Scleroderma & Raynaud's UK (SRUK)
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My first blog, I promised myself to save my complaining for here where it is safe and no one will chastise me for it!!!!!

I feel guilty and ashamed for complaining, It's hard to think how I can survive when I am always cold and lately get and average of 4 to 5 hours sleep if I am lucky.

Sometimes, I get so cold in addition to the cold hands and toes. I think it started really bad about 4 years ago when I was 41. I think that it is a hormonal thing that also exasperates my condition. I started to get the cold nose and cheeks that is feels like constant lite tingling. Than that started to come and go and I developed this rotating wave of coldness. It makes a continual round from bicepts to thighs and in between my breasts and continues cycling.

Two days ago I just couldn't take the cold and my honey said we couldn't afford to turn on the heat. (He lost his job and is on unemployment). I just broke down and started bawling.

I get mad at myself , "Why can't you be more optimistic like those other girls? Your such a baby ?

I am sssssooooooo tired of being cold and not having sleep!!!!!!!!!!!

What gets me mad is that we are just pretty much left to fend for ourselves!! Not enough of us sickos to get world wide attention and research so no one knows a lot about this raynauds. So yeah, I should be grateful I don't have MS or cancer etc. etc. but how can I enjoy what life I have left when I never get warm and never can sleep. I also average a menstrual about every 18 months. So I know it menopause issues also.

I try to layer but my legs swell up so much so any short socks make my leg swell up and tights and pantyhose dig around my waist. Maybe I will search for a one piece historical petticoat (I'm Victorianally obsessed). I would be a fun excuse to make something historic and I could wear it under my cloths and feel connected to the Victorian past. Maybe make out of merlo wool with a little bit of stretch and perhaps underline it with thinsulate.

Speaking of obsessions, I have this bad habit of twisting my hair since I was a baby. My mom said I was twisting my hair at 3 months. I was going to try to start making bobbin lace to see if that might help me.

I also worry how to dress fashionably appropriate at the office when I start working as an accountant because people are so caught up in looks and looking like everyone else.

I am learning how to shut my mouth to others and not complain since everyone hates whiners. I started to realize maybe that's why I don't have too many friends. So I thought maybe I should complain here and too my social worker.

All I ever hear is people saying stop complaining your so pessimistic, I say "What do you want, I am Jewish and it's in my blood." But seriously, God might not hear me if I stopped whining. O.K. O.K. I just thought I would try to get a laugh from some of you guys.

I forgot to say, I am trying to work my way up to eating 3T of Extra Virgin Coconut Oil its suppose to help increase your metabolism and I do feel a warming rush a little while after I eat some. In fact that is what helped me stop my cold spell a few days ago.

Well, God bless you all and anyone of you can complain tome at anytime.

Tell next time,


3 Replies

hi dancetz ! hey I would be feeling like you if I was feeling cold all of the time and not getting enough sleep !

Is your raynauds being controlled medically ? are you taking any tablets for it ? I would go and have a chat with your GP, as well as take a look at the raynauds and scleroderma association's website for some tips and info

I am on my 16th year of the raynauds scleroderma journey, so I understand a little about what you describe ! It can be difficult for others, especially those close to us, to forget or not understand fully how it feels to have this diagnosis, especially when your outer appearance looks ok to everyone ! as well as there being good days and bad days with no prior warning as to which one it will be !

However, upon waking, I try and make a conscious effort to say 'something wonderful is going to happen today' to myself, as opposed to the easier option of 'here we go again, trying to keep warm and not feeling well' haha

I have stopped beating myself up that I can not go out in the cold, and try to distract myself by doing things that I like to do and which make me feel good ! This usually involves listening to - try it out !

In relation to you appearance at work - get layered up as it is not worth feeling cold, and I am sure that most people a. wouldnt notice, b. would understand given your diagnosis (an opportunity to raise awareness perhaps ... ) but ultimately - those who care, do not matter and those that matter, will not care.

I hope this helps, and you are feeling better, and doing everything you can to be kind to yourself with this diagnosis :) xx


Thanks I will look into those things.


It's ok to vent here - you''ll more likely than not find at least one person who can relate. Good luck!


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