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Is this really Fibro?

Posted , 7 users are following.

mandy20434
mandy20434

Hi there,

I hope someone can help as desperate. I've been deteriorating gradually over the last two and a half years. Many tests and still uncertainty as what's wrong but keep hearing Fibromyalgia from a few Drs. However, I know someone with fibro and not all my symptoms seem to match hers.

My main issues have been:

Itching and nerve pain since a minor op to have a benign mole removed from above my left breast (was getting in the way of straps is all). Was told the itching, full burning pain was just healing but it never went away and gradually spread through my breast, left side, armpit, left arm, shoulder and up the left side of my neck. This happened over years & Id get tiny spots sometimes only in those areas. I loved with it as got used to it. But three years ago the pain and itching got a bit worse & hurt to carry a bag on that shoulder. I never went to Dr. My main issues began two & a half years ago when this disconfort spread to my upper spine. Not long after that I started getting unwell with the following:

Symptoms on my left side suddenly were mirrored in my right side (shoulder, chest, armpit etc) along with more tiny spots, freckles and new moles (only along the irritated nerve areas).

Then it spread to my neck & gradually over my head, since then:

Easily startled

Fainting eps where I couldn't even sit up without nearly fainting.

When nerves at base if skull started playing up I got more sore spots & moles there but the worst has been:

Deteriorating cognitive function

Mental changes

Muffled hearing / blocked middle ear

Full headaches radiating from neck

Feeling violent

Can't find words

Weird allergies

Blood spots under skin

Tiny bumps under skin in neck where it's irritated

Leasions kn my cheeks that won't heal no matter what I use

Thirst

Brain fog

Disorientated

Can't concentrate

Pain through to teeth

Rapid weight changes despite eating same as I always have.

The pain and itching I can deal with but this deteriorating brain stuff has rendered me unable to function. Feels like my brain is under attack or the nerves in my neck are affecting my brain somehow. Meds that would normally work on me do nothing.

My condition doesn't fluctuate, it just deteriorates. Not especially tired just severe fog and heavy head.

Does anyone else with fibromyalgia have these symptoms? Thanks 🙏 xx

0 likes, 13 replies

13 Replies

  • mandy20434
    mandy20434

    Posted

    Added note: I also suddenly developed lots of facial hair. Like I have to shave twice a day as by night, stubble is back.
  • Magpie2me
    Magpie2me mandy20434

    Posted

    You poor thing! So many symptoms. Well Fibromyalgia can certainly cause a number of unusual symptoms and you should definitely see a Rheumatologist to get a proper diagnosis. But it also sounds like a Hormonal imbalance Mandy. You really should get that all checked out as well. My daughter suffers from an ovarian condition which causes hair growth on her face as well. A hormonal imbalance would also affect your emotions and make you feel quite irritable or even short tempered. I don't know how old you are Mandy but this assessment would be a good place to start as well. The brain fog and headaches can be from Fibromyalgia for sure. But a hormonal imbalance can also bring on feelings of depression and poor concentration and mental confusion at times. Insist on these thorough tests sweetie. I hope you have a good doctor. If not, please see another. We all have to take charge of our own health and obtain answers. Persistance my dear. You will get through this. You are not alone by any means. Don't despair.  Please Keep us posted. Maggie xx

    • mandy20434
      mandy20434 Magpie2me

      Posted

      Thanks for your support Maggie xx

      I've had hormone tests yes, they just showed high testosterone, and a scan showed polycystic ovaries. But the endocrinologist said this wouldn't cause all my symptoms. A naturopath did a cortisol test and said it was spiking too high a lot. But a follow up cortisol test at NHS ruled out cushings.

      I definitely feel it's all been thrown out of balance just don't know why it suddenly happened when these symptoms reached my neck and head.

      I've seen so many specialists: from dermatologists to endocrinologists.

      I have neurology again this week to crossing everything.

      Many thanks!

    • Magpie2me
      Magpie2me mandy20434

      Posted

      Yes Polycystic ovaries, that is what my daughter has. You could also be having premenopausal symptoms, since you have this condition. I started premenopause very early myself. Have you tried to balance your hormones with some natural supplements? You could do some research regarding Maca. Many Peruvian women take this and other women around the world have found this herb very beneficial. And yes I can imagine how fed up with specialist and doctors you would be sweetie! If your cortisol levels were found to be high, you must have endured a great deal of stress in your life Mandy. Stress often brings on the Fibromyalgia. Many of your symptoms may just be linked to FM. It causes some of the weirdest and baffling reactions in the body. Just try to limit your stress and worry as well Mandy. Try your best to create a more peaceful environment for yourself. You may suffer from anxiety as I do. And no wonder!  GAD - General Anxiety Disorder. There are wonderful books on how to manage our anxiety which has really made a difference to me personally. Anxiety and worry can cause all sorts of symptoms, I was astounded! One day at a time sweetie. Never despair. You will eventually find ways to cope with it all and you will find relief. xx
    • mandy20434
      mandy20434 Magpie2me

      Posted

      Thanks hun xx

      Yeah had hormones checked, apparently just high testosterone and several years of fertility left so no premenopausal. I have however been using supplements like u mentioned to try to balance hormones. Maca, Wild Yam, Ashwatanga (not sure about spelling?), evening primrose oil etc. Some of my B vits were low so been supplementing over a year. That helped the awful thirst I constantly had and the B vits u put under the tongue perk me up for a few mins but not for long.

