Newbie Not Diaganosed yet but need advice please

Discussion in 'Fibromyalgia Main Forum' started by shellshock99, Jun 5, 2008.

  1. shellshock99

    shellshock99 New Member

    Hi Guys,

    Suspect I may have FM, but when reading all info sites they say that the pain is usually felt all over the body. I'm having many symptoms associated with FM i.e fatigue, depression because of the discomfort constantly etc, but my main problems are constant chronic pain and discomfort in my jaw, face, neck, shoulder's and headache (head feels constantly tight and off often causing what i call funny turns, dizzy and out of it feeling) which is driving me insane, but as far as any other pain goes i get severe deep set aching in my right arm and leg, rarely ever get it on my left side, also my arms ache very easily, peeling potatoes and even writing leaves me very uncomfortable.

    As my main pain symptoms are only really affecting my right side, what do you guys think the likelyhood of this being FM is? Only I cannot get my doctor to do any tests for anything, they just keep telling me i'm suffering anxiety, but I know there's something wrong

    PLEASE HELP !!!!!!!!!!!
  2. eeyoreblue02

    eeyoreblue02 Member

    Have you been checked for TMJ? That seems likely with your pain being in your jaw, face, neck and shoulders. Do your hands and fingers also get numb along with the aching? If so, consider carpal tunnel syndrome.

    Your pain symptoms don't seem typical for FM, at least to me.

  3. shellshock99

    shellshock99 New Member

    Thank you for your reply, really appreciate it !!

    I do get tingling in my face, lip and my fingers on occasions. But the ache is the more bothersome symptom, it's like an inner heavy dull ache which leaves me in a lot of discomfort and very irritable, feel like I could just chop them off, it's very destressing,

    Was told that as my symptoms are travelling down into my arm and leg it's unlikely TMJ also again with carpel have been told this only affects the hands, but i really don't know, struggling to get my doctor to do any tests they say it's all anxiety but I know it's not. Just recently visited a dentist who again was unhelpful, said my teeth gums etc are really healthy, just come back in 6 Months for a check up, i'm hitting brick walls everywhere I turn, but i've been feeling unwell battling very distressing symptoms for some 3 years now, that's why I though i'd try here, because at looking at the symptoms list i'm having most of them, but i'm just not typical if that makes sense
    [This Message was Edited on 06/06/2008]
    [This Message was Edited on 06/06/2008]
  4. msbsgblue

    msbsgblue Member

    I don't think you can diagnose youself based on one reply as it affects each of differently.

    One of the measures of this illness is it you have so many trigger points that bother you.

    Since you have trigger points in the neck and shoulder blades etc it could be possible that FM is the cause.

    You just have to find someone who can check that for you.

    If you read articles here you will see that we all have varying degrees of this illness.
  5. shellshock99

    shellshock99 New Member

    Hope you don't mind me calling you that!

    That's given me a little reassurance that FM may still be my problem as to be honest with you I really can't seem to find anything else myself that makes sense, because my doctor just smiles at me when I go see her and it's just getting beyond a joke now, this discomfort and feeling out of it all the time is really wearing me down.

    Any idea's anyone on how I could approach my doctor with FM being a possibility without making her feel like i'm self diagnosing as I know that really hacks them off, would really appreciate some ideas folks !!!

    Thanks in advance, shellshock99
  6. msbsgblue

    msbsgblue Member

    Asking her to press on your trigger points to see if you are tender in these areas. Then you might just ask her if she feels it could be FM.

    Other then that maybe get a second opinion from someone.
  7. DeborahLynn

    DeborahLynn Member

    I have read many posts on this board and elsewhere that FM pain sometimes is located in certain areas, and not necessarily all over.

    Your doctor doesn't sound like he/she is listening to you, or he/she is just writing you off. Please, find another doctor who will listen and treat you! We "hire" our doctors, and when they don't do a sufficient job, it's time to find one who will. We're the ones paying all the money; you can find one who will listen to you. It may take some time and research, but don't give up.

