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Sensitivity to heat
11 Replies
[email protected] - August 3

hello fellow Fibro people! Just wondering if anyone else is super sensitive to heat and humidity- I cannot stay out for longer than a few minutes or I feel as though my body is melting, very weird sensation. It also affects my head- my head feels like it is in a vice, and my surroundings get smaller, and I have trouble seeing and walking. It really affects my entire body. My fibro fog has been excessive this summer.

 

January - August 3

Hi shelly. Yes, a lot of us are very sensitive to heat and humidity. We had a lot of conversation going on last year about it. And this year it's been pretty bad again! You can find old conversations by plugging in terms like "heat and humidity" into the blue search box at the right. As i recall, last summer, a LOT of people were having trouble - just as we have trouble with the cold weather too! There have been days this year when it was so nasty out there, I felt I wasn't getting enough oxygen just walking down the block.

 

Cher0208 - August 7

Hi all,

God- I have been having a MEAN flare up this summer. I suspect its the heat and humidity that is causing this relentless flare up and pain. My normal concoction of fish oils, magnesium and glutamine is just not making this go away.

I did have cheese cake with a graham crust - I am sensitive to gluten- about two months ago. I had already felt a flare up coming on and then I went and did that. I am wondering when this is going to let up. Must be weather related. I do not like extreme weather. Cold or hot. But then again who does? Once again and it always comes down to this- we are just more sensitive.

 

January - August 7

Oh… so you really did eat the cheesecake. LOL! I wasn't sure if it was a joke on your other post. So… was it worth it?

What kind of magnesium are you taking? According to Life Extension, the best absorbed form is magnesium threonate. Stay away from magnesium oxide, and only use the chelate - It will say magnesium and something that ends in "ate." (There's also a magnesium glycinate.) The pharmacist and I checked on this. If you take magnesium by mouth it is just hard to absorb. But DON'T overdo it!! You already do the soaks in Epsom Salts right?

So good to hear from you! Hope your flare calms down quickly. This summer was hot, but I haven't hurt as badly as last year - who knows why!

 

Jocelyn - August 7

Yup, the heat is really a problem for me too. I cannot stand the heat and humidity. I can't even walk outside for more than 10 minutes, unless I am going into the pool to cool down...and then the pool has to be warm enough to not cause a flare. Temp has to be 85 degrees or over. As long as I stay wet, I am okay. I have been running the A/C 24/7 this summer. This has been a long hot summer. Then of course, we will have the flares from the long cold winter! Hope all is doing well. I am confused about some of my eating habits. I tested allergic to soy many years ago when I had food testing done. However, my husband bought me milk called Silk. Which is soy.(instead of my usual). The funny thing is, I decided to give it a try and it didn't bother me at all. My stomach has been great, better than on Rice Milk, which I a aware most likely contians gluten. I just can't figure these allergies out. I have so many it is difficult to figure out which was causes me what.

All of you take care.

 

January - August 11

Hi Jocelyn. Did you ever keep a food and symptom diary? It's a pain to write down everything you put in your mouth, and also every annoying symptom. Then you have to review it, and try to find patterns -- but if you do it for a month or two, you might get a good idea of what bothers you.

My problem was "delayed" food allergies, so the symptoms don't show up right away. Made it very hard to diagnose what was wrong - it wasn't til I kept a food diary that I figured things out!

Another thing I learned was that medical people look for the classic symptoms like anaphylaxis, asthma, lips and throat swelling, itching, hives, rashes, diarrhea. They look for serious symptoms that come up suddenly. But sometimes it's different.

I learned that DELAYED food allergies are common, but the medical community does not know much about them. They cause all kinds of symptoms, including things like insomnia, headaches, skin problems, bloating, fatigue, brain fog, pain, etc. The problem is symptoms might show up several days or a week later - when it's very hard to connect the symptom to the food you ate. You really have to do your own special diet, and carefully note how you feel.

Glad you are doing OK on the Silk. Maybe you should have your allergy tests repeated? Maybe you really aren't allergic to soy? Sometimes the labs make mistakes and you get test results that are wrong, that's just a fact. It's happened to me before. I'm sure most people try to do a good job, but sometimes there are people who are neither competent, nor honest. Just like everyplace else, there are some bad apples.

Hope you are doing well this week! We had a couple stifling hot days, but the weather is a little better today! Managed to get some things done! Still, when it's really hot and humid, I wear out very quickly!

