Kara welcome and no you are not alone in your fight for a diagnosis. It took several doctors 3 years to finally give me a diagnosis. I had several suggest that I was depressed and that there was nothing else wrong with me. I had to keep trying because I was in a hell that I needed answer to. I would suggest that you read Fibro For Dummys as it is a great book that explains fibro. I would also encourage you to continue talking to us and others about what you are going through. Please don't apologize for your post. Every one of us do what we call "rants" to get the frustration out so it doesn't eat us alive. We all understand and we are all here for you. I hope you will continue to both read posts and to post. I would encourage you to seek a counselor to help you with the myriad of emotions you will go through. You are not alone. Keep trying to find a doctor that understands fibro maybe a rheumatologist. But most of all don't give up. With the right meds and learning how to pace yourself you will have a life that you can live with. It will be different than it was but you will still find times of joy and peace.

Gosh, I'm sure every one of us in this group knows exactly how you feel right now! But don't go as long as some of us did expecting to get validation from the doctors. I knew what I had 15 years before we got a support group going here, which encouraged a couple of doctors...(female, and I don't think that's a fluke) who were interested enough in us to learn about it and start specializing in it...although I still don't trust any medical professional to know as much about it as we do unless they have been researching it and living with it as long as us. You are the expert of your body, you always will be, and you need to be your own healer, and use the doctors and medical system in whatever way you see benefits you. I get asked now, who diagnosed my fibro, but in the very beginning...30 plus years ago, I just told them I had it, or I couldn't recall the name of the dr. When word went around that a dr was working with it, I just went to her to get it "officially" diagnosed, but if I hadn't, nothing would have been different. I got better following the Fibromyalgia diet strictly for a couple of years, and following the fibro tools. I've never gotten better based on what some dr had to tell me. I'm so sorry you are having to go through this so young. I started becoming ill in my late 20s and just worked jobs part time and eventually at least got degree and work that I could control when I needed to rest. I knew by the time I was 30 that there was something wrong with me that didn't make sense to the medical system. I felt the embarrassment of not being able to keep up with other people my age., making excuses, I lived alone so no one ever knew or understood what my life was and is really like...but that is the social isolation, and loss many many years later, but don't buy in to friends, family or healthcare providers telling you it is in your head. Of course we are depressed and anxious, but that is one of our symptoms biochemically and just from being so alone and unsure at times....it is a symptom, not the CAUSE. They just don't understand the cause and many health care providers have never learned to say "I don't know so let's try and find out". Don't let them blame you for something they don't know. We are a community here for you, not just on DS but people all over the world that you can connect with and get information from. There are conferences to attend to keep learning what resonates with your particular variation of whatever Fibro is. Our Fibro group here in KC found so many overlaps with CFS, Lyme disease and other illnesses, we finally joined forces some years back. Whatever is going on with us is not just one thing..as a group or within our own bodies. We are all different but so similar.
I'm so glad you are here!

Thank you Megan and Autumn. You've made me in a very short time not feel crazy for once. Here in Ireland doctors are very old school in the fact they think tablets and a good long walk will cure everything!! Anything strange or new they don't want to know. I will of course keep on this page and learn from everybody.
Thank you it's very much appreciated

Welcome, and you're sadly not alone in that doctor "experience". Neurologists and rheumatologists generally dx fibro these days, and rule out a crapload of other things. We have a couple of members who live on the continent of Europe, and maybe they can guide you to a place:-)

And as said above, yeah, we're getting symptoms but medical science has no idea all the causes or mechanisms, no matter how advanced. But we know it's real. We live its reality every day.

Welcome, again, and it's not in your head. It's pain. Pain is invisible on scans and to the eye, but it's still real.

Oh, I had "remission" of FM for 8 years and nobody has yet figured out why, since I haven't changed anything but my age since then! Oh is that frustrating! But it did give me hope that we can get symptoms to back off and stay there---without "tablets and a good long walk". (OMG, I am so sorry any doc ever said taht to you. Shame on them!)

Kara - Welcome to the group! I'm sorry that you are so frustrated with your situation. That doctor sounds like a complete ass. We have all had a least one bad experience with a doctor. I make a point of telling them that they are redundant/fired to their faces. I want them to think about how they treat patients after I leave.

Here in the USA, a lot of rheumatologists no longer diagnose or treat Fibromyalgia. It is, after all, a neuromuscular disorder. A lot of us now see neurologists or a pain management specialist. I Googled "Ireland Fibromyalgia" and came up with some decent links. www.fibroireland.com is an online support group for people with Fibromyalgia. Maybe someone on there knows of a good doctor. Arthritis Ireland has information on it too. Try www.fibromyalgiaUK.com as well. You are going to have to be your own best advocate to get more help than "taking tablets and a good long walk."

Fibromyalgia in some people is triggered by high levels of stress, an accident, surgery, childbirth or emotional trauma. The mechanism that causes it is not understood. It can be managed to some degree by medication. Acupuncture, massage and some forms of exercise such as Yoga or Tai Chi can also be helpful. Epsom salt baths, heating pads, cold packs and muscle rubs are also part of the arsenal that most of us use to combat pain.

Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. This also contributes to impaired cognitive function (foggy and unable to think clearly). This is why you feel so exhausted no matter how much sleep you manage to get. You could try some over the counter sleep aids to see if any of them help while you are looking for a new doctor. Melatonin which is a supplement works pretty well for some people. I'd experiment on the weekend when you don't have to worry about getting up for work. In any event, you should have a sleep study done and will need medication to help you get restorative sleep. Amitriptyline/Elavil is one of many choices.

