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Hughes Syndrome APS Forum

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A new diagnosis

JoJo0405 profile image
11 Replies

Hi

Not been on here for a while so here's an up date.

On Saturday 30th January 2016 I was diagnosed Fibromyalgia so that explains most of the pain I'm in, just got to get Meds in order to help combat the pain, which is easier said than done as most meds can't be taken with Clexane.

At least I now know what's going on with me.

Xx

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JoJo0405 profile image
JoJo0405
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11 Replies
MaryF profile image
MaryFAdministrator

Thanks for posting your update, do however keep an eye on your 'diagnosis of Fibro', as so often low vitamin D, SJogrens and also a poor functioning Thyroid, not picked up, due to unreliable testing, can be the culprit. Also keep an eye on your levels of B12 and iron. MaryF

JoJo0405 profile image
JoJo0405 in reply toMaryF

Thank you I will do. Xx

Fra22-57 profile image
Fra22-57

It is good when you are told that it is something recognised and can be helped thou I still suffer badly with,pain,fatigue and you seem to get one auto immune disease and acquire another

Debbweb01 profile image
Debbweb01

Listen to Mary keep an eye on that DX of Fibro! Many APS patients are DX'd with Fibromyalgia! I was in the 90's by a Rheumotologist and NOTHING TUK THE PAIN AWAY! I'm not so sure I have Fibro as I was DX'd with APS IN OCTOBER 2015! Also DX'd with RA now! Hope ur pain gets under control! I wish u the best! Just keep questioning, it's your body and only you know! Any issues speak up! Keep on this Forum too becaus everyone help you with much knowledge! Remember knowledge is POWER!

Peecue profile image
Peecue

I have chronic pain and queried fibromyalgia but not diagnosed. I am on Oxycontin, lidocain infusionsan acupuncture and remedial massage. The reason for last is my muscles go into spasms and the knots need releasing regularly. Pain yes releif yes, and not only that INR goes up an down like a yo yo. St Thomas have requested I do self medication a year ago and finally warfarin clinic is talking about it! But their computer doesn't talk in relation to my INR of 3-4, neither does their consulting Dr, so don't know how many other APS in my area aren't being treated correctly!!!! Thank heaven for St Thomas and their research!!!

MaryF profile image
MaryFAdministrator

Alongside essential checking of levels of B12, D and Iron, I enclose this sheet regarding Hypo Thyroidism, form Thyroid UK: thyroiduk.org.uk/tuk/about_...

MaryF

JoJo0405 profile image
JoJo0405

Thank you for your advice, I'm seeing my GP tomorrow so I'll talk to her about it all then.

Thanx again. X

jetjetjet profile image
jetjetjet

JoJo - i don't have Fibro {so I'm told } was reading advise - I am on plaq and Gaba also morphine and oxys -- muscle relaxers- i get back shots every couple of months and therapy {when i can get it ] and that is needle and stretching . they all help - But sometimes nothing works . but any combination may help . where are you from ??

JoJo0405 profile image
JoJo0405 in reply tojetjetjet

I'm from Kent.

Been to see GP and slowly increasing the Pregabaline to max dose as well as stronger dose of Co-codimol (which makes me sleepy so I can only take it twice a day as I have to drive to get any where from where I live.

Early days so it's all trial and error at the moment.

Xx

jetjetjet profile image
jetjetjet

In England ?

JoJo0405 profile image
JoJo0405 in reply tojetjetjet

Sorry, yes in England. X

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