freezing cold

[Emacosta]

I’m always cold specially my hands and feet but last night and today I’m shivering a lot . Is anyone feeling the same or felt like that before.

[Dizzytwo Moderator]

Hi, could be bad circulation. Mine is. You may think about letting your Doctor know when you see him/her on your next visit.

Momo

[Emacosta in reply to Dizzytwo]

I have tho and had some blood tests and everything is fine tho but there’s a lady here with fibromyalgia and with the same problem. Thanks mate x

[Gigimama in reply to Emacosta]

Did your doc check your thyroid levels, including tsh, free t4, free t3 and antibodies? Your levels may be fine but worth a check. I’ve had FM for over 30 years and I do have episodes of temperature dysregulation. I understand your frustration! All the best to you ☺️

[Emacosta in reply to Gigimama]

I will ask for that my dear. Thank you

[Blue-52]

hi, yep I’m the same, my doctor doesn’t know what causes it, other than my waste muscles, but they do say with fm our thermostat doesn’t work properly, some are really hot, and like us freezing .

[Emacosta in reply to Blue-52]

thank you my dear.

[Dinkie]

Ah the dreaded WTS (wonky thermostat Syndrome) sometimes I need a coat when its tropical outside and sometimes I'm in a tee shirt when there's snow on the ground. Fibro the condition that just keeps giving🙄😁

[Hidden]

I have lupus as well as fibromyalgia, my hands and feet go blue even when I’m abroad it can be painful, it was this condition that got my diagnosis of lupus, just a thought because they r all connected

[Emacosta in reply to Hidden]

yes that’s right! I had blood tests for lupus they came negative I recently did more blood tests with fibromyalgia has the specialist want to check if I had anything else but they all came negative I’m not sure if he asked for lupus tho I need to check. Thank you 🙏

[Jasmeet12]

Morning Enacosta,When my body has gad enough and everyone else is in shorts i can be sitting the fully deessed, with my dressing gown on and a blanket so yes, but not all the time. Once ive slept i warm up. I dont know if this helps?

[Meditationlover]

Ho, yes, I really feel the cold, and have to use a heated blanket frequently. Never felt this until fibomyralgia

[Maud-ie]

I am always freezing cold. Dead hands and feet. I have Reynaud 's Syndrome. My legs feel like they are running with freezing cold water and I wear roll neck lambswool jumpers and gloves at 20 degrees Celsius. It does make life and getting dressed difficult.

[E3178]

I need tropical temperatures before I wear light clothing. Friends don't get it.When I feel comfortable everyone opens windows. Raynauds and fibro probably circulation as well.

[Whiteclouds]

hi I’m cold and shivery most of the time my body temperature is often below normal I also suffer with fibromyalgia and have gall stones waiting to see a consultant as have a lot of pain

[Blueoxo]

Hi Emacosta, I too have cold hands and feet, the only time they are warm is in the summer when it’s above 20 degrees. Bad circulation has already been mentioned and this is something I have experienced in the past. I also have underactive thyroid and pernicious anemia so not sure what the underlying cause is. I don’t shiver though so it would be worth speaking to your GP and to see if it relates to bad circulation. In general I do seem to feel the cold more than other people, often my partner insists that it’s not cold when I feel it is 🤷‍♀️

[Blearyeyed]

Are you taking any types of medication or supplements, not just for the Fibro that might be making these symptoms worse?

[Emacosta in reply to Blearyeyed]

Gabapentin and sertraline darling. Thank you

[Blearyeyed in reply to Emacosta]

Reading other replies I can see you have been checked for lupus and you plan to get thyroid tests which is a good idea.Unless you have just started one of the drugs you are on and when the shivering started it probably isn't a side effect of your medication.

There are other things that can cause these sorts of temperature deregulation symptoms , and other autonomic nervous system symptoms like, poor sleep , dizziness , Fatigue , digestive issues etc. These are vitamin or mineral imbalances and they can be easily tested and treated simply.

Request for your GP to do a full blood count and Ferritin and Iron count , this is to help rule out Anaemia .

At the same time , Request Vitamin B 12, Folate , Magnesium and Vitamin D tests.

Particularly, low , borderline and deficient Vitamin B 12 and Folate levels can cause lots of symptoms that effect the autonomic nervous system, heart , breathing and circulation.

They can cause sweats and chills off and on through the day, Fatigue , pain especially on exercise, dizziness. Palpitations or physical feelings if anxiety with no apparent cause , brain fog and bad coordination, blood pressure issues, tremors, thyroid imbalance , breathlessness, weight gain in unusual places , insulin imbalance , numbness and weakness in the muscles , migraines , insomnia , reduction of muscle size in the upper arms and legs.

Part of the reason that these do this is that low or deficient B 12 or Folates also cause malabsorption, or less absorption , of the other nutrients we need from food and reduce how well we absorb our medications . So they can be the reason you have Anaemia or Vitamin D deficiency as well if you keep getting these deficiencies or they aren't improving with supplements.

Good News is if you are low or deficient in B vitamins the treatment is simple and takes effect very quickly. If you are deficient in B 12 they can give you oral supplements or injections to build it up again. Folate deficiency is treated with oral supplements or infusions . If you are borderline or low you won't be offered injections but it still might be too low for you so it is worthwhile starting B 12 and Folates oral supplements yourself , but , don't start them until after you have the blood test. And, if you already take a multivitamin or B 12 don't take it for a week before the test as it could make the test inaccurate.

