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Whole body getting hot

Sachin1234 profile image
104 Replies

Does any pbcer has an issue with getting their bodies hot like a fever but no fever?

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Sachin1234 profile image
Sachin1234
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104 Replies
Ktltel profile image
Ktltel

Sachin1234,

I have experienced getting hot (not hot flashes) that I've been having for over a year. I also have these weird muscle aches in my legs and arms. I've had those aches since 2011 soon after my hysterectomy. But now I believe these are PBC related too. I was diagnosed with PBC last year in Oct. Early stage.

Stella

tlm82568 profile image
tlm82568 in reply to Ktltel

Hi this is so strange. I have been saying the exact same thing the past few months. I feel so hot inside. Like i have a fever or virus but I do not. I also feel weak and tired but i am not sick. I am early stage PBC as well.

Tina

in reply to Ktltel

i have all these probs i was diag with fibromyalgia 2yr ago get your self checked

in reply to

i also have pbc

Rozm2004 profile image
Rozm2004 in reply to Ktltel

Hi

I too started having aches after my hysterectomy which was 2011

I was then put on hrt, in 2015 I had raised liver enzymes so stopped hrt and diagnosed July 2017

Do you think this is linked ?

When did you get Pbc ?

I still have the aching joints and muscles

I thought it was part of Pbc

Roz Xxx

Rozm2004 profile image
Rozm2004 in reply to Rozm2004

Sorry meant to add about hot feeling like flushes and terrible sweats,

Errr brain fog

When off track there sorry

Xx

Ktltel profile image
Ktltel in reply to Rozm2004

Rozm2004,

I definitely believe it's an autoimmune thing. The low grade fever, night sweats, muscle aches, brain fog, dry eyes... all of it.

I was diagnosed with PBC 10/16 but I had the muscle aches back in 2011. The night sweats and low grade fever as well as dry eyes AND let's not forget the hair falling out... all started last year. Fun.

I'm better, but, right now my alk-phos is climbing slowly. I'm trying to get on a non generic form of URSO. We will see what my insurance will say. If I can't, I'm increasing my dosage by 250mg as I've read generic drugs are only required to use 80% of the active drug. Not all generic drugs but, some. My "generic" URSO Forte is from the company called Confab out of Canada. The real URSO Forte is from the company called Allergen out of Ireland. I have a call in to Allergen to find out specific ingredients in the generic brand. I'm not holding my breath that they'll call me back.

Stella ❤

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I did all other test and every thing can out negative..you are right it is like low grade fever but it is happing everyday to me tho. Hot body is my new norm 😁

Ktltel profile image
Ktltel in reply to Sachin1234

Sachin1234,

If you change your diet it will subside. You must be eating or drinking things that are aggravating your autoimmune disease.

These low grade fevers are like an internal warning system letting you know something's not right.

For me, once I changed my diet, I mean for me it was a drastic change, then the low grade fevers got fewer and a lot farther between. Sugar and fat was the big culprit for me. It could be different for you. I cut out dairy and gluten too. Basically I tried an anti inflammatory diet. I was also tested for foods that I might be allergic to and I cut those out too.

When I cheat... and I mean like a week of cheating.... then those low grade fevers return. But I don't do that. I'll cheat for a day with just one item... maybe 2 days but that's it. Too many carbs too can also bring those flushes on. This may be just specific to me, but, it's worth a try to do a process of elimination on certain foods and drink. Especially ones that aren't liver friendly.

Stella

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I’m thinking about quit eating wheat I’m thinking I’m broader line allergic too wheat

Sachin1234 profile image
Sachin1234

For that matter I haven to so many drs and done so many test and all other tests came out negetive.. I guess that's the symptoms of auto immune

in reply to Sachin1234

i had a barage of bloods and scans for the sweats and heat all came back clear put it down to fibro

Sachin1234 profile image
Sachin1234 in reply to

I haven't checked for fibromyalgia? You think fibromyalgia cause all that hot body !

