Sticky Blood-Hughes Syndrome Support
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INR and pain

Hi all, I've been off sick from work for 3 weeks now, because of golfers elbow on the right and now tennis elbow on the left. I saw my GP back in December and asked for physio, eventually started lasty Saturday.

My main problems been INR up and down all over the place, today 6.1 from 4.4 on wednesday. I've not been stable since beginning of March.

I asked GP for referal to rheumatology 2 months ago and he said no, not at present, pain due to muscles. Saw him today as now have had 2 episodes of vomitting and headaches. He started me on tramadol and suddenly wants to see me back on Monday or Tuesday, as thinks vomitting is due to pain. Now my shoulders have gone into spasm as well.

Why do people not listen to us, we know our bodies and how we feel.

Sorry to rant, just want to get back to normal (lol) and back to work.

10 Replies

Hi there

I am so sorry that your Doctor refused you a appointment for you to see a Rheumatologist It's just not good enough is it I had tennis elbow in both arms at the same time I was picking up my baby grandson have you seen these splints you can get for T elbow they are about £5 each they worked fantastic for me it even stopped my pain when I was desperate to see a rheumy I went private it was expensive but for him to tell me I was really ill was worth all the money and then I was seen at the N.H.S a few months later and he knew who I was I did not jump any Q I waited like everyone else I paid private for peace of mind that I was not going MAD good luck sweetie xxx


physio recommended splints for elbows, but £20 each, have got them, am waiting for my husbands friend to give me back my tens machine so i can use it as suggested by physio. Tramadol has kicked in now so feel a little better. Physio at 12 today will see what he says as doing exercises he has given me have made elbow more painful and sensitive. Take care xx



Sorry to hear you've been refused by your gp to see a rhumy, I have to say tho' I have too!!

I suppose I can understand if he thinks your pain is down to the muscles & not the bone tho'?

Maybe see if it starts to improve & if not persist in seeing one just to be on the safe side.

My elbows have been very painful too & I asked my doc' if it was tennis elbow? he did a few tests & confirmed it wasn't, but then when I asked if I could see a rhumy in our local hospital he said he didn't want to do that as I need to wait till I see the specialist when I next come to London!

So looks like I'll have to wait till June then!

Be careful with Tramadol as they them selves will make you dizzy & sicky, I have them but try not too if I can help it & not have them for any more than 3 I start to hallucinate!!

Hope you feel better soon Sue xx


Sometimes these drs need a good talking to! I so wish they would listen to us!

Big hugs to you ...enduring constant pain is so hard to take!

Do you have access to an osteopath? They can often work wonders with all sorts of pain. Definitely worth a try.


Itried one before, will see how physio goes now i have it, thanks x


I prefer an osteopath to a physio so if the physio doesn't work out maybe an osteopath might be an option


Hi, All.

my daughter has constant pain, is on slow release Tramadol (morning and Night) in an attempt to try and regulate it's effects.

On this, I wonder why (when you read the list of symptoms associated with Hughes Syndrome) pain is NOT one of the things listed.

After reading many of the posts here (and elsewhere ) it is one of the more common threads, but not included in "recognised" symptom lists.

Why is this?

Have the Medical profession not found this, or is it that they consider pain as not being a symptom of this Syndrome?

Sorry, just some of the questions raised by this post, I guess.


Wayne L


Wayne it is very common to have pain. I asked the same question as to why the only website I can find that mentions pain is this one and the answer appears to be it a new disease and the other websites are not aware of what Hughes really is. If your lucky she will find a doctor that know pain especially back and joint pain is a part of Hughes. I suffered severe pain for sometime before I went to my neurologist and he was familiar with it. He has been god sent he gave me back my life I am on the fentanyl patch for 24/7 relief and nucynta for break through pain. So my advice is scream from the roof tops that Hughes has way more symptoms than ppl think! Good luck to you and your daughter.


hi guys i had tennis elbow for several months last year - very painful at times as would wake me from my sleep this was when they said i had fibro - on reading here i am now thinking is it due to the APS? also to add to pain, fatigue seems to be another symptom not recognised or written about.. due to my first rheumy app and her saying APS dont cause fatigue she dx me with fibromyalgia i was then poorly managed as my APS was ignored - now ive had multiple TIA's really fed up today so tired all the time and always in pain it seems ;-) xx


Thanks to you both.

It appears to me (I'm only observing this in my daughter) that she has constant but varying amounts of pain, dependant largely on the amount of sleep she's had.

On the days that she has small [3hrs or less] sleep her pain is acute and requires more analgesics to relieve.

On the days when she has more sleep [or a couple of hours in the afternoon as well ], she appears to be better than normal and needs less medication.

Could be i'm missing something, but I don't think so.

Any thoughts would be welcome.

Wayne L


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