Hot weather

Posted , 7 users are following.

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

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  • Posted

    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 

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    • Posted

      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

       

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  • Posted

    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.
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    • Posted

      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

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  • Posted

    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. 
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    • Posted

      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

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    • Posted

      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! 
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    • Posted

      Gustav ~  I ended up purchasing also through Amazon four of the 2.5 size of GE because it was a tad less.  I did order on a "wing and a prayer" since I never tried it before.  I guess when I saw so many people with a positive outcome and I hadn't read anything negative, I thought the chance was well worth it.  I did call the manufacture "Earthworks Health" after I received it because it doesn't tell how to use it and he (Phil) was very nice and extremly helpful.  I ordered for my dog and she comes to me everyday at 3:40 pm and sits and looks where the bisquits are and then back at me...it's pretty cute!  If you want the phone number or address on Earthworks Health let me know although I imagine you can find (like everything) on google/bing.  Should you decide to purchase it, I hope your experience is as mine...great!  Good Luck.

      frustated

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  • Posted

    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 lol

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    • Posted

      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! 

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    • Posted

      Good luck!!  Is your professor the same as a pulmanolotist?  After being diagnosed, I was sent to the pulmonologist and a rheumatologist...one to treat the lungs and the other for the inflammation.  For myself, that's why the GE food grade is working so well...it does cut down on the inflammation.  I'm not going to quite taking my meds (yet, at least smile ) until I see how well it works over long-term.  The meds I'm taking for it now have awful side effects.  The steroids alone have them.  It not only seems to add weight but with the weight gain, that causes all sorts of other health issues...so I'm really hoping GE stays strong like it is.  People get the wrong impression with the words "weight gain"..some seem to think that steroids causes one to eat more...not really.  I did gain a lot of weight but not from eating, because I was barely eating.  The methatrexte and plaquenil was making me so nauseated and tired that I just couldn't eat.  So, it was a hard lesson for my entire family and friends to learn (the ole' "don't judge a book by its cover". 

      Anyway, I wish you well and I'm happy that you were instrumental in taking your health serious and demanded an xray.  Good for you!!  More should do so.  Again...good luck.

      frustrated

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  • Posted

    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

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    • Posted

      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!

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    • Posted

      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.....

       

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    • Posted

      Hi di0694...just curious because I was put on vitamin D from the lack of sunlight.  We need V-d...not VD  hehe  But because of the steroids and the other meds I was on, it not only depleted V-d but the fact that I couldn't take the sun that also was a problem.  I'm wondering, how do you get your V-d?  I mean, I have a hard time eating bc of the meds, perhaps you don't...I'm not challenging you I'm merely curious if there is something else your doctors suggest.  I'm all for any insight on this horrendous disease!  I'm also suffering from sjorgens disease and that too depletes my V-d...plus with my eyes so bad, I definitely cannot tolerate the sun.  You sound a bit like myself as far as finding out as much as possible on sarcoid...I believe I can run a lecture on the subject  lol Now, with sjorgens, I'm going to double the charge to hear my lecture!! LOL I'm joking.  As far as the depletion of calcium, I do take a pill monthly to help with this.  I tell you, between myself and my husband, reitrement isn't all it's cracked up to be.  He has hemochromatosis.  That really scares me!  But that is another subject/discussion. 

      Good luck to all!! and.....carry on smile

      frustrated

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    • Posted

      June!

      Ignorance is Bliss!  As you know, many people have no idea what this disease is....as we've talk about in our posts that even some doctors don't. 

      I can see getting upset with the way she was acting but truly, June, karma's a beotch!  hehe....I mean, one day she's going to come across an article or hear that someone close she knows has it (God forbid) and she'll flash back at the conversation she had with you and how she behaved...she may or may not apologize...my feelings are with someone that ignorant, they won't. 