in reply to Sachin1234

don t think i no lol z she sat here having major hottie its awlful i have spent fortune on natural sheets mattresses does nt work i can go from boiling to freezeing in 30secs my friend has fibro and it was only thru her saying i wad like her in symptons tbat i suggested it to dr she agreed sent ms to rheumy 10min appt she agreed all tho i had all my bloodwork done prior and all came back neg itcauses so much its unbelievable can u google symptons there are plenty of fibro sites good ones

Sachin1234 profile image
Sachin1234 in reply to

Ok..I don't like to google that can scare me for no reason.. that's why I'm here to know more about my problem.. I think every autoimmune tends to inflamed our body I guess.. some gets intense and some won't..I don't sweat regularly when I'm inflamed but I do have hot body all year..it is not bothering me too much just annoyed little bit cause hot body usually happen to cancer patients and viral infections 😔😔

in reply to Sachin1234

aww bless u if u can go on the proler website for fibro it is good its like this site fibro uk is one living with fibro is another but don t stress yourself out u will cause yourself more probs good luck to u im sure itz none of those u mentioned x

Sachin1234 profile image
Sachin1234 in reply to

Thanks 👍🏼

Sachin1234 profile image
Sachin1234 in reply to

Same thing patty it might be urso I didn’t have any problem with this thing before urso or may be I was just in the beginning but f pbc

in reply to Sachin1234

i did wonder as my dr did but i came off them for 2wks and it did nt make any diff unless needed longer its not down as a side effect but u never know i am beginning to think and the itch is down to sugar just need to research this a bit more lol

Ktltel profile image
Ktltel

Sachin1234,

Yep, someone told me these were both autoimmune symptoms. A friend of mine, she has fibromyalgia, chronic fatigue, RA, and chronic pain throughout her body. She doesn't have PBC. But a host of other AI's. She experiences the fevers/body heat too.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I don't have any RA or fibromyalgia pain.. so are we end up having those in soon future?

in reply to Ktltel

yes mine only seemed to follow the fibro

Ktltel profile image
Ktltel

Sachin1234,

I don't think so. It's just our bodies telling us something is wrong.... Something is going on. After I was diagnosed I was scared straight and really watched my diet, took supplements, my meds, drank lots of water too. For 7 months I did this. I lost weight, the body fevers subsided some, so did the aches. But, human imperfection.... As I started to feel better, my diet got worse again. I slacked off some with company for 3 weeks. I still took my meds of course but I didn't guard my diet like a hawk as I was. I started feeling yucky again. Fevers/body heat came way more often as did my body aches. I'm working hard to get back on track.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I noticed diet makes different as well.. how is your bladder? Before, I was diagnosed pbc I had burning sensation and slow flow problem while urinating which is still persist..

yesterday I did cat scan and MRI my bladder and kidney looks fine so we conclude may be that's is one more f the symptoms of pbc..

Ktltel profile image
Ktltel in reply to Sachin1234

Sachin1234,

I had that too. I was told to drink lots of water. I do that now. When I forget I have that issue. So I gotta remember to drink drink drink. 😊

Sachin1234 profile image
Sachin1234 in reply to Ktltel

When I drink lots of water I go urinating frequently.. u used to drink a gallon a day I just stop it now i hardly drink a litter.. I'm going to start drinking more and let's see how the outcome will be👍🏼..

wish we have more male pbcer here

Ktltel profile image
Ktltel in reply to Sachin1234

I know, it must be weird mostly women but, PBC is PBC. And it's good to pee a lot when you're drinking more water. Good for liver, kidneys... Whole body. Just annoying that gotta run to bathroom so much. Lol

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I didn't know that now on I will start drinking water and beer a lot then 😁

Ktltel profile image
Ktltel in reply to Sachin1234

Lol.... No beer. WATER...

fred6577 profile image
fred6577 in reply to Sachin1234

I get exactly the same thing but find it's not as bad If I am super careful about what I eat etc.

Sachin1234 profile image
Sachin1234 in reply to fred6577

So what did you do to cool your body heat!

badpiglet profile image
badpiglet in reply to Sachin1234

Hi Sachin,

Although clearly you're not perimenopausal, lots of products and tips that are directed at perimenopausal women, will also help you.

Loose, natural fibre clothing eg linen shirts.

An electric fan in every room.

Specialist cool, wicking bedding.

Very thin, ultra-light, 2 tog duvet.

