It's been a while since I posted. Nothing major has happened but I still feel i am never ok. Skin remains well even if I got the tiniest bit of a tan line this summer despite all the cream I put on! But my throat issues remain. After being told it was not reflux, now they say it is (they reckon it's LPR which does not cause heartburn). On high dose of ppi meds but no improvement despite having the blandest diet ever and no coffees, teas or alcohol! I am dairy free too as it seemed to help with the mucous in my throat. Now however I have some sort of chronic pharyngitis and food/drink and talking make me cough or affect my voice. Mucus only comes after coughing fits.
Had chest xray and bloods but it does not seem like it is the lungs. Now being tested for allergies but not expecting anything significant from that.
My other issues are that I am currently a bit neutropenic (all the white blood cell indicators are low). Aparently this keeps reocurring regularly since 2012 based on previous blood tests but no reason why. And also the fact that I get episodes of being super cold. Unusually cold even indoors when others are adamant it's warm. Are these two things something you have experienced with UCTD? Or as part of your SLEn sjorgens etc? Being cold all the time makes me so down. I keep dreaming of moving back to Spain where I might need to hide from the sun (which I always thought it would be hard) but at least I would not feel so cold all the time! Is this a circulation issue? I often get so cold I get a feeling on sharp needles piercing my body when I touch my skin. That only happens when I am very cold. It's all so weird.
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Thereisalight
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I get similar feeling of cold. Horrible. But works for me are the heat patches from the chemist. I put one on middle back one on yummy. Gives me comfort and does help
Thanks. I resort to really hot baths to recover, hairdryer under bed covers and electric pads on my chair at work! It would still be nice not to be super cold all the time though! Luckily it's not always that I feel super cold to the point where it takes ages to warm up!
Hi dear. I'm cold most of the time. Apoarently due to hypothyroidism (even under control) or Reynaud's or APS .... that is my rheumy's opinion.
I'm sure there could be more causes for this but and maybe you were tested for those diseases before. If not, talk to your Dr about them and read about their simptoms just to check if matches with yours.
Those diseases sometimes are present jointly with Lupus.
Hi. I don’t get pharyngitis but maybe I get LPR, it’s hard to prove. I have read that PPI’s don’t really work for LPR in the way that they do for GERD. I have similar respiratory issues - mine is a combo of not having the strength to cough effectively and also I have Bronchiolitis (CT and lung function tests are needed to diagnose) so the mucus is deep in the tiniest passages making it hard to budge.
As for feeling cold - I’ve been having some terrible problems and I’ve not got to the bottom of it yet. If you want to read more, have a look at my recent posts. I’m about to start fluoxetine as a trial xx
Have you been tested for Reynauds? I have systemic scleroderma which often starts out with the Raynauds which is like having a whacky thermostat in our bodies. I’m cold all the time also. I also have pulmonary hypertension because of the scleroderma and inactive Lymphoma. My muscles are very weak now, and I’m nauseous 24/7. I’m also battling an iron deficiency. Be sure they test you for all the autoimmune diseases. I, too have the other symptoms you mentioned also.
Hey thank you for your reply! how do you test someone for Reynouds. I thought it was obvious if your fingers changed colour? I don't have the antibody for scleroderma and noone seems to think it is. I mentioned it in the past but they are all dismissive as I dont have heartburn etc. I only have anti ro antibody but docs only test me once yearly now and dont bother repeating ana etc unless anything changes. All other bloods are ok other than low blood cells. I am not on any drug for my CTD.
If you have SLE - It sounds like you're symptoms could be a bit similar to mine ? Getting cold - with a flaky immune system.
If you're immune system is taking a bit of a consistent battering from long term immune suppression - its possible you need to have you're medication load lightened a bit...…..but you're specialist also has to consider that low leucocytes, lymphocytes etc. could be a product of a flare.
You're specialist should be able to figure out what is happening and take the right course of action. Mine cut complementary meds like Mico in half - but upped my pred a bit - just to hedge my bets. My Immune system 'slowly' came back.
I also went cold - to the point of not being able to heat up - in 40 degree Celsius weather - as I also had a fairly full on iron deficiency at the same time as well. (still trying to figure out why) - But I'm having iron infusions while they try and figure it out.
Get yourself to you're specialist - just in case. Even slight dips in the white blood cells should be monitored and tended to.
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Why do I feel so awful all the time?! 
Resilience at an all-time low
I'm back in the room!! 
Those with raynauds help
Anyone being treated for CIDP (chronic inflammatory demyelinating polyneuropathy)?