      I have a very close friend that seems to follow information her son-in-law was feeding her.  He wrote a paper in college on sarcoidosis...so all the sudden he's an expert! The paper was written almost six years before I was even diagnosed!! Medical information on almost any  subject changes day/month/year...but that didn't seem to set in with her...But anyway, she told me, well, if you have it more than a year, you won't have it after five years.  So, with you having it in 2005, 2010, should be a good year for you....geesh, I see her often and she's never apologized how she was with me and how she made me feel embarrassed with a disease I have no control over.  We'd play cards with a group of girls 8 to be exact and it seemed like every chance she got, she'd say oh, she'll be ok by 2010 or eariler. I just didn't argue or even try to set her straight...she was the ignorant one, it's 2014 and there's no end in sight yet. I just thought she was a better friend than that, and she has many,many good qualities and that is why we are still good friends...because if she was an ex-neighbor like yours or if she didn't have so many good qualities...c-ya, wouldn't wanna be ya...that's what I would think...but not say...I hope I'm a better person because of it! 

      My aunt told me a long time ago..when I was a teen...so, a LONNNNG time ago  hehe...she said, an educated person is one who doesn't ramble on about anything they are quiet and listen...haha! that's why when you see that person again...they run!!! LOL those tid-bits added are just my personality popping out! 

      So, June, I'm sorry you had that experience with someone you valued as a neighbor and one you could talk with...but it's her, not you.  I'll give you a cyber hug right now (  ).  I wish you didn't live so far away from me because it is always nice to be able to talk with someone w/o being afraid they will judge you because you talk about sickness.  But, the forum here gives us an opportunity to do so...so fire away, June...you know you have friends here smile

      Have a nice day!

      frustrated

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    • Posted

      Sorry about the delay, I was out quizzing yesterday evening till late. The actual science behind this is beyond me, perhaps Morag can help? However, what I understand is that those with Sarcoidosis produce a form of Vitamin D extra renally. All Vitamins, like cholesterol, come in differing forms and D, again like cholesterol, has good and bad forms. The D the standard blood test test detects is the renal D - and the extra renal D is the bad D.  Sarcoidosis suffers may actually show little or no D on testing. This happened to me. The person at the clinic who was seeing me freaked out when they read my blood test results and rushed to get the consultant who explained to them about the extra renal D, which is how I know about it. I believe the same problem happens with standard testing and calcium. I was adviced by the Brompton not to take extra calcium. But you have different health issues and if you can tolerate D and calcium then definitely take them! Di
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    • Posted

      When I first went to my doctor with all this and had a blood test, he called me to say he wanted me to take 1000mg Vit D  a day.

      Then when I started attending the hospital they told me to stop taking this.

      I must try to remeber next time I go to ask what the situation is.

      As you say it is all mind boggling.

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    • Posted

      Thank you for that info....I know about the renal D because every month I'm tested not only because of sarcoid but because of sjorgens as well as all the medication I have to take because of two accidents I've been in...broke my back and fracture in the neck and when they fused me the nerves didn't go back into the neuroforamen which doesn't happen often but it does happen...my doctor called it nerve "bundle"..lol made me laugh because he did charge me for a  bundle alrighty! Don't know if the UK uses that term...if not, in short, when you purchase cable TV you can also attach the internet to it as well as a landline phone and you get some kind of a deal for doing so...all three together is a bundle...jeessszzz it's almost 4 in the morning and I haven't slept much bc of the pain amongst other so excuse my lengthy writing...haha! did I even address what you said?  I believe I did but I got off the subject, kind of!  Thanks for listening and giving your input because what you know, I might not...so I thank you for that!
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    • Posted

      To be honest Linda I think it's down to lack of knowledge about the disease and she does tend to be very forthright and say what she's thinking (honest to a fault). It did obviously upset me yesterday but I find I am super-sensitive more these days so it is probable she meant it as a joke and I took it badly. I don't see her very often and she does have her heart in the right place, I just wish she wasn't so curt with her comments but I guess some people will never change. She obviously thinks enough of me to come out of her way to see me. The funny thing is, before I got sick and was living next door to her our paths barely crossed so when she asked if she could come visit me I was very surprised.

      I honestly do think she looks at me and thinks "I can't see anything wrong with her!" and I do get the feeling she thinks I should be working too but then she has strong opinions on a lot of things and to argue with her about them really is putting your foot into the lions mouth ha ha! I can normally get in a few digs myself but I must be losing my touch.

