Hi I have APS but for the last 2 weeks both my hips are in pian iv got a bursrei can not spell on my left hip but both my knees and ankles and both hands and bad head are in pain all the time can not sleep but not been able to sleep for a long time now I feel ok in my self just the pain and not been able to get comfortable at all don't know wot it is I am going to see the doctor next Friday to see if he can tell me or do any think my husband say I wish I can do something for you I sed yes give me a new body don't know if any one elis suffers from this I know we all get joint pain I am having physio but she not been for a bit she coming back to my home on the 21st I have a frozen shoulder too so can only lie on my back in bed the pain relief I am on are not helping I am on gabapentin parcetmols and morphine patches but not helping my hip or knees and ankles it's driving me mad thanks for listening to me go on x happy Easter

28 Replies

  • Hi Lesley.

    Who is managing your APS?

    I had a frozen shoulder once and also a clot in my right hip that was very painful and caused all manner of problems. I benefited from having an MRI to see what was going on.


  • Lesley what are you taking for your APS? Are you on any anticoagulation - if so what is it? If you can answer those questions I can more fully give you better advise.

  • Hi yes I am on warfin for my APS xx

  • Hi Lesley, thank you for confirming that. The first thing is to make sure that your INR is in range, if that has fallen that could explain why you have more headaches. Perhaps it needs to be higher or you could ask to trial Heparin or add an anti platelet such as clopidogrel. Also if you are not already on it ask to trial Plaquenil.

    You have also said you have a Bursitis and it sounds like this has flared up, it is not unusual to have this in hips, shoulders, elbows and knees. I quite often find that when one area flares up then the other flares up too. My Doctor gives me and emergency supply of low dose steroids to take in a reducing dose over a 10 day period which seems to hit it on the head. He even says to take it for just a few days until the pain has reduced if I want because he knows that pain killers are such an issue when you are on Heparin.

    I do hope that you can work something out with your APS specialist, this is why getting a good team around you is so important. if you are really worried about anything in the meantime or the pain is different than normal, always seek medical advice.

  • Hi thanks I can not take clopidogrel I was on them then came off them then back on them I had a bad reaction to them so doctors took me off them was so glad too and the will not let my INR go up I asked them and iv not got a specialist just a mixed lot of remo that don't seem to be bothered only one iv seen that was good now she off having a baby so last one I sed I will see you in a year then come and have all the blood test done a month befour and if your test are clear I will discharge you some help she was x

  • You mentioned your hip pain and I immediately recalled the pain in both hips from a few years ago and again last year that started that way.We all have joint pain and live with pain every day so I just tried to ignore it until my right foot turned purple in color, 1st the toes started, one toe in particular on the pad had what appeared to be a bruise, it wasn't but a couple days later that toe and the next 1 was completly purple. I went to the DRs. he sent me right to the ER. After an mri and a ct scan they said I had a blood clot in my lower Aorta at the Bifircation that was blocking the blood flow to my lower extremities. I had the repair done that day and they had to also put in 2 stents because they needed to disect the blood clot out of the artery. This same thing happened last year, I am now in a different state and went to the drs as soon as it started, I have become used to how my body acts and things that are new, they wouldn't believe me at the drs said I had the Gout and sent me home with a gout medication. My husband took me to a large city hospital where they found that yes I had another blood clot at the bifircation again. So..another round of surgery. I am doing excellent with this right now but I do worry and if any other new symptoms appear I get seen right away. With APS, we never know where a clot might form. If this hip pain is different from your usual pain, please do not hesitate and get seen right away.. The docs said had I waited much longer I would have lost the right foot and leg. Good luck I hope you get some answers and some relief.

  • Thanks for that my hip is about same it's my other hurts too now but my knees and ankles has never hurt so much my hands do cox some days I can not use them good luck hope you be ok and thanks xx

  • Hi, you probably need somebody to look in detail at your whole picture, and that will more than likely involve and MRI, please take your husband along to the next appointment to stress just how uncomfortable you are, ie lack of sleep, mobility etc, so something can be done to try and make you more comfortable. MaryF

  • He all ways comes with me but he can not get off work this time he's coming on Wednesday to see Nero with me at my hospital so going to see if they have any thy to say cos when I whent in hospital in December they was think I'd had author stroke all sings of one I lost the use of my left leg they keepet my in for a week then was house bound iv got it back now they sed they would do test but iv had nothink done at all so I don't know won't happ too so will see if I get any answers on weds x

  • Neuro's are not normally that helpful for people who have APS. I strongly suggest that you ask your GP to refer you to one of our recommended specialists on the Hughes Syndrome website so that they can look at your complete history. If your INR is not high enough and not stable enough then you do have a risk of another stroke which is why its very important to be under someone who can understand your whole picture and not be treating just their little bit.