Cooling pads - can use them as a pillow, or behind your back when driving/sitting. Can get very large ones for dogs and very small ones for sports injuries but they all do the same thing. They get cool naturally or you can put them in the fridge for extra cooling. Good idea to get 2, then as one gets warm as it take your body's heat, you've got a cool one ready to replace it. Nice to have to cool on the insides of your wrists and at the base of the back of your head (nearer the hypothalamus).

Generally always trying to keep a degree cooler than you would like to be.

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Hi Sachin,

I don't know if I feel hotter or I just don't tolerate the heat as well. I keep the air conditioner set a lot lower. As for bladder I get burning often sometimes with a urine track infection and sometimes without. Those came pretty constant shortly after being diagnosed with PBV. The did a scope and didn't find anything. So recently when I had another UTI that didn't clear up after antibiotics I got curious and pulled up all my urine test and looked for what was positive. What I found was pretty interesting. I had all different kinds of infections i.e. one time I had a pneumonia infection that you get in your lungs. My best guess for me is that sometimes my liver and immune system get overwhelmed and my kidneys get over run with what I have been exposed to. Slow flow could be prostrate enlargement as in men their prostrate never stops growing most guys eventually get it. Very treatable. Even though I am sure you mentioned it to your doc. If it keeps coming back keep mentioning it. It took me two years to get through to my docs that this was an ongoing issue. Now they will test weekly until they find the culprit and once I have finished the antibiotic they test again in four days to make sure we got the bug.

Also you can ask your pharmacist for an over the counter pill that turns your urine bright orange. It won't help and infection but it will give you relief from the burn.

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

Thanks Kathy

My prostate is fine and my urine culture and std always came out negative.. just burning sensation and dull pain around bladder before urination that's it.. it doesn't happen every day but once in week I guess.. my stream is slow but the amount I pee is normal..this burning sensation is screwing up my sex life.. next time I think I'm going to tell my urologist to cystoscope 😔

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

I get it. I had the exact same symptoms and they couldn't find anything wrong for a couple of years I got to the point I wouldn't go in to the docs because I thought they would start thinking I was an idiot. My GI doc kept telling me that patients with PBC had darker color urine and it was normal. Does your urine have any describable odor when you are having trouble? The scope would be a good start. The name of the tablets that will give you some relief from the burning are called AZO tablets. Be aware that it will make your urine bright orange or even red, but that is good as it is coating the inside of your urinary tract and will stop the burning temporarily. It costs about 8 dollars a box at Wallgreens, but you can get it at just about any pharmacy as an OTC drug. When it cuts into your sex life, we are talking about a quality of life issue. Don't let the doc's off the hook until they solve the problem.

Hang in there,

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

I wish we more male pbcer who I can share more of my problem..like I said one do I'm fine while peeing next day burn the hell out..I'm sick and tired of going to urologist almost every month. Sucks! I need some natural remedy if anyone has please! I did take azo while ago but I didnt feel any difference 😔😭

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Wow the azo tablets gave you no relief. That is tough. I have the same issues, burning urinations and also some bladder spasms. Sent to a specialist and they scoped and can find nothing wrong. But I get frequent UTIs since getting PBC. I will look into natural healing methods as I don't think taking antibiotics every other month can be good for our liver. Will post when I find something.

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

I was almost 6 months on antibiotics one after another before pbc for this freaking burning urination.. I just had cat scan everything came out negative I'm done going to urologist.. now I'm trying to understand my body and not think a lot about it..I have change my diet also and it is helping me I guess!

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

How old are you ? Remember our body gets too dry due to pbc and that can be a one reason we might have frequent uti or yeast infection

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

I am 56 and you? I didn't know that pbc causes our body to be dry. Interesting - helps me understand why I need to drink all day. No yeast infection. Except on a date I got a case of thrush. I told the doc I couldn't believe it, only babies get that. I have since found dating to be difficult. I don't mean to be blunt but I quit dating because my immune system doesn't fight off the bacteria in someone else's saliva. TMI but this is how we learn about PBC. I am sure I just need to boost my immune system.