If you symptoms continue despite having a normal Serum ( Total) B12 blood test go back to the GP and request an Active B12 blood test as this test only counts the useable B 12 in your body not the total in your blood , and sometimes the problem can be that your body isn't converting the B12 in your blood into its useable form to do the jobs it needs to do. If that is the case , you definitely need injections . You also need injections with Pernicious Anaemia or B 12 or Folate deficiency anaemia. Believe me , the reversal of many of the symptoms linked to these deficiencies feels miraculous.

Vitamin D deficiency can also cause similar symptoms and again it can be treated with oral supplements and improves over a number of months as your levels rise.

Magnesium deficiency can cause sweats , restless leg syndrome, tingling and numbness in the limbs , hands and feet, an oral supplement at night can help improve these .

Final test to request is Kidney Function , or Electrolytes ( Sodium / Potassium) . Salt imbalance can cause lots of autonomic symptoms because it is essential for sending messages between the brain and body and through the nerves. If sodium or potassium is too high or too low it can cause shivers, tremors , sweating, confusion, brain fog, fatigue , pain and diarrhea or constipation,

Salt imbalances are very common in hot weather because we sweat more and lose water as well as salt. We can get low salts and be dehydrated even if we think we are drinking enough the body can still be dehydrated even if we aren't thirsty.

Increasing your water intake each day to the recommended amount helps with sweats and chills. In fact , if you have a drink if cool water quite quickly when you are sweating or shivering it actually triggers the body to cool you or warm you up . If you salts are out of balance or low salt tablets if the right type can quickly get the balance right again.

It is common to have vitamin and mineral deficiencies with Chronic illnesses like Fibro even if you have a good diet because the body is constantly using up its stores of nutrients to cope with pain and other symptoms. We use a lot more nutrients each day than a generally healthy person so supplements can be a good daily addition to your Self Care after you have had your blood tests to show your Baseline , or the level you are starting from.

Hope it improves soon, Bee

[Emacosta in reply to Blearyeyed]

thank very much Bee x

[Loudi]

I have had this before. It's like being tortured especially if it's in combo with other FIBRO symptoms, in the middle of the night, trying to cope with the combo of intermittent muscle spasms literally paralysing your torso/back/legs/arms/neck whilst interstitial cystitis urging you to go to the loo every 20 minutes. So not only can you not get out of bed because you're so freezing cold you can't move, you can't move anyway because of the muscle spasms, but you either have to put up with constant painful bladder fullness or literally crawl and drag yourself to the toilet. Been there. I decided in the middle of this to try and force a relaxation session on myself. (Controlled & prolonged deep breathing/hot lavender bath/magnesium salts/affirmations/meditation/anti inflammatory herbals & meds) ... Doing this combo and forcing myself to attempt relaxation rather than painfully suffering in bed did eventually work. That sensation of when finally the shivering stopping/urgency for peeing stopping/spasms stopping... was the best feeling in the world.

These symptoms are because a lot of functions in a 'regular' body are 'regulated', and in FIBRO there is none. Everything is a 'disregulation'. Too much this, not enough that. Our control over being regular/balanced/homeostatic/levelled has vanished. This is why practising and participating in prolonged and controlled deep breathing works, as it can override the disregulation and level things back. One of the main results and consequences of being what I call fibromyalgic is experiencing the body never returning to it's homeostasis. The stress response mechanisms and hormone releases stay switched on, when in 'regular' people it is supposed to return back to its previous levels. This doesn't occur as it's malfunctioning - because of an overload of stresses, it anticipates more, so remains permanently switched to a chemical state of 'fight or flight', a permanent state of alert, and being ready for more stress. This causes all the deficiencies to be created as the body is too concerned with being stuck in an 'ever-ready' state, nothing is replenished as it should be. Muscles are permanently on edge, tightened up and stressed out. The body/brain considers the possible attack from further stress is of top importance and overrides all the usual regulation functions. A certain sort of OCD or catastrophising takes over the brain, this is why again controlled deep breathing, affirmations, meditation, and active relaxation should eventually trigger the opposite, in an attempt to get regulation of everything back to working efficiently and properly. Convincing the brain to allow the body to relax is hard work and doesn't happen naturally anymore.

[Dingledell in reply to Loudi]

Thank you Loudi for that advice. I shall try deep breathing. I agree our fibro brains and bodly just doesn't seem to relax . I feel stressed all the time .

[Emacosta]

it is very hard tho

[Debsdelight72]

Hi Emacosta,

The only time of recent I've felt really cold was in hospital, I asked one of the nurses if I could have another blanket I already had my blanket from home and the hospital blanket and sheet, She took my tempiture and said I had to take all my blankets off apparently as it was way too high,When she left I cocooned my self in the blankets until I eventually fell back to sleep,

Not nice at all I can't stand being too hot or cold. Take your temp just to check (if you have a thermomiture (Sorry can't spell) If your worried give your G.P a quick call,

It is a bit barmy today, My fribro is on alert so I'm going for a snooze with my baby Pup,

[Emacosta in reply to Debsdelight72]

thank you my dear. And my body as changed now this day I have been very warm and sweeting in the middle of the night I have been sleeping with the fan on . It’s like that sometimes cold sometimes hot 🥵 I’m in bed since yesterday no energy tho