Wondering

[miss_wiss]

I was wondering if there is a such thing as a flare up with the APS, Fibromyalgia and lupus? The reason I ask is because 2 days in a row I slept and was very weak no appetite and a killer headache.

[feedup13]

I am not sure what APS is but I have had lupus and fibro for many years.  Yes, you will experience flare-ups.  As frustrating as it is, the best thing to do during these flare ups is rest.  I experience alot of headaches and because I have a lot of pain and vasculitis, I take on a regular basis tramadol and Excedrian Migrane.  You  may have a vascular problem (circulation) that sometimes can cause blood not to circulate well to your brain, this can cause headaches.  The excedrian really helps to keep you blood circulating (probably because of the aspirin) and helps alot with headaches.  Get yourself some good books and if you can try to eat little meals a day that our high in protein.   Also because you will be resting try to do some stretching and strenthening exercises to keep yourself from becoming underconditioned, which will only add to your fatique and pain.  Good luck.  Also, have your thyroid and adrenal glands checked out to make sure that they are functioning well.

[miss_wiss]

Thank you so much for the advice I'll try that. APS are initials for antiphospholipid syndrome or better known to most as Hughes Syndrome. Any way is there any prior warnings when the flare ups are going to start happening?  Please any advice will be helpful.

[princess73]

I tested positive for 3 parts of the Lupus test,but not all parts. How did you get diagnosed? My doctor is currently calling my condition fibromyalgia and put me on Lyrica and pain mgmt therapy.My symptoms include: pain/weakness/numbness in all extremeties, dizziness, and fatigue, to name a few.

[PlateletGal]

Those can certainly be symptoms of fibromyalgia. I would consider asking your physician to order a T3 REVERSE on you, as many fibro & CFS patients have thyroid problems that usually aren't detected with the standard lab tests.

T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/fibromyalgia-treatment.htm

[princess73]

I have had thyroid problems before, but it wasn't a significant abnormality. My doctor did a complete physical yesterday, which included blood work for the thyroid and Hughe's syndrome. I am confused about tests being abnormal, but not abnormal enough to be diagnosed. Thank you for your insight

[miss_wiss]

I hope most of your blood work and testing come back negative. The Antiphospholipid syndrome and the Fibromyalgia are enough for one person to deal with. When the weather changes I sure feel the effects of my Fibromyalgia. For the last couple days I have had a pain right under the left shoulder blade and half way up the left part of my neck. I don't get excited though because my special list said that pain like that is probably a small blood clot hitting a muscle or tendon. I just take one day at a time reguardless of how I'm feeling. So, good luck.

[princess73]

Everything has been negative. I had an EMG and evoked potential, but have not gotten the results. I go to a rheumatologist on Friday. The physical therapist said that I was very weak. I am getting worse. It is kind of scary. I will let you know more as I know. I hope things get better for you. Remember to rest a lot. It is smart to take it one day at a time. Good idea!

[miss_wiss]

Yes please do let me know. I had a horrible day yesterday. I don't want to tell you not to be scared because I was and still am. I guess I should take the advice of one day at a time because whatever I was thinking yesterday forced me to hurt myself and try and get rid of the pain in a whole different way. Keep your chin up.

[princess73]

I hope that you are doing better. You shouldn't be doing anything that would hurt yourself. Well, I don't have anything new. All tests are negative. For now I guess I have to settle on the Fibromyalgia diagnosis, but I am not giving up. Have a Happy Holiday.