16 replies to this topic

[Jen Z]

I was diagnosed with Raynaud's as a teenager and recently diagnosed as a celiac in middle age. Now I also see that I am textbook for sjogren's.

I am trying to determine what neuropathy actually feels like. I have had a numbness/tingling issue in my left hip/pelvis that travels down to my foot when it is really acting up badly. It also occurs in my left arm when i am in a quiet, no fidgeting allowed sitting position. GP wants me to do a mri for lower back issues but I am holding off for a bit until I can fit more puzzle pieces together. When I do a mri, I want it done completely. I'm not spending the money to go back in. Get it right the first time is my motto. I also have tingly sensations on the back of my neck that make me think bugs are crawling on me.

SO on to the issue of my nighttime problems. I thought this was all raynaud's related but maybe it's not. My feet are always phenomenally cold at bedtime in the winter. I preheat my bedroom with an electric heater. I wear long johns under my night shirt and have upgraded from regular weight socks to wool boot socks- I am a sight to behold! Oh and now I am even wearing mittens to bed. Once I lay down, I get even colder. My body gets rigid as I curl up to stay warm. In the morning my muscles hurt from being so cramped up. I have trouble with the leg tingling so much at night that it's really difficult/painful to sleep on my left side. I have bad acid reflux so left side sleeping is preferred by me to keep the acid in my stomach. Between the coldness and the tingling, I am not sleeping well. Today I plan to buy an electric blanket. I moved form the NE US to the SE. It's not really all that cold here in NC.

Can you all give me your 'expert,' I live with this kind of thing, opinions? I love the information I get from this forum by reading past threads. By hearing real life experiences, I realized that my swallowing issues were sjogrens and not caused by reflux. Apparently I didn't use the proper 'terms' to describe my problems so that my physicians- GP, rheummy, eye, and dentist would know what I was referring to. Geesh, what's a girl to do?

[Aly1]

Hi Jen Z,

Your mention of the cold symptom is interesting and I'm curious to see if others write in about it. I've had pretty severe neuro issues for about a decade (have only been gluten-free for 3 months). Numerous times I'd have icy feet that I just could not warm up without a heating pad. The past two weeks I was glutened badly and I've been horribly cold; the other day I was wearing 2 long sleeve shirts, long underwear bottoms, jeans and was under 3 blankets and could Not get warm. When I checked our indoor thermometer it was 70 degrees! So although I've never read that anyone else has this particular reaction, it seems it's one of mine!

[Jestgar]

To address the 'cold' part of your question -

I have a heated mattress pad that I turn on before I go to bed.

I have a heated 'throw' at the bottom of my bed that I turn on when I get into bed (it heats up faster and turns off after 3 hours).

I have 2 down, and one light comforter on my bed.

I have micro-fleece sheets.

I'm a happy sleeper now-a-days.

[Gemini]

I was diagnosed with Raynaud's as a teenager and recently diagnosed as a celiac in middle age. Now I also see that I am textbook for sjogren's.

I am trying to determine what neuropathy actually feels like. I have had a numbness/tingling issue in my left hip/pelvis that travels down to my foot when it is really acting up badly. It also occurs in my left arm when i am in a quiet, no fidgeting allowed sitting position. GP wants me to do a mri for lower back issues but I am holding off for a bit until I can fit more puzzle pieces together. When I do a mri, I want it done completely. I'm not spending the money to go back in. Get it right the first time is my motto. I also have tingly sensations on the back of my neck that make me think bugs are crawling on me.

SO on to the issue of my nighttime problems. I thought this was all raynaud's related but maybe it's not. My feet are always phenomenally cold at bedtime in the winter. I preheat my bedroom with an electric heater. I wear long johns under my night shirt and have upgraded from regular weight socks to wool boot socks- I am a sight to behold! Oh and now I am even wearing mittens to bed. Once I lay down, I get even colder. My body gets rigid as I curl up to stay warm. In the morning my muscles hurt from being so cramped up. I have trouble with the leg tingling so much at night that it's really difficult/painful to sleep on my left side. I have bad acid reflux so left side sleeping is preferred by me to keep the acid in my stomach. Between the coldness and the tingling, I am not sleeping well. Today I plan to buy an electric blanket. I moved form the NE US to the SE. It's not really all that cold here in NC.

