Anyone else sick of feeling horrible? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anyone else sick of feeling horrible?

BobbieAnne profile image
10 Replies

I feel constantly drained. Bad back for three weeks (doc gave me exercises to do without even an examination). On the 5th week of menstruation. Had shooting pains in my head and dizziness all day but no luck getting in docs. Just all a bit much at the mo. :-(

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BobbieAnne profile image
BobbieAnne
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10 Replies
tassie profile image
tassie

Hugs Bobbie Anne ...it can be very draining feeling not well all the time.

daisyd profile image
daisyd

You must make an appointment with your Gp today, don't take no for an answer. Phone early, 5th week of menstruation, have you been bleeding all that time,?

What medication are you on

Hope you get on ok, good luck

Yes please read my post, "Drained".

Jillymo profile image
Jillymo

It is no wonder you are drained after 5 weeks of bleeding, he should have checked you for anemia.

Make another appointment, try & see some one else if possible.

We feel horrid enough without five weeks of the curse, you poor little chick have a hug hun.

It is stupid to tell you to excercise without an examination, drs just dont seem to dr anymore.

BobbieAnne profile image
BobbieAnne

Been to GP this morning who said stop worrying, headaches present themselves in different ways. Told me to carry on with back exercises. I had a coil fitted to try control heavy periods as I am on warfarin, hence the five weeks! They are not concerned with anaemia. Also not concerned with my 38 temp, infanct I believe they are not concerned about anything and believe lack of knowledge re APS plays a part. Made me feel that I am over stressing about the APS... Despite me having had PEs and TIA. Maybe I am over worrying but feel a complete lack of support :-( people on here seem to have a varying degree if support. I know it's relatively 'new' with little known but given its supposedly quite common I feel it should be put out there more in the medical field. It's reassuring to know people are experiencing the same and its not all in my head as I am being made to feel but wish we could get more support. Don't see haematologist til feb!!

daisyd profile image
daisyd

Gosh I think I would change Doctors. You could try and explain to the Haematologist secretary and hopefully it will be passed on and she will/he will phone you back

Headaches can be caused by having a high temperature ? Do you know where the infection might be coming from, urine infection, chest infection etc

I would be tempted to see the after hours doctor, say you feel worse, not the correct way but hopefully you will get to see another Doctor

Good luck

What is your inr?

GinaD profile image
GinaD

Ditto. Bleeding for 5 weeks but not concerned about anemia? Did they draw blood and check your Red blood cell numbers? Or just guessing?

BobbieAnne profile image
BobbieAnne

Just guessing! I may try calling the secretary. My last INR a couple of weeks ago was perfect at 2.5 so they put me to monthly checks. I was wondering if I had an infection related to the fitting of the coil (may account for back pain too) but again was told unlikely with no offer of tests. I tested my urine at work but that was clear... Guess I will just have to wait to see if I become septic!! :-/

tassie profile image
tassie

Yes go see another Dr for the temp at least and get them to run tests. I had a Mirena fitted 5 years ago and I bled for probably the first 9 months and had constant pain and felt wretched and then it settled and was no problem.

BobbieAnne profile image
BobbieAnne

Wow 9 months is a long time but when it lasts five years I guess its worth a few months of unpleasantness!

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