Fibro and Hughes

[Fibroapsfighter]

Hi all my name is Jayne I have aps and fibromyalgia aps diagnosed over 10 years ago and fibro about 5 I am having an issue with my appetite as I don't have one does anyone else get this and I have trouble with excess fluid I'm on medication for a bladder problem I can't have water tablets any ideas on how I could get rid of this its mainly in my knees which are very painful I'm at the end of my tether thanks for reading

Jayne xxx

[MaryF Administrator]

HI there and welcome, the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid disorder, in many cases unfortunately due to Thyroid testing being a) very narrow banded in the uk and b) also an over reliance on the TSH test rather than all the others including Thyroid antibodies. People often slip through the net and get told they have Fibro

. I was not happy to settle with that, personally. I joined Thyroid UK's forum on here and followed their advice as per private testing, and paid to do much more reliable tests which showed I had a very slow Thyroid, once treated my water retention disappeared, or most of it. I also urge you to test your iron, your B12 and your vitamin D, this will all add to your problems if low at all.

MaryF

[Fibroapsfighter in reply to MaryF]

Hi thank you for your reply I have heard of Sjogrens before but never been tested for it I have a very low vit d level I've had a lot of blood clots and have been told recently I have brain lesions which have been put down to strokes because of the Hughes but I'm wondering if it could be something else I take a lot of medication including

Warfarin, amitriptyline, aspirin duloxetine tramadol and dihydrocodeine are just some of them I'm scared the Dr has missed something she tells me to accept my limitations but I'm not that sort of person I've had to fight all my life I don't intend to stop now

Sorry didn't mean to write so much

Jayne xx

[MaryF Administrator in reply to Fibroapsfighter]

I suggest investigating your Thyroid via more detailed testing as suggested above, even if just to rule that out, on top of all your other health problems, best of luck. Thank goodness you have a diagnosis and that you are on some medications to help you. MaryF

[Fibroapsfighter in reply to MaryF]

Thank you for your reply I will mention to my go about thyroid I hope she listens I've been there 9 years and last time I went over she asked me why I was on warfarin doesn't fill me with confidence xx

[MaryF Administrator in reply to Fibroapsfighter]

As said above, the GP will only do your TSH which is highly unreliable, the only way I am afraid is to do private and very detailed testing! If you want to do this, you can, as mentioned above, via the recommendations of Thyroid UK. MaryF

[Fibroapsfighter in reply to MaryF]

Ok thank you Mary I'm on benefits so I doubt I could afford the tests xx

[MaryF Administrator in reply to Fibroapsfighter]

Yes it is a shame, some are not too expensive, and it is awful that they are not done on the NHS. So many people are told they are fine Thyroid wise, when clearly they are not. MaryF

[Fibroapsfighter in reply to MaryF]

It's very frustrating Mary sometimes I feel like no one listens maybe it's time for a new Dr xx

[MaryF Administrator in reply to Fibroapsfighter]

Are you under a recommended Hughes Syndrome/APS specialist? MaryF

[Fibroapsfighter in reply to MaryF]

No I have never seen a specialist for aps just got a letter telling me I had it and that was that x

[MaryF Administrator in reply to Fibroapsfighter]

Can you tell me where you are located? MaryF

[Fibroapsfighter in reply to MaryF]

I live inbetween Chorley and Preston x

[MaryF Administrator in reply to Fibroapsfighter]

You need your GP to refer you to one of these, it will not only help you, but help them:

NORTH WEST NHS Specialists:

Professor Imelda Bates

Consultant Haematologist

Royal Liverpool Hospital

Prescott Street, Liverpool

Merseyside L7 8XP

Telephone: [phone]

_______________________________

Professor Ian Bruce

Rheumatology Clinical Lead

The Kellgren Centre of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

_______________________________

Dr Feroza Darwood

Consultant Obstetrics and Gynaecology

Department of Obstetrics and Gynaecology

Liverpool Women's Hospital

Crown Street, Liverpool

Merseyside L8 7SS

Telephone: [phone]

_______________________________

Professor Charles Hay

Consultant Haematologist

Department of Haematology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

_______________________________

Dr Rachel Gorodkin

Consultant Rheumatologist

Department of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

Professor Vanessa Martlew

Consultant Haematologist

Department of Haematology

Royal Liverpool University Hospital

Prescot Street, Liverpool

Merseyside L7 8XP

Telephone: [phone]

_______________________________

Dr Stephen McKew

Consultant Haematologist

Department of Blood Sciences

Countess of Chester Hospital

Countess of Chester Health Park,

Liverpool Road,

Chester, CH2 1UL

Telephone: [phone]

_______________________________

Dr Andrew Will

Clinical Director

Department of Paediatric Hematology

Royal Manchester Children's Hospital

Oxford Road, Manchester M13 9WL

Telephone: [phone]

NO PRIVATE NW SPECIALISTS

MaryF

[Fibroapsfighter in reply to MaryF]

Wow thank you I've got more help off you than I have from my Dr I will ring my gp and make an appointment for a referral

Thanks again xx

[ccurrey79]

Hi Jayne

I too have A PS and Fibro and like you am on similar medication (although I have decided to come of tramadol).

Some days I really don't want to eat as I feel really quesy but on others I can't get enough sweet things.

I was tested last year for Sjorgrens but was told my indicators were not high enough to confirm the condition sadly I still have the symptoms.

These conditions can be very trying and I wish you the best of luck with your battle

Claire x

[Fibroapsfighter in reply to ccurrey79]

Thank you Claire its really hard having two illnesses I am not convinced that I have fibro I think the Dr got fed up trying to find what was wrong I was diagnosed with aps by letter and they just left it at that hope your well today x

[ccurrey79 in reply to Fibroapsfighter]

I agree and sometimes think if I was being better treated for the aps I might have less other symptoms.

A day at work beckons, Hope you have a good one

Claire x

[Fibroapsfighter in reply to ccurrey79]

Have a good day xx

[Fibroapsfighter]

Thank you for replying my vitamin d is really low I've been on supplements twice with my Dr they don't follow up on things last time I was given someone else's results its a joke xx