Unfortunately I’m paying the price for taking advantage of feeling so good the last 6 months.
This will now be my 2nd official flare with APS . Once again I have extreme muscle fatigue , my right leg feels like cement when I walk and blurred vision to name a few. I have upped my supplements and currently only being treated with low dose asa .
I have cut sugar , gluten and dairy and have started CBD oil in hopes it will help . Anyone have any other suggestions ?
Just wanting to vent my frustrations . It’s hard to keep it all together at times.
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Bsharon
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So sorry Bsharon. I remember having days like that, feeling like I pay the price for feeling good. We aren't really of course but it sure does feel like it. I can't say I have any other great suggestions. Plaquenil is what helped me the most. It helped with the muscle pain flares. Beyond that, consider yourself hugged. We can never have too many of those. ((((())))) Patti
Did you get in to see your mothers Rheumatoligist? If so, I’m sure he/ she is making sure you are not developing Sjögren’s syndrome or a lazy thyroid along side your APS? ( I’ll mention a thyroid panel in a moment.)
What was ever decided about your anticoagulation? Are you still only on anti platelet therapy?
It’s important to make sure you vitamin and minerals are in range. There is a pinned post addressing these tests and expected values for APS under ,” pinned posts.
It’s also recommended to have the thyroid checked thoroughly by having the doctor run an advanced, more comprehensive panel.
Also, make sure your iron levels are checked, including ferritin. You should never be below 60, and closer to 100 would be optimal.
These are ways to optimize your body. ( and safe guard where we APS patients tend to have weaknesses .) It can help you weather a storm better if you are fortified, or differentiate between a flare and a bit of a diffenciency.
It’s also good to keep tabs to make sure that other auto immune diseases that often run with APS are not slowly developing.
Hi you have had a detailed answer from KellyInTexas I agree with this, and a lot of the time we have to order our own Thyroid panels, this is an example of one, if you are on Thyroid medication you would also need to add in a Reverse T3 . medichecks.com/thyroid-func... It is very important that your D, B12, Foate, and Ferritin is also up to speed. I hope you get better soon, many things can make us flare including untreated infections or viruses, I often don't get the virus, more a reaction to it, with symptoms different to the person I caught it off. MaryF
I read about your visionproblems and you asked 10 months ago if someone had those too.
I had a lot of balance-issues, doublevision, lost the vision in one eye for some minutes etc etc.
Was a bit better with Baby-Aspirin but not until I started Warfarin and had a rather high dose and could manage a steady level with selftesting in combination with bloodtests in the vein at a lab, I finally got rid of those symptoms for good. Important to have a Specialist who understands this and the effect of microemboli or tiny clots to the brain!
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