor also thinks I’ve got fibromyalgia (which I think I have got anyway and have done for a while) so right now I just managed symptoms with pain relief and exercise

[415068 in reply to WH2023]

May I ask how what are the exercises as I talked about that option

[WH2023 in reply to 415068]

I do spinning and machine exercises. Nothing specific to my pain but more to lose weight so just whatever suits you but I go everyday. Anything you find that helps you.

[Endometri]

Hi, sorry I can't offer any help and hope you find the info you need. But I wondered how you got your doctors to look into this? As I have all the symptoms of fibromyalgia also. Did they have to do several other tests to rule other things out? If so, what tests? Sorry to ask so many questions just want to get to the bottom of this... x

[Escapologygirl in reply to Endometri]

Thanks for sharing this I think I am in a similar position to you Endometri

[415068 in reply to Endometri]

I kept going to my doctor, I kept telling them that I wasn't sleeping that all my symptoms were getting worse and that I was pretty much struggling to function. I know it's hard but keep going back to the doctors as eventually they will listen. The test for fibromyalgia he ask me questions like ' when was the last time you slept while waking up feeling refreshed?' And ' when was the last time you were not in pain?' Ect. Then the felt around to see if certain moves put me in pain. I felt bad for him as I was having a bad foggy head and could not understand him which kind of helped my case. Like I said just keep pushing. Hope you get it sorted x

[Shorty9]

Hey, sorry to hear you have the addition of fibro. I was diagnosed the other way around. I was diagnosed with fibro and CFS back in 2014 however I've always had period issues since a teenager, had an early smear test and just written off in my 20s as heavy period trouble.I truly believe that my fibro is in direct response to the endo and adeno I have recently been diagnosed with. I had a laparoscopy in May last year and started zoladex in October. I had a virtually pain free run for about 4/5months Inc the fibro pain. I got good sleep and felt human for the first time in over a decade. then last month the gynae pain returned.

Now my fibro pain is also returning.

To keep it at bay as much as possible I walk every day (I have dogs so a couple of miles daily unless its a bad day and im stuck on the sofa) i see a physio fortnightly who offers myofacial release massage (more gentle and helps un stick the facia) along with some manual therapy movement. I have also started pilates just a beginners equipment class once a week. Doing these things helps me function. I am sensitive to medications so only real option I have is ibuprofen when I'm in more pain or feeling inflamed.

It's taken me over 10 years to get to this point. It only ever went whilst the combination of ablation of endo and zoladex were fresh.

These things you just have to try give it a bit of time and see if they work for you.

Try looking into things such as a floatation tank (I've done this and it was amazing) and massage for people with fibro. Check your diet to keep it as anti inflammatory as you can (this I'm not so good with and fall back to old habits) but I've started to look into the Mediterranean diet.

I hope you find some element of relief.

[415068 in reply to Shorty9]

Thank you this helps me soo much I will definitely look into them x

[Dee_EndoUK Moderator Endometriosis UK]

Hi! We're glad that so many of our community have reached out with advice and support. You may be interested to watch a webinar that we have on our website, which specifically focuses on Endometriosis and Fibromyalgia. You can find it at endometriosis-uk.org/past-w.... You'll need to scroll down on the page until you find it - hope it's useful! Take care x

[Booksareaslay]

Cycle soothers are good. Although a small solution, it may help relax you. So they're reusable and chargeable heating pads with an inbuilt vibrating mechanism. I have endometriosis too, and although it doesn't help the pain always or alot, it may relax and soothe the areas the endo is affecting. Endo is very tricky, because stage doesn't affect how much pain you're in. I am only in stage 1, had it removed via laparoscopy and the pain is still horrendous. Some say a change in diet may help, to avoid inflammatory goods such as dairy gluten, etc etc. My mum has sought to find help with a herbalist, so perhaps they may help you?

[415068 in reply to Booksareaslay]

Ok I'll look into it. Thank you x