Sticky Blood-Hughes Syndrome Support

Help needed

Hi All can any one help?? Ive just been to the because of severe hurting joints in feet ankles, wrist elbows and swelling of joints in hands. The GP has said lets go down the easy road first and has referred me to a physio. She says my muscles need building. It isnt my muscles its my joints. Am I going on a false errand to the physio?? What do you think. Joints hurting dont want to have someone working them more than necessary. I would have thought an xray would have been the first port of call.

Dont want to waste any ones time and cost the NHS more than necessary.

Manyu thanks all. Diane

11 Replies

Hi certainly make sure you follow this up with the GP, physio may well help, did they do any blood tests? MaryF


I wonder if you had Contact two months ago with that Rheumatologist (Mary advised you ) and what happened with that appointment?

I have understood you have both Lupus and APS? Have you had an diagnose of APS yet?

I can only answer as I Always do: get an APS-Specialist who has the responsibility and who you can see if you must. I live in Stockholm and we have other rules perhaps but the most important thing is to have a diagnose and a Specialist (there are not many and it may be very difficult to find them but that is the only way to feel good again).

Kerstin in Stockholm

1 like

Many thanks for both your replies. I was diagnosed with APS and SLE 18 months ago and my consultant is one of the ones on the list. He is great.

The dr has done other blood tests and said if anything nasty turned up she would contact me. They are sorry I have both APS and SLE.

I just feel that it isnt my muscles hurting its my joints and she said that she wanted my muscles built up. I just dont want to put any more strain on my joints.

Regards Diane


Just to let you know that building up the muscles is a good idea because it takes the strain off the joints. As well as APS I have artritis of the hands and feet. Physio is a great idea.... go for it, but remember to practise the exercises for maximum effect. Also, you can take a leaflet and tell your physio about APS. Another way of helping awareness and help them help others. i always do that. I was a physio, so know about these things.

Blessings Ann


Many thanks. Has helped me a great deal. I'm going next Friday and we will ee how i get on will let you all know.




my EX orthopedist wanted to replace my left hip 20 years ago. If I had done that then my artificial hip would be worn out by now and second replacements never work very well. My therapist's suggested exercises allowed me to postpone that replacement until 2013. So now, instead of a maxed out joint causing me to give up hiking at age 60' I now can look forward to trails, views, flowers and spectacular autumn foliage far from the Madding crowd at least up to age 80.

Needless to add, I'm a big fan of physical therapy.

And by the way, as an encouraging note to newbies – not bragging. Just encouragement. It is currently 6 AM local time. I hiked 5 miles yesterday on top of the gorgeous Rich Mountain in my home state of West Virginia. Spent the night at a quaint and very lovely bed and breakfast called the Beekeeper Inn. Slept with the windows open so I can hear the busy babbling Creek which runs through the village. looking forward to the delicious breakfast and my 2nd cup of strong tea and another day of hiking. If you get a good doctor and the right therapy life can continue in a great way. Not always I know, but for me as for many of us, the road to diagnosis is the hardest part. Once diagnosed and treated there may still be ups and downs, but life can get a lot better. A friend of mine with no diagnosed chronic diseases says that even though I have APS, because I'm so careful with my diet, my weight and my exercises that I'm going to outlive her.


Hi Gina,

I believe your friend! I agree with you about those 3 things!

Perhaps add also properly anticoagulated and in range with your INR all the time, if you are on warfarin.

My youngest daughter said to my last week that she thinks I will be 100

(71 at present).



Awesome, good for you Gina!


Many thanks for your wonderful reply. Im almost looking forward to the physio on Friday now. Will let you all know how I got on. Regards Diane


physio such a waste of time sorry


That was my first thought. Aah well. I go tomorrow. Let you all know how I got on. Regards Diane


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