The Heat and Humidity

By Jack0
Posted June 5, 2008 at 5:03 pm

Lynda,

I have pulm & lymph node sarc also and feel exactly like that. I feel awful and tired all the time but the coughing seems to be worse during the periods when the weather changes.

Like when it is clear but going to rain in the next 12 hours, then when it us raining I'm OK, (not really but better) then when its starts to clear I'm coughing again. I think it may be barometric pressure changes or something that sets me off.

I also have the chest pressure, not pain, just a heavyness or pressure right dab in the middle.

I've found inhalers usless and take no prescription meds.

I'm like you I need my job too. What helps me is in the evening when my coughing is out of control, I take one Vicks Nyquil (green gel cap). It works wonders, it relaxes me and puts me lala land often right to sleep which I don't normally do. (generics work also(dextromethophan))
I try not to become dependent on them but they do work. I only take one and the longer I'm on them it seems the stronger they get. It is a little tough waking up in the AM.

I also find the job and the need to push myself, no matter how fatigued helpful.
I need to stay active and not give in to this thing,
without the job I'd be lost.

Good luck to you,

By annieg
Posted June 6, 2008 at 10:02 am

Lynda,
Since 2002 when I was diagnosed with pulmonary sarc, I've been unable to garden, rake leaves, pull weeds---any yardwork. Doctor's orders. Sadly, she's been proven right. (I missed the work so much that I'd start pulling weeds and planting flowers and get sick again).
Doing any of these things makes me really sick, increases fatigue and cough. Breathing is ragged, and I often feel like I'm suffocating from the heat (I'm 65 and on hormones---so I don't think it's hot flashes!) And since the prednisone regimen weakens my resistance to infections, I get bad sinus infections if I do pull even a few weeds. I feel my throat tighten, breathing become ragged, and get exhausted very quickly.
Not being able to work in the yard just about kills me, since I loved it so! I used to cry because I felt like the best part of my life (being outdoors) was over. Even wearing a mask doesn't help.
I'm at the point now that even smelling dirt, ivy, plants in general, and dampness and mustiness in particular, brings on the cough and fatigue.

If my job were outside, I might consider looking for indoor work, where I wasn't exposed to the elements mentioned above.
You and I live in the same Washington metropolitan area (I'm in Maryland), where the heat and humidity can be deadly for people with respiratory conditions. I literally spend days in the air-conditioning so as not to breathe the gunk in the air. Even though outdoor work is your livelihood, but it's making you miserable, would you consider a job change?
Are you taking any sarcoid meds?
So, yes, we have similar issues. Good luck and be in touch!

By kbag
Posted June 6, 2008 at 12:59 pm

Yes, it's my 1st Summer w/Sarc and boy is it hot!! I am on a nebulizer and cannot stay out at all in this heat. It,s the day of my Daughter's wedding rehearsal and I have been Scrapbooking all morning and have to rest before tonight!! Pray for them, and me that I will be able to walk and not use my wheelchair and participate in the ceremony and not be in too much pain!!!

By lynda1
Posted June 6, 2008 at 1:01 pm

Yes I would love to change jobs. Do you think if my pulmanologist writes a letter I might be able to transfer to another dept? I mean I don't know if the Dr would even write it . But I could try. What should I tell him?

By lynda1
Posted June 6, 2008 at 1:04 pm

Dear kbag
I feel for you. I wish our families would take our condition seriously when making plans---like an outdoor wedding--- My husband has become lax on smoking out of my area and it bugs me.

By micheleb
Posted June 6, 2008 at 2:09 pm

I would tell your doc just what you told us here! I see no reason why he wouldn't write a letter for you. I would fall over dead if I had to work outside in the summer! I can barely make it from car to indoor office and back again in the Michigan humidity!

Smoke would throw me into a severe coughing fit and I typically don't cough a lot and my lungs would hurt 10 times worse. My mom smokes, like a chimney, its sad as I can not go over to her house at all. She says she has smoked since before I was born and it never bothered be before! Well, I wasn't born with sarc! Its a very big sore spot between us. I even have to keep the vents in my car on recycled air because if someone is smoking in the car in front of me with there window down, I'm done. Even bad exhaust from big trucks and stuff is really hard on me.