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

Not for dating.lol. I haven't meet any pbc people and I'm dying to meet in real..Now you scare me.. when you said we can't kiss other people.. I'm just 39 going to be 40..I want a get married and have baby😔😔..I never talk about these thing with my dr I guess I need to start talk about my private life as well 😔😔😔

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Didn't mean to scare you. Of course you can date, marry and had kids. I wouldn't worry about it too much. If I were 39 I would be out there finding my mate. :)

If you find your immune system is taking a down time. There are other places to kiss than swapping saliva. You just need a partner that is sensitive enough to let you know if they think they are coming down with something.

Anytime you are in Colorado I would be glad to meet. We have five people with PBC near the Colorado Springs area of which I have met with two and am planning to meet with the other two. It really is nice to meet people with PBC in person and share experience and knowledge.

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

That's 😊

when I'm there I will definitely message you matter of fact we all 5 people can meet and have lunch together 👍🏼

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Sounds like a plan!

S1cknt1rd profile image
S1cknt1rd in reply to Sachin1234

Hiya. I’m not a man lol and am awaiting liver tests so not sure if PBC yet or gallbladder issue. But have had Hep before and have very similar symptoms at moment to everyone on here including itching feeling of heat and pain under ribs.

Interestingly also lots of irritable bladder symptoms but had those for years with no diagnosis.

I get burning too but usually o infection present although a history of lots of infections in my bladder and kidneys years ago.

I find putting a teaspoon of bicarbonateof soda in water helps to remove the acid from the Irvine and stop the burning x

Sachin1234 profile image
Sachin1234 in reply to S1cknt1rd

What is hep?

S1cknt1rd profile image
S1cknt1rd in reply to Sachin1234

Hepatiti. I had it years ago.

Also the above comment was meant to say urine. Not Irvine 😂

S1cknt1rd profile image
S1cknt1rd in reply to Sachin1234

God sorry Hepatitis

Bloody typos

Jlruggie profile image
Jlruggie in reply to Ktltel

Eat what I call "fake food industrial complex diet" and watch TV everyday for hours if you want to feel tired, hot and un motivated to move or think. That's all I got for now...

in reply to Ktltel

i am noticing the sugar diff i am looking in to it trial process

Ktltel profile image
Ktltel in reply to

Patti1955,

For me, it's simple carbohydrates too. They turn in to sugar when consumed. So both sugar and carbs makes a difference in me. I can't eat those everyday maybe twice a week and only small amounts. But, I only eat them in the form of naturally occurring sugars and complex carbohydrates. Even then, I really try to watch it.

Stella ❤

in reply to Ktltel

thank u for reply i shall have to have a read up not got a clue on carbs as i have never investigated these at age of 62 i suppose i should have but thank u i will have a read up my gp gave me a diabetes check machine and altho no diabetes did tell her my body was nt coping with sugar i am also on my 4water infection this yr which is something else i have never had

Sachin1234 profile image
Sachin1234

One more thing my reflux are getting worst and worst and I eat healthy food

Ktltel profile image
Ktltel in reply to Sachin1234

Could reflux be from anxiety? They say autoimmune disease begins in the gut. Google Leaky Gut and autoimmune disease. Early on I was tested for foods I was allergic to. I cut those foods out. It was an expensive test. $200. But we'll worth it.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

all I know is I have Kentucky allergy beside that I don't remember any food allergy but some food like too much sweet, greasy and spicy food make me bloat and have to go toilet ! What is the name of test?

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Some people find switching to a non GMO diet helps with allergies. Most of our refined sugar is now made with GMO beets. Greasy food is hard on your liver and digestive system without liver disease. Having PBC makes it that much harder. I did some research that resulted in using coconut oil for cooking. The molecules are much smaller than other fats so they are easier on the digestive system. I don't know they why that spicy foods aggregate reflux, just know that my friends who have it pay dearly every time they over do the spice.

Hope this helps.

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

I grew up with spicy food and they are bad for reflux no doubt.. now, I have very limited spicy food..about sugar I eat 60% dark chocolate everyday and ice cream one scoop every week.lol.

I take one table spoon of coconut oil with turmeric tablet everyday!

