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Intense cold sensations & numbing

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Fibromyalgia
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Posted 12/1/2020 5:42 AM (GMT 0)
Hi all,

I am in the process of getting diagnosed by a neurologist. MRI's and blood work are normal (glucose and CBC, lyme) so they ruled out MS and other autoimmune diseases. I am going to get tested for small fiber neuropathy. Fibro is an option.

Is anyone struggling with intense cold sensations on the skin that occur daily and mostly randomly? I'll suddenly feel like several body parts are placed in a freezer and I'll have chills/shivering for a few minutes at a time. I noticed it's worse when I touch cold water or it's even slightly colder outside. I have never heard of this before and have not seen this symptom online. I also have numbing on many body parts 24/7.

Does this sound like it fits Fibro?
Posted 12/3/2020 9:37 PM (GMT 0)
Hi, Jane, and welcome! I am so sorry that I’m getting to you so late but I’ve been extremely busy the last few days. But I did want to get to you.

I get cold spots on my skin and sometimes hotspots too. I’ve even felt like water was running down my leg but, of course, there was none. It doesn’t happen very often but it does happen. I do not have sections of my body get cold and numb. I have not heard of large areas of the body getting cold and numb on this forum but that doesn’t mean it couldn’t happen. Fibro is a really strange illness and, yes, doctors are now thinking that fibro could be a neurological problem. I am sure you will find out more from your doctor.

Be sure to read Fibro 101...the first thread on the forum. There is a lot of good information there and you just might see yourself there. There are also helpful suggestions as to how to deal with this illness..

I’m looking forward to getting to know you better and don’t hesitate to ask questions. We do try and help you on this form. I hope to hear more from you soon. Do you let us know what you find out from your doctor because we do care about you.

Sherrine
Posted 12/20/2020 1:20 AM (GMT 0)
Hi Jane,
This is my first post and I would like to add that I totally get you. I get the random cold spots too. They can be very intense as if somebody is putting ice on me. Right now I am feeling it in all my toes. The rest of the body is normal. Other times my face feels weirdly cold. It is very difficult to explain.
I have been having unusual symptoms for many years.
I have been to many doctors and have had a number of tests but on paper I always had a clean bill of health.
I have been tested for MS, Lupus and other rheumatological diseases and doctors say all is fine. In the past I had random electric sort of currents running through my body. My legs have felt like heavy bricks, where I found it difficult to walk. Fatigue would hit me and last a few days. This past winter I had pain added to my list of symptoms as well as tinnitus. This time around I was diagnosed with fibromyalgia because nothing else could explain my unusual symptoms. The rheumatologist called it CENTRAL CENSITISATION SYNDROME.
As far as the intense cold feelings are concerned I believe that people with fibromyalgia have major problems regulating their body temperature.
I don't know if I answered your question but I hope in some small way I helped.
I am so happy I found this wonderful forum. You all sound like a lovely and supportive community.
Posted 12/20/2020 1:48 AM (GMT 0)
Hi , ive also felt numbing and coldness in my hands and feet. all the time. almost like the blood just STOPS circulating in them. and when im sleeping i need to wake myself up and turn over several times a night as it feels like all the blood as moved to one side of my body. so weird. Is this what you mean ?

I haven't been officially diagnosed with Fibromyalgia yet. Still waiting on an appointment with a rumatologist. Ive had symtoms since i was 14 and my family doctor thinks I probably have it and put me on lyrica.
I didnt realize I should have mentioned this to my neurologist when i spoke with him last month ! I get chronic migraine and thats why I was talking to the neurologist.
Posted 12/21/2020 12:32 AM (GMT 0)
Hi, Beautifulgarden and welcome! Are you a gardener? I sure am. My back yard is a huge garden with paths of grass meandering through it. I find the movement helps loosen the tight muscles and makes me feel better. I generally can work around 45 minutes at a time. I sure don’t want to overdo things.

I’m glad you found us too! Be sure and check out Fibro 101...the first thread on the forum. There is a lot of good info there.

I’m looking forward to getting to know you better. I hope to hear more from you soon.

Sherrine
Posted 12/21/2020 12:49 AM (GMT 0)
Hi, Crazycatlady, and welcome! I’ve had cats for over 50 years even though I am allergic to them. My last cat went to kitty heaven and this is the first year I haven’t had a cat in the house for Christmas. 😟. But I do have a sweet Havanese pup to keep me company.

You might want to check out an allergist about your migraines. I have a friend who has suffered with chronic migraines all of her life and one was so bad they thought she was having a stroke and they life-flighted her to the hospital! She finally tried seeing an allergy specialist and she was allergic to not only outside influences but also foods! She is allergic to wheat and rice, things like onion and garlic, lemon, and absolutely no pork products. Since she cut those out of her diet, she can get mild headaches but not the horrible migraines and the headaches are few and far between. She is on medication now so she can have an occasional sandwich and small amounts of things she is allergic to. So this is a thought for you.

Be sure to read Fibro 101...the first thread on the forum. There are links to information that might help you with fibro.

I’m also looking forward to getting to know you better. It’s wonderful to be able to not only understand what the members are describing but also to be able to help each other. I hope to see more of you soon.

Sherrine
Posted 12/29/2020 3:19 AM (GMT 0)
Hi Sherrine, thank you for welcoming me to this forum. It is so nice to be at a place where people understand.
And yes I am definitely a gardener. I absolutely adore my garden. Unfortunately I can't spent as much time as I would like in it .I am learning to pace myself. I find that if I over do things I will suffer from severe fatigue for days afterwards.
During our long lock down because of Covid, I bought myself quite a few indoor plants. Now I am surrounded by beautiful greenery inside my house as well and I am loving it.
I have checked out Fibro 101...and find it very informative. Thank you again.❤❤❤
Posted 12/29/2020 2:52 PM (GMT 0)
Hi I am new on here, first time posting & I have the chills in feet and hands feel like ice berg. I used to think it was due to , low iron as was taking supplements, but I was recently diagnosed with fibromyalgia so not sure now. Thanks for info, on here it's so useful. Hope everyone is doing ok.
Posted 12/31/2020 2:04 PM (GMT 0)
Hi, Kerry, and welcome! It’s my feet that are always cold and I live in Florida! Do check your blood pressure too. A friend of mine has low blood pressure and she was always cold...especially her hands and feet.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you just might see yourself there.

I’m looking forward to getting to know you better. I hope to hear more from you soon.

Sherrine
Posted 1/18/2021 12:11 AM (GMT 0)
Hi sherrie , Thanks for your reply I am only just seeing this.Im in the UK. Florida I could do with some sunshine! I was told cold feet & hands is down to being anemaic.

I have been looking, through the sight & seems like a real treasure , chest of info on fibro here 😁👍.Im aiming to , try & get my sleep pattern better.

I have had a look through fibro 101.I am still working through , the emotion of grief & having to quit my career , or at least do a severely slowed down version.So much to consider .Hope you doing well 🌈
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