Good evening all, I know Google isn't a Dr, but I've been asking my GP for over 4 Yr for help and not getting anywhere. When I type all my symptoms into Google, Fibromyalgia shows up and it just seems to be written about me. After having emergency spinal surgery, which was from a severe injury, things got worse, not better, like I thought, from having the surgery. I have lost 5st in weight due to appetite loss, struggle with memory problems and staying focused or concentrating. Constant pain all over, but mostly back and neck, which may be from thr injury. I wake each day feeling exhausted and my joints feel stiff. The chronic fatigue is a killer. I can no longer do all the things I used too and even struggle with the normal day to day things now. My work is becoming affected and in nearly 30years of working, I've had 2 jobs, both long term. The one I'm in, I've been there for 15yrs. Never been unemployed but I'm not at a point that I really don't think I can continue to work. Anyway, there's more than what I've mentioned, but my question is, as my GP keeps sending me for appointments to test X,Y,z, and all coming back ok, I'm just left to get on with things. Bare in mind, I had cancer in 2010 and my dr told me it was nothing, to find out 6 months later that it was cancer. I had the spinal injury and my GP told me it was carpal tunnel, when in fact, I had a severe spinal cord decompression going on. So I have no faith in them helping at the min. After seeing Fibromyalgia on Google, after typing my symptoms in, should I mention this to my Dr? Or is this forbidden? Will it come across like I'm a hypochondriac? I don't want to come across like I have a medical degree and know what I'm talking about, but I also can't continue living life like this and 'getting on with it'. I'm even crying just writing this. I just don't know what to do anymore. Any advice would be appreciated. Thank you in advance.
Fibro?: Good evening all, I know Google... - Fibromyalgia Acti...
Fibro?
Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Your symptoms could point towards fibromyalgia, especially as it sounds like they have done all the tests to rule out other causes. There is no test for fibromyalgia, so all tests will come back as normal - but that doesn't mean there is nothing wrong
While not a test as such, your gp can complete 2 questionnaires, where if you score higher than a certain number of is an indicator of fibromyalgia (widespread pain index and symptom severity score). Also the Royal College of Physicians have diagnostic pathway for fibromyalgia on their website.
It may also be helpful to keep a pain /symptom diary for a couple of weeks, with your main symptoms - as this can help to show the bigger picture to your gp
Good luck in getting a diagnosis - whether you have fibro or something else xxx
Hello, thats exactly how i feel. Ive googled fibromyalgia and i tick all the boxes. Saw a locum gp this morning and he said if the blood tests come back clear then he does not know what it is. I said what do i do about the pain i am in and he said take paracetamol. He said its hard to diagnose fibromyalgia and there is not much treatment for it. I feel completely let down and am in unbearable pain and dont know what to do with myself. I dont know where to turn next.
That's what I did. I'd been going to the gp for years with what I thought were unconnected ailments, I thought I was going mad. Then I found Fibromyalgia on a website, didn't really have google then, I printed it out and handed it to them, they said yes it probably was fibro.
Hi DreamsLostIt is really horrible feeling so unwell but all the tests come back negative!
I also googled my symptoms (NHS websites only) and took in a list of 4 things it might be to my doctor.
We then had a discussion about each thing and I had further tests.
Eventually I got my diagnosis of fibromyalgia.
Sometimes doctors must cringe when patients come in with a list but it raises certain information that the doctor might not know. MS was on my list and I have a brother and niece with this. Although not hereditary, there is a genetic link.
I hope you get answers soon!
The exhaustion is key I think. Have you seen a rheumatologist about autoimmune. It was my first big symptom, exhaustion every day. Having to sleep and rest for a couple of hours in the afternoon in my late 30s. I had just lost a kidney then had brain haemorrhage 3 years later. Its still taken 8 years to get my diagnosis after all this. I was getting blurred vision, joint pain, dry mouth, pain down below, sun sensitivity, rashes. But I knew I shouldn't feel this tired, like i had flu all the time. I finally got diagnosed with lupus, sjogrens syndrome and recently fibromyalgia. Sometimes they can be under the surface all your life or sometimes trauma can bring on autoimmune. Maybe you need to see a rheumatologist who specialises in autoimmune conditions. I am negative on all bloods except dsdna (double stranded dna) but since medication this is now negative. I still have inflammation but hopefully organ damage is under control. Once you have one autoimmune condition it's not unusual to collect another unfortunately. You have to fight unfortunately and be in it for the long haul because you need medication to stay well if you have any condition like this. If you know somethings wrong then keep fighting, keep seeking answers for your own health.
