Sticky Blood-Hughes Syndrome Support
8,078 members8,319 posts

Things can only get better!!!!!!!!!!!!!!

Where shall I start? (at the beginning)

It has been two weeks and I am STILL not sleeping properly.

Not sleeping until 4 or 5am and waking at 1pm

Maybe I am still suffering from jet-lag. I've been away for a month with my daughter who has just finished 3 years away at university.

Over 30 years ago I was diagnosed with endometriosis, 25 years ago I suffered 3 miscarriages and I put that down to bad luck.

I then went on to have my daughter by IVF. (thank you Prof Winston and team) After another 2 miscarriages and the endometriosis getting worse I made a decision to have a complete total abdominal hysterectomy (I did egg donation first though being only 27 my eggs were still good! Why waste them!)

That's when it all started.

Two great days after the operation I developed a P.E. One week after my discharged on warfarin I developed a DVT in my left leg.

Another week in hospital, discharged on warfarin.

Two weeks at home another DVT right leg discharged on warfarin

One month at home DVT left leg followed by Compartment Syndrome (due to a blood gas) and three months in hospitial. Discharged on warfarin.

Warfarin levels up and down hardly stable.

So between my Hematology Prof, Prof Hughes I was diagnosed with Lupus and Hughes Syndrome in 1999. Rheumatoid Arthritis by Beverly Hunt 2010

Since then I suffer and still do from Angina, Severe Asthma, Epilepsy, High Blood Pressure,High Cholesterol, Rheumatoid Arthritis, Depression and managed to have a Coronary embolism for good measure.

I am currently taking 28 tablets a day not including my 4 asthma pumps and clexene (since I am now warfarin resistance) and just for luck I am currently on

antibiotics and steroids as I am not well!!!!!!!!!!!!!!!!


8 Replies

Hello, you are having a tough time, and thank you for writing this for us all, you must be very tired currently. I know when I have had very bad flare ups of my various things, sleep can be awful, just when you need it most. It sounds like you have a lovely daughter. I am thankful to hear that you have had and do have some very good medical consultants involved in your care, and I do hope you feel a little better over the next few days. Mary F x


Hello and omg what an extensive medical history and thank you so much for sharing this. My daughter is 22 and i often ask her the same question we are often referred to mum and daughter from ab fab ;-) to give you an idea... she is so sensible and assertive me i sometimes sail close to the wind living with a condition like ours means i have taken health risk just out of sheer frustration being told i cant do something even as a child i would jump of from next doors garage roof spent many a day in casualty from injuries always climbing trees buildings i wish i was a stunt woman back then now i am so cautious but that little devil in me gets out occasionally esp if told i need to rest dont over do things i go for a long walk and think i get enough rest when im dead thank you ;-)

re sleep i definately can relate to what you describe and i am so grateful to my gp who trusted me to take zopliclone as a means of breaking that awful cycle we so often find ourselves in i take half a tablet that with my amytrytylline soft music allows me to drift into sleep which is deep and restorative - only taking as and when i really need to but it works to help get me through

hope you feel better soon kathy x


Hi hon

Welcome and glad you found us, oh my goodness, what an awful time you've had! :-( :-(

So many of us with similar painful stories to tell, you've come to a great place to share, ask and answer questions, just getting some support is so important to us all!

I understand too on the sleep issue, I often awake a lot of the night, then get angry with myself for falling asleep during the day or about 7pm when the children and I have had a bath!

I'm another who does things I shouldn't, blooming stubborn and won't give in!!

Trouble is when I do feel a bit better, I don't want to take it easy, I want to live a bit, there's the trade of though, suffer later and worn out for days!! I hope I'm learning, albeit slowly that, if I listen too my body and rest, maybe i'le get more of those better days! :-) :-)

I'm so glad you've had some excellent doctors over the years, I so wish I'de been to see Prof Winston when going through the infertility and miscarriages. They really are all the best in there field!

My two daughters one 29 and other 14 tell me off and giggle because they have to bend down to hug mum!! They are so bossy, but both amazing young women that I'm blessed to have in my life, my son who is 12 and has Autism is always asking "are you ok mum? Can I help?" bless him!!

We are here when you need us!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Hi Sorry to hear about your history I do sympathise about the sleep problem havung suffered from it myself. I was putting it down to stress and trauma as a result of awful treatment when zi was in hospital but I got a very good tip off from another Hughes patient that heparin can cause sleeplessness if it is taken later in the day. I changed to having my injections in the morning. And it made an enormous difference it really made sense when she said it because the times it was worst were when I had been on it previously. I am careful about coffee and I don't take it in the afternoon at now. I am glad you are on the treatment you have now it should give you much more protection all the best Ann


Have you tried a white noise machine? ( there's an ap for that too.). Its not a sure thing with me, but another arrow in the quiver. The longer I've used it the more effective it hs become.

I get the most horrid jet lag! I become not just tired and grouchy, but distrustful or downright paranoid! Sympathies. (the neurologist found a cyst encompassing my pineal gland. We attribute my massive jet lag problem to this.).

Give yourself time ( ha,ha -- sorry for the pun) and you'll slowly readjust to your time. But expect it to take several days -- @2 days every hour change going east; only 1day going west.


Good Morning GinaD,

Thanks for your reply.

With regards to the jet lag I returned from my month long Caribbean holiday on the 30th of May. It seems that it's going to take a month to get my sleep pattern back.

On another note I was sooooooooooooo well on holiday but since coming home have been sooooooooooooooooo unwell!!!!!!


Sorry. So sorry. Again, I know how horrid jet lag and sleep disruption can be. My daughter has quietly pointed out my obsessive preoccupation with sleep issues on trips. No more tent sleeping -- ground hurts my sciatica and other campers are too noisy ( not to mention the dawn chorus from the birds!). Gotta pay more $ for a clean, quiet hotel. Gotta block out all light (I i sometimes sleep with my eyes open and if i see something, ill wake up.) Gotta get tucked in at my usual,ridiculously early hour( I in bed now, winding down, with my white noise machine whooshing, the black out curtains drawn, and my hot milk with turmeric on my night stand --and it's only 8:45 local time! )

Hope your biorhythms get sorted out soon!


Can anyone throw some light on this - have APS and on Warfrin and Amatriptalin 20mg - had a very bad flare up of severe burning under the skin - like bad bouts of sunburn but under the skin if that makes any sense - also a lot of muscle pains - feel all across my forehead is sunburnt and my arms and legs in different parts. My Rumi put me on Plaquanel -200 mg twice a day and I am awaiting blood tests for Lupus -

Now I have had another flare up and my sking is really badly burning underneath - have had two really bad nights where this morning at 03.30 I sat out in the garden under an umbrella in the rain eating weatabix because that was all I could do, could not lie down because of the pain in my Lung - and the pain and burning seems to overide all the medication including the Amatriptalin and a very strong Sleeping Tablet - which is not working at all -

Dreat another night of this - so tired, and this burning of my skin is unbearable - is this normal for Lupus - can anyone shine some light on this - hope this does not seem like a moan - but I just dont understand.



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