    Find a doctor who will do testing (if you haven't already had the testing done) to rule out other conditions. Or, find someone who believes in and treats FM, and will be able to cut through to the real problem. There are doctors out there who believe in FM; they are few and far between, but they are out there.

    Don't give up! I went from doctor to doctor for five years before getting a ME/CFS (myalgic encephalopathy/chronic fatigue syndrome) and FMS diagnosis. Nowadays, it seems as if people are getting diagnosed much sooner than in former years.

    I did a lot of praying during those years, and it was a searching process. I'll be praying for you!

    God bless,

  8. DeborahLynn

    DeborahLynn Member

    I just now looked in your profile, and noticed that you are in the UK. I sure do hope you can find a doctor there! I am in the US, so I'm not sure how to go about finding a doctor over there. I have read from some researchers in the UK who are finally accepting and researching ME/CFS and FMS.

    A new day is coming, I pray, when doctors will believe their ME/CFS and FMS patients!


  9. marti_zavala

    marti_zavala Member

    We are not all typical, maybe you had an injury on one side and so those muscles have trauma and that is why you hurt on one side.

    Also, these illnesses seem to be neurological and one-sideness happens alot with nerves.

    GET ANOTHER DOCTOR - don't waste another minute. I'd smack that smirk off her face. No more patience with that stuff.

    She works for you! Move on. I know that it is not easy in the UK. There is no test other than the tender points which you can find on the internet - you could diagnose youself just as easily as a doctor.

    Another point - why do you need a diagnosis? Traditional medicine in the US is terrible towards these illnesses and I understand it's worse in the UK. Most of us treat ourselves which is why these boards are so helpful. Also, natural supplements are better than pharmaceutical so you really arent' missing a lot.

    The key is to start feeling better - you can do that on your own at the health food store. I take malic acid 1200mg, Magnesium 400mg for my muscle pain. I take tramadol (generic Ultram) for my other pains (helps some for fibro too - that isn't natural but just throwing it out there)

    Get good sleep - I take 5HTP, melatonin 300mcg and valerian root. You would be amazed at how much better you feel after getting better sleep.

    Your arms ache because the mitochondria is out of steam. Google mitochondria, ATP, CQ10. You may find you can help yourself more without having to deal with Dr. Dum-Dum.

  10. shellshock99

    shellshock99 New Member

    Really appreciate your replies Debbie and Marti, the more i'm reading the more i suspect this could be FM, unless of course i have some serious neuro problem (tumour etc), can't get the doc to even refer me to a neurologist, gonna go see her real soon and get something done, i need to at least know it's nothing really serious, even if i don't get a diagnosis of FM !!

    Marti, I don't recall ever having a particular trauma on my right side, but all these problems started when i was prescribed an anti depressant a few years ago and got far worse when I came off of it, maybe the right side is just weaker who knows eh?
  11. jasminetee

    jasminetee Member

    It could be FMS but it could be something else. I know it's common with CFS to have one side of the body much more affected than the other, usually the left side though. It doesn't sound like you have CFS to me though.

    Do you have an FMS Support Group near you or anywhere in the UK that might be able to refer you to a doctor who can try the Tender-point Exam on you? It doesn't hurt a lot or anything and it only takes 5 min. and it really helps with diagnosis. Then you'll know one way or the other and if it's not FMS you can cross that one off and continue searching.

    The main thing is that you know something is wrong regardless of whether your doctor gets that or not. You live in your body so you know and many disorders/diseases like FMS are invisible so it can take a lot of perseverance to find a doctor who believes you and knows how to diagnose you.

    In my case I found a Rheumatologist that diagnosed me but not all of them are FMS aware.

  12. marti_zavala

    marti_zavala Member

    Gee, I must have been mad at my doctors on the 6th of June. My post sounds bitter! yikes.

    I do agree that it is important to make sure it is not something else that could be affecting you. TMJ or trigeminal neuralgia are possibilities.

    Having said that, it may be useful for you to test a couple of supplements and see if you get relief. For FMS, magnesium and malic acid are helpful. If you get relief that you would at least know it is a muscle issue.

    Hope you get some relief.

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