Just looking for some help/advice from fibromyalgia suffers themselves!

[Immabasketcase]

Hi everybody,

I haven’t ever considered fibromyalgia until lately. But I wanted to speak with some strong people who suffer everyday for some advice.

I am 21 years old. I have always been overweight (not severely, 30 lbs maybe.)

For a while now I’ve been depressed, anxious, and tired. I cant remember a time I didn’t struggle with constant fatigue. Always being so young and getting told I should be going out at night and getting drunk with my friends in my teens and 20s. I have no desire to ever do anything but go to bed at 9-10pm. For a while now I have had a lightheaded sensation in my head, headaches, SERIOUS fatigue, fog, and muscle/joint pain for no reason. I’ve been to a neurologist since I was 17 for tingling in my hands and feet, cold hands and feet, and muscle twitches. I’ve gotten test after test and 2 brain MRIS all coming back totally normal. They are out of answers for my issues. I’ve been to my GP countless times who hates me, saying that there is nothing wrong with me. Lately (within the last 2 years) I find that I am always in a strange pain. Whether it’s from a touch in the wrong spot, a press, even shaving my legs hurts. The pain from just being pressed and squeezed is the weirdest thing. Whenever I am massaged or rubbed, I always say I just want a light rub because pressing down on me hurts so bad. I also have had IBS since I was 8 years old. And my constipation has only gotten worse. When I look up my symptoms, they point to fibromyalgia but a lot of them point to anxiety and depression as well. I am scared of embarrassing myself at another doctor like a rheumatologist, I just don’t know if he’ll say I’m fine too. I don’t feel fine. I feel like I’m 85 in a 21 year olds body. I look up tender points for fibromyalgia and my whole body hurts when pressed, my legs and lower back the MOST, and I don’t know if I’m even pressing in the right spots. Nothing runs in my family, my grandma has rheumatoid arthritis but I’ve been tested for that and it’s negative. Any advice is appreciated.

[OminousOwl]

I am also 21 and was diagnosed 2 years ago after nearly a decade of tests coming back that I was fine. The doctors would pass it off as growing pains but I always knew it was something more.

When I was 18 they could no longer blame it on growing.

I hate going to the doctors about aches and pains because I never know if it's the fibro or something more.

I also have IBS which seems to get worse along with my fibrous.

When I went to the doctor before being diagnosed it was my mum that suggest that it might be fibro which led to my diagnosis. For this reason I would go to the doctor and ask about fibro.

Fibro, as it is a chronic pain condition, causes anxiety and depression, both of which I have been diagnosed with. I found that having the diagnosis of fibro, although it isn't pleasant being told as a teen that you have a chronic condition, helped my mental health as I knew what was wrong with me.

I hope you find this helpful and find some peace of mind.

[Immabasketcase in reply to OminousOwl]

Hello and thanks for your reply. You are very strong and I’m sorry you grew up all your life in pain. I feel you! Your post did bring me insight. Thank you so much.

[OminousOwl in reply to Immabasketcase]

I'm happy to help. Being our age with aches and pains isn't pleasant, but I find that it's people that make it worse, they assume that because you're young you don't understand these problems, and doctors even today just pass it off as young people being hysterical.

[Marz]

Am wondering if you have been 'correctly' tested for low thyroid. With low thyroid there are other issues to consider and eliminate too - Low B12 - Folate - Ferritin & VitD. These tests are not routine. The correct tests for thyroid - TSH - FT4 - FT3 & the anti-bodies TPO & Tg. Rarely are they all done on the NHS and so people are missed. Private Testing available through Medichecks and Blue Horizon. More info on Thyroid in the link below ... where you can check out Signs & Symptoms ...

thyroiduk.org

[Immabasketcase in reply to Marz]

Hello! Funny you say this because I was diagnosed with low b12 (level of 200) when I was only 18 years old. I’ve been going to the hematologist ever since (2 years) for b12 shots that I get monthly which only brought my level up to 500. Every physical I get, every doctor visits I have (even recently from a couple days ago) they see a hypothyroidism symptom and they give me a blood test to check and it always comes back fine.

[Marz in reply to Immabasketcase]

You are legally entitled to have copies of your results with ranges so you can see what was tested and check what has been missed 😊 Which test was fine ? - when they say fine they mean in range - but it is where you are in the range that is the key to wellness. You can ring the Receptionist and ask for copies and say you will be along to collect them on Friday. Job done !

Folate/B9 works with B12 in the body in an important way - do you take Folate or Folic Acid ? Was it tested ?

[Immabasketcase in reply to Marz]

My folate has always been fine and no, I don’t take folic acid. I take vitamin c, d, biotin, fish oil, iron, probiotics. My b12 level won’t rise past 500 even when I take supplements and have monthly injections. I am tired ALL the time. I see the hematologist every 6 months and he tests me for everything, all normal. I get copies of my bloodwork every time I go and my thyroid level is always tested and never even on the low side! So confusing. I’ve been told those basic tests aren’t the only tests to diagnosis a thyroid problem though.

[Marz in reply to Immabasketcase]

So what are the thyroid test results you have ? I have detailed all the tests required in an earlier Reply above. All needed to eliminate a thyroid condition - not just the TSH.

[YASMINTINA FMA UK Volunteer]

You do sound like you are ticking a lot of boxes, see another doctor as some are still dismissive of fibromyalgia, I did change my doctor after a few years of just being shown the door, i didn’t realise at the time my anxiety/depression were due to fibromyalgia and then eventually a diagnosis if Cfs, sometimes it takes awhile to get the right help , sometimes a change of surgery even, thank goodness not all doctors are non believers or show negativity, I still dont understand with the thousands of fibromyalgia sufferers . Take a relative with you for some support to your visit, an extra voice who also witnesses what you are going through on a day to day basis. healthunlocked.com/fibromya..., if you would like to lock your posts I’ve left a link above to show you how. Take care let us know how you progress. Xx

[Jamie1965]

It’s hard to get a diagnosis cause as others have said some doctors seem to wear blinkers plus a lot of other illness seem to replicate fibromyalgia symptoms there is no blood test that confirmed fibromyalgia it is one of them illness that has gone under the radar for so long and it now only coming to light a doctor can diagnose it and a hospital but there is no cure it is just a case of learning to manage the pain it affects us all in similar ways but we also are all different some can manage with out meds some can walk excersize some of us can’t I would surgery keeping a diary of pain and feeling for a month then take it to the doctor if you don’t get no joy ask them to refer you to hospital and take it there it took 2.5 years to get diagnosed some people have taken a lot longer good luck with everything I hope they find a diagnosis for you it don’t make no difference to your conditions but it lets you know it is not all in your head

[Bubbles59]

I would see another doctor..ask for a second opinion from...rhuematologist..good luck

[Royalname]

Honey, go and see a

Rheumatologist. Don’t be afraid of another knock back. They are qualified to diagnose you correctly.

I have been where you are, kept knocking on Drs door after

Door,found rejection at times, but I got there in The end, and so can you x

[happygirlami]

Dear Immabasketcase, I'm sorry you are going thru all of this!! It sounds like fibro to me. I was diagnosed almost 5 years ago...I'm still working, but it is not easy. I'm proud of you that you are not out getting drunk anyway......staying away from that life is a HUGE plus for you, all the way around. Hugs to you