By annieg
Posted June 6, 2008 at 2:46 pm

I agree absolutely, tell your doc what you told us here. If he's really looking out for your best health interests---and that's what docs are supposed to do---he'll write a letter. I, too, would die if I had to work outside, no matter how much I love it. And in this humidity? At this stage, I think I'd get really sick.

Being around smokers drives me nuts! I can tell if I'm sitting next to a smoker on the subway; the clothes reek of the smell, and the fingers are generally nicotine-stained. I've moved to another seat just to get away from the smell. It can make me sick to my stomach.

Same with solvents and paints in and around the house, fertilizers, weed-killers---you name it. For years, my husband worked on projects and hobbies in the house, most involving use of solvents, glues, paints. Over the years I've become ultra-sensitive to the smell. It now sends me into coughing fits. It's almost weird how you can smell the slightest bit of varnish, etc.

Yard-wise, we live between two very nice neighbors who are also fanatics about their lawn upkeep, meaning heavy use of chemicals and such. Our windows stay closed to prevent the smell from coming into our house, but even so, some of the odors drift in. Ugh.

Good luck!

By lynda1
Posted June 6, 2008 at 3:29 pm

Thanks for all your great input. It is so good to know I am not the only one out there that suffers with such problems. I will tell my Doc on Wednesday.
I have noticed riding behind cars with bad exhaust fumes I get very sick too. We are a bunch of freaks you know!!!! I am glad to be in such company. Luv Ya all

By micheleb
Posted June 6, 2008 at 4:15 pm

I am ultra sensitive to loads of things, smells are just one thing. I work right next door to a nail salon, OMG the fumes from there are horrid!!!

I am also sensitive to touch, such as certain fabrics, anything tight and tags in clothing will drive me insane.

Light, I am very photo phobic.

Noise, loud talkers are the worse!!! I am always begging hubby to turn down the tv. My ears ring consitantly, unfortunately I haven't figured out how to turn that ringing down!

The list could go on and on. Yeah, I pretty much think of myself as a freak!! LOL!!!!

By jan_deleuil
Posted June 7, 2008 at 7:35 am

Hi:

Did you check with your pulm about portable oxygen tanks. I live in Ky so our heat and humidity is about the same. I use it when I have to outside, but take it off when Im in the air conditioning. Have you checked you oxygen level when you feel like this? I have a portable one that you stick your finger in. I ordered it off the internet. You might want to ask the Dr, they can contact an oxygen supplier for you. You will need an Rx from either your pulm or pcp and they deliver them to your house

By lagalbraith
Posted June 7, 2008 at 9:13 am

The heat and humidity bother me too. Also, smells. There are times at work when someone with a lot of perfume on will walk by and it about kills me. Fumes from diesel trucks too. My husband wanted to buy a diesel truck. I told him if he did that he couldn't keep it here.

When I mentioned to my doctor about the humidity making it harder to breathe he acted like he was surprised. Now I see how many others feel the same makes me feel better. Or you could be right we are all just a bunch of freaks!!

Good luck. Hope your doctor listens and your employer follows his instructions.