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Well no one can say you aren't doing your homework

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I just did my food allergy test last week..I had reflux since childhood..now it has been couple of months one 40 mg penta is not enough I don’t know why..

in reply to Sachin1234

it might be idea for you to if u can space doses of tableif you can get 20mg take 1night 1morn is there anything you have taken or eaten on a regular basis since childhood have you had a camera down throat x

Sachin1234 profile image
Sachin1234 in reply to

I haven’t done egd and colonoscopy yet! Just did food allergy test waiting for a test results

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

I just was researching Braggs Apple Cider vinegar and one of the benefits was a reduction of reflux. Recommended two teaspoons in a glass of water before meals. As it is an acquired taste it was recommended that you start with 1/2 teaspoons in a gallon of water then slowly add more as you can. The info blog stated that if you can't stand it then you probably don't need it. If you find you are craving it (after a few doses) you probably do need it and keep using it. I will try it and post later if I felt any benefit.

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

Ok I will try that too..

I feel burning sensation before pee..its been couple weeks i have no burning sensation feels so good !

Ktltel profile image
Ktltel

I'll have to look it up. I saw a Naturpath doctor early on when I first got sick last year in Oct. He took blood and sent it out to a lab that checked a whole bunch of food groups for reactions.

I stopped eating complex carbs, dairy, sugar, gluten, corn and I eat only eat low salt. Until recently I was pretty strict. I'm getting back to that diet again.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I eat complex carb mostly and if I eat regular flour then I don't eat more then 2 slice

My regular diet plan

Breakfast

I slice whole grain bread with avacado, 2 eggs, one glass soya milk and 1 tea spoon peanut butter

Snacks

Mozerrala cheese stick, peanuts butter crackers, sunflower seed and protein shake sugar 5gm only

Lunch

Kale and Brussels sprout salad and broccoli

Dinner

Turkey sandwich, chicken breast, pork loin varies with legumes and little rice

These are things I mostly eat and in weekend I eat anything I wish.lol

Ktltel profile image
Ktltel in reply to Sachin1234

That sounds really good. I wonder what's causing the reflux? Don't eat too late at night. That may help. Peanut butter has a bit of fat in it, could that be it?

Yeah KC is known for good BBQ. But so is Texas. You are young... Hopefully you can be careful with your diet and stay relatively healthy and PBC symptom free for a long time.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

Think you!

I'm hoping the same but every year I'm diagnosed with something else which makes me fade up sometimes .. it's been 4 years running with pbc during 4 years I have already diagnosed with reactive hypoglycemia, hypothyroidism, and may be sojourn cause my mouth and eyes gets dry everyday 😔😡

Ktltel profile image
Ktltel in reply to Sachin1234

Man... That's too bad. I have dry eyes as well. If you have the money or good insurance there is a medical facility in Ohio called The Ultra Wellness Center. They claim to be cutting edge in autoimmune disease cure. All Functional medicine doctors. They do full testing and get to the "core" of the problem and start fixing the body there instead of taking meds for symptoms only. You might Google it.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

I'm sick and tired of going one dr to another..for right now I'm sticking with my specialist and endo that's it..didn't I tell you I been going to urologist for 3 years for no reason. Sucks 😔

Ktltel profile image
Ktltel in reply to Sachin1234

I understand. Keep it in mind. Most mainstream doctors take care of symptoms. If I had the money I'd see someone that not only helps with the symptoms but gets to the root of the problem and starts to help there first. My insurance won't cover me out of my state. For now I'm holding stable. I have blood work every 2 weeks, soon to be going up to every 3 weeks. I'm getting adjusted to the RA drugs and their watching my liver in the meantime.

Sachin1234 profile image
Sachin1234 in reply to Ktltel

Ok I will enquiry about place you mention this week then

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Hi Sachin,

I would recommend looking on youtube at Dr. Group's video on iodine supplement. He is of the belief that everyone is deficient. Of course let your doctor know if you want to take it for your hypothyroid and see what he thinks.

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

My iodine is fine after I take thyroxine and I take multi vitamins too..

Sachin1234 profile image
Sachin1234 in reply to Sachin1234

Did you go to hot spring you were taking about?

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

I traveled to Tennessee, so I haven't had the chance yet. Just got back. I did use the hot tub in Tennessee. I didn't have any issues and it seemed to help clear up the scratch/cuts from itching.

