BRICK WALL

Im so fed up, im in agony all over all the time i have muscle spasms, blurred vision, loss of memory standing is extremely painful, ive got to a point im in a wheel chair most of the time, i waited 8 months to see my specialist as i wanted to ask him to send me for an stand up MRI scan as my hip and back pain is extreme, only for him to keep canceling and fob me of to some one lower than him, i finally on Thursday get to see this person, who didn't listen to a word i said, then sent a letter to my doctor saying they were not going to do an mri scan as apparently nothing has changed, i feel like im talking to a brick wall, everything has changed, ive got so many new symptoms i m having blackouts i cant walk ive memory loss i fall over , i drop things,i have IBS im getting worse each day i pointed out the rash across my face and up my legs i told her about the pain and none of these things were taken in so im back to square one again as i feel the specialists don't want to know, they make me feel like im making it up or imaging it all, i dont know how im ever going to get someone to take me seriously instead of fobbing me off, i know i have sevre fibro but i also think i have something else they have not bothered to try and find out what, my docter is crap to i cant talk to her either feels like my life is getting worse and worse and there is no hope

[ladymoth]

Hii Angelheaven,

You are not alone in feeling like this - I guess most of us here have been in the same situation at some time, but things will improve. In circumstances like this, we usually recommend that you make a written list of your problems and concerns, and that you take it along to your GP. Have someone with you for moral support if possible.

Be very clear about your expectations and needs, and insist that things are set in motion.

If that still seems difficult, then write to the practice manager, expressing your concerns and disappointment as clearly as possible.

You always have the option of changing your GP if you feel that you have no faith in her, but you may find that a very direct approach will get the results you need.

You don't say if you saw a rheumatologist or a neurologist, but whichever - you might prefer to see the other, as both have knowledge of fibromyalgia. As you say, you should also have extensive tests to reassure you that nothing else is wrong.

It is unfair that you should be left untreated like this. Your doctors get paid a lot of money to look after you, and it looks like they aren't doing a very good job.

Don't lose heart - there is a lot that can be done, but it has to be accessed and organised. Time to start making a fuss, and demanding satisfaction - politely of course, but very firmly!

I wish you the very best of luck for some improvement, and please let us know how you get on.

Moffy x

[Hidden in reply to ladymoth]

Thanks Moffy i have taken note and will try to demand and make a fuss very politely of course lol jo x

[spidey]

I am with you on the hip and back pain honey. I have felt like banging my head against that brick wall myself. The only person who seemed to understand and bring about some sort of relief was an osteopath. He gave me some exercises which take the worst of it off. The main one I fond helpful is to lay in a hot bath and pull up your knees like when you have an exam in the docs. If you can do this, supporting yourself with your arms and hands, for about ten minutes each bath, it does seem to release some fo the tightness. A hot water bottle on the upper thigh when you are sitting down helps too, as do some fairly stout trainers when you feel able to walk. Some areas have osteopathy schools were you can see top year students for a lowered fee.

[fyrefly]

I take my hat off to you, you're still fighting and it must be so hard and frustrating for you. I can't offer much advice except to say that whenever you have to go to the doctor's or when you see a specialist, always,always take someone with you. We all know what it's like with CFS and Fibro, at the most annoying times your brain can't remember certain words, or the most simple things you want to say won't join themselves up into sentences that other people will understand and your memory fails you. Accepting this fact is important.

I always write a list of the things I want to bring up and only once have I been made to feel that I'm a nuisance, but who cares ? It's your life and health and as moffy says, they're paid to do their job properly.

Moffy is also right about making a fuss and doing it politely, then you can never be criticised for being rude.

Hope things improve for you soon x

[Hidden in reply to fyrefly]

Thanks, i will from now on take someone with me, does anyone else on here feel like people with fibro are treated as if its in there heads, they try to say your depressed, or that you can think all these symptoms away, makes me so mad, as its real pain and the symptoms are real and the only reason im down is they dont listen grrrrrrrrrrrrrrrrrr

[Hidden]

Have you been tested for lupus as that has many symptoms similar to fibro and includes a rash on the face... Not to worry you it's just a thought as things often get fobbed off as fibro

As moffy says complain politely

Hope things get better for you

VGx

[Hidden in reply to Hidden]

No they haven't tested me for Lupus, and to be honest from looking up the symptoms i was thinking it could be, but she didnt even acknowledge the rash on the bottom of both legs and across my face, it was like she was not listening,, i feel my only option is to pay to go privately to get tested, this is how i got my fybro diagnosis, as no one would listen to me then, in the end i had to borrow money to pay for private tests, which i couldnt afford, i just feel at the end of my tether, wish someone would take what im saying seriously, thanks to everyone for their comments x

[jom277]

I really feel for you that you are not getting the care you should be by health professionals. I am with VG with tests for lupus. I have had loads of blood tests through the rheumy and these have shown signs of bloods for lupus. I am due to see a haematologist on Tuesday to look into it further as it took my rheumy 4 months to tell me about the bloods in the first place.

Ask for the blood tests for lupus as you have a rash that could be associated with it and as VG says the other symptoms could be associated to lupus as well as fibro but needs ruling out.

Good luck

Jo

[Hidden]

would a normal blood test pick Lupus up, as ive had high white blood counts in a blood tests i had for fibro diagnosis which i had to pay for as no one would take any notice of my then, ive looked up the rash on my legs and face and it looks exaxtly the same as a Lupus Rash even the shape of a butterfly across my face , which i had the other day when when i was dismissed and not taken notice of,

Thanks for getting in touch

Jo

x

[Wendylulu]

Sounds like you've been treated appallingly ... All that on top of your health condition .. My heart goes out to you.. Change doctors... Must admit.. I hate going to the docs...though he's been relatively supportive...I wish you the very best x

[Hidden in reply to Wendylulu]

Thankyou x

[Lizzie559]

Hi,

I have just posted a blog called 'My batteries are recharged and I can now keep up with the Duracell Bunny' which tells how I have spent the last year researching on the internet and going from doctor to doctor, and different specialists before discovering I had Hasimotos Thyroidism. I have been tested time and time again by numerous doctors for my thyroid but was told I was' normal'. Well it turns out I wasn't and if I believed them I would still be lying in bed. You need to do your research and go with all the facts and put your case.

The advice on this page is good. Write down what you want to ask and what tests you want done. Do take someone with you for moral support and someone who will fight your corner if your doctor is uncooperative. I know when you fell so ill, that it is difficult to be strong against an inflexible doctor, so an ally in the room is brilliant.

If you get no joy, research doctors and change to one who will be more sympathetic. Believe you me there are more sympathetic doctors out there, you just have to find them.

But most of all, don't give up. Keep fighting, this is your life and your health. You deserve to be treated so much better than you have been. Let us know how you get on and good luck