Sarcoidosis - not enough care and attention given to sufferers

Same with me, Linda...none are going to my home email address so I have to manually look everything up.  Yes, so frustrating!!

Hi,

Ironically I got your message notification by email.

Lets hope the erro is now rectified.

Fingers crossed.

 

Hi Linda ~

I didn't get any "email" notifications.  I've had to search out posts manually and that sux!  It's so time consuming and I'd rather spend time with results and answers rather than a hunt and search.

Anyway, thank you for your response.

Frustrated

Well I also. Got this email but no others that's assuming others have posted

Be interesting to see if I do get any other notifications

I've been getting the emails but been away with very limited computer access to post any comments. Hope you're all doing ok

Hi Morag,

I also got your email so hopefully te blip has been rectified.

Hope life is treating you well.

It will be good to get back on track with everyone.

Hi Linda ~

I've been in contact with Emis aka Alan and he's stated that all is fixed now and that it was universal to all of us.  All better now.

Frustrated

Hi Linda.

Yep me too, only got this one from you and Frustrated after your posting to Morag. Hope everyone is feeling OK. This weather really does not agree with my small joints and sore lympnodes.. I read on-line that lymphnodes should only be swollen and not sore.. Mine can be really painful and uncomfortable but not noticeably swollen ,  stabbing like pain under arms etc but they done all the tests possible (lymphoma etc) when I was first diagnosed early 2013..  I had to take couple of days off work last week, could not get out of my bed, literally and could not write or type due to multiple small bones in my fingers and hands were so sore .. Still tender, I feel much better now but could still sleep for Scotland. This fatigue is just not pleasant.. I have got consultants appointment in couple of weeks, so will see what she says.

Health and love to you all,

MM

Phew I am glad I wasnt isolated!!!

Sorry to hear that you have gone through a rotten time lately.

I am glad to say I am feeling ok at the moment. Apart from shortness of breath.

I am waiting for an appointment for a echo heart scan.

My husband and I went to Kos for a week in October and the weather was lovely and we compeletly chilled out.

Wishing you all a healthy winter ahead, as we have been lucky up until now with the weather.

Take care x

 

Thank you Linda

Holiday and late sun must have done you a lot of good. Glad you managed to get away. Us too in West of Scotland, weather has not been too bad, there were couple of rotten wet weeks but last weekend was exceptionally warm for this time a year. Winter has definitely arrived this week though.

Take care and long it may continue for you feeling great

Love, MM

Bless you MM77.

We all need a little reprieve now...

Hi Linda, I'm new to sarcoidosis, just this year, but I'm really interested to see you've been on holiday, my first major flare up happened in April after 3 weeks in the oz sun, it's taken a few months to find my enlarged lymph nodes as my x rays were clear. But my point is that I've read on American and Canadian sites that sunshine can be a trigger... All to do with vitamin d?? So I'm terrified now of even being in our sunshine. Did you suffer when you returned from holiday?  Has anyone else found excessive sun to be a trigger? So pleased you had a lovely holiday and are not suffering too badly at the mo x

Hi Shazarr and welcome.

It is funny that you mention the sun, as I have heard conflicting stories.

I asked my consultant and she said it was fine and probably good, as long of course that I put sun cream on.

When I first became ill my doctor put my on 1000mg of Vitamin D tablets, but as things progressed with investigation I was taken off of them.

Hopefully we can all get a bit of well needed sunshine.

Sorry to hear that it affected you, but maybe next time it may not, whoc knows with Sarcoid its all a gamble.

Hi there

According to my respiratory consultant patients with sarcoidosis fall into 2 categories: ones who are affected by the sun and ones who aren't. In some folk being exposed to the sun makes no difference. In others, like me, too much sunshine increases the levels of vitamin D in the sytem which in turns leads to an increase in calcium levels. If they are raised too high then you get problems associated with that, tends to affect the kidneys worst but there are other issues too. 