By priscurl
Posted June 7, 2008 at 9:45 am

Hi Lynda,

You say you work outside. You mean out of doors? I am an Aussie so do you have 'dog days' in Virginia?
Lynda, there is a very good reason why you are beginning to feel awful. This reason is physiological, and odds on your 'oh-so-well-educated pulmonologist' doesn't know a thing about it. I suspect that is because doctors only keep up with the latest when they go to conferences. Sarcoidosis would come up fairly rarely at pulmonology conferences. It has to compete with emphysema, lung cancer and asthma. Do you get my drift? OK so here is the reason why you are beginning to feel bad.
Sarcoid granulomatous inflammation is a source of vitamin D. That's right! The macrophages which form the granulomas in your lungs make vitamin D. OK, and here's another catch about sarcoidosis. People with sarcoidosis cannot make the enzyme from the genetic code that turns off the kidney's production of vitamin D. What happens when you go out in the sun and it falls on your skin and gos in your eyes it has the capacity to make a substance called 7-dehydro-cholesterol into a forerunner of vitamin D. The forerunner of vitamin D passes in the blood stream to the liver where a hydroxyl group (-OH) is added to the molecule. It now becomes non bioactive vitamin D or 25-oh vitamin D. This is the vitamin that is tested in a blood test by the doctor. Bioactive vitamin D (that is vitamin D that is not a vitamin but a pro-hormone) is formed when the 25-OH from the liver passes in the blood stream to the kidneys.
In a healthy person, if enough bioactive D is present in the body, the kidneys produce an enzyme which prevents a reaction happening to convert 25-OH D into 1,25 OH D. But in a person who has sarcoidosis, lymphoma, cancer or a serious infection, this enzyme cannot be produced and 1,25 OH D continues to be converted from 25-OH D. In a healthy person, provided they get enough sunlight each day, their 25 and 1,25 D levels will remain steady for years with minimal variation. However, in a person with sarcoidosis all the available 25 D from the sun and other sources is converted into 1,25 D. This means that the 1,25 D level continues to rise unabated until either the person with sarcoidosis becomes ill with hypercalcemia, or some kind of treatment is initiated. If that treatment is prednisone or Plaquenil, the levels of 1,25 D will become lower.
One of the dangers for a person with sarcoidosis going to a doctor who is unaquainted with this knowledge is for a doctor to check a person's vitamin D level.
Invariably, doctors only check the 25-OH D and in sarcoidosis patients not on medication, this D level is usually very low because of the rapid conversion of 25-OH D into 1,25-OH D. The doctor then tells the patient to get more sun, eat more oily fish or worse still, puts them on a vitamin D supplement. When all this extra vitamin D passes through the kidneys it too will be converted into 1,25 D. In a worst case scenario, within months an untreated patient with sarcoidosis who is getting supplemental D will begin to get very sick indeed. They will feel awful but they could end up with hypercalcemia, or with calcified deposits in vital organs, severe osteoporosis, kidney stones, or worse still, kidney failure. When 1,25 D gets to certain level (in an untreated person with sarcoid on 800 IU of vitamin D a day this will be about 3months to a year) the osteoclasts in their bone will begin to release calcium back into the blood stream. This is often the very thing the doctor is trying to prevent from happening and they are actually speeding up and contributing to the process by giving their patient vitamin D. This can lead to hypercalciuria and hypercalcemia in sarcoidosis patients. These are abnormally high levels of calcium in the blood and urine. However, many of the symptoms people with sarcoidosis complain about for which doctors apparently cannot find any organic cause for are actually caused by the high amount of 1,25 vitamin D in their blood. Not only does the high vitamin D cause release of calcium from bones, because it is like a hormone, it binds to hormone receptors in cells. This plays havoc with the body's 'steady state' hormone feedback system and explains why many people with sarcoidosis have endocrine problems such as hypothyroidism. It also affects gene transcription at the cellular level, stuffing up the immune system. Vitamin D is very similar to prednisone and like prednisone, will cause a sarcoidosis patient to retain fluid and distribute body fat in a different way. This explains why a lot of people with sarcoidosis end up overweight. It may also be a clue in the cancer and obesity epidemics which now plague us. Vitamin D is the causative agent, many obese people probably have undiagnosed disease. Instead nutritionists and doctors tell us to eat more vitamin D so we won't get cancer. The cancer is already present when the 25D appears low in the blood when in actual fact the 1-25D is sky high. This is why some cancer and lymphoma patients end up with hypercalcemia.

These are some of the symptoms of too much vitamin D.

Fatigue
Asthenia (loss of strength and energy)

Insomnia (difficulty falling asleep or staying asleep)
Somnolence (sleepiness)

Paresthesia (numbness, tingling, burning, prickling)
Facial palsy (paralysis; usually unilateral)

Metallic taste
Irritability
Mood or mental changes
Memory loss
Inability to concentrate
Dysphonia (difficulty speaking)
Dryness of mouth

Arthralgia (pain where there should be no pain)
Podagra (pain in the great toe)
Muscle, bone and joint pain (ankles especially)
Muscle cramps
Tightening of throat muscles, difficulty swallowing
Muscle paralysis
Muscle problems leading to difficulty breathing (dyspnea)
Stiffness
Loss of muscle control
Loss of balance
Uncoordinated movement
Dysphagia (difficulty swallowing)

