Hello. Found out I had Hughes and Lupus back in 2014 when I had a stroke. Summers have always been a struggle for me, leaving me near crippled due to extreme fatigue. Never knew why until I had my stroke. I was 38 at the time.
This summer has been the worse ever, on top of near crippling fatigue, I now also have a loss of appetite, what I think is GERD, nausea, memory loss and diarrhea.
The only relief I have is in a very cool/cold environment. The hot sun/heat makes me very sick. I am seriously looking into moving to a cold state. I have lived in Ohio all my life. I moved to Texas for one year and thought I was going to Die and moved back to Ohio.
For those in a cooler state, do you think it makes a difference ?
Hi! Welcome here. I live in NJ. I'm ok with the temperature here. Not consistently hot, not consistently cold.
You don't say if you have any residual limitations from your stroke. Although in your pic you look pretty good.
My stroke left me with left-sided paralysis causing me to be w/c bound for a while.
Had I not been able to get out and about during my rehabilitation, I would have been in the looney bin.
That being said I think it's an individual choice. Although I must admit, now that I am so much better, I don't like when I am stuck indoors due to extended rainy, snow, hot/humid periods where I feel as I'm being imprisoned inside. It makes me moody and then increases my fatigue. If I get outside and walk, swim, do something, I feel much better.
If your asking does it affect Other symptoms.. not me. Thank goodness.
I know others on here like to follow gluten free diets and say this has helped them with"gut" issues.
I don't know if this will help, but I'm sure others will be responding soon. Again, welcome to our friendly site, Cindy in NJ
Thank you for your response. God is good!!! I was on the job when mine happened. They got it within the first three hours it was a TIA. Clot on the right side of my brain. It left me with simple partial seizures that effects my left arm only. When it first happened I thought it was my blood pressure because, out of nowhere on a normal day I thought at the time was my blood pressure because I got a rushing sensation that ran through my body, then my arm goes completely numb and flops around like a fish, I am not able to move until it passes. Lasts about a minute next. I get a splitting headache and my arm is non functional for a few hours. My neurologist diagnosed me with simple partial seizures. I was having them like a couple of times a week, now they only come if I get extremely stressed. Also my hand writing is now horrible.
I live in Ohio! Good to see another APS person here. Heat can get to me as well but I also struggle when it is too cold with my circulation.
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Thank you for your response. Crazy ain't it. I sure hope a cure is on its way. I have no choice, but to try the Paleo diet. It seems to be helping others
I really struggle with the heat. I live in Texas and the summers are harder on me than the winter for sure. I feel like I can't hydrate enough during the summer. Hydration is really helpful for me to feel decent.
I live in UK but I like to holiday when I can to see how other people live in other countries. I only flying 4 hours away but if it's too hot there I am ill.People I know ask if I felt better because of the heat as I have RA too but that's ignorance on their part .Might help with other arthritis but not mine. Cant stand it too cold either ! I don't think having APS helps either
Hi, I live in "cold" Sweden but I think that all has to do if you are well and properly anticoagulated and have found a Specialist of autoimmun illnesses who knows to take the required blood-tests to find out if you also may have other autoimmun illnesses besides HS/APS.
What anticoagulation are you on today?
Best wishes from a wonderful summer-town of Stockholm,
I was on Warfarin. Now I just take aspirin. In two weeks I have an appointment with my RA. I will see if he can refer me to someone who can do other test. Thank you.
I can tell you that before I took Warfarin (was on Aspirin) I also got a sensation that ran through the whole body of sort of "icing". I have mentioned it here but none has responded to it.
Could be what you talk of perhaps.
Sometimes we are very lonely with our symptoms as there are such an amount of different symptoms that get better with a proper anticoagulation at a steady and rather high INR. I have an INR of 3.5 - 4.0 and feel best around 4.0.
Have you read "Sticky blood Explained" by Kay Thackray. Good book about symtoms and understanding of APS. She has got HS/APS herself and she had also neurological symptoms and perhaps a Stroke like you.
I am surprised that you have stopped anticoagulation with Warfarin. Do you have a diagnose of HS/APS and Lupus also? Was it a Doctor who knew our illness that diagnosed you and who told you to stop Warfarin?
I think you need 1) anticoagulation 2) Specialist of autoimmun illnesses.
You are going to see your RA. Is that a Specialist we talk of?
Let us hear how it goes for you. I wish you luck at the appointment and that that Doctor will listen what you have to say about anticoagulation.
I def will to read that book. The hematologist at the hospital When I had the stroke tested me three time. The Diagnosis was TIA, APS and some type of anemia.
They tested me three times for lupus. The first two times was at the hospital. First test positive, second test negative. I had to go back weeks later and get tested again. That test was positive
I am still suppose to be on Warfarin, but the side affects were bad, vision issues, heart rate speeding and I thought I would try to change my diet and that did not work. So I went with the Aspirin
Most certainly your are positive then to Lupus Anticoagulant. It is enough to have it positive one time but what I understand you have had it even twice positive.
I am very certain you should be on some anticoagulation-drug which you are not now. Aspirin is an antiplateletdrug and works in another way than Warfarin or LMW Heparin.
Hope your "RA" (do not know what sort of Doctor he is) understands HS/APS well and can take the bloods required and give you the right drugs. Hope you can read the book before you see him.
Remember that some of us are sero-negative from time to time but if you have once been positive you will always have the diagnose.
Exercise and healthy food are important for us to feel ok.
I now read that you say you tested positive for "Lupus". Do you mean Lupus Anticoagulant which is one of the three antibodies for the diagnose of HS/APS. "Lupus" is an illness also called SLE.
