Lurker with questions about feet

Hello everyone,

I have been lurking and reading for quite some time and I have most of my questions answered just by doing so so I thank you all very much.This is a great place to get information.

This will be a long read so please bare with me.My name is Jeff and today I am a 46 year old male. I had an aneurysm 11 years ago that was discovered by getting my ribs broken and led to getting my aortic valve being replaced. I was blessed in that respect! I went with an animal valve so I was put on 325mg aspirin every day. I was since diagnosed with chronic fatigue/ME due to lack of energy, feeling miserable 3-4 days a week and some kind of double gene mutation.

Six years ago (age 40) I began having very strange " feelings/experiences", much like deja vu but the opposite. I also began to have a cramp in my left calf about the same time. I walked around with that for about 6 months until I was told I had a 100 percent arterial blockage in my left leg. I got that repaired and my leg had already started building collateral so all was good. I then had a spleen spontaneously rupture, another arterial clot in my left leg and two arterial clots in my right as well, and two grand mall seizures (I was not epileptic until then). I learned that the little feelings I had been having were "mini siezures and that I also have stroke damage.

After the second clot and seizures, (and multiple blood test) I was diagnosed with APS. I am now on aspirin 81, wafarin and effient (a platelet slicker), just to keep from clotting.

In august of this year I began having excruciating pain in my left foot that only hurt when I put weight on the foot. I went to the GP since it seemed unrelated to APS or chronic fatigue and was told I had gout, and was promptly put on allipurinol for that. The pain came back yesterday so I went back to see about getting the dosage increased or something else. The Dr told me that it was not gout at this time and that she has no idea what it could be so I'm to have an x-ray today. I can't imagine it being broken because there is no swelling to speak of but the pain feels like a break. It throbs when still and can't bear any weight. I just learned that due to the arterial clots I have CVI (Chronic vein insufficiency) and that the valves in my leg veins are regurgitating some of the blood pumped and this could be the cause of the everyday pain in my legs. I'm wondering if anyone else has had this problem or if it's just joint pain or something like that.

I'm baffled at what this could be.



11 Replies

  • Hi, I am glad you are bring thoroughly looked into, and one more point, it is not unusual to have a marching fracture in the feet, Professor Hughes writes about them regularly, and they are not always that clear when they first come along, MaryF

  • Hi

    I second everything that my colleague Mary has said.


  • Thank you both very much. i just got my results and they showed no fractures but after reading about the marching fractures, I'm not sure I believe it. I'll have to see what I can figure out about getting further tests as this is beginning to happen too frequently.

    Getting a doctor to understand all this is almost as difficult as having it.

    Thanks again for all you both do on the board!


  • Do keep an eye on vit D, iron and b levels! Also stress fractures can sometimes be missed with conventional xray, good to rule them out. MaryF

  • I'm going to ask for a deeper scan or something and will definitely check out the vitamin D.


  • Aps sufferers are prone to spontaneous metatarsal fractures I think it must be the poor blood flow. I also have very painful feet and dreadful aching legs. No fractures but no explanation for what it may be either. The leg pain turned out to be vitamin D deficiency.

  • That's exactly what my GP said. "I have no explanation for it." Sorry you have the pain yourself but it is nice to know I'm not just imagining it!

  • One of the first things I would recommend is that you are referred ASAP to a APS specialist. Im surprised with the number of closts that you have already had that they are treating you with Aspirin. I would have expected you to have been put on warfarin by now.

    Secondly, Placquenil for your fatigue is a standard treatment for APS and this should have been prescribed by now as Im sure this is more than likely more the cause of your chronic fatigue than ME. I concur with the Vit D above. You should be tested and should be high in the range. Also thyroid too and please ask for the results and post them here with the reference ranges. You need them to test your FT3 and FT4 too not just your TSH which is a pretty pointless exercise to be honest.

    I would also ask for B12 and make sure that is high in the range.

    We can be prone to "Pooling" which is when the blood in our legs does not flow back up properly. This will happen when we stand still or even when laying. You should try lifting the end of the bed a little so that your feet are higher than your heart when laying down. Drink water before getting up and out of bed, wear support socks/stockings. Raise your feet up when sitting. Hopefully all these things will help with pooling.

    Let us know how you are getting on.

  • Hello,

    I am on wafarin as well as aspirin and effient. My last two clots were while I was medicated on just the aspirin and wafarin so the effient was added. So far so good in that respect. They wont let me get ablove 3.0 on my INR even though I have told them I feel better when its above three. I do self test and mine bounces around all over the place.

    I did just find out that the blood was pooling and that was what was causing some of my problems. My hands and feet both tingle/ache when in bed or seated so I'm grateful for the tips! I'll try most anything at this point. I'll see if can get the results and post them here. This site has been the most help in understanding this disease that I have found. I just wish I was in England where most of the knowledgeable doctors seem to be.

    I have never been tested for thyroid issues but I know that my several in my immediate family have had them so I'll check into that and I'll also look into the vitamins.



  • Hi Jeff - Prof Hughes says that this disease often has autoimmune Thyroid and Sjogrens as a trio so please ask your Dr to do the thyroid antibodies (both) as well as the two tests I suggested and ask for the results. If others in your family have thyroid disease then you already have a susceptibility and the first question I was asked by my Endo was "who in your family has thyroid Disease"? Know however that tests can come back in the "normal" range but not be normal for you! Thats why Id like to see your results.

    As I say best advise get an APS specialist first and then if need be a good thyroid Dr.

  • Hi Jeff I have been having very bad pain in both my calves couldn't hardly walk due to pain would get worse or standing made it gp put me on muscle relaxers feels bit better but I would like to know what's causing it . I will mention to heamatologist I see him in begging of december

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