Hi all,
I have recently been away with my family to Cornwall it was lovely and sunny but I have struggled greatly with my breathing, inhalers are not working and it's becoming quite scary. I also have been shaking
I am still waiting for my appointment with a professor at the hospital, just wondered if the hot weather is affecting anyone else?
Hayley x
Hi
I have been meaning to write a post on the original forum as I went to Cyprus on 2nd fir a week but of a last minute ( well two weeks) decision
I was a little edgy wondering if the sun would do me good or not as some say they are fine I. The sun others say not good
Fortunately I seemed ok but was not able to take the heat/lay in the sun as I always used to
After just ten minutes I was back In the shade so I do think I was actually affected in a small way but still have a lovely holiday
Hello! The weather has always affected me since the onset of my sarcoid over 7 years ago, but my ex-consultant never agreed that there was a connection. I get extremely tired and breathless. There IS a connection.
Thanx Linda,
i do seem to be struggling in hotter weather and the sweats are awful, is it bad to pray for rain?! X
Hi Gustav,
i will definitely mention it when I go as it appears to be getting worse
I've certainly been rough for the last couple of weeks. So much so that I actually resorted to using steroid nasal spray? Still waiting to hear from ENT but as I reported before my herbalist has suggested turmeric to help with inflammation. Yesterday was particularly bad but today has been much easier (hoorah!) Don't know if this is of any use as I always seem to suffer when spring and autumn loom.
Hi Hayley ~ I'm sorry you are suffering presently. And to answer your question regarding the heat...it most definitely affects me...especially if it's high humidity. I usually stay in my room with the air conditioning on and a fan blowing on me.
You may want to see if you can get in to see your doctor eariler because of all the problems you're having....you shouldn't just sit around and suffer....if they can't get you in eariler, go to the ER ...it's not a fix replacing your doctor...but you may need oxygen. I have an oxygen tank here if needed. I hope you take that sign seriously. By the way, may I ask how you were diagnosed? I have sarcoid in many places on my body but it all started with my lungs and lymph nodes. I actually had to go into surgery and have a biopsy...and it came out positive it was sarcoidosis...my husband said "thank God it wasn't cancer" and the doctor said not really....cancer you can work with especially if she had lymphoma...because sarcoid takes hold of you and there isn't a cure..there are medications to help us through it but they have awful side effects. Sheesh, I stirred off a bit
My husband says I gasp for air all night...it's not apena because believe it or not, I've had 11 sleep studies...this was before I was diagnosed...the tech who did the last study told me that I sleep 10 mins to every hour...I'm not aware of this or wasn't...anyway, yes...it sucks to be suffering, especially in the summer! I love summer but I love fall more. Hayley, really you may want to speed up the process after all...no one is going to take as good of care of you than yourself! Doctors get caught up in a busy schedule and sometime forget there are people suffering...so, with that said, good luck and I'll say a prayer ... we have to carry on 
Hi Rachel...have you ever tried Food Grade Diatomaceous Earth...I've been taking this for a good month now and I'm feeling pretty good. Even some of my pain has subsided. It is a definite for inflammation! It has no taste but if you don't mix it well, it is a bit gritty. However, for the most part it's ground very fine..finer than flour. There are no side effects...no feeling shakey or sick....it's remarkable! It's finely ground years upon years ago...sea shells that's full of minerals and more....check it out...meaning, read up on it and see if it might be for you...lol I even have my dog on it and she's so much more playful it's remarkable!! I hope you find something to ease your suffering. Prayers for you, too!
hugs, frustrated
Hi Linda...I have sarcoid and sjogrens disease...and I cannot tolerate the sun for any longer than 10 mins or so. I too, always found comfort laying in the sun for that "great tan"...now, I try to get something in the 10 mins at the very least vitiman D. hope you feel better
I agree with you gustav and as you see, it's pretty much all of us....funny how one can say there's not connection when they aren't the ones suffering. We, are being studied ...the people that have sarcoidosis for a long time...you, 7 years me since 2005. I find pretty much the doctors I respect take an interest in hearing how it effects me...after all, most people may get it and never even know they had it being in the form of perhaps pneumonia..then it clears and they are never bothered again...thus, there isn't anyone to do a long time study on...so, Gustav, raise your hand! and carry on....feel better
frustrated
Thanks for the info on Food Grade. I will mention it to my herbalist as today seems to have started without a sore bruised rib cage. Hoorah! Can't see me cutting the grass just yet but hopefully in the next couple of days to give myself the chance to recharge my flat batteries!
