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Sticky Blood-Hughes Syndrome Support
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APS and severe back pains

I've was diagnosed with APS about 8-9 years ago,I'm not bad enough to need Warfarin so instead I take a daily dose of Steroids, Aspirin, blood pressure meds etc.. For a while now I've been getting these really severe pains in my lower back, I've always atributed them to my years as a truck driver and lugging heavy stuff around. Lately however the've gotten a lot more frequent, they've gone from maybe one a week to two or three a day. I get them in the region of my kidneys (either side, never both at once). The pain comes on slowly but usually builds to a pain that's so severe it leaves me in tears, the odd thing is if I lie on my back on the floor and get in just the right position it litteray just switches off. My doctor has prescribed me some meds to try but after reading the long list of shocking side effects I'm not sure if I should take them, also he didnt actually explain to me what these pains actually are.

Secondly, in a bid to try and control my blood pressure my doctor has put me on Atenolol, I was ok on it at first with a 50 mg dose but he's now upped the dose to 100mg and I now feel constantly tired. I'm in my final year of a degree so I'm mega busy and with all these problems cropping up it's making me wonder if I'm well enough to continue with it this year.

8 Replies

Hi, sorry things are rough, firstly is your medical consultant full up to speed totally with Hughes Syndrome/APS, if you are in the states we can usually through other members or some lists point you in the right direction? Also you may need to try other drugs, another doctor fully updated with all manifestations of the disease may try a different approach beyond Aspirin. Are you having physiotherapy...for instance I had awful back pain, and still do, but not every day anymore, I do exercises to tone my stomach which has helped my back. I hope you feel better soon. If that pain goes on, it does need further investigation, it is not unusual to develop kidney stones, which can go undetected for a while and then become very painful. MaryF


Thanks Mary. I'm not currently seeing a specialist and haven't actually seen one in maybe 2-3 years now. I'm in the UK, my previous specialist who understood my condition fully left to pursue a different career path within the NHS. sadly her replacement was an Asian gentleman who barely spoke english and wanted to completely change all the meds I was on at my fist consultation with him. This really put me off so I decided it wasn't worth my time to go see him anymore, since then I've been self medicating on the same or similar meds. I did actually get refered to see Doctor Hughes at St Thomas's Medical centre in London a good few years back but they decided that unless there wahere further complications they didnt need to see me again.

Do you feel that the Physio has helped you?.. I'm not sure how much more of this pain I can stand, the pains in my back are terrible however I also get similar pains in my shoulders and collar bones.


I agree at times a language barrier can cause problems, however one of our family specialists is Asian and his help has been second to none with my children, I can't thank him enough really. You have become disillusioned with your care, and I can't stress highly enough how you need to go back to basics with it. This condition, Hughes Syndrome/APS can change over time. Please look at our list of specialists here on the charity website, and get yourself referred to one. If not take all your latest blood tests and self refer to London Bridge to see them. You probably need a multi pronged approach including some physio, a new drug appraisal with open mind from an expert with the whole picture and you certainly need a whole panel of bloods done, to include obviously Hughes Syndrome/APS, Lupus just in case, and also a full Thyroid panel, plus vit b, iron and D. You need to start again, and be correctly guided. It helps that you already have a diagnosis!

Physio can be added in also, but you need investigations.


If your GP needs convincing to re refer, then show them not just the list, but the entire charity website and stand the list of specialists out as a separate link. Doctors do not generally give out email addresses, but you can get hold of their secretary's addresses normally and then address to the GP.



Back problems can be caused by a whole issue of things that can or cannot be attributed to APS . If I where you however as a matter of course I would ask for that referral back to St Thomas anyway as it would seem that your meds would need a review.

From the fact that your pain can go from lying flat this may be positional and therefore indicata more local issue. An MRI should be done and you should push for this and not be palmed off with the cheaper option of more meds. Ask your GP what he's treating you for as if he has not scanned you how does he Know! Once again cost cutting comes to mind. I know you are busy but I think you are going to have to push to get the best for yourself now.



I agree with what is said above! You have got a diagnose.That is good and now you need an APS-specialist.

I had also very high bloodpressure before I started warfarin and got the right treatment. High blood pressure are sometimes connected with APS in some patients. It is important that you get it down and stable. Many APS-patients with neurological problems like dizziness, headache, bad concentration and memory need warfarin to function.

I wonder also if you have read "Sticky Blood Explained" by Kay Thackray. I have got it in pocket. There are very good books about APS available for sale on Hughes Syndrome Foundation charity website.

Good luck with your degree!

Best wishes from Kerstin in Stockholm


I too suffered from back pain (in my case it was in the lower back). I went to a surgeon, who prescribed a course of physical therapy (not surgery!). After about 2 months the pain went away completely and has not returned (I finished therapy approximately 2 years ago).


Back pain sounds familiar. I have had sciatic pain related to my bum hip. That pain ( gone now since I had my hip replacement) was helped by doing exercises and stretches. My therapist recommended the same one I found on UTube by searching for sciatic pain therapy.

Also I will get intense kidney pain if I do not drink enough water. Strange that for years my renal system has worked fine and dandy unless my water consumption dips a bit below normal. Again-- strange. But if I drink 16 ounces each at breakfast, lunch and dinner-- no kidney pain.

But does either of my back issues relate to your pain??? I hope you can become a patient of an official APS doc. Good luck, and let us know how it goes.


Hi, I had similar back pain five years ago. I was diagnosed with APS one and a half years ago with Sjorgren Syndrome and Hashimoto's Thyroiditis; but the most important issue was the diagnosis of the cause: Celiac disease.

Inmediatly I started a gluten free diet and complement with vitamin D, Folic Acid and B Complex. The back pain was triggered by malabsorption of nutrients, especially vitaminD and Calcium, both critical to strenght muscles and bones.

Is very important talk with your physician and discard this potential causes or similar.


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