Log in
Sticky Blood-Hughes Syndrome Support
8,548 members8,683 posts

What might this be?

Have been to GP yesterday and walk in center today, but just not sure that what I have been told is correct, in fact with the walk in I know for certain that they were wrong.

Wonder what you guys think

So, in order to explain I will need to divulge some intimate info as I feel that it is relevant

Here goes

Last Friday during sex I developed a really bad pain at the back of my head, behind my right ear

On Sunday has sex again and the pain that time was excruciating

Monday morning woke with the same pain only far milder

Had it on and off all week, and once it radiated upwards to my ear and I had a bit of earache with it

Friday saw GP who said it would either be my neck, so gave me muscle relaxants, or my ear

She looked in my ear and said that there was no sign of infection, but as my lymph nodes were swollen she would treat the ear, and prescribed a spray

That night before bed I noticed that the inside of my elbows were massively swollen

In the morning when I woke the swelling had gone down, so I thought no more of it

In the afternoon I noticed that both inside elbows were red and inflamed so decided to go to the walk in center

By the time I was bathed, dressed and on the bus they were going down and whilst waiting at the walk in the redness disappeared and the inflammation was not as visible though there was a little there (enough to feel)

I described what had happened to the Dr but she kept saying that I had had a "rash" and I told her that I had not had any rash, I had had inflammation

She said that I couldnt have as it would not have gone down so quick and it must have been a rash

She wouldnt even feel my elbows were there was still some inflammation but by then no redness

she said I had had an allergic reaction to stinging nettles

I told her that I had definitely not come into contact with any nettles, having been indoors a lot (been very sleepy all week) and only been to shop and Dr

She then said well it must be either washing powder or shampoo and gave me antihistamines

I have used the same washing powder or actually liquid and the same shampoo for years

I now have slight earache both ears, sore throat, feel generally fluey, light headed,still got the pain in my head off and on,seem to be getting like nerve pain one side of face, and inside of elbows still very tender to the touch, though only a little bit inflamed now

Sorry for such a long post, only just sort of feel that I am quite poorly(you know when you just "know"

and really dont buy the allergic reaction thing

18 Replies

Hi there, sorry things are rough, A GP in a walk in centre, unless they have a particular interest in rheumatology or have come across something similar in another

patient, will not have the working knowledge to give anything other than basic advice based on the normal remit of things that pass through a walk in centre. You sound to me as if you are having some sort of flare either triggered by infection or virus. It is tricky being the week-end, but on Monday, providing you do not get worse up until then, you need to be on the phone urgently to your rheumatologist as you need blood tests and some detailed note taking done. Let us know how you get on. Write all the symptoms down so you don't forget the order of what happened, and if anything swells up or goes red again, photograph it!

Also of course you need to make sure that you do not have a clot somewhere in your system! MaryF


Hello Donna

Starting way back in 1989 I had similar pain in the back of my head, during orgasm, that then spread round to the front of my head too and was similar to migraines that I had. I had not been diagnosed with APS at that time but and I obtained some relief from the problem happening by having cranial osteopathy.

However, when I was diagnosed with APS and put on Warfarin these incidents ceased completely and I have never had another one. From talking to consultants it seems to be a problem with blood supply in us APS patients as we approach orgasm. It happens only seconds before orgasm, so there is no chance of avoiding the sense of cramping in the back of the neck and head and intense neurological, migraine like pain.

Best wishes.



Who knew? Thanks for sharing. I'll file this it of sex Ed away and hope I never have to refer to it.

Makes sense, but who knew?


Elbows..are you sure it's not a bleed?


My "tell" that my INR is too thick is a pins and needles at the back of my head when sleeping. This is more likely to happen if my pillows are not arranged just do. Also, another tell is my hands go numb much faster when cycling and I must spend a lot of time shaking or raising and lowering one arm or another on long bike trips. Not convenient when I'm biking around cars as the motorists think I'm trying to tell them something.

Probably not relavant to your post, but thought I'd share as I noted your 2prominent symptom points are the same as my 2most prominent " tells."

