APS & Extreme Fatigue

[TxMama79]

Hello, I've had APS for awhile and usually just take a baby aspirin except during pregnancy when I've taken heparin too. I'm in the Dallas, TX area.

Recently, I've had very bad extreme exhaustion, migraines, Raynaud's phenomenon and bad circulation. I was also diagnosed with Fibromyalgia almost 15 yrs ago. I've recently read about the connection between it all.

Questions:

1. Has anyone else experienced the extreme exhaustion? What has helped?

2. Any suggestions for drs in the DFW area who know about all of this?

3. What kind of treatments have worked? I prefer alternative, but I'd like to hear about all.

I think my APS has gotten worse. I feel so overwhelmed. I have 3 kids and the tiredness is just unbearable. Please help!!!

[lupus-support1 Administrator]

Fatigue is a general symptoms which is difficult to treat, although some drugs like Plaquenil may be helpful. You have to listen to your body and rest when necessary.

As far as I am aware, Raynaud's (which I have) is not connected with FM. For some doctors who are not specialists, a diagnosis of FM is given, which may not be the actual diagnosis. I am not suggesting your diagnosis is incorrect; only that many patients have been given a diagnosis when they have an autoimmune condition, which goes undiagnosed. If you were given a diagnosis of FM by a specialist in FM, then I would be confident.

If you are getting migraines, I would see a specialist in APS/Hughes who may also be a specialist in autoimmune conditions such as SLE. I would not leave it and I think you are right in getting to see a specialist.

With good wishes,

Ros

[TxMama79]

Thank you. I have been tested and am low in Vitamin D and Folic Acid. I take supplements for those daily. I don't have a diagnosis of Lupus or any other autoimmune illness--mine is primary APS. I am honestly not convinced of the Fibromyalgia diagnosis since I learned I have all the other autoimmune issues. But no dr has said that I don't have it...we'll see. I'm searching for a hematologist who has experience in autoimmune issues. I just need some kind of relief. I'm so so tired!

[MaryF Administrator]

Hi, and welcome, some with Hughes Syndrome/APS do very well on Plaquenil, the brand for this is Zentiva! (Plaquenil), but you notice it work over a few weeks, did not suit me but did suit my daughter. Also do check out your levels of vitamin D, B12 and Iron, if those are low you will feel awful, and low iron does compromise your thyroid functioning properly. Also please do check you Thyroid, beyond the TSH test, a detailed profile as it is not uncommon to have Thyroid problems and Sjogrens Disease alongside Hughes Syndrome/APS,.

MaryF

[Lure2]

Welcome to our friendly site of HS/APS!

I agree with MaryF that we know here that it is not uncommon to have Thyroid problems together with Sjögrens and HS/APS.

It is very difficult to diagnose these different illnesses that go hand in hand like "cousins". Therefor the Specialist of autoimmun illnesses is very important and I also wonder if you are correctly anticoagulated as that is the main problem with this illness. We need a stable and correct anticoagulation to feel ok.

Best wishes from Kerstin in Stockholm

[KellyInTexas Administrator]

Hey! I'm in Kerrville area. I'll check in with you soon- and read more about your symptoms. I have sketchy wifi right now but wanted to tie in. I keep loosing my wifi connection- sorry- but please read my posts if you don't mind- it may help you .

[GinaD]

for those of you heard my story before – forgive me or just skip this post.

I was diagnosed with APS in 2001 after a series of mini strokes. after I went on warfarin the mini stroke feelings past and I felt great. But after a year or so fatigue came back - with a vengeance! I didn't have any measurable symptoms so doctors dismissed my fatigue. But a friend of mine who had recently gone on the Atkins diet was convinced I was eating too many carbohydrates and sugars – even though I was not overweight. Since I was on warfarin and did not want to mess with my diet too much I finally ran her idea by my GP. and to my surprise my GP was enthusiastic and thought I should try the diet. So I did and on day one, let me repeat that, DAY ONE! I had a lot of energy. I went hiking on day one. On day two I cleaned the whole house in the morning and biked up and down a 1200 foot mountain in the afternoon. On day three I reasoned this had to be more than just the Adkins diet. I read up and concluded that I must have celiac. subsequent tests have show that to be true. The standard gluten tolerance test was negative, but all my rheumatological blood factors went from sky high to boringly normal. My doctor attributed that to a gluten allergy.

so you might explore food allergies. And Dr. Hughes himself has stressed that there seems to be a lot of gluten sensitivity I'm on APS patients.

[TxMama79 in reply to GinaD]

Thank you. I went gluten free about 3 mOnths agO. My stiFfness & pAIn went away but nOt my exhaustiON. 😕

[GinaD]

Without the advice of my nutritionist I would never have figured out I was allergic to cashews. Not walnuts, almonds, brazil nuts, pistachios. Just cashews. Blood work hinted to the nutritionist that I was reacting to a " high histamine" food. So I eliminated all foods in that category and then re-introduced one at a time. I had been wondering if this was really going to work. Was I going to really be able to tell and identify the food I was really sensitive to? Yes I did and the symptoms were quite obvious. No gut problems, and then two days after introducing cashews and I have gas, bloating, heart burn and a toss and turn night.

[KellyInTexas Administrator]

I was out of state- I'm back in the Lone Star. Message me and I'll help you out. ( I'm loosing my vision due to micro clotting of nerves in eyes. Ugh.... so- for detailed one on one being that we are in same state there may be a better way to communicate. I suspect you are way past apririn.

Ill ask you about anti body titer results, how many times tested( not that I give a flying flip- this will prompt a discussion about going " sero negative and sero positive) / doctors who " get it" / ( mine are now trained in as I go in and out of positive negative. This is a huge impediment to getting proper help here with improperly trained docs which is more prevelant in Texas.

You may need to come to San Antonio. I may need to meet with you after hearing your story/ numbers/ specifics.

You can PM me. I'm 48 still have a teen at home. I know it's hard to travel. I had a epilepsy specialist just north east of Dallas, I know. It's tough. But sometimes you have to initially, and that's when you are the most unwell. Think long term strategy . A SA heme will set goal a Dallas heme will then follow.

[KellyInTexas Administrator in reply to KellyInTexas]

Did anyone get with you regarding a good ( GOOD ) heme in the DFW area? If so- great. I'd be interested in hearing the definition of "good"

That depends on what they set your INR at based on your past history and present symptoms.

( vein- vs- arterial clotting)

*See pinned posts on this forum regarding "RAPS trial.

* please familiarize yourself with diagnostic criteria ( both lab and clinical ) original Sapporo from 1999

And then compare it to the revised Sidney criteria from 2006 . Sometimes also called the Miyakis ( may be slightly misspelled...) criteria named after this doctor. ( who worked with Dr Erkan in NYC at HSS .)

We will have a serious discussion about this. Pros and cons but critical for understanding most all doctors decisions for every single decision they make, and when they make it. Excellent and seasoned physicians use it as a guiding principal , then go by years of clinical experience to then have a very " educated feel" about how they need to handle the particular patient sitting before them.

An inexperienced, or likewise " by the book" physician will jeapordize some patients because they are to busy jabbing their finger at a " criteria" on the page and yelling it at you than to sit calmly back, and take the whole of you in, and mentally process you - perhaps blending the 1999 and 2006 criteria together . The best of both worlds I've come to conclude.

[Twin59]

Just reading this post. Did you try Plaquenol? If so did it work? I have APS and extreme Fatigue and desperate for any kind of relief. Thanks.