Newly diagnosed

Newly diagnosed

Hi,

My name is Julie and I am newly diagnosed with fybromyalgia. I have so many questions but never thought of a single one when I was sat in front of the doctor!

Feeling a little shell shocked but at the same time as if the scattered jigsaw pieces I've been staring at for years have finally been put together and the bigger picture makes sense.

I suffer from headaches daily, my job involves sitting all day which I find uncomfortable. I swear I resemble c3po when I get up and move away from my desk! I get restless legs at night, my tendons regularly "pop" in my wrist, my toes seem to want to remove themselves from my feet at times (excruciating) and my hips just decide to freeze up at will. I'm constantly bloated and have indigestion whether I have eaten or not. And by 3pm I'm done and the best I can hope for is staying awake until I get home from work.

Oh the joys! Lol

Anyway, it's the tiredness I find the hardest to deal with, along with my recently acquired hand tremors, and I wondered if anyone has any useful tips to combat it?

I have blood tests on Tuesday to check b12, vitamin d and blood counts, is that normal?

I'm proud of this post, I wrote whole sentences without losing my train of thought! Go me!

Julie :) xx

9 Replies

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  • Sorry about the huge picture, didn't realise it would load up that big!

  • I the photo is ok x

  • Hello and welcome

    Your popping wrist and stuck hips sound like hypermobility syndrome to me. have you been tested for that as well?

  • Hi Julie

    It's all very complicated and overwhelming to get your head around to start with. Glad to hear the pieces are starting to come together. I too get really bad headaches which is apparently coming from tension in neck and shoulder muscles. Also I clench and bang my teeth together in my sleep.only after seeing the specialist I found out I also clench my jaw when the rest of me is in pain , causing more headaches, finding it hard to stop doing that. Also I am to c3po after sitting for a while ,takes time to loosen up! Tendons in wrists regularly pop when gripping things and have to and have to pop back into place by squeezing wrists back.the bloating and indigestion Could be ibs as I also have this with the same symptoms and also lactose intolerance.

    As for the tremors , I've had a mild problem with this for years , but the last year has gotten quite bad also causing more anxiety. To help I desperately asked docs for help and was given ( PROPRANOLOL) Which they give to calm nerves when taking driving tests and exams etc. They are working really well on a positive note.

    Also had the same bloods done, came back vitamin d deficiency. Not getting enough sun!

    Now on vitamin d substitute, no probs !

    from reading posts on here I have learnt some much to help.

    one repeated hit is to take zinc supplement to help with th tiredness,

    Also helps with the emune system.

    Also with the zinc take magnesium marine ( stearate) tablets which helps

    Maintain bones and with tiredness and fatigue.. have been taking for two weeks and seem to be making a difference.!!!

    Apologies for the essay , but the symmetry of symptoms , just had to help

    in any way. We all have each other's back I've found on this site, everyone keeps each other positive!!

    All the best and good luck!!

    took ages to write this but was worth it.:-)

    Steve xxx

  • Welcome to the forum, and I sincerely hope that you find it useful, informative and loads of fun! I have pasted you a link to our mother site, FibroAction which hosts loads of useful Fibro information:

    fibroaction.org

    I was wondering if you have discussed medication / physiotherapy and / or psychotherapy with your GP or Medical Specialist? or is it all still in the air for you, so to speak? I want to genuinely and sincerely wish you all the best of luck.

    I personally lost count of how many blood tests that I underwent in the beginning?

    All my hopes and dreams for you

    Ken

  • Hi Julie, welcome to the fibro family forum, had some of the bloating you talked about and pain, some of it was caused by gallstones, which i had removed, and some by the fact I had coeliacs disease, which when i have been researching (which i don't do often enough) I found could be linked to fibro, maybe you should ask for a food allergy test , when I found I have coeliacs I was upset more so of the cost of the food and the lack of variety, when I found I had fibro my initial thought was I am going to fight this, that is easier said than done when my legs (which is where I get most pain) were playing me up and RLS, then it got to me, but with medication which I hate taking as it makes me sleepy, the pain is bearable most days, I just wish we could find a pain killer strong enough to stop the pain but that was not an opiate as the fatigue gets you on its own without help from the medication,

  • Hi Julie

    I was diagnosed yesterday and like you, suddenly all the pieces of my 12 year old jigsaw puzzle came together. So we can be newbies together :)

    I'm 42 and have been suffering with a number of different symptoms from unexplained pelvic pain / ovarian cysts, back problems, excruciating joint pain everywhere, night sweats, restless leg syndrome, and recently the dreaded fibro fog. Not great for my job (I'm chief marketing officer for a fintech business) so am trying to hold everything together (including being a mum to 2 active boys!). I'm still in shock - more the realisation that I have to act now and make some substantial changes to my life before I end up unable to work (I can't bear the thought of that as I love my job). Just going to spend the weekend learning as much as I can about this- am here if you need a friendly ear :)

    Cara x

  • Thanks for all the replies :) I am back at the doctors in two weeks to discuss further, need to make myself a list of questions! :-) xx

  • Hi Julie, I get really bad tension headaches and have found that Cranial Osteopathy has helped to ease the tightness in my shoulder muscles; it also helps to calm the adrenal system and since the over stimulation of the adrenal system is thought to contribute to the Fibro symptoms I have found this really helpful. Has anyone else found Cranial Osteopathy helpful?

    Steph

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