Hi everyone,
Has anyone here have or had endo and then have or had fibromyalgia? I'm in so much pain. I can't sleep properly, can't eat properly have to stick with liquids. Just wondered if anyone is or has been in the same position as me. Could do with some advice and a chat.
Sweety.
I don't have endometriosis, but do take HRT for perimenopausal symptoms. I also had a misdiagnosis of fibromyalgia. Take a look at HU's Thyroid UK forum & read the posts & responses about blood tests, the micronutrients to we need to be healthy, as well as what to avoid to improve your health. It's common for people to be labelled with FM then have an assortment of meds prescribed that don't work or make us more ill, when what we need is better nutrition & thyroid hormones. You can help yourself, though it's neither straightforward or easy, though far far better in the long term than suffering debilitating symptoms.
Hi BadHare,
Thanks for replying to me. I have had my thyroid checked and it's fine, I do feel like I can manage my pains when I'm on a liquid diet. I will look up the forum you mentioned and see what there is to help me.
Sweety
You're welcome.
Mine is supposedly normal, but odd that I had hypothyroid symptoms for 40 years until I started to take thyroid hormones. GPs & even endocrinologists are extremely ignorant, which is why TUK s such a popular forum. Don't trust fine, get your blood test results & post them on the forum. If they haven't checked T3 levels &/or for both types of thyroid antibodies, your doctor is talking bull!
Also add some good probiotics to your diet, preferable kefir, & make sure you have plenty of prebiotics in whatever you're drinking to improve your gut health.
Hi BadHare,
Thanks for the advice, I will definitely get another blood test done. I'm looking for Dairy Free prebiotics drinks as I have lactose intolerance, also have celiac disease, IBS so have to avoid certain foods and ingredients.
Thank you for your help.
Sweety
Dairy kefir eat the lctose first. I tend to drink it well fermented & slightly on the sour side. Try water grains or kombucha. If you have freecycle, see if anyone is giving them away. There's a national network for SCOBY sharing kombucha cultures.
Hi BadHare,
Thanks I will pop to the local health shop and see what they have.
Thank you
Sweety.
I started experiencing sharp pain in my joints especially my fingers and wrist, recently and racked my brain trying to figure out what I was doing different and realized I ran out of my Omega3 fish oil. Took me 2wks taking 3 pills a day to get it to stop. I've been in menopause for 2yrs and I have hypothyroidism for over 15yrs and dealing with bleeding after 13mos of nothing and in the process of trying to figure out what is going on...anyways not sure if this would help you but worth a try.
Best if lucky to you.
Hi dbrowning02,
Thank you.
I take loads of different vitamins including high dose of Omega 3 fish oils every morning. I have been on menopause since my last operation in 2017. I'm struggling with different things and its starting to get to me.
Sweety.
Hi, I' ve had endo, fibromialgia, IBS, so I know what you're going through. It's been tough and after many years of suffering my conclusion is that is all hormonal related, even the IBS. You could try melatonin to improve your sleep, for the pain it helped me walking, stretching or doing some soft exercise in warm water. I have a lot of problems with food, I'm gluten and dairy free. Maybe bone broth can help you. The worst part for me it's now going through perimenopause, it's really causing havoc in my body..
Hi Escarole,
I'm going through preimenopause, I do a lot of walking as I had operation on my right leg to stretch my Achilles tendon. Just finished my physio sessions, and now I'm doing exercises at my local swimming pool, plus going to the gym. I'm doing light workouts for my whole body but nothing seems to help with my pains. I can't sleep properly or eat properly, I'm gluten free and dairy free as I have coeliac disease ,IBS. I do take a lot of vitamins. I'm just getting fed up feeling pains and feeling exhausted all the time. I will try melatonin and see if that helps with my sleep.
Thank you
Sweety.
I know, I'm fed up too, can't have a normal life and always struggling with pain. I also take a few supplements like vit D, Bs, C, Omega 3, primrose oil and now thinking about starting with CoQ10 to have more energy. Good luck!
I miss my life before I became ill, its put such a stress on my marriage.
I haven't heard of CoQ10 is that a vitamin of sorts?
Sweety.
