feeling the cold!: Hi all, I think I... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

9,035 members4,399 posts

feeling the cold!


Hi all, I think I wrote about this a few weeks ago when we had a tiny cold spell, but now the cold is here for good (probably) I am shocked by how I just cannot tolerate it. This morning, I was about to take the dog out just when my friend rang, the heating was just going off so I sat on the sofa with the dog and a blanket, was wearing several layers already but it just wasn't enough. After only about 20 minutes I was not only feeling cold but intensely tired, headachy and generally ill.

After the call I had to curled up with the dog and slept for about 2 hours. I woke up with the best part of the day gone and not feeling much better. Just inside the tip of my nose now has a permanent sore where it's constantly running because it's constantly cold. We've only had a couple of days of frost, I can't imagine how I'm going to survive the winter!

7 Replies

I find that I have several weeks where I have what I call flu like aches and pains and then something changes and they are gone for a bit. I have been told by rheumatology that people with autoimmune diseases can go through ups and downs - and to be careful not to overdo things to get into boom and bust cycles. The flu like aches and pains are not triggered by the cold, they either turn up by themselves or can be caused by overdoing things - carrying heavy stuff, doing too many exercises for example. I do also get cold and find it hard to warm up - I can sometimes have the shivers while lying on the sofa under a blanket in a warm room - as in 70F. The thing that helps then is a hot water bottle - not just conserving my heat, but heat input - and then maybe ten, maybe twenty minutes later - something kicks in and I'm too warm and throwing off the blanket. (Sometimes just having a nap is enough - shivering as I go to sleep, waking up too hot half an hour later.)

Brychni in reply to Poppy221

Yep, sounds like me; once I've thawed out I complain it's too hot. . I have Inflammatory arthritis and what you describe with the flu like aches is a very classic symptom. Starts in back of my neck and head with me.

Poppy221 in reply to Brychni

Joyous. :(

before you get into bed turn on the electric blanket, there is also gloves that have heat you can buy them on the internet, aquaphor gel is great for healing also if your in pain wild lettuce extract from mt rose herbs or ebay try it and let me know how it works for you. i take it for my scleroderma.lupus. love julie

Bought my first electric blanket a couple of weeks ago. Bliss

hot water bottles, warm bath, turn up the heat or fire place try to keep it warm the more cold the worse tissue damage can happen. there are meds for raynaud's but i warn you the side effect for me was not good prazosin, cellcept, slindelifil, etc but i am taking the wild lettuce and the pain is gone. good luck love julie

Heard the mycophenolate aka cellcept can cause bad side effects, just wanted to say that for some people it is OK so potentially worth trying. I was put on a gradually increasing dose to minimise the chance of side effects and all that happened was when I started, and on the dose increases, I had loose bowels for a couple of days which went away. I'm on a lot of medications so you can't absolutely separate out the effects, but a year and a half on from starting cellcept and hydroxychloroquine I'm doing very well with a gradual decrease in inflamed tendon symptoms over the period. These days my hands are moving freely - still tight on the back but no longer have really sore joints and almost as good with my feet - though I think podiatry have also helped there with the right stretches and insoles. It is really worth getting to see occupational therapy and podiatry as the right exercises, stretches and physical aids do contribute - it's not just medication.

You may also like...