Fibromyalgia?

Hi,

I am new to this forum and do not have a fibromyalgia diagnosis. However for the last year and a bit I have had widespread pain, tingling, burning, numbness, spasms, tenderness on All areas of my body- more in my limbs and stomach / groin areas. I am also excessively tired but just put this down to full time job and having young children. Because I went through a period of dizzy spells which were very severe resulting in a collapse and seizure on 1 occasion I was referred to a neurologist. The the GP thought I may have MS but my brain scan came back clear and the neurologist put it down to vaso vagal and the spasms down to anxiety. I went away but the pain/ strange sensations continued and I returned to see a few GP's (a different one every time!) one of which eventually diagnosed IBS (I had had pains down one side of my groin and a swab revealed some elevated levels of a certain bacteria but I was told nothing to worry about and not causing the pain) and just to wait and see re the pains etc. Fibromyalgia seems to be the only thing that comes close to any kind of explanation to me. I know this forum is not a tool for diagnosis but it's getting me down that It seems I'm expected to live with this uncertainty and be okay with it!

18 Replies

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  • Forgot to add also that all my blood tests come back normal- iron on the low side but still nothing unusual

  • Hi bekkey

    Welcome to the forum

    As you are newly diagnosed my best personal advice to you would be to take some time out (in your head) to try to come to terms with having a long term condition.

    Acceptance can be incredibly hard when you first find out about your condition.

    Learn as much as you possibly can about Fibro. If you have a look at our mother site you'll find lots of information about Fibro on there

    fmauk.org

    We are incredibly lucky to have such an amazing bunch of people on the forum. Ask anything you want to and we will do our best to help and support you. Please take a look at the pinned post o the home page as this will help on locking posts etc.

    creative1

    FMAUK Volunteer admin

  • thankyou Creativeness

  • Hi bekkey

    check out the information I sent it will have a great deal of details that will benefit you.

    Good Luck :):)

  • Hello bekkey and a warm welcome to our friendly fibro forum where you can get support, advice, hep and understanding.

    Your story is a familiar one for many of us. Some fibromites wait years for a formal diagnosis, often undergoing many tests and scans.

    Fibromyalgia is the default condition that doctors are left with when all other conditions have been eliminated.

    I suggest you ask for a referral to a rheumatologist if your GP is reluctant to diagnose you.

    As you will read on other posts, many of us suffer different symptoms, some more with pain, others with extreme fatigue amongst many kinds of ailments. A rheumatologist may confirm your diagnosis and refer you back to your GP, but at least you will know what is going on with your body and can be treated accordingly.

    I suggest you ring your surgery and ask the receptionist is there is a gp there who is particularly interested in rheumatic diseases. Try and see this doctor every time to get some continuity.

    Looking forward to seeing you around the forum

    Kay

  • Thankyou bluebell- it's good to know that I'm not alone in this and everyone on here has been very understanding and helpful...I will follow up on your advice as I'm seeing my GP next week...well not my GP but a doctor at the surgery. I'm not sure what his special interest is - as you say some continuity would be nice as at the moment I feel like I'm a hot potato being passed from one health professional to another! xx

  • Hi delicious. I did have the wires attached to my head and flashing light tests and they must have been fine. My iron levels are only on the low side of normal so have not been prescribed anything- am not underweight or vegetarian and eat normally so not sure why they a little low but GP does not seem too concerned. I am unsure if testing for lupus/ lyme or thyroid screening has been done but have made an appt with GP for next week so I can check then. I just thought this was something that they would check for with bloods and they came back fine too.Great that everything comes back good but not when pain / sensations are still there! Thanks for the reply- really helpful-and I'll let you know how I get on...

  • ah right yes that was it couldn't think of the name of it! Didn't realise it was something else. Will google it as you suggest. Thanks for your help x

  • Hi bekkey

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I agree completely with delicious21 as there are so many other avenues that should be explored and ruled out prior to a diagnosis of Fibro to ensure that you are not misdiagnosed. I think she has given you some wonderful suggestions / examples also.