Can you all give me your 'expert,' I live with this kind of thing, opinions? I love the information I get from this forum by reading past threads. By hearing real life experiences, I realized that my swallowing issues were sjogrens and not caused by reflux. Apparently I didn't use the proper 'terms' to describe my problems so that my physicians- GP, rheummy, eye, and dentist would know what I was referring to. Geesh, what's a girl to do?

The cold extremeties are from Reynaud's. My feet are always freezing but funny enough, they don't seem that cold to me and it doesn't bother me. When my feet brush up against my husband, he jumps. My hands are always cold too but they don't blanch white that much anymore since I have been gluten-free. But the coldness remains. It is my new normal.

I don't go to doctors about these things because they can't do anything about it.
I have Sjogren's and Reynaud's and just use Biotene mouthwash for the dryness, drink plenty of water to stay hydrated and chew gum disgreetly to promote saliva production. Not much else you can do, unfortunately. You will have swallowing issues with Sjogren's so cut up your food small and keep water available to help get it down. You'll find ways to combat the symptoms that work for you.

[Kamma]

I've always had cold feet and hands but in the last few years it has gotten worse to where I am much like you: dressing up to go to bed. In the day, my bare skin feels like an ice pack is placed against it.

Regarding the pain up the left arm, I get something similiar where it feels numb/dead like. Also My hands falls asleep when I'm holding a book or the phone.

I'm one week into begin gluten free after going for the blood test. At this point I don't notice much difference except the deadness in my left arm has gone.

Hope this helps.

[Metoo]

My sister 'has' Raynaulds and she sounds exactly like you. I am convinced she has celiac but refuses to get tested for it. Raynaulds can be a secondary disease to celiac.

[auzzi]

Raynaulds can be a secondary disease to celiac

Raynaud’s Phenomenon is more likely to be a symptom of an autoimmune disease like rheumatoid arthritis, scleroderma or lupus.

Raynaud’s disease is a primary disease that anyone can have - coeliacs included.

[AVR1962]

Have you had your vit levels checked? Because of the tingling I wonder if it could be linked to your B12. I was having funny crawling sensations on my legs, nose and cheeks. Kind of felt like I had a hair that was not there or like some bug was under my skin but I would look in the mirror and nothing was there. I told my doc about it and he looked at me like I was crazy so I researchd it on the Internet and found it was linked to a lack of vit D. I started taking vit D and it went away.

Good to hear that I am not alone as far as being cold. Even my friends question my inability to hold heat. I thought it was possible thyroid issues but my tests are fine. I am like you all have mentioned here and have never known why. It is good info and I will look up Raynaulds Phenomenom.

[eatmeat4good]

I wear two pairs of wool boot socks...in the summer.
I'm not kidding.
I am freezing all the time.
Wool socks are wonderful.
I have two wool blankets, a space heater, and if it's really bad and I'm chilled to the bone, I throw a blanket in the dryer and get it good and hot and then wrap up in it.
Sometimes if I'm lucky my son will do this for me after the blanky cools down. A true sign of love.
My thyroid levels are fine so they say. I have Hashimoto's though.
I've been known to use a blow dryer on my feet to get them warm.
I should just get an electric blanket huh?

[Reba32]

I have cold cold cold feet and hands too, feet mostly, and I just can't warm them up, doesn't matter what the temperature is in my house. I went to a rheumaologist with my laundry list of symptoms, and she said it can't be Reynaud's because my feet and hands are not blue I read somewhere that not even half of patients have blue extremities I do get the blotchy look though when I go outside and get *really* cold.

I just wear thermal socks, and big fluffy slippers, I stick my hands in my armpits when they get really cold, and try to get my dog to sit on my feet when I can, his normal body temperature is about 101F

[lil'chefy]

I have cold cold cold feet and hands too, feet mostly, and I just can't warm them up, doesn't matter what the temperature is in my house. I went to a rheumaologist with my laundry list of symptoms, and she said it can't be Reynaud's because my feet and hands are not blue I read somewhere that not even half of patients have blue extremities I do get the blotchy look though when I go outside and get *really* cold.

