I'm new here and not sure if I'm in the right place even, but I could do with some advice. I hoping someone can maybe help me.
I'm 27 years old. Eighteen months ago, I was diagnosed via laparoscopy with endometriosis after suffering for a few years. It was such a relief to get a diagnosis and I really thought that diagnosis wise that stage was over. How wrong I was...
Since September 2020, I have had pain in my neck. I ignored it at first, then two months later, I went to the doctor who sent me to physiotherapy. It didn't help. It had spread to upper back and shoulders and pains in fingers. Then in December, it all got worse I got pain in my joints; in my knees, elbows, fingers, ankles. I couldn't understand it, so after two weeks of joint pain, I went back to the doctors who ran an extensive blood test. Including for Lyme disease (live in France), looking for arthritis, thyroid, autoimmune diseases etc.. I couldn't believe when it came back 100% perfectly fine. Nothing wrong at all. I would have been proud, but I just wanted answers and not back to square one again, seeking anther diagnosis for something I don't want. When I hit the results I was shattered.
So it took another six weeks for me to pluck up the courage to go back to the doctor, who told me there is nothing there so it must be fibromyalgia and said to see a rheumatologist and just to go wait six months for that. I haven't made the appointment because I'm scared too, and I don't know what to do.
I haven't had any X-rays. Or any other tests. I don't have any swelling on joints just pain.
I have been having lots of problems also with my jaw for a few years.
Does this sound like fibromyalgia to you? I don't have fatigue, memory problems anything like that. It's just pain and i just keep hoping it will stop. Is there anything else it can be?
I keep looking at the Internet for positive stories on fibromyalgia and I can't find any its such a horrid thing, and feels like there is no hope with it, that's why I'm so scared.
Any advice, thoughts will be much appreciated...
I think you are all amazing!
Love Isabella xx
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tigerlily27
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It's a tricky one I was diagnosed with endometriosis at 21 it affected my whole body when I was stressed. I dont know how you feel since the original diagnosis have you been treated for that are you doing anything to relieve stress? This may seem strange but it affects our body so much. If that doesn't help then go see a rheumatologist but i would look more at the endometriosis first. I had laparoscopy done and they burnt the lining of my womb to help with pain and cleared one of my tubes. It took a while but it helped a lot. Times of stress would cause it to flare up again though until I had a baby for some reason it took it away for years. It was difficult to conceive took 3 years an clomid to help. I now have 3 children. I am not telling you have a baby because I don't know your circumstances or age but i am sharing my experience in the hope that it helps you. I am now 40 and newly diagnosed with fibromyalgia but i do not believe the 2 are linked directly. Good luck in your journey I hope this helps x
Hi thank you so much for your reply. It means so much. Yes, Endo is horrid. When you say it affected your whole body, what do you mean? Did you get pain all over your body?
I am just on the pill continually for it, no other treatments.
My endo was minimal. But the pain was not.
As for stress, I don't seem to be too stressed. So I have never done anything for that.
The pill never agreed with me either caused headaches and blackouts I came off it after a few years for that reason unfortunately I never found anything to help other then the burning and then having kids and finding things to help with stress and diet makes a difference reduce diary intake try alternative milks and greek yogurt not greek style it helped a lot and reduce fatty food intake just try eat healthy but still have an odd treat it helps a lot. I found walking good I couldnt do strenuous exercise as it would cause a flare up swimming is supposed to be good too but I have issues with my ears so haven't tried that a hot water bottle is great for comfort when in pain. Minimising stress is the main thing as for a gynae referral if you have not seen one already and discuss your options. Look up endometriosis organisations too for support not everyone understands or empathize with suffers but they will. I would literally collapse and vomit for days at a time I couldnt stand with the pain it was awful I was bent over in two with pain. I gave up my job after missing so much time from being sent to hospital it was quit or be fired. I was also going to college at the time so both were to much I got my degree and then got a job I loved. Once i done that i didnt get as sick as i had so stress really does trigger it. Keep a journal when you have flare ups to see is there a pattern to your triggers sometimes we dont even notice until we see it written down and look back at it. Best of luck whatever happens but i would definitely see a gynae before rheumatologist in case it's that causing your issues if they do not help then maybe see the rheumatologist later on but they wouldnt be my first stop.
Hi and welcome. Love the name! No relevant personal experience but I have read that women with Endometriosis are twice as likely to get Fibro and that TMJ (Temporomandibular Disorder) commonly overlaps. Worth looking at underlying autoimmunity and how well you are clearing oestrogens.
My pleasure. No none of this is obvious or straightforward and not everyone agrees on causes anyway or even whether these conditions are autoimmune or autoinflammatory. It might be worth checking to see what you've actually had tested and posting on individual forums for suggestions - you mention thyroid, but commonly not all tests are done (in UK anyway) so make sure you have TSH, FT4, FT3, and TPO and TgAb. Check what else they tested for and double check that it is enough to give you a definitive yes/no. Things like Coeliac are so hit and miss unless you are in the late stages with considerable damage. Any antibodies should give you a hint of possible vulnerabilities.
Micki at Pure Health has changed a lot of her test availability since this was written but it should still give you some pointers. The DUTCH is supposed to be very good, although I haven't tried it. I did the hepatic test (urine) that she mentions further down as well as some methylation testing. purehealthclinic.co.uk/heal.... Have a read and ask her if you need some help. Cheers
I am sorry you are going through all of this but I would really recommend making the appointment. Why are you scared? Nobody wants to get a diagnosis but it may be the start of the help you need. Its a life challenge to me because every day is very hard and some are not, but the referral is the start of learning to move forward. I know its hard, but you need to do it. There is much information here which will help and do drop by for a chat.
Take a deep breath. Some positive thoughts and take the steps. Make the appointment. Read about what to expect and ask a lot of questions. You don't need to be scared. One day at a time.
I forgot to ask. Did you follow up with the endometriosis? I would also ask for a referral to a gynaecologist as that will need treatment and management. I had it and went for injections. Its also something that I would do sooner as it can cause other problems. I didn't want to be a doom machine but I would follow up as soon as possible.
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