Fibromyalgia Action UK
40,267 members52,372 posts

Newby and still waiting for final diagnosis

Hi I had a hysterectomy in April this year and got a hospital acquired infection afterwards which took two months to get rid of as i am allergic to just about every known antibiotic there is. Somewhere during this time I got horrednous migraines, incredible chest pain and every joint in my body aches along with feeling fatigued to my core. I went on HRT in May and am also anaemic and am awaiting the results of a failed iron infusion to see if I have retained any of it- allergic to that too. The specialist at the hospital is saying you have Fibro but my GP is a bit sceptical and the gyny thinks it may just be with panadol just to get through the day or to get some sleep at night when I can't take it any more and life is pretty much hell. I work full time in a job that can be quite demanding mentally and boy some days I struggle to put two words together or remember anything. I also now have bursitis in both hips and lower back problems to add to the fun. I will get in to see a rhuematologist some time next year. I yhave seen just about every 'ologist' there is and spent a small fortune doing this. My blood work shows slightly elevated CPR and ESR along with anaemia but not much else and boy have I been tested for just abo uteverything. I think I am now just frustrated and would like a definitive answer and for the Docs all to work together which after 6 months is slowly happening. Sorry for ranting. Is my expereince a common one? I keep getting told "we klnow what you don't have" Wow so happy about that!

5 Replies

i'm undergoing the "journey to diagnosis", as my neurologist put it, myself, still. My gp told me she is "90% certain" this is what I have, but I'm getting a barrage of tests done so that nothing is missed. So far it's all come back clear, except for anaemia and vit d defiency. I'm still waiting on the results of my MRI from a month ago. I too have been told "we know what you don't have", and although that is a huge relief to not have some of those nasty things, it's no relief to be told "the journey is just beginning, it's going to be a long road".


Thanks for that you are the only one that answered! Funny you have anaemia too. I am taking B12 as that was deficient but it is ok at the moment. I have so many symptoms and am really struggling trying to work as I have not been given any form of pain management plan. I am also so fatigued I can hardly stay awake at work some days and start nodding off. God knows when I will get in to a rhuemy probably next June or so I am thinking. In the mean time I will have some cortisone in my hips and some physio on my back as I also have some bulging discs to deal with along with everything else. I have no suppport apart from one friend I talk to on the phone as I am too tired to visit with her on weekends I just want tonsleep and rest. My family thinks I shoudl be 'over it by now' so I have to also do all the cooking and cleaning. I tried to not do it but they don't either and I just couldn't stand the filth any more! I feel like I am turning in to a whinger buit boy oh boy I am getting to the end of my tether.


Well the 'we know what you don't have' is as good a place as any to start. They will rule out everything they can think of before committing to Fibro. Been there done that. I was four years waiting for a firm diagnosis. I also had anemia but that was sorted after a year on folic acid every day. All seems fine now. I prefer to do my own housework as otherwise I would feel surplus to requirements and I could not cope with that, depression in Fibro can be bad enough with adding to it. So I have a to do list for the week and then I break it down into smaller jobs, spreading the bigger jobs over a couple of days. Do not worry about not getting answers to your blogs right away, sometimes it takes time and the fact it appears in an email often alerts members to your blog. They are a fab bunch here and so helpful too. xxxxxxx


Hello and welcome to our lovely forum Someonesmother, you are most welcome here!

Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

I hope you enjoy your time at FibroAction! :)


Sorry to hear you are waiting for answers Someonesmother, it's all a bit trial and error at the beginning, it can be very frustrating. Hopefully before too long you will get your diagnosis and you will know where you are.

We fully sympathise as we all have to go down this route ruling other illnesses and conditions out along the way, test after test, referrals, lots of different meds etc.

We are all here for you and we all understand, take care. xx :)


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