Vertigo (a feeling of spinning)
Dizziness, lightheadedness
Feeling of intoxication
Irregular heartbeat

Loss of sex drive

Tinnitus (ringing in ears)
Hearing loss
Nasal/sinus congestion

Diarrhea
Constipation
Cloudy urine
Abdominal discomfort
Nausea/vomiting
Anorexia (loss of appetite)

Photosensitivity (intolerance of light)
Irritated eyes
Redness of eyelid or lining of eyelid
Conjunctivitis (redness or discharge of eye)
Cloudy-looking eyes
Runny nose
Frequent, Excruciating Migraines
Headaches (continuing)

Hyperthermia (feeling too warm)
Night sweats
Cough
Pruritus (itching skin)

Hypercalcemia (excessive calcium in blood) causing weight loss and anemia
Bone demineralization (osteoporosis)
Calcium deposits in soft tissues of lungs, heart, blood vessels, renal tubules
Kidney stones

Impaired renal function causing:
polyuria (excessive urination)
nocturia (excessive urination at night)
polydipsia (excessive thirst)
calciuria (calcium in urine)
azotemia (nitrogen in urine)
proteinuria (protein in urine)
Irreversible renal insufficiency

Late symptoms of severe overdose: high blood pressure, high fever, severe stomach pain

The effects of administered Vitamin D can persist for two or more months after cessation of treatment.

You need to get this information to your pulmonologist. Here is a link to the complete article which you can print out.
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=370476&blobtype=pdf

Here is a link to the works of one of the leading researchers on vitamin D and sarcoidosis-so you know I am NOT making this stuff up.

http://lib.bioinfo.pl/auid:563254
Or just check out a google search
http://www.google.com.au/search?hl=en&q=J.S.+Adams+%2B+sarcoidosis&start=10 &sa=N

Your sarcoidosis is going to get worse if you continue to work out in the sun in summer. The seasonality of sarcoidosis worsening in summer has been known since the 1930s.
If you cannot be transferred to an inside job there are a few things you can do.
1. Wear a hat
2. Wear sunglasses, preferably ones which block infrared as well as UV light, you may be able to get these from blind societies, or make enquiries at your optometrist. They must be infrared light-blocking.
3. Apply zinc cream or ketaconozole cream liberally. Ketoconozole cream is for fungal skin infections but it blocks vitamin D from being formed under your skin. Remember, your sarcoid granulomas are pumping it out anyway, and there there is no shut off valve.
4. Despite heat, wear long sleeves and gloves, preferably dark clothing.
5. Don't eat oily fish, salmon or tuna, take codliveroil or vitamin D supplements.
6. Avoid flour and cereals supplemented with vitamin D.

Best of luck
Pris

By sfreebird1999
Posted June 7, 2008 at 1:25 pm

i have pulmonary sarc. i went into a local store and immediately my breath was sucked out. i had to turn around sit outside with my rescue inhaler. i went back and asked them what was the smell in the store. they said they had just cleaned the hot dog grill with a special degreaser. i then went home. i am so upset with sarc it prevents me from leaving home alot. i too am trapped in the house with the air conditioner as my best friend. if i was to go into all my medical history you would need a few hours of reading. just when i think i know my disease a new symptom appears, its very heartbreaking to my family and i. i have a 11 year old daughter who i miss out on alot of things due to this nasty illness. is anyone else resistant or have trouble taking antibiodtics?/?

By BUNKIE
Posted June 8, 2008 at 8:49 am

Antibiotics make me sick. If I can take one for the entire time then the next time I need it I will react. I have the same issue with smells. I turned down a graduation party today because it is outside and our humidity is up high. I don't do much outside without my mask. Looks awful but I use it all the time. I take it off when I go in stores, malls and anyplace with airconditioning but keep it close. I react to car fumes, nail polish, scented hair products, gas stoves, garlic cooking, pumping gas, perfumes, cleaning products, scented laundry products and pesticides. Although I do not have full blown MCS this is as close as I want to be. My home has a room air purifier in every room and boyfriends house has a Hepa filter for the entire home. I used to be so social. Now I am not. I can walk through any mall or resturant and know they have been cleaning. I avoid the perfume section of stores. I went to see a friend the other day and got a horrible headache. She had sprayed Raid two days earlier and I got sick. Some people are not affected by this. I wish I was one yet I know others are worst off.
Bunkie