    I want to sincerely wish you all the best of luck ascertaining some answers, and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thankyou Ken,

    It certainly helps having somewhere to turn to and a lot of helpful suggestions have been made as you said. Everyone has been very kind. Today has been a good ish day. For me- being busy helps as it's a distraction from the random pains (although not when they're at their worst!).. but I must admit that it is a worry not having any clue what / why I get these pains so am hoping to get somewhere with the GP next week as I don't feel it is right that I should " wait and see"

  • Good luck my friend and I truly hope that you do not have to wait too long, as it is not right.

  • Hello Bekkey.

    Welcome, sorry to hear that you have been diagnosed with fibro, having to look after children can be challenging at the best of times, so please take one day at a time and try not to take to much on board start to learn to listen to your body and pace yourself. How old are your children? When you are suffering from a condition like ours​ you can get very down and snappy as it invaded every aspect of your life (for want of a better term) if you're children are old enough to reason with talk to them explaining in terms that they will understand what you are going through, I was quite young when I started suffering with fibromyalgia and I had children too. Two boys 6 and 8. Since then I have had two more, girls remarried after my son's father died. My boys are now 35 and 33. They have been on this journey with me, they have seen me at my weakest but they have bought so much joy to my life. This illness takes do much away from you, but please know that there are moments when I thank God for those times. I too was working full time, when my son's father died. I tried returning back to work but could not. You will be down at times, and sometimes very unwell and you may even feel like giving up, but you will have good days and better days. Just remember to let those close to you know what you are going through and how they can help you to handle each day. This forum is good and if you need a listening ear there are many here to help, who can truly empathise with you.

    Gentle hugs to you my dear one.

  • Hi Pearl,

    thanks for the reply- I really appreciate you sharing your story with me and it helps a lot. I haven't been diagnosed with fibro but seem to have a lot of the signs/ symptoms. The GP after much time, diagnosed IBS but this does not seem to fit with all the symptoms I've been having. One of the most worrying symptoms is a sharp twisting in abdomen which thankfully does not last long! but still I don't really know why I get these pains. Other pain I can sort of put up with like tender spots on my thighs / bottom of ribs and I also get strange fluttering sensations in abdomen and pulsing in my leg (which is visible) and can last for days. Other strange symptoms were feeling that my right bum cheek was on fire lol and numbness and tingling that lasts for months put the pain can be anywhere!

    My little boy is only 3 so I don't think he will get it yet but sometimes when I have a bad day I will say mummy needs some help or is not feeling well and he knows but I think this makes him feel a bit anxious like he can't rely on me :( xx

  • Tell me about, I first went to the doctor with extreme fatigue at 16, but of course thats what teenagers are like right?! So I was sent away, then over the next 16 years Ive been in and out. Looked at like I was lying, I once suggested it might be CFS, "oh you dont want that, its low iron." !! It was only early this year I was diagnosed. All I can say is keep perservering. Make some noise. Ask to be referred to a rhuematologist. Don't give up.

  • Oh and I got "yeah you could have IBS but you need to find out for self".

  • Thanks Rachel. Really feel for you as the pain is so bad at times and the lack of energy but it seems it is not a 'serious' condition for some health professionals! I will try asking to be referred to a rhuematologist as you say. Just want some answers on how I'm supposed to manage day to day and also with the pains there is also the worry (for me at least) that it may be something more serious that has been missed :/

  • I haven't been diagnosed with anything but i'm trying to work out what is wrong with me too. I have everything you've mentioned but also joint pain/swelling and pleurisy on and off. Because of these additional symptoms things are pointing to an AI disease like lupus and i'm seeing a rheumatologist. I agree maybe you should see a rheumatologist too. These things can be linked to loads of conditions but I think a rheumi usually rules out everything else then diagnoses fibromyalgia. Agree also get vitamin levels check i know b12 deficiency has some serious symptoms like this. It does sound like fibromyalgia though!!

  • Hi rswx- thanks for reply. I agree with you about symptoms being auto immune but you start to think you're losing it a bit when the health experts don't mention this ...interesting about the vitamin levels too. I think I did read something about this as have a bad habit of reading everything I can find on the internet which relates to my symptoms! Sorry to hear that you are suffering with these symptoms plus the swelling and pleurisy but I am also comforted to know that what I'm going through is not just me

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