Hi there, I'm sorry you're in so much pain. I have gone through the menopause, had endometriosis since age 12 and also suffer from IBS and lactose intolerance. I don't have fibromyalgia but was recently diagnosed with Ehlers Danlos syndrome. I must have always had it but think it got worse since my periods stopped 2 years ago. I'm always exhausted plus the pain is awful.
I'm also taking supplements, a good quality vitamin and mineral supplement, vitamin D3, K2 and magnesium. CoQ10 (co enzyme Q10) ended up giving me palpitations!!
Hi Lamornalee,
I don't understand why we all suffer like this, there has to be something that can help us with pains. Painkillers don't work for me at all, I just have to ride the pain until it gets to the point where I can start to ignore it for a while. I have to be careful what I eat and drink, this is ruining my life. I haven't heard of Ehlers Danlos syndrome before. I hope its nothing serious.
Sweety
I hadn't heard of Ehlers Danlos syndrome until recently either Sweety! Apparently it's a genetic malformation to do with the collagen (you can't take extra collagen to counteract it!).
That's probably why the adhesions formed very quickly in my teen years, causing agony! I was misdiagnosed with ME at age 19, so I can empathise.
What has the consultant said about your endo? Is there anything they can do to alleviate it (medication or surgery?)
Hi Lamornalee,
Oh wow, that's awful.
I had my last operation in 2017 to remove both my ovaries and woke up with complications in the recovery room. I developed compartment syndrome in my right calf. I was in agony, my calf, foot was numb and 3 times the size. I had to have emergency surgery not once but 4 times in one week on my leg. Instead of spending 1 night in hospital I stayed 2 weeks. That's not all, I was on crutches for over a year, and had another operation last year July to stretch my Achilles tendon, I'm now going through intense physio sessions. I'm going through menopause, and have now been diagnosed with fibromyalgia. I think my endo is back and so are the adhesions. I don't want any more operation, I've been through enough trauma to last me a life time.
Sweety.
I'm appalled to hear this Sweety, what a terrible experience that must have been for you!
I'm happy to say that once my periods stopped, the pain from the endometriosis settled down a lot. It has something to do with the estrogen levels. Unfortunately the hot flushes, palpitations and lethargy has replaced it - I can't win!!
Hi Lamornalee,
Yes it was a very traumatic time for me. I'm still having issues with my foot, leg. Gosh! What we all go through. If its not endo its something else. I have a check up in a couple of months time with the gyno consultant to see how I am feeling so hopefully he will say it's not endo only adhesions and fibromyalgia causing me pains.
I'm happy to hear that your endo pains went when your periods stopped.
Sweety.
Well Sweety, endometriosis is caused by an imbalance of hormones, so now I don't have enough estrogen, I have different symptoms. I hope that the consultant finds out the cause of pain!
Hi Lamornalee,
I have heard that some women still have endo after menopause, not sure if they didn't get the endo removed or not. Are you taking HRT tablets? I have been given some but am reluctant to take them because my endo has been aggressive in the past, after every operation I had endo came back within 2 weeks.
Sweety
I didn't want to go down the HRT route, my sister took them and (whether it was a coincidence) had breast cancer. I still have fibroids but they're estrogen dependent.
I can't believe how aggressive your endo is, poor you! HRT might make it worse. I was put on medication to stop my periods for 4 months, in the hope that the body would heal. It didn't!
Hi Lamornalee,
I didn't want to take HRT because I was scared of making my endo worse. I take it every other day, I have been told because of my age I should take it.
I don't understand why they can't come up with something to help us. Painkillers don't work at all for me, I have tried every painkillers there are.
You in a lot of pain? Are you taking any painkillers?
Sweety.
Sweety, I take Naproxen and Omeprazole. I've tried Co-codamol but it makes me drowsy amongst other things! I need to take as and when (I'm suffering from a tear in knee ligament, as well as T4 syndrome).
HRT is probably the lesser evil of osteoporosis etc. If it's not helping, I would ask for further assessment.
Hi Lamornalee,
I hate painkillers that make you drowsy and constipated. I tried those painkillers and they didn't work for me. I will speak to my consultant when I see him next.
Sweety
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