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

Hi Sachin,

I can see a couple of possible culprits. Dairy and dairy products could be an issue. I.e. the cheese and the whey in your protein drinks. Look up Walter Vieth and check out his video on the issues and disease that correlate directly with the countries that consume a lot of dairy products.

Also you don't have to have Celiac disease to be gluten sensitive. You might give yourself a 30 day gluten free trial. Remember that gluten is now in 80% of packaged food even in condiments such as ketchup and soy sauce, so you will really have to be looking for it.

The third thing is meat protein has an inflammatory response by your body where whole plant protein does not.

This all may seem to radical of a change. But I would start little by little and by looking at food as medicine.

I was diagnosed in 2012 with PBC, NASH, IH, and sarcoidosis in the liver. Ursol or other medications were not an option for me the first diagnosis as I was allergic. My only chance of slowing down my liver disease was/is to learn how to eat to live. I try to learn something every day. I was in stage 1 in diagnosis and as far as I know still am. Six months ago I was able to start Ocaliva. But I am getting worse on that med so I may have to stop it too. For me my best bet is using food to heal or slow down progression. Big food industry has a way of encouraging us to eat stuff that can be very unhealthy. So if you have the time I would do your own research and make sure what you are eating is not a culprit aggregating your current diagnosis.

Best of luck!

Kathy

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

you are right, I have to change my diet along with my medicine..I do t know why I'm still drinking alcohol even it doesn't do good for me...

Q8Cooper profile image
Q8Cooper in reply to Sachin1234

It is a process. Give yourself permission to go as slow as you need to. I haven't had alcohol in five years and I went to a casino where the waitress told me she wanted to make me something special so I agreed to try it. Oh my gosh was it good and Oh Boy! I was curled up in a ball of pain and nausea for about four hours. I think I am good for another five years. :)

Sachin1234 profile image
Sachin1234 in reply to Q8Cooper

It doesn't hurt me yet..I have to find some other alternative

Ktltel profile image
Ktltel

Take care Sachin1234,

Have a great Sunday! I have need to study for a meeting tomorrow and get some sleep too. Have a good night.

Stella

Sachin1234 profile image
Sachin1234 in reply to Ktltel

Goodnight and thank you for all the info

Sachin1234 profile image
Sachin1234 in reply to Ktltel

How are you ktltel

butterflyEi profile image
butterflyEi

Hi Sachin1234

My body always runs hot no matter what I do. While I am wearing just a wrap my husband is wearing a jumper :-)

best wishes

Elanie profile image
Elanie

Hi , I too run hot constantly, have done since my thirties, I'm 55 now. Only diagnosed in Feb this year , so unless I've had pbc since then I do not relate it to my illness. I sympathise with you as its so uncomfortable. I have all windows open all the time, and fans on at home and work. My family freeze in order that I can be comfortable. I live in the north of England so it never has high temperatures. We are lucky to reach 70+ degrees in the height of summer! I would love to know what causes this.

Kmkrutsch profile image
Kmkrutsch

Yes, I get these also. Sometimes it feels like a bad sunburn. Mostly face and chest.

Kmkrutsch profile image
Kmkrutsch

I also have the muscle pains that are so sporadic in my arms and legs.

Sachin1234 profile image
Sachin1234 in reply to Kmkrutsch

Muscles pain or cramp can be due to vitamin deficiencies. Have you checked your vitamins?

Kmkrutsch profile image
Kmkrutsch in reply to Sachin1234

Yes, I do get deficient in Vit D. When I am I take high dose prescriptions to get it back on track. Thanks for your reply.

DianaCoats profile image
DianaCoats

I have posted before. New DX for me although I have Reynaud's, Vitiligo, Dupuytren's contracture and mixed connective tissue disease. My main treatment providers are naturopaths as Western Med doctors just kept giving me drugs and I sought some different answers. I am 59. I work full time plus at a very stressful job which I know contributes to a boatload of symptoms. What caught my eye was the talk about Acid Reflux worsening. I have add that issue off and on for years. I don't take medication. I DO take probiotics and digestive enzymes made for folks without gall bladders. My theory (and it is just my own theory) is that the energy that it takes to process food is the issue. Our energy units are being taken up by all the abnormal body processes and so there is little left for digestion which leads to various symptoms. I did a 60 day juice fast and was symptom free of any digestive stuff for that entire time...my theory is that my liver had very little to do during that time and I was loading my body with nutrients that took very little processing because there was no fiber, fat etc involved.