I'm so sorry dreamlost, what an ordeal you have been through, have you tried changing your Dr you see, if u have, change surgery, it could be a changer for you, I did it and I was taken seriously. I wish you all the luck
I would tell your doctor that you have all the symptoms of fibromyalgia, it can be triggered by something like an accident or an operation, and ask for a referral to a rheumatologist who will be able to diagnose you properly. I would also think about moving to another GP surgery if possible as yours sounds a bit useless.
Sometimes google can be a better doctor than your doctor. 
It depends on where you end up. Caution is advised both with google and with doctors. In your case I have my doubts that your doctor is better than google. Keep advocating for yourself and make sure that all avenues are explored before a final diagnosis is made. It might take some time and some fighting but you are worth it; your health is worth it. Best wishes for your journey. Come back here for support, should you feel worn down.
Wow, thank you all. Thank you for the welcome and thank you for your comments of advice/guidance. There's so much more symptoms I'm experiencing than mentioned and I googled my symptoms, Fibromyalgia was on a list from also CFS, MS and another one, bur I forget now. However, reading the Fibromyalgia symptoms, I swear it felt like someone had written EXACTLY how I was feeling and what I was going through.
I've gone from a size UK 10/12 clothes, down to a size 4 being too big for me. I have absolutely no appetite at all. But not only that, the smell of food cooking, literally makes me feel nauseous, so if I do attempt to make myself a meal, I never get to eat it because of the nausea. I've begged my Dr for help as I hate being extremely underweight and the referred me to an eating disorder specialist.....twice!! Each time I explained I'm not trying to loose weight etc and both times, I was discharged b3cause I didn't fit the criteria. However, the second time, they said that they thought I had ARFID, (Avoidance, restrictive, food intake disorder), which I totally disagree with. But no one is listening. Then I was went for a colonoscopy and endoscopy, I had some polyps removed, but other than that, they said everything else was fine.
Anyway, I'm rambling on now, but yeah, at 44, single mother to a 12yr old autistic son, I feel like a failure and a weakling. Like this is life and I should just get on with it. But it's hard when you're exhausted constantly. In pain constantly. Unable to eat, even though I cook daily for my son. Its just too much now.
I have the Dr again on the 22nd and this was the time I was going to lay it all on the table and tell them how much I feel let down and unheard. Remind them of the times they got things wrong, especially the cancer, as the day after I found out I had it, My GP was knocking on my door at 9am to apologise to me as he had cut into this mass (which was in my vaginal canal), telling me its nothing and how he hadn't slept that previous night after he found out, hence he wanted to come and apologise. So yeah, I was going yo tell them that I had seen Fibromyalgia, after googling my symptoms, but I also didn't want then to get upset or annoyed at me for suggesting thus, seen as I'm no medical exexpert.
I am seeing a different Dr next week, but if I feel unheard or passed around again, I will tell them that I am moving surgery because of not being listened too.
Anyway, thank you all so much. I will write a diary between now and my appointment of everything I feel, etc, as well as ask for a referral to a rheumatologist, and with hope, I get to the bottom of this. Because I truly believe this can't be my life from here on in now. Can it?!
Have you had your vitamins and minerals in bloods tested notably ferritin, B12, folate and vitD…just if you are not eating you might be very low, and from experience ( I have fibro, hypothyroidism and insulin dependent diabetes) pain and fatigue can be made worse if these aren’t optimum?
Hi. I asked my doctor if she thought it might be fibro because I did exactly what you did on google and she said it is possible but have to rule everything else out.
You probably feel exactly the same way as we all do with little differences. Good luck with your diagnosis. Bye the way I've still not been diagnosed apart from Carpal tunnel syndrome which I have finally had the op on one wrist and ulnar nerve release. Not made much difference apart from tingling has stopped. Waiting for the other side op. And steroid injection in my shoulders.
All the best and chin up
Hello ,sorry too read you are going threw this , I changed my doctor as for many years the previous really didn’t do much at all 🙁time wasted and struggled more years ,just offered antidepressants and shown the door, this doctor diagnosed me and really in tune with fibro symptoms, I would see someone else for sure. Glad the tests have been done to rule out certain things ,but you need support and getting a diagnosis, some GPS refer to a rheumatologist for a final answer. I hope you get somewhere very soon Uve worked very hard over the years and your body needs too slow down in order too live day too day more comfortably so this is why your diagnosis is important , I am wishing you the best of luck , let us know how things work out xx
Try this approach, it worked for me. Write to your GP asking for a referral to rheumatologist, that way the request is on your records. Then follow it up with a telephone consult. This will also go on your notes. I finally got the referral I needed to the fibro clinic by doing this. I had tried for 2 years to get the referral before adopting this approach. Good luck
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