I just wear thermal socks, and big fluffy slippers, I stick my hands in my armpits when they get really cold, and try to get my dog to sit on my feet when I can, his normal body temperature is about 101F

I am also always freezing, as my mother is too. We both have reynauds. I dont know if that has anything to do with the coldness, but I am Gluten-Free for a month now, and am getting colder:-( It's honestly freekish how cold I get. My husband got me an electric blanket. That helps. We have a hot wood burning fireplace in a small room. That helps. Sometimes, I get so cold that I can't move. When that happens, I talk myself into a warm bath, which I slowly make my freezing way to. A hot bath is great! When you get out it sucks more than before you got in:-( Thermal and wool socks make my feet sweat, and cold wet feet just arent my bag. If I had to bet on it, I would for sure say that these constant shivers are somehow gluten related.

[AVR1962]

For those who have been dx with Raynaud's, I have a few questions. From reading on the Internet it looks to me like there is no solution except to watch your exposure to cold? What did your doc say?

I am just wondering if this is worth mentioning to my doc. I have lived this way for over 20 years. If I get chilled I will be under the covers fully clothed for hours before my body warms up. It can be mid 40's outside and I will be wearing gloves and my finger tips will go numb, or my toes will go numb, and it's not even cold outside. When I get into a hot tub of water it actually feels like my feet are thawing. My solution is to wear alot of clothes, layers and lots of hot water!

[domesticactivist]

We have a bedwarmer, too. I was afraid of it because I was scared of it being a fire hazard, and I also have sensory issues so feeling the lines running through it bothers me a bit. But it is SO worth it! We turn it on a bit before getting in bed, and I can have my side on without heating up my partner's side of the bed. I try to turn it off or at least way down before I actually fall asleep. Between the bedwarmer, our house finally being insulated, and several down comforters, I finally can sleep.
ftr, I don't think I have Raynaud's (never evaluated for it) but it does run in my family and I do tend to be cold all the time.

[Jestgar]

I was out dealing with the chickens when an ice cold rain started. I was only out in it for maybe five minutes, then a few more minutes after it eased up to finish what I was doing and lock of the birds. That was several hours ago. I'm dressed (now) in fleece pants, a fleece top, a fleece jacket, been wearing my warm slippers and I'm still a block of ice. I've just made more coffee and I'm tucking myself under fleece blankies and throws to see if I can un-numb my hands and feet.

No comments necessary - I just had to fuss for a minute.

[Gemini]

For those who have been dx with Raynaud's, I have a few questions. From reading on the Internet it looks to me like there is no solution except to watch your exposure to cold? What did your doc say?

I am just wondering if this is worth mentioning to my doc. I have lived this way for over 20 years. If I get chilled I will be under the covers fully clothed for hours before my body warms up. It can be mid 40's outside and I will be wearing gloves and my finger tips will go numb, or my toes will go numb, and it's not even cold outside. When I get into a hot tub of water it actually feels like my feet are thawing. My solution is to wear alot of clothes, layers and lots of hot water!

Being cold all over is not a symptom of Reynaud's, that is more in line with thyroid disease. Reynaud's will cause blanching and numbness in the hands and feet. I also have that happen with my feet when I get into a hot tub....it feels like they are defrosting.

I exercise twice a week at the gym and that really helps warm up the toes and fingers. However, after going gluten-free for awhile, the symptoms I was having dramatically improved. I no longer have to wear gloves when I grocery shop in the freezer section. The blanching, whiteness and numbness only occurs when it's freezing outside and it only happens on my middle finger (of all fingers!) at the very tips. I would say it's about 80% improvement with the gluten-free diet.

I was never evaluated for it. I went to the doctors and was listing my autoimmune problems when my hands went extremely white and then red when the circulation came flooding back. As she asked if I had been diagnosed with it, I just looked at her and raised my hands to show her. Who needs a doctor when something is so obvious?