Hope everyone's doing better, and that the summer heat is starting to wane at last.




Lately I have been learning more about GMO foods. I don't know if that might explain why you tolerate one type of soy and not another…? But maybe?

 

Jocelyn - August 12

January,

Thank you for all the information you provided. I am very interested in GMO foods? Not sure what they are.

As far as the allergy's go, I have had them since I was 12 years old. Like you, I have delayed symptoms as well. I have had some great allergist in my years and they explained, as you did above, how reactions can be difficult to figure out unless you keep a journal. They also explained that allergy testing is not always accurate, but it is the best tool they have. I have had extensive allergy testing over the years. Most of the allergy's I was tested for, I already knew I had before the test. However, there were a few surprises, I found out I was allergic to nuts, soy, tomatoe's (highly) and should not eat them. Since we have always had a garden, I have eaten tomato sandwiches and never had a problem. However, if I eat a Strawberry (which I tested negative), I get an immediate response with sneezing, itching throat etc. So...I do my own testing. I used the soy milk for a week, with no problems at all. I will be starting my second week coming up. If after two weeks there is no reaction, then it is safe to say, for myself, that I can continue using this milk and get rid of the Rice Mile that bothers me and most likely contains Gluten.

Just another thing to do. I am so tired of tracking everything, it has consumed my life and I really need a break from it. After working a full 40 hour work week. I just want to kick back and relax. So...I will continue with the Gluten Free diet, I like it and feel it helps. I am no longer avoiding soy that is in Gluten Free Food because it limits my assortment of foods too much and I seem to be doing just as well. Time will tell.

How have you been :)

 

jpmixer - September 16

Those of you who have what seems to be an allergy to heat might have Cholinergic Urticaria. I had a sensitive to heat and some related to my nervous system. if i was in a environment where it was warm or got nervous. I got hives from head to toe. 10 years ago i dealt with CU. didnt know what was happening to me. went to 6 different doctors. I walked myself to the ER twice, it was that severe. CU just came all of the sudden. When i had no more faith left that this was going to go away. i found a family doctor that CURED it. its been over 10 years and has not come back. the doc prescribed me prozac, klonapin (not sure of spelling), and doxaphin (not sure of spelling). took it for a month but the meds started working after 2 weeks. although the side affects were pretty exhausting, its well worth it. the doctor was Dr Karkalas in King of Prussia, PA. good luck everyone, hope this info was useful

 

January - September 16

jpmixer. Please research antidepressants on the website theroadback.org. I well know the effects of long term use of Prozac (which starts out great and then often stops working) - you will start to need more of the drug to feel normal - then you just feel horrible all the time. Then they start switching you to other drugs, and it gets worse from there.

I had a bad summer - and I thought i'd try the "natural herbal" form of Prozac which is St. John's Wort. I took a small dose. In a few weeks I could barely get out of bed and was getting brain zaps and dizziness - which I am still recovering from. It took me a while to figure out it was the SJW, so I quit - and now have to go through withdrawals - but they are nothing compared to what I went through before to get off SNRI antidepressants.

I remember when I first started taking Prozac - I felt GREAT - people told me how wonderful I looked. In the long run, Prozac solved nothing, and left me with a lot of serious and permanent problems. Did your doctor tell you that Prozac depletes potassium from your body? Probably not. Prozac also interacts rather severely with a number of drugs, including over the counter drugs. So good luck with it. If you start getting weird sensations in your head, or feeling extremely depressed - no doctor will tell you, but you can thank Prozac.

I think to have CU, you would have to break out in hives. Your story is really interesting, and I'm kind of amazed that the meds took the CU away. Hives are usually an allergic reaction, but it sounds like you are being treated with anti-depression and anti-anxiety meds. But we are all different - if it works for you, it works. Please do check on the potassium situation though - if you start to feel bad, get your blood potassium checked. Low potassium can cause you to faint. Good luck with it, and don't take too much of that Prozac. Keep the dose as low as you can!

 

January - September 16

Hi jocelyn! Hope your summer has been going well. As I mentioned above, I made myself rather ill with St. John's Wort and am still recovering. So that put a crimp into everything!

Those food allergies are something else! I got tested when I was a kid, and came back allergic to so many things, my mother just said the heck with it, rather than bother with a diet, she put me on steroids. I don't have the med. records, wish I did. Steroids were NOT a good idea, and I've had to figure things out since I've been grown. I seem to be more sensitive as I get older.