But even if you're one affected by the sun, what she said was rather than try to avoid it, which is pretty impossible and not good for you anyway, then just be careful much as you would normally do. ie sun cream if its particularly strong. It shouldn't cause any immediate symptoms, but you should be getting regular blood tests and if they indicate increasing calcium in the blood then is when action has to be taken. 

My calcium levels increased over the summer but not enough to require treatment and now its back to a typical Scottish November (think dull, damp, grey.....) levels are back to normal again.

 

Thats good to know, many thanks

I have to have monthly blood tests anyway due to the medication so I am fortunate in that way

Thank you so much ladies for replying, it's all so random isn't it? I definitely seem to be improving now the weather has turned, I am sorry for you guys who are worse in the winter  my docs have been great so far, I am just waiting on neuro tests now in December and then another respiratory check in January, but my GP is great if I have any flare ups or problems. It makes such a difference to have doctors we can trust. I wish you all a great weekend x 

I am worse in the winter, especially around January time, but now I am aware of it so can be prepared for it.

I too am very lucky with all my consultants

His shazzar 

i suffered when I came from holiday - I was great on holiday but when I returned about three weeks later I was really very ill and of work nine weeks 

at this point I never new I had sarcodosis - I new somthing was not right with my and I was having tests but nothing confirmed - 

and I don't like he sun still I avoid it like the plaque - I take vitamin d supplements - one of the signs of of low vitamin d is a hot head - I can put my glasses on the top of my head for thirty seconds and when I remove them they are full of water from the heat from my head - my hair looks a fk feels dirty an hour after I have washed it - I also take steroids - the sun for me also gives me migraine that can last up to a week if this happens I can not move - walking to the toilet is very painfull in my head - I honestly just stay in bed for a week curtains closed - no sound husband sleeps on the sofa - 😬 and in the winter I'm better so Christmas is my favourite time of year - I'm also very big now with the steroids about nineteen stone with is putting pressure on my joints 😤 just wanted to share x

So feel for you.  Your experience sounds awful. Had it been confirmed that these symptoms are related to sarcoid?

Glad that you are able to enjoy Christmas time

I actually get through it but then am totally exhausted from

January and this lasts about three months of fatigue 

Oh dear that does sound awful I've been told to avoid vitamin d supplements but guess everyone is different. I'm still undergoing tests but luckily for me no steroids yet. I'm putting on enough weight without steroids, I don't have the energy to do excerise at the moment x x

Yes I was told people with sarcoid have to have the vitamin d levels checked 

and mine is low I take 200 gm a day with 20 g steroid but I have just had a letter to discuss a different treatment but I like the steroids I feel normal 

- I can walk up stare - do my own cleaning - can not get up from the floor or out of a bath as I can not put the pressure on my rist but I don't feel down anymore - and I'm still working - I'm 47 in march I feel older but I am enjoying myself better now I understand what I can and can not do xx 

MM, you've described just how I feel with pain in lymph nodes & joint pain esp hand pains (((

how did you get on at the hospitals? I'm in the middle of lots of tests for my joint pains/ stiffness etc & due to have another nerve conduction test in a few hours. Dreading it as was so painful last time. 

How is everyone getting on today? I've missed quite a few messages & can be hard to catch up. Hope all is well xx 

Hi Cassy,

Sorry only just getting around answering just now. Busy family times.. Thank you I got on OK, consultant put me back on Naproxen too, still on the hydroxychloroquine, as she fears that I seem like I am going to have a flare up.. So just got the tablets few days ago.. My ACE levels in blood ( angiotensin-converting enzyme) had dropped from 100 odd last year to 40 in spring. I believe healthy is under 40.. 40 or over indicates active sarcoidosis..  I do feel much better over Spring-Summer , so naturally it is probably back to higher again.. I have not got results yet for the tests done  in Nov. My lymphnodes come and go with stabbing pain.. and the tiredness... Like I never get enough rest... and just want to sleep all the time.. Aches and pains in bones and joints .. The only problem with Naproxen is that it really hurts my stomach.. So what to put up with is the question x

Hope you are feeling much better and that your little one is not demanding too much just now

Love and health to you all

MM