Do see a rheumatologist ASAP. Good luck.


Gina. I do a lot of cycling and even with padded mits I can get numb hands on some roads.



and this link: en.wikipedia.org/wiki/Coita...


ps thank you 'In Spain'

1 like

Thanks Mary

I would be interested to know if everyone who gets this problem also has APS.

Dave x


Yes, this may end up being a thread with many replies! MaryFx


I guess with me this tell is a question of time. I expected the numbness to hit Friday, which it did, after 45 minutes on the Hock Hocking Adena bike path. But when the numbness hits after 10 minutes that's a sign I'm too thick.


thank you for the replys which I didnt read till very late as after spending the majority of the day lying on the settee in pain I took myself off to A&E where once again the person treating me had never heard of APS.

After waiting hours they sent me home saying to make an urgent appt for my GP in the morning,so I have gone full circle!

As for phoning my reumy, if only!

He discharged me at the beginning of the year, and as I felt I had unanswered questions I emailed his secretary who I spoke to on the phone a couple of times were she said she would pass on my query

A couple of months later I saw my GP who siad she wanted to refer me back but noticed I had only just been discharged so she wrote saying could he either see me again, or if not could he phone me to discuss things

He wrote saying he would arrange for the nurse to ring me,,,this letter was dated 22nd may and so far no call,, although I have chased it three times,hence my decision to go private.


omega, could you elaborate please,what do you mean by "bleed"


So, I am now booked to see Prof Khamashta privately, end Aug.

No joy at the gp this morning

slept all afternoon

still got the pain in my head

trying to decide whether to go back to A&E or wait it out for my appt

if anyone else can explain what the bleed that omega was referring to would be I would be grateful as I swing between two minds at the mo

didnt sleep last night worrying, but have also hit the wall exhaustion wise and hours in A&E again not a welcome prospect

partner lives 200 miles away so when I trot off to A&E I am leaving teen to own devices,house a tip


Hi There! I dont know if this will help but what you describe is exactly what I get when I have a flare. I have described this to Prof Khamashta and Hughes and they have given me a prescription (or told my GP to give me one) for a very small amount of tapering steroids which I take for 1 week as soon as I get the first signs. This does not get rid of it but it normally can reduce the flare from what can turn nasty an long (weeks) to a couple of weeks if Im lucky.

The elbows can be bursitis so if you can tolerate any antiinflamatories and you are not on warfarin that would be something to ask about.

The head pain and into the ears etc sounds identical although its not triggered by anything in particular with me. You need to check that you are not getting any chondrisis in the ears. If you are then you must insist on a re-referral to St Thomas.

I hope that is reassuring but if you are still worried do go to A&E. Oh and take photos when the elbows are swollen so you can show a Doctor by the time they go down - then at least they dont look at you as if you are mad!


thank you for that


hi donnabrain

I have a book called "Headache" by Dr Neil Raskin of University of California San Francisco. Dr Raskin has been researching headache at UCSF for over 40 years and manages a headache clinic there. Full disclosure- he is also my neurologist and successfully treats me for cluster headache. His book is used as a textbook in many medical schools.

In his book Dr Raskin describes a type of headache he calls 'coital headache.' He describes it as "sudden, excruciating, throbbing headache, occurring just before or at orgasm." He calls this a 'benign' headache, and describes the pain as 'explosive.' He states that the headache may linger as long as 48 hours, and that some patients report that the headache can be avoided if the neck is kept lower than the body during sex. According to the book Dr Raskin treats this type of headache with Propranolol or Indomethacin although it doesn't help everybody. These medicines are also used for migraine and the book suggests that there might be a connection.

The book also discusses vascular and circulation problems as a possible cause. So maybe this is why APS people are experiencing this?

The book also states that patients who come to Dr Raskin with this type of headache are screened by angiogram to rule out aneurysm as a cause of the pain.


thank you,it lasted eleven days in total (the headache)


Just a quick update,

the swellings on the inside of my elbows turned out to be cellulitis,

it really stings!

Have got some "special" antibiotics,so am hopefull that they will go down soon.


You may also like...