You asked about GMO food. GMO means "genetically modified organism." Scientists go into the DNA of a certain plant food (for example corn) and "paste" extra things into the DNA - producing seeds with un-natural, altered DNA. This has been going on for decades, and a lot of the basic food crops now are GMO. Some people feel this may be causing the increase in weird auto-immune diseases, cancers, sensitivities, etc. Our bodies are not equipped to digest "foreign" DNA, and it may just kill off those of us who are super-sensitive. I was reading an article about how different people develop tolerances for food over many generations. That's why different countries develop different foods - they eat what agrees with their people genetically. If you ate their food, it might make you sick, you wouldn't have the ability to digest the food properly. This is the whole idea behind celiac disease - some people have the genetic ability to break down and digest the gluten protein, gliadin, while for others, gliadin looks like a foreign invader, and the body sets up an inflammatory response to it.

You can google, there is a lot of information online, and many informative videos about GMO and Monsanto, which is the leading company making GMO food. Interesting, much of what is found in processed food now, soy, wheat, corn is GMO, and has been for years. While a lot of "healthy diet" people are against GMO, I've talked to some people (scientifically oriented businessmen) who are in favor of it. One interesting example is the latest form of Monsanto GMO corn. They have inserted into the DNA a form of pesticide, so the corn makes its own pesticide. When an insect eats the corn, the insecticide causes the insect's stomach to blow up. So the corn produced from this GMO corn seed is beautiful and has no bugs in it. HOWEVER, it has supposedly caused liver and kidney failure in laboratory animals. (And it's interesting to note that "something" in pet food and snacks from China has for years been causing liver and kidney failure in dogs and cats, but no one yet knows what the culprit is.) Anyway, the GMO corn with the pesticide gene was available at Walmart this past summer - and probably at many stores. When I asked at my grocery if the corn was GMO, the only answer the manager could get for me was "It comes from Mexico, we don't know." So I did not buy any fresh corn this summer.

IF the store labels GMO products (and most don't) you can tell by looking at the ID number. Most produce has a 4-number code. If there's a 9 in the front (making a total of 5 numbers) it's organic. If there's instead an 8 in the front, it's Genetically Modified food. (Here's a mnemonic: 9 is fine; 8 is hate.) Europe requires labeling so people can decide if they want to eat it. The US does not. Most stores won't label GMO food with the 8 in front of the other four numbers, because an increasingly educated public will not buy it.

I think it's very interesting that so much processed food has contained GMO for at least the last 20 years. That was about when I started getting fibro symptoms. Years later, when I quit eating processed food to avoid gluten, my fibro greatly improved. Maybe I was not just avoiding gluten, but all the GMO in processed food. Who knows..??

Glad the soy drink is working out well for you! It may just be a strain of soy that you can tolerate! Whatever works, as my old, very excellent doctor used to say! And as your doctor told you too, the allergy tests are very tricky and can give false negatives and positives. I guess the only way is keep a food diary...

And yes, I hear you about being SO tired of tracking things and symptoms and watching everything I put in my mouth. I've been really exhausted - and depressed - all summer. But I do think it was the St. John's Wort. Dumb, dumb idea. Never going near antidepressants again, I simply cannot tolerate them any more, not even tiny amounts of an herb!

A note about gluten foods -- I still don't do very well with Amy's regular food - maybe it's gluten free, but it does contain cilantro - I hate cilantro! I read that it's a genetic thing - a percentage of the population cannot stand the taste of cilantro, I'm one of them. Anyway, they have a new line out that is "light and lean." I've tried the corn polenta with tomato and swiss chard, and it's very good - no problems for me. Also, I've tried Evol Chicken Teriyaki - and have done fine with that. Guess I should write a note on the diet thread. Tired! Haven't been on here in weeks - so hello to everyone. Missed talking with you. Let's all hope we have a mild winter! Hugs to all.

 

Jocelyn - September 17

Hi january,

As usual I am so impressed with your knowledge of food and additives, what is good, what is bad. You have done a great amount of research and it shows and has helped me tremedously. I look forward to reading your post. The are so formative.

