Bluma

[Bluma]

It’s complete and utter exhaustion ever associated with APS? I don’t have a reason to be in touch with my Nuro all that often and he has given me something over the counter to take for the pain in my legs although we think it’s from my Statin. I don’t know who to ask questions of. I have this overwhelming tiredness that literally stops me from doing anything. I don’t sleep but I feel like I just need to rest and rest and rest more. Is it possible that this is related to the blood disorder?

[MaryF Administrator]

It would be best if you contacted your specialist(s) and your GP and got them to do some blood tests, to see what is going on with your Vitamin D level, B12, Folate, Ferritin and also you Thyroid, and be aware that unfortunately only the TSH is often the only test done for Thyroid, and many of us order our own out of desperation as a slow Thyroid or any Thyroid problem is readily missed. It is important to get to the bottom of it, I am sure they will also test your inflammation levels, also. All the things mentioned above, if not at the right levels, will cause bad fatigue.

the-rheumatologist.org/arti...

MaryF

[Mermaidatheart]

Something to ask about would be possible side effects of statin. My husband took these for a small amount of time. He did not tolerate them well, pain in his legs took a long time to fade away. On the other hand, I took them for a small time, tolerated them well.

[Melindee]

I too had this kind of exhaustion, such that I was afraid to drive. It was attributed to my fibromyalgia. I was Rx’d Hydroxychloroquine at 200 mg twice a day and after a few months there was a noticeable improvement.

I am triple negative on antibodies, but no clots yet (fingers crossed!).

[Lure2 in reply to Melindee]

Hi,

Are you sure you have Antiphospholipidsyndrome as your antibodies all three are negative and you have had no clots. What symptoms did you have that made your Specialist give you a diganose of APS?

[Melindee in reply to Lure2]

I wasn’t diagnosed with APS, just the antibodies thus far. Also I am only on aspirin no other blood thinners. I see the Hemotologist 2 times a year to follow blood levels. It is the fibromyalgia that is so fatiguing, for me at least.

[MLNC]

Welcome to my world. Hydroxychloroquine helps me, but is not a cure. I am triple positive but apart from that all my blood tests are normal. I cope by having a set sleep routine, very strict diet of no dairy or gluten, which helps me, and am exceptionally careful to never over do it. I still have good and bad days. But more good than bad when I do what works for me. My advice is try out different regimes and find what works for you. And know you are not alone.

[KellyInTexas Administrator]

I read from your previous posts that :

1. You have asked this exact question before and we’re told quite correctly it’s very common with APS . ( we are happy to answer again- no problem!)

It is important that you make sure your doctor answer the question specifically for you- to make sure nothing else ids being missed that could contribute in addition to APS.

2. You mention you don’t know who else to ask these questions of, however in your previous post you mention that you are seen at Cornell’s ( Weil) medical school.

I’m not sure, but I assume you mean HSS - the hospital for special Surgery. That’s associated with Weil. I’ve been a patient there as well, and I’m sure you know it’s very well reputed for it’s rheumatology department’s expertise in APS. That’s where you should feel comfortable addressing any concerns or questions .

If you are not comfortable there, the university of Michigan has an excellent rheumatology department that ids APS Research and treatment focused .

[Wittycjt in reply to KellyInTexas]

👍university of Michigan and my-man Dr Jason Knight, not my doctor, but my hero!

[KellyInTexas Administrator in reply to Wittycjt]

I called their Dept about a year ago and was in touch with them about a study-they were very interested. - and then my sister died- funeral- house fire- then Covid. I never followed through. It’s on me...