      I felt so guilty about being so upset over the neighbour with the cat that I was telling you about several weeks ago, I actually went over to her on Sunday past and asked her how she was and were we okay as regards the fall out. She came over and apologised and we had a good talk about everything that had happened and she agreed that in future if anything was upsetting her she would come and knock at my door and not lose her temper again. I learned a lot of things about her that I didn't know before and it somewhat humbled me. She lost her leg due to massive clots from her ankle to her thigh and also one that was right next to her heart. Having fought all that, her husband of 30 years walked out on her because he couldn't deal with her leg loss! Then because she had chronic Crohns Disease she ended up with an ileostomy which she has a terrible time with. Like me she can't get a social worker to come and assess her so she can get some help. All they did for her was to give her grab rails. How terrible is that? I can totally see why she is so angry no matter how misdirected it was (and she understands that now). It is so true what they say about there always being someone in a worse state than you are. It is so true. We must have talked for an hour and in that whole time she never once looked for sympathy. Quite the opposite in fact because she said she was determined not to use a wheelchair even though she is struggling. I have to admire her for that.

      Anyway I have to learn to keep my big girl pants up and stop being so emotional over everything. I'm going to search for the old 'Me' rolleyes ha ha!

      I hate arguments and how they leave you feeling. I feel terribly vulnerable in my wheelchair when people become argumentative and I do sometimes over-react although I was right to on that occassion. I am however glad I made the first move and got everything cleared up. I kept thinking of my consultant telling me to stop getting upset or stressed out over things as it was making my sarcoidosis worse and of course he was right.

      It doesn't mean that it's right to let people walk all over you but there are other ways of handling people who make our lives miserable!.

      I'm just so glad I have such lovely support from you and the other members who get why I am upset and who pick me up, brush me down and set me off again smile. I often wonder what happened to the original June. There are times I just don't recognise myself which just goes to show how illness doesn't just affect how our body is functioning but how we function and cope with things from day to day.

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    • Posted

      Oh June. So pleased you have overcome the neighbours issues

      As you say your old neighbour foes have a heart she just has a funny way of showing it and it seems like she tends to want to be the top dog  but albeit she is a little dogmatic at times she is also a bit of company now & again. So next time treat her with contempt she may get the message that you are not biting on her detrimental remarks

      Your neighbour now. So pleased to hear that the air has been cleared with her and it will be nice fir you to perhaps have a chat now & again probably be ideal for both of you

      It's a true old saying ' you never know what goes on behind closed doors'

      You certainly did discovered some of the things behind hers that's for sure !

      With all this behind you now hopefully you will get some harmony around you

      I am off to my GP this morning as when he rang me and called me in three months ago he said he wanted to see me again to check on things. As of course I intend the hospital clinics so no need to really go to GP so will be interesting to see what he had git to say.   I am getting badly swollen ankles again. But probably due to the heat

      I was sat most of day yesterday in my home office and I was in agony last night

      Take care x

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    • Posted

      Did think my tan from Cyprus would stretch this far...ha ha

      Although this looks a considerably darker colur than I actually have.

      But this was yestersday after sittling for possibly too long at a desk.

       

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    • Posted

      Hope you are feeling better now. There is no truer saying than "it's not what is said but the way it is perceived"  that I always work on! Sometimes people just don't think before they speak! Just because we don't have visible wounds doesn't mean we are impervious or insensitive to other peoples thoughtless remarks. I'm sure that's why I lost my job because the thought was that "well she looks ok" oh if only they knew eh?!  I am still waiting to hear from ENt but the way things are going this episode will have subsided before I get to see anyone!
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    • Posted

      Ouch, Linda...that looks painful.  I'm sorry you are having difficulties.  Good luck with your GP.  Do you take lasix or some kind of a water reducer?  Not sure what else to call it...lasix helps to relieve the swollen ankles...that used to happen to me at work...I do believe people can just get swollen ankles when they legs are bent and feet on the floor...do you?  I hope you get some relief!

      Frustrated

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