By Sarasota
Posted June 8, 2008 at 4:28 pm

Dear Goodness!! It was 97 yesterday and I went out on my covered patio at 6:30pm and thought I would just die. Welcome to Florida. I used to love this weather!! OH MY!! I rarely go out during the day since my eye surgery. Light sensitivity barely works as an adverb/adjective in my case. Glasses the doctor gives you after dilation don't even cut it!!

Now to sensitivity in other ways. The TV remote - turn it down (but honey the other channel is so quiet) agh!!!!! Then there is work; when they degrease the grills, clean out the grease trap, clean the carpets, clean the filing cabinets, shine the elevator doors, etc. etc. etc. Last weekend, I called the maintenance supervisor and begged him to talk to the cleaning crew. I put a sign in my corner of the hallway: PLEASE - NO CLEANING PRODUCTS!!!! Medical Reasons! See if that works when I go in tomorrow??? I drive to work for 40 minutes - down 1 road for 32 minutes; get behind exhaust (bus, truck, whatever) or the roadcrews are in the median with their weedwhackers. Then I walk into the office and everybody says, "Oh, did you have a horrible weekend?" And I say, "No, I was wonderful at home!" The coughing spells last for 3-4 hours. I am going to get my hair trimmed for the first time since March 07. I've been doing it myself cause I can't stand the smells. Wish me luck!! I am so glad I am not the only freak in this big world. We live on a golf course, so we get grass and fertilizer spray in our lanai (patio) daily just from the overspray. Life can be a challenge, sometimes. Bless us all and thank God for understanding family and co-workers!

By lynda1
Posted June 8, 2008 at 8:09 pm

I tell you if it wasn't for the people here no one would understand the sarcoid craziness in my life. My husband just doesn't get it. It has been over 100 degrees heat index here for about 6 days now. He said Honey you should take a walk with me. I said are you crazy? I wouldn't be able to breathe after 2 minutes. (Maybe that was his plan) ;-} just kidding
My sensitivites are becoming quickly apparent.
Good Luck
Lynny

By kbag
Posted June 9, 2008 at 2:26 pm

The wedding was inside and I was still hot. It was a wonderful day and the wedding was so touching and fun, yes fun! I had prayed that I would be able to dance at her wedding and I did!! I would modify some of the moves, but I really had a great time -watching my new son-in-law dance the night away w/my daughter!! They have a lot of friends and I had a great time watching them together at the reception. He made faces at her to keep her from crying during the wedding. They made me proud and I am thankful to have been a part of their day. God answered my prayers and I know they are very happy and will have a great future together!!

By BUNKIE
Posted June 9, 2008 at 2:33 pm

Sarasota
You are so funny. Get yourself a mask for in the car and other times it gets you. I used to get embarrased but not anymore. I wrote Asthma on the outside of mine with a smile face. People just crack up now.
I just got my hair cut shorter for the first time in over a year. I can't take the smells in these big salons so I went to my moms roll and set hairdresser. I have really curly hair and now I look like a poodle. Haha. Lynny you are no crazier than the rest of us. We all have little quirks due to Sarcoid. This group is home for me.
Bunkie

By lynda1
Posted June 9, 2008 at 3:10 pm

Hey Bunkie,
It is home to me too. I may take your suggestion about the car one day. I can see me pooling down the highway in my "mini van" now. LOL Hey we got to do what works. If i am a freak I am in great company. Keep Laughin it helps...
Lynny

By lngsarc
Posted June 9, 2008 at 5:58 pm

I thnk i have the same issue. the heat and humidity just got crazy in NY and ive had terrible coughing fits, chest tightness, pain, and headaches too (bad ones). My doc told me he didnt know what caused the coughing since im taking 40mg prednisone, that it must be sumthn else. No clues tho. I only tk pred for the coughing and difficulty breathing i had b4 and know that its here again i dnt c the point in the pred w all its terrible side effects. But theres no turning back for 6mths :(

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