I will say, like you, as I age, I become more sensitive to many things. Foods, is a definate, odors, such as sprays and perfume, are now deadly to me. I had an unfortunate exericence with the woman I shared an office with whomstarted wearing a perfume that I was highly allergic to, we had a big fight, and sorry to say, she got beligerent. Her favorite daughter bought it for her and she wanted to wear it. It was killing me. the daughter that is not her favorite has asthma too.This is a women I helped her out with her work all the time. Shortly, after this situation happened, I received a big promotion that came with a private office, and she now works under me with 3 other people. I am her BOSS! Don't you just love stories with happy ending?. Any\d, she had a hard time along with my other colleges to accept that I was no longer equal to them, but things finally settled down and they accept me as their boss and are very nice to me. Now she worries when she walks into my office and she has perfume on, she asks me if it bothers me. I tell her not if she only stays a few minutes!

It has been a horrible summer the heat and humidity has been awful and I have had my A/C on all day and night.

I am so sorry St. Johns' Wart, did not work for you, I have heard it works for a lot of other people. Although it is a set back, at least you tried it. Now you can take that off your list. That is what I am doing

I have had some strange muscle spasms in bed, so bad that m calfs were so sore I was limping and taking 9 Advils a day. It finally went away.

Herbs can by tricky, just like medicine, the really are a medicine in their own right.

Back to an old story pertaining to my mother's estate. The lawyer finished the letter and it went out to my brother. I haven't spoken to him for 3 months. He went ballistic when he read it, but in a week or so, he thought about it, and called me. He is over it all and back to talking to everyone if they ill talk to him. I told him talking was fine, but anything past that wouldn't work.

So, round one is done, do I think there will be another round, I sure do? I will handle that as it comes. Hopefully with grace and dignity.

Again thank our for your help.

Oh, and my allergies have been so bad this year.

Take care,
Jocelyn

 

January - September 22

Hi jocelyn - I have been feeling so crummy this summer also! I tried St. John's Wort many years ago - and if it bothered me, I didn't notice. This time it really hit me hard. My years on antidepressants changed my whole body, and I can't tolerate any of that stuff any more!

You mentioned your calf muscles going into spasm. Mine do that occasionally also - it's very painful!! Since I have celiac disease, I don't absorb nutrients well - so I have to make sure I take my vitamins/minerals. Usually I multi-mineral tablet will stop the spasms. I think I have also taken potassium and it helps quickly. Another thing that was disrupted by taking antidepressants! My potassium levels. In MY opinion!

I've recently had to go back to the dentist for a bit more work - I've got terrible anxiety from all the work I had done before, so I don't go unless I'm desperate - glad I went - I was getting an infection. Well, not really GLAD…. : ) Now that I've overcome my anxiety, I need to go back and get some things checked out, but I am not signing up for much. He's a very good dentist, but he's a good salesman too. He's already tried to sell me some things that we tried years ago - unsuccessfully. Answer is: No thank you. Only what I absolutely need.

Sounds like your brother has realized the lay of the land. Hopefully. He isn't going to get anywhere with tantrums. Maybe he has calmed down and figured out that it's in his best interest to work with the rest of you.

I know what you mean about the perfume! I've met some other fibro people who have MCS - multiple chemical sensitivities. We are just too, too sensitive! I've had the same experience as you, sitting next to someone with vile-smelling perfume - luckily I was able to move - but other people in the class complained about her too. I think it is so rude and self-centered, if someone nicely explains they have a serious problem with your perfume - to keep on wearing it! She could easily wear the perfume (a gift from her daughter!) anywhere else except around you - to keep wearing it seems aggressive! And you said one daughter has asthma!

Reminds me of my own mother, who smoked strong cigarettes constantly, right in my face. My father and I both had asthma - my father died of heart and lung disease. I used to tell her how much it bothered me, but she brushed it off - like I was just being a pain. (I was so allergic to tobacco I had to quit jobs where there was a lot of smoking because I was constantly sick.) My mother kept right on smoking UNTIL her doctor told her when she was in her 70s that she needed to stop smoking for HER health. She went home, smoked her last cigarette, and that was it. What a selfish woman! The heck with everybody else, the only person that mattered to her was herself.

So glad you are the boss now, and Ms. Perfume "has" to be a little more considerate. Perfect karma!! I know that is a difficult situation - people can be very jealous when you get a promotion. I'm glad it is working out for you! You have to handle those things carefully, so you must be doing a good job of it since things have calmed down!

And thanks for your kind words. I have done a ton of research in areas that interest me - and it makes me feel good when I can share it. I hope I don't put people off with my long posts - but I probably do sometimes. Anyway, it's always nice to know it was helpful to someone. Thank you Jocelyn. And HAPPY AUTUMN! New England is beautiful in the fall.

 

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