LUPUS UK
21,686 members17,179 posts

Is this just Lupus or something new?

Hi,

Over the past few months I've developed some new symptoms and I can't decide if they are from my Lupus or if they're from something new. I'm hoping someone here notices a pattern or recognizes these symptoms and can point me in the right direction. I'll apologize now for the length of the post

First, I have become very cold sensitive. If I get cold I cannot seem to warm back up. I don't mean just chilly, I mean that I am so cold it takes me hours to fall asleep at night. Example, I've been trying to walk in the evenings with the hopes of regaining lost strength. If it's cold (around 40-50 degrees-I'm in Alabama so that's cold to me) I always dress warmly. When I come back in I can't get warm again. I'll take a warm shower, cover up in my chair in front of fireplace and am miserable. Our house is very warm, everyone else will be in the room wearing shorts and I'm under 3 layers. In bed I'll have a comforter, electric blanket with another cotton quilt on top. I laid there for hours curled in a ball absolutely freezing. Ended up having to put another super-thick fleece blanket on top to get warm enough to sleep. My husband is laying by me under a bed sheet and is fine.

This is concerning bc I also have Addison's Disease and when my body gets stressed it causes problems with that. Ironically I'm also very Heat sensitive too:)

Other new symptoms are dry eyes, skin is super dry, lips stay dry and crack even though I use moisturizer and lip balm.

I've also developed an odd, dry cough that comes and goes, shortness of breath that comes and goes and pain in my lungs close to my back. I will say that I have had pleurisy before and I'm almost sure that's what the lung pain is.

I have a history with dry skin/hair and some dry eye issues from the Lupus but it all has seemed to get worse. I just can't decide if these are just fun, new Lupus problems or if there's something else going on.

7 Replies
oldestnewest

Hey there Bmagrl :)

Pre diagnosis I used to get super cold, be wrapped up in pj's, dressing gown, many layers of socks, quilt and heated pillows! I also suffered a lot of dry skin, not helped by hospitals which seem to always seem to dry out my skin..

This was actually mostly because of an infection I was suffering.

However it could be something else for you, like a chest infection or some other kind of illness. Bring it up with a doctor, they can figure out if it's Lupus being weird or something else by checking some bloods. Also check with your specialist! All chest pains are considered urgent to check, even on healthy people

Take care Xx

1 like
Reply

Hi Penguintaz,

Thank you for responding! I've always had trouble getting warm after being cold but this was so extreme that I was shocked.

I decided to call my Rheumy this morning bc, on top of everything else, the joint pain went through the roof last night after I had posted the question. I'm used to joint pain but this came on in right knee in the span of 20 minutes and 30 minutes later it was in pretty much every joint of my body. I've never had it come on that quickly and definitely not that severe.

My dr is great so I'm just going to email him a list of what's going on and go from there

Thanks so much!

Reply

Hello,

Sorry to read you are suffering all these distressing and unpleasant symptoms. Feeling very cold could be due to many unrelated/related causes.

I felt very cold around last year and had difficulty getting warm. Thyroid hormones are responsible for boosting metabolism. Check out your T3/T4 levels with a blood test as you could be suffering with hypothyroidism. Thyroid hormones help with boosting one's internal "furnace" and vital metabolic pathways.

With SLE note that any gland can be affected and your thyroid hormones maybe running low, I'm on 50 micrograms levothyroxine which has helped with the cold sensitivity but it gets bad at night. Get GP to do T3/T4 blood levels promptly.

Regards,

phillippo

Reply

Hi Bmagrl,

Have you discussed these symptoms with your doctor?

I'm not medically qualified so I cannot say for sure what the cause of these symptoms could be, but it is not uncommon for people with lupus to also experience/develop secondary connective tissue diseases.

The dry eyes, skin and mouth that you mention could possibly point towards Sjogrens syndrome which you may wish to be tested for. You can read more about this at nhs.uk/conditions/sjogrens-...

Your difficulty in warming up could possibly be attributed to something like Raynaud's phenomenon. Do you experience any circulatory problems with your fingers and/or toes? You can read more about this at lupusuk.org.uk/coping-with-...

3 likes
Reply

Hi Paul,

I haven't discussed them with him yet. The dry skin has always been an issue but all the rest have come about since my last appt which was in early December. I was planning to wait until my March appt but the lung thing is concerning. Added to that I started getting some severe leg pain as well as swelling in both legs last night so with it as well as the lung thing I'm calling him this morning.

I had thought about both Sjogrens and Raynaud's but haven't taken the time to really research either. The Lupus by itself is overwhelming and things come and go so I haven't made it a priority. I do have a few people in my extended family who have been diagnosed with Sjorgens so I'll mention that to the doctor.

Back when I first got sick I looked into Raynauds bc I've always had issues with the cold but, at that time, I was diagnosed with a severely low Ferritin level so it was blamed for the cold sensitivity. After that I was diagnosed with the Addison's and then Lupus so it's really hard to decide which illness is causing what:)

I will use both of those links you posted and do some research on my own. Thank you very much for those and for your response!

2 likes
Reply

Oh Bmagrl,

I am concerned for the swelling and pain! I hope they can see you soon Xx

Reply

Hi there. I have exactly the same response as you describe to cold - even when others are toasty. I live in Scotland though but I get this even in warm places when I’m flaring. I also have many other symptoms of autoimmunity such as balance issues and high inflammation, digestive disorder, very dry skin, kidney problems etc. In my case it’s all felt to be Sjögren’s related and in Hypothyroid too with Raynaud’s, relentless cough, chest pain, sinus issues, hearing problems and neuropathy.

The Sjögren’s accounts for all my symptoms and signs from the feeling of intense cold abs occasional burning limbs (small fibre neuropathy and autonomic dysfunction) to the other stuff, particularly dryness.

I’m equally focussed on Sjögren’s as you are on Lupus so tend to blame everything on it because it’s such a foul disease which goes way beyond dry eyes and mouth for me. I’ve given up on wondering if I have additional autoimmunity, such as MS, just now. I just blame the systemic autoimmune disease I know I do have. Treatments are the same anyway and there’s so much symptom overlap. X

Reply

You may also like...