Perhaps I am wrong when I say you are positive to LA (Lupus Anticoagulant)! You have to find out as that is important.
From what I understand. They say its both. At the hospital they told me that I had APS my score is 289.81. They said that they also wanted to test me for Lupus. They did a Anticardiolipin test. Mine read Igg normal value negative IgA normal value negative and IgM value 70 positive.
When I say RA doctor. I am referring to an Rheumetoid Arthritis Doctor. I was naive and thought they only treated arthritis, but they also treat blood related issue as well.
If he treat Rheumatoid Artritis he is no doubt a Rheumatologist but it is not sure at all that he is specialized in Autoimmun illnesses as there are so very few of them.
You need a Doctor specialized in autoimmun illnesses like Lupus, HS/APS, Sjögrens, Thyroidea etc etc. These last ones often go hand in hand like cousins and therefor it is important he knows the different symptoms and can distinguish between them.
Hi and welcome. The others have given you good advice here. I struggle with a change in temperature, either hot or cold. It takes me a few days up to a week to get stable again. I also dehydrate very quickly. So to help exercise (even when in pain and exhausted), and plenty of water.
Im concerned you are still having symptoms esp the headaches - do you have an APS specialist, not all neurologists understand us, maybe your blood needs more thinning?
Sorry your going thru it, Im sure you will get some useful advice on here.
I would like to point out for Kandigirl that she also lives here in the US in Ohio. I am in Ohio as well and we are not as fortunate as those of you in the U.K. To have doctors who specialize in Hughes/APS we are lucky if we find a doctor who has treated it. There is no such thing that I know of in OHIO as an APS specialist. Here you need to find a Hematologist or a Neurologist. I am seeing both. My neurologist is the first one in 13 years that has ever treated me for APS. The Hematologist gave the diagnosis. Now that many years have passed it seems the doctors here are slowly catching up and starting to pay attention to Hughes/APS.
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Agreed. Ohio really needs to get on the ball. I too only see a hematologist, RA and neurologist. There are lots of people in the US who could benefit from a specialist who does APS
Absolutely 100% correct Hidden . I agree with the others though too, I think you should be on an anticoag...not just aspirin. You're playing with fire and I don't want to see you get burned🔥
I am originally from Connecticut,Mass. The winters we have had are brutal on me. I came to Florida in march for vacation and I am still here. I have APS, Lupus and MS. I have been in the hospital now 5 times since coming here. The last one put me in a coma due to toxins building up. The heat is killing me. I wish I could be a snowbird, down here in the winter and up north in the summer. I cannot leave Florida right now as the Dr's said my lungs are too bad and a 1200 mile drive would kill me at this time. Extreme heat and cold are both triggers for my immune system. Good luck.
Oh wow!!! So sorry you are going through all that.
Although I've been a hiker all my life, I have had difficulty tolerating heat and humidity since around age 12. My tolerance got better, but the last few years, it has gotten worse for me again. Staying hydrated by drinking Gatorade helps me a lot. But I've always been a little uncomfortable with drinking such an artificial chemical laced drink. When I shared my discomfort about Gatorade with the Cleveland clinic nutritionist she suggested I switched to coconut water. I have, and yesterday I hiked 3miles in 90° heat and high humidity and had no problem.
This is a clue to some gut issues, kandi girl! I think you should avoid all artificial sugars. Sucralose is a big one. Stevia even bothers me. If I have sugaer, I just use real sugar, but very little.
I have dysautonomia- and it affects gut. Also- seizures. All that factors together.
Life is no fun when your tummy is upset- but warfarin- at the correct level- helped straighten me out. I was having small clots to bowels...
I really really think you MUST get back on warfarin for your safety!
Thank you for that. Yes, I am definitely going to consider going back on Warfarin, because of the problems I am having. I also will cut out sugar in general.
I live on Long Island, NY and have lots of trouble with the heat! I have this sweating problem with air conditioning on and people come to my house and ask for sweaters while I'm dripping! Cool sheeted help and lots of water! Good Luck and as u c you've gotten great advice on here! Welcome!!! GODSPEED
I am the opposite, since stroke and APS diagnosis I have become really intolerant of cold, heat / summer improves things. Of course I am in the UK so temp is not too extreme, but I found on holiday last year in France day-after-day of 30+C heat was fine.
I have recently been diagnosed hypothyroid as well, which is known to cause cold-intolerance, so is being on warfarin though...
I have APS and what is being diagnosed now as lupus-like UCTD. It's sort of like mild lupus. I live in upstate New York. I think I have a two degree comfort zone now. Both summer and winter have their discomforts. I'm sensitive to cold and not very fond of slogging around in the snow. But I'm also very photosensitive. I have painful poly neuropathy which get worse with sun. In the summer I go out with a ton of sun screen and a with sun blocking hoodie. So I'm not sure any climate will make me "better."
I think you could definitely need a good rheumatologists. You may benefit from better anticoagulation with you seizures. Also, I did have on and off nausea, weight loss, and loss of appetite for a long time before I was diagnosed with lupus, and the thing that helped me at that point was plaquenil. It took awhile for the good effects to totally kick-in but once it did those symptoms disappeared.
There are more lupus drugs now than there was then and a rheumatologist can help you find the right regime for you. Please do look into that.
I cannot stand the cold. So we moved further south from Georgia to Florida. I ache much worse in cold weather than in the warm weather. I currently have the a/c set @ 77 degrees, and my feet are still like ice cubes. I swim as often as possible, because that seems to be the only time that I am truly pain-free...even if it is for a short while. There is no amount of money that could ever persuade me to move up north...
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