Oddly enough the doctor did give you one of the three medications used in the USA to treat Fibromyalgia. The three primary medications used here are Duloxetine, Milnacipran and Lyrica. Gabapentin and muscle relaxers are also used. Only certain classes of prescribed medication are used to treat the type of pain caused by fibromylgia. Using over the counter medications like Panadol is usually not effective and you could be causing liver and stomach damage with frequent use.

When you start a new medication, don't expect instant results. The longer a chronic pain cycle continues, the harder it becomes to manage or stop. Allow a minimum of two weeks and expect side effects. Stay well hydrated with water. It takes time and a lot of tinkering to find the right medication/s and dosage for each patient.

Diet is important as well. If you eat a lot of processed food that contains nitrates that could certainly make your pain levels worse. Example include deep fried food, bacon, red wine, ham, etc. Also, artificial sweeteners are known to cause an uptick in pain. Many of us use Stevia if we need a sweetener.

And finally, we recommend the book "Fibromyalgia for Dummies." It is available on Amazon. It will give you a comprehensive overview of this comp[ex illness and a lot of ways to try and manage it. It is also a good educational tool for family and friends.

We have a daily check in every day if you are up to it. It is hosted by Leo who dazzles us with historical tidbits and other fascinating trivia. Just look for the Puma avatar and the day of the week in the heading. Some people check in and others just read and lurk. You are not alone. Good luck and take care.

Hello everybody.
Your responses are greatly appreciated and informative I visited a nutritional therapist today to sort my diet out found out I'm intolerant to most sugars and gluten so cutting these out should help my IBS.
It's great to know yous can relate my experiences so I know now I'm not alone
again thank you very much you dont even realize what you've done

It's so easy to doubt ourselves, to listen to the powerful voice of the doctor, but they can be very very wrong. Sometimes you have to doctor-shop until you find someone who will listen and test and diagnose and review. It's not easy, but very worth it. Fibromyalgia is a bit of a nightmare condition because there's so much confusing information about it, as well as being 'newish' so there are some 'old school' health professionals out there who really don't believe it's an actual condition.

I'm over in England and used to work in the NHS. Can you use your occupational health service to help push for a different specialist? You may not have a confirmed diagnosis but your health is clearly being affected which is affecting your work which puts in OH's remit. Mine was actually really helpful, just completely ignored by management, a major part of what actually triggered the fibro in the first place (v long story). I tell you this to give you a heads up to really watch that work stress if at all possible. Do anything you can to reduce the stresses in your life, simplify and put 'you' first wherever possible to give your body chance to calm down. I'm not promising a miracle cure, but stress is devastating to the mind and body.

My pain management doctor was the one who diagnosed the fibro. He's been brilliant, helping with management tips (obviously!), medication advice, pain management course (highly recommend one), general support and 'yes there's a reason you feel so rubbish and it's called fibromyalgia'! I've no idea what the healthcare set up is like in Ireland, just sharing my best medic.

You'll have to be your own advocate (it sucks) therefore do as much research as you can. Does your hospital have a library you can go and borrow some medical books on fibromyalgia and pain management? That might be a good option.

For me, fibro is a diagnosis of exclusion...by that I mean the symptoms can be the same as so many other conditions it's baffling. But, some biggies are 1) Autoimmune diseases like lupus and ankylosing spondylitis 2) Myelopathy 3) Myofascial pain syndrome 4) Mood disorders 5) Vitamin D deficiency 6) Vitamin B12 deficiency 7) Celiac disease 8) Hypothyroidism (which is, fortunately, relatively easy to rule out decisively) 9) Some cancers in their early and middle stages can cause mostly just pain and malaise 10) Lyme disease 11) Small fiber peripheral neuropathy 12) Positional cervical cord compression is pinching of the spinal cord in specific positions only.
This isn't 'my' list, it comes from my favourite website www.painscience.com science based information that has a whole section on fibromyalgia.

I've finally worked out how to do separate paragraphs on DS! Go me. Off topic, sorry, but it's been bugging me for ages!

Good luck. Remember you're not alone. All questions and offloads and rants are welcome :-)

Hi pumpkin,
it was the physical therapist in work that first advised me I could have fibro. My manager is a registered nurse so she is very supportive which I am very lucky for. Spoke to my doctor again yesterday as I was given supplements by the nutritional therapist and wanted to ensure they wouldn't react with my medications. From reading your posts I gained a little more confidence to question him on my official diagnosis. He looked a bit exasperated and said you really don't need a diagnosis it could ruin your chances of work in the future it is a stigma so at the moment you have a group of symptoms so please live with that and read about fibromyalgia if you want but it's not something I would be discussing in work.
This has blown my mind I understand where he's coming from and I appreciate his acknowledgement of the fact he knows I do have fibro. But it never occurred to me I could potentially lose my job or be turned down for a job because of it . His coldest from last appointment now makes sense

Oh my word, Karaleanne, your doctor...well, I'll try and be polite! You poor thing. That really is mind blowing. My first thought is 'he's wrong, you wouldn't get fired for having fibro, you'd get fired for having time off or not being up to doing your job, no matter what the cause', but maybe he's right - maybe it's more like that in Ireland, but gosh!! I did get fired, by the way, for having too much time off (after my horrible manager messed with my work life, so very different to your situation).

To a certain degree, as long as all other causes have been ruled out, you may be ok without a diagnosis, you can certainly do lots of things to manage your energy and pain without having that diagnosis but it could make it harder. But...having a supporting manager makes all the difference.

Funny he says having fibromyalgia is a stigma. That says a lot about him as a practitioner and as a person. Is it a stigma to have diabetes? Ah, nope! That's so narrow minded, but that's how it was with fibro in the earlier days. It's taken many years for it to be accepted and I forget there are still some dinosaurs out there who don't think that way. There's nothing to be ashamed about for being ill, for goodness sake.