Hi
i was diagnosed 3weeks ago after suffering for around 7months and my GP kept dismissing me, I demanded a chest X-ray which flagged up possible TB after full scan their concerns turned to sarcoid, on June 6th I had surgery and they took a large biopsy and several small ones and my diagnosis came through
i have been placed on an inhaler and a steroid inhaler for the time being before I see a professor who I hear is amazing in her field of lung problem thank you for your well wishes I think a trip to the GP is in order as I have woke up struggling again, never thought I would wish the sun away!
I've just seen this on Amazon and the reviews are really positive. I will try it.
Hi everyone,
I came across the link between sarcoidosis and sunlight when I first looked into the disease after being diagnosed in 2001. There's quite a lot about it online, but to summarise a chronic illness website, the connection was first noticed by Dr Scadding in the 1950s. He was the man who identified sarcoidosis as an illness. Another study in the 1960s noted that sarcoidosis patients are 20 times more sensitive to sunlight and dietary vitamin D, which why many medics advise that you should not take vitamin D supplements. Sarcoidosis can also affect calcium levels and therefore bone formation, so being put on steroids which dissolve bone is not good news. The recommendation is to avoid exposure to strong sunlight
It makes you wonder if the high pollen count might be making things worse Hayley. I think you should go have a word with your GP rather than wait until your appointment. Plus your GP can speed your appointment up to see the consultant. Don't leave things to chance especially if you are having difficulty breathing.
I've had a few episodes of either coughing violently or just finding it hard to catch my breath but I have the option of increasing my steroids to help me whereas you haven't even seen a consultant yet so please go speak to your GP
Hugs,
June
The other factors are pollution and fumes or dust, all of which can provoke coughing fits. Defra have 24 hour pollution monitoring page on their website but it almost always says low, even when you can see the haze, so I don't really trust it. Di
I guess it's like the weather forecast....they rarely get that right either!
Thank you so much Di for this information. I had a visit from a neighbour from my old address yesterday and she was having a go at me for not having my curtains open. I told her I was light sensitive and she just laughed at me. I felt quite upset because she clearly didn't believe me. We are back to that problem of "if I can't see it then it doesn't exist and therefore you are just putting it on" that we get from friends and family. I wish I had thought on and printed out your post so I could have stuck it under her nose. Her parting shot when she spotted a hat I wear when I'm out, was to burst out laughing again and ask if I minded looking like a fool in my sun hat. I just thought, if this is what an old neighbour thinks, then what does everyone else think? I find it hard enough to go out (although I am getting help for this now) without this sort of remark. I've even been accused of deliberately isolating myself! A lot of people here are very unkind to disabled people. It has been said that it is the worst city for hate crime against the disabled so you can see why I don't like going out much.
Anyway, that aside, I think the sun's heat this year has been particularly ferocious. On the occassion when I have had to go out I was really take by surprise with the extreme heat but then wondered if it was just sensitivity of my skin even though I was completely covered up. Maybe that hole in the ozone layer is bigger than we thought!
What a horrid ex neighbour...its a good job she is an ex, although your current arent much better either it seems.
It is so unfair how the disease can be dismissed when they really dont have a clue.
But it is the same old senario....cos we tend to get on as normal as possible...how can there be anything wrong
It is ironic when we were at the stage when so ill with it everyone was really concerned.....
I have made an appiontment to see my GP but it's the 28th July! If I feel any worse I will directly to A&E, I have been taking my blue inhaler over 20times a day and it makes no difference
Hayley x