  • So I would need to ask my doctor to send me to see a specialists in Hughes syndrome when I go to see him x

  • Absolutely!

  • Yes. Please look at in your area

    Ask your doctor to be referred to one of those doctors.

    APsnotFab knows this illness very well and what to do in your situation.

    I live in Sweden but I already have an APS-Specialist here and I am on warfarin with an INR of 3.2 - 3.8. We need to be that high to get some real help out of the warfarin as the main thing is to get our blood thinned as it is too thick.

    I agree with APsnotFab that the Neuros do not "get" this illness. They have not helped me at all. On the contrary.

    Best of luck from Kerstin

  • Hi lure2 that page comes up with page not found xx

  • Hi Lesley61,

    Then look at " Specialists in your area"


  • Hi Lesley61,

    As I am not sure you have found that important info I do it again.

    After that you push the bottom for "specialists in your area".

    "self" = selfhelp

    Please tell me that you have found it.

    Kerstin in Stockholm

  • Hi been to hospital yesterday they sed they was some more white lessons in my head told him about all the pain I was in he sed that's part of my confusion he dose not won't to chage my meds cos warfin all I can take and the pain relief is all I can have too I was waiting for him to discage me but he sed we will keep seeing you come back in six weeks so been to my doctors to day told him about all the pain I was in and that I had seen the Nero yesterday he sed wot did he say so I told him he sed iv been looking at notes from the hospital I sed glad you can make sense of them he sed he was consered about the one remo sent him I sed she did not talk to me then she put in the notes that I was doing well I sed people just look at you at you and think u are ok on the out side but don't know wots going on inside he sed no they don't and he sed u got a lot going on I sed I was going to aske you to send me to see a specialist in APS they know wots going the others don't he sed yes he's going to send me to leed to see one then you will not be going to see 3 specialist just one it that ok with me I sed yes as long as they know wot to do the doctor up my gabapentin to 300 4x a day he sed he could chage them or my patcher he sed just let me know how you go on with them cos wot I am on are not helping my pain x

  • Hi Lesley.

    I understand that you have been referred to a Specialist-doctor of APS in Leed (?).

    I am so sorry that you have got so much pain lately. Hope it will be better very soon.

    Best wishes to you from Kerstin in Stockholm

  • Thanks me too well I hope it is a APS one he sed one so you don't have to see 3 You can just see one and they may be able to get you sorted cos he can not believe that my remo was going to let me have all my bloods done a month before I whent to see her witch is a year to go see her if they came back clear she was going to discharge me he sed you got so much going on how can she do that I sed she never asked me anything whent I when so she did not care will let you know when I get to go see them x

  • Call the clinic and ask what doctor you will be remitted to. It should be an APS-doctor as you say yourself and in your area if possible. You have our list of the English Specialists to refer to.

    Best of luck from Kerstin in Stockholm

  • I am now having a operation on my frozen shoulder and having operations on both my hands had one done then going to get my other done same time as my shoulder on the 20th October not looking forward to it but got to give it a go x

  • Hi Lesley,

    I know that 6 months ago also Mary and APsnoFab suggested that you should have a referal to an APS-doctor who could look in detail at your whole Picture.

    You also spoke of an APS-doctor in Leed (?) Was it a Specialist? You really need such a doctor for your complete history.

    You have started 2 pain drugs together with a raise of your INR to 3.5 (in a trial for 6 months). Correct me if i am wrong.

    I have a strong feeling that you should have this APS-Specialist Before any operations now. You also see a Neurologist and they are not the best to understand APS. Have they tested you for Lupus and Thyroid-issues and Sjögrens?

    I just want to help you but I understand that I worry you also.

    Best to you from Kerstin in Stockholm

  • He was a specialist he retired so looking for anther one yes my INR is up to 3.5 now iv just had one operation on my left hand and I am having 2 my operations on my frozen shoulder left and my right hand at same time on 20th of this month think iv been tested for lupus not sure about thyroid issues or Jorgensen xx

  • Have got got an appointment with the Specialist in Leed as your Dr at the hospital promised to refer you to? He said it was better to have one Specialist than 3 Doctors knowing nothing of APS.


  • It was my own GP no iv just told him last week that he need to look again as he had know look with Leeds they was not getting back to him so put my foot down and sed I need thinks sorting out this time x

  • Hi Lesley,

    Sounds good indeed!

    Hope he refers you to one of the APS-Specialists on HSF:s list who are said to know about APS in your country.

    Best wishes to you again from Kerstin

  • I give him the list fromHSF and told him to try agin and I only wont a specialist not just some one that know a bit about it xx will let you know how I get on x

  • Hi Lesley,

    Yes please do. Thanks.

    I wish you Good Luck!!


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