hughs syndrome

[loulou123]

i got told 2 years ago that i have hughs syndrome im in constant pain and tierd all the time though im on traetment im still getting blood clots any ideas as to whats happening i feel so unwell

[Manofmendip]

Hello LouLou.

I'm sorry to hear that you are so poorly.

Where are you from? Please set your location on your profile, as it helps us to help you.

What medication are you currently on?

Best wishes.

Dave

[loulou123]

im in manchester and i take an injection daily called fundapirexan or something like that

[kathyD64]

Hi LouLou,

You really need a review are you under any specialist like a rheumatologist or haematologist hun? is your GP up to speed with the condition? i take warfarin some have injections or a conbination of treatment including aspirin - often post clots warfarin would be the normal cause of treatment have you had that? and where have your clots been? the tiredness aches and pains can be all related to APS alone or it could be you also have other auto immune conditions that are associated with hughes.

Blood tests are needed to evaluate this and a medical history but someone who is an expert in APS.

So sorry you are feeling so unwell i just hope you have family to support you and help you get appropriate help if this is lacking. Keep us updated once properly assessed and on the correct dosage / drug you should feel much better kathy xxx

[loulou123]

i see the hospital doctor every three weeks on daily injections but still feel like carp all the clpots have been in my legs

[loulou123]

my husband is coming to my appointment this month when i go and hes gonna tell the doctor how im feeling surely i shouldnt be like this all the time i didnt wake up at all yesterday i slept all the night before and all day yesterday feel so unwell at the min but not going to a n e also im trying to change my hospital doctor because i dont like him we dont get on lol but i do tell him to altogether i have continuied to get clots dispite me being on treatment had nine in all since 2010 and i hate getting em they hurt like mad

[MaryF Administrator]

Hi there things are tough for you by the sounds of it. Does your consultant fully understand APS and all it's manifestation, as it sounds as if other medications may need to be tried or added in. You need to take somebody with you to your appointment, if your husband can't come, somebody who will help you fight your corner whilst you are feeling so terribly ill and tired. We do have a list of doctors who understand APS on our charity website, where are you located? Mary F x

[loulou123]

im in manchester m 23 area

[MaryF Administrator in reply to loulou123]

Here is the nearest specialist that your GP/Consultant could contact, please also show your husband:

Professor Ian Bruce

Rheumatology Clinical Lead

The Kellgren Centre of Rheumatology

Manchester Royal Infirmary

Oxford Road, Manchester M13 9WL

Telephone: [phone]

Mary F x

[loulou123 in reply to MaryF]

thanks i ring him today hopefully ill be able to have a chat to him

[MaryF Administrator in reply to loulou123]

AND, he may not speak with you, but you need your GP/or current rheumatologist to engage with him, push hard for a referral, go to your GP, and explain that the charity heading this condition, has this medical consultant on their list of approved contacts. Take your husband, or a friend or another trusted relative. If you see the right person, they will sort your medication out and life will become far easier, both physically and emotionally. Mary F x

[loulou123 in reply to MaryF]

well right at this moment and time i dont really wanna be here not long ago lost my dad plus this illness that i have is makeing me very depressed have spoken to my g p and they tell me im under the hospital and getting treatment bassically deal with it

[loulou123]

i dont understand this condition at all dont think my doctor understands to how im feeling tonight i carnt sleep at all legs are really paining to they do pain all the time with no relieve either even though i take morphine for the pain im at my wits end and dont know what to do anymore

[GinaD]

I am so sorry you feel at wits end. Hope we can help. Take a deep breath and plot out the Next Step. Which is getting that referral. Take it one step at a time. Managing our condition is daunting. So take it one step at a time.

[Hidden]

I got diagnosed about 3 years ago after a doctor suggested a full blood analysis after so many miscarriages. I've not actually had any help with the problem as I live in Greece and don't speak the language well enough to get help. My husband and his family clearly view me as a winger and take little notice - especially as before I was diagnosed my sister in law (then a medical student) convinced every one I had MS despite my constant claims that I'd had similar symptoms since childhood, I was treated as an idiot - OK, I was suffering from confusion at the time, but I hold a science degree.

I think I might be getting worse, most days feel like I'm swimming against a tide with weight on my shoulders, but how do you all tell the physical problems from the mental ones?

[loulou123]

i got told i had hughs syndrome last year many blood clots later on treatment daily and on wenesday i got took in hospital to be told i have yet another blood clot in my leg im at my wits end with all these clots had about 11 now constant pain to

[kfolsolm]

I have felt like this for years since I was 19, I will be turning 50 at the end of this month. I felt hopeless for years they told me I had fibromyalgia even though I have had several blood clots. They didn't diagnose me until yesterday. Feeling really angry right now... I am on Xerolta with baby asprin