Fibromyalgia : Got back in touch with... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,420 members66,475 posts

Fibromyalgia

15 Replies

Got back in touch with my Doctor today as I cannot tolerate all the Meds she is giving me, felt like I was a Bloody burden, as though she cannot be bothered, now after me asking and asking for blood test and a medical to actually prove my symptoms I get a blood test in a week and an assessment late January 16, she told me I had this illness and yes I have all the symptoms , but now being left in pain, why do docs do this, they really do not understand this illness, and how much it burdens you, why tell me yes you have fibromyalgia and then leave you hanging, I just feel like crying right now, but I am going to be strong I am going to try and sort my own self out with pain management , and sod the docs , and still try and care for my Husband . Who has had a kidney Transplant . I am livid right now, ahh and that does so much for my sleep pattern, not

Read more about...
15 Replies
Shadows-walker profile image
Shadows-walker

Have they done a vit d test if not ask for one it take 3 week to get results on that one here , have you got a rhumatolgist, is your hair thinning if it is ask foe a dermatologist as well cover all bases xx

Try and stay calm , I know it's not easy ,and try and pace yourself , you can also ask for a pain and fatigue clinic to learn more to help yourself ,

Hugs

Be kind and gentle with yourself ,don't beat yourself up

Chris X

in reply to Shadows-walker

Hey Chris, my Doc seems reluctant to send me anywhere I have asked , but all I get back is, we only send you if we don't know what to do. Well as far as I am concerned we are at this stage. As for my Hair yes has been falling out and thinning for a while now, but I didn't know this was part of it?, just thought it was my lack of food due to IBS-D and Panic attacks.

I am trying to pace myself but doesn't always go to plan. But what really is annoying me is they look at you as if your lying, and I am dreading the joint and muscle test she is going to do, they are too rough.

Thanks for your reply, very kind.

Take care

Tracey

Scottish-piglet profile image
Scottish-piglet

My doctor told me that there isn't a pain killer in the world that will get rid of Fibro pain so I only have paracetamol and Dihydracodine. What's the use unless they or someone very close to them has Fibro they can never understand how it affects us. Anger can help you achieve things while you remain livid but beware of the pain as you try to calm down.

I no longer go and see my doctor about any pain I suffer because they don't and can't understand. My attitude gets me down a lot and I do hope you find something to help.

Good recovery to your husband but meantime learn to listen to your body, you need to rest too x

in reply to Scottish-piglet

I know how you feel, I am getting to this stage with Docs, Basically I think they don't really know what to do and they make us feel bad for their mis understandings. Grrrr

Hope you find some relieve too

Take care

Tracey xx

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read this and I sincerely hope that you can find some resolution to these issues. I can genuinely understand your frustration with the doctors but this could make your Fibro worse.

I want to genuinely and sincerely wish both you and your husband all the very best. Please take care of yourselves.

All my hopes and dreams for both of you

Ken

in reply to TheAuthor

Thanks Ken just so frustrating, you take care too

Tracey

fibroglow profile image
fibroglow

Blue52 sorry endless battles with Health Professionals. I really hope you can get all the Support & proper Medication that you really need. I also having struggles with Medical Professionals. Understand having to fight for proper Care for my Partner. After Life Saving Surgery this year. Also future Operation that he needs!! Thought they could Delay etc!! Sorry as you can probably Tell. So Stressful But Please Keep Strong. Your Husband needs you to be!! Pray he Revovers Well. Much Love Jan. XXX

in reply to fibroglow

Hi Jan thank you I won't let it beat me and I will stay strong , I wish you and your husband well and hope the op goes well, I can sympathise with you as my husband has had numerous ops and yes it is very stressful , my daughter cheers him up playing dot to dot on all his scars, that are long and deep, so she helps to keep us cheery. He is doing very well at the moment and I wish this for you both.

Take care, much lov back.xx

Tracey

fibroglow profile image
fibroglow in reply to

Blue52 thanks Same Back Take Care.XX

Margjean profile image
Margjean

I haven't got fibromyalgia,thyroid problem,just read this,my friend has fibromyalgia and takes Endep for the pain.Just thought it may help you .good luck.

in reply to Margjean

Thank you will look it up.x

meloha profile image
meloha

I am so sorry you are having such pain! Panic attacks are often related to adrenal problems, and are truly unpleasant -- I've had them! Fibro, thyroid problems, and adrenal problems seem to go together, so it's good if you can get the other things checked out too. There is an adrenal test where you spit in a tube 4x a day, then send it in to the lab. They measure the hormones in the saliva. It's supposed to be high in the morning and taper off to lower at night. Mine was low in the morning and tapered off to nothing! There's a web page rt3-adrenals.org/ that's very informative. I'm in the US and don't know what labs are available in the UK. I am taking Thorne (brand name) Adrenal Cortex for this.

in reply to meloha

I will see what I can find Meloha, and thank you.x

Fibroman profile image
Fibroman

The problem with Fibromyalgia is there are no reliable tests. Took me 3 years of tests before I got my diagnoses. Its more a mental health problem , we are wired different to others. Stress triggers flair ups and while you are still in denial your stress levels wont fall. Take what ever medication the doctor will give you , antidepressants , pain killers and most important muscle relaxers (amitriptyline). Amitrriptyline will make you feel drowsy and you will probably need to up the dose after a week or two. I take 50 mg an hour before I want to sleep. Sleep and stress are the key to reducing your pain. Its a vicious circle but instead of fighting it , listen to Doctor and give it time. I only tell you this because I wish someone had been honest with me , would have saved years of pain and sleepless nights. Sympathy is great but honesty will be more useful.

Hi Fifoman , I have had to fight to get my blood test, Doc says it's very hard to diagnose . What is it they are looking for in our bloods, and how did they finally diagnose you.

And thanks for the warning and being straight , at least I know what I am looking forward too

You may also like...

Is this Fibromyalgia?

I've been struggling with pain for 4+ months now. GP did loads of blood tests, all negative. I...

Is this Fibromyalgia?

I have asked the doctor if my problems are Fibromyalgia but she said that is when it hurts to be...

Fibromyalgia

exhausted for about 4 years. My doctors do blood tests but they always come back negative. Witch...

Fibromyalgia

with this pain or any type of physical exercise that you found help with the pain please could you...

Fibromyalgia

After months of blood tests to rule out everything including Lupas, my GP has now mentioned...