      I have had anxiety probs in life so naturopath wonders if it's adrenal imbalance due to cortisol so just starting DHEA. Felt great the first cupla times I took it but not so much now.

      I'd be glad to put it all down to anxiety, I'll do anything to get sorted so meditate a lot, but the worse my brain gets the harder meditation is. I was in such a happy place when I got sick so it's weird. All the new, itchy moles appearing along the nerve paths effected don't make sense either, unless that's hormonal too. I know hormones can bring on new moles etc. Was worried at first but three dermos have said the moles are normal.

      Anyway thanks for listening and your suggestions xx Neurology tomorrow and seeing a councillor thursday as don't feel right mentally at all. I'll get there. Hope you are well xx

    • Magpie2me
      Magpie2me mandy20434

      Posted

      Poor sweetie. Well you seem to be doing all the right things to help yourself Mandy. You are sure to find answers and to get results since you are proactive regarding your health issues. Just remember sweetie that you are never alone in your struggles. Fibromyalgia and other chronic conditions leave a trail of symptoms and frustration. Never give up Mandy. But try to manage your worry and stress as much as possible. Sometimes we have things hidden in the back of our mind or consciousness that cause us to suffer needlessly. Passed disappointments, failed expectations, heartache, trauma, feeling low self worth, and the list goes on. Try to keep a journal sweetie and get your thoughts out in words. Confide in those ones in your life you feel that really have your back and care. And they are there Mandy. Just as you care about others in your own life, the same applies to you. People care but often do not know what to say. You often just need someone to listen. Take one day at a time Mandy. Don't look at tomorrow and the day after etc, like a mountain to climb. One step at a time. You will get there! Warm cuddles to you sweetie! Maggie xx

    • mandy20434
      mandy20434 Magpie2me

      Posted

      Thanks hun you're so lovely xx

      I've just started seeing a councillor so that'll be good to get stuff out as trying not to cry on my mum as don't wanna worry her.

      Hope you are well ?

  • Miranda3516
    Miranda3516 mandy20434

    Posted

    After about a year of pain, I was recently diagnosed with fibromyalgia. With fibro, there's typically "fibro fog" where you forget things. Last week I woke up to my alarm after a nap but it took me ten minutes to remember that I needed to wake up so I could go back to work after my two hour break between the lunch and dinner shifts. I've heard fibro sufferers have the cognitive functions of someone twenty years older than them, but I've never heard of anger being a symptom. Nor have I heard of your physical symptoms bring indicative of fibro, the ones like lesions, bloodspots, and moles, but I'm relatively new to the diagnosis and I do know that it presents differently in everybody.

    You said you've seen a few doctors, but have you seen a rheumatologist? That was my fourth doctor before they finally diagnosed me, but if you suspect fibro, rheumatology is a good place to start.

    • emma85677
      emma85677 Miranda3516

      Posted

      Hi everyone!...I was diagnosed with Fibro by my specialist. ....I have dound that I do get angry, usually when I'm having a flare up and am unable to rest or sleep. I have actually got red bloodspots which appeared after 2 days of taking some prescribed meds ( can't thunk of rhe name). ...They havn't gone away.

  • trisha87499
    trisha87499 mandy20434

    Posted

    You really need to write all this down and go and see your local doctor, they will know what specialists you need to see, it could be a multitude of illnesses x good luck
  • salemdp
    salemdp mandy20434

    Posted

    The more I've read your replies and details the more I'm concerned you might be dealing with b12 deficiency. But oral supplementation isn't going to take care of it. Read "Could It Be B12?". It's a pretty easy technical read and only about $10 on Amazon. And it could save your life. If this is your problem, you need proper treatment (probably injections- but might also need them to be the methylated version) before there is permanent neurological damage. Doctors rarely know enough about it to effectively diagnose or treat it, so please get adequately educated before bringing it up. But hurry because things can just keep going downhill faster if this is your problem. B12 injections saved my life.

    Might also be good to insist on some biopsies of you most concerning moles. Just to be sure and hopefully rule that stuff out.

  • dave0865
    dave0865 mandy20434

    Posted

    Hope you are feeling better or found the cause since you posted this. If not have you looked into electromagnetic sensitivity? Has lots of symptoms similar to FMS and has also been known to cause rashes, blood spots on people close to strong sources of magnetic fields like WiFi, cell phone towers etc..
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