This may or may not be helpful to anyone...I can just say that it was true for me. I did the juice fast in from February to April 2016...I am starting another one next month because I have never gotten such positive results from anything else.

Due for my biopsy next week and opted to not take URSO at this time although I do take Jarrow Bile Salts which are basically the same thing but not synthetic and they cost me less than 20 dollars a month. I am lucky to have a specialist that believes in Alternative Medicine, I know that not everyone does.

Good luck to everyone.

Kmkrutsch profile image
Kmkrutsch in reply to DianaCoats

I also have gastrointestinal issues. I had been taking probiotics but my Rheumatologist directed me to stop. Not sure why.

Sachin1234 profile image
Sachin1234 in reply to DianaCoats

im too young to try new method of medicine and for me urso is working..

I might try your juice diet if you tell me what kind

DianaCoats profile image
DianaCoats in reply to Sachin1234

I watched the movie "Fat, Sick, and Nearly Dead"...available on Netflix...about 3 years ago...and then watched it again last year. Somehow the first time I watched it I missed that he had an autoimmune condition. I think I just wasn't ready to hear that. I did the 60 day fast which most people don't do, but it was the best I had felt in 20 years. My sleep was sound and regulated, I hate tons of energy, joint pain was gone, no gastro issues etc...My co-workers were amazed. Although I eat 100% organic and only eat grass fed beef, wild caught fish, organic chicken etc...eventually symptoms started coming back. I can't tell you why. This time around, when I start adding food back I will pay more attention to my body's reaction to it and try to figure out what foods are not in my best interest. All the best.

Sachin1234 profile image
Sachin1234 in reply to DianaCoats

What kind of juice you drink?I was diagnosed in this season 3 years ago must be due to season change..

we had a couple of people here who stoped taking urso due to not havring insurance or some other reason and after long gap urso is not working for them😔😭..

I will definitely watch that movie on Netflix tonight 😁

DianaCoats profile image
DianaCoats in reply to Sachin1234

When I did the fast I pretty much followed Joe. Juiced 80% vegetables and 20% fruit...My favorite juice combo was Kale, Swiss Chard, cucumber, pineapple, pear and jalapeno. I drank that all day long. The first 3 days were the hardest and then I really didn't think about eating after that. I was never hungry. I used all organic fruits and vegetables because you are juicing the peels too and I think that's pretty important. I had a lot of friends who did shorter fasts after they saw how good it was for me...no one else I know did the whole sixty days...but really, it's only hard at first...and if the people in your life don't support it, that would be hard too...I had people who didn't cook around me. Hope you enjoy the movie. It really did change my life.

Sachin1234 profile image
Sachin1234 in reply to DianaCoats

Thanks

DebMd profile image
DebMd in reply to DianaCoats

I also followed this and results were amazing...and had the exact same results...now I make sue I have at least one juice everyday and do a r-boot every few months......no sugar..sugar increases my hot episodes and muscle aches...xx

gwillistexas profile image
gwillistexas in reply to DianaCoats

My dr is trying to get Oclavia for me. I should talk with his nurse tomorrow & I will ask about the Jarrow bike salts. Thanks for that info.

DianaCoats profile image
DianaCoats

I always ask. But then I grew up in the sixties:) I never swallow anything without thoroughly researching. Case in point: When I was found to have PBC through bloodwork ... elevated LFTs and really high AMA...I was immediately prescribed URSO. I picked it up so I didn't have to make another trip in. It was two 500mg tablets FOUR TIMES A DAY. I told the pharmacist that it looked like too much to me...I "felt" like it was too much. I spent time researching URSO and read studies and found PBC dosing which indicated that at my weight I shouldn't take more than 1000 mg a day. The 4000 that was prescribed could have done a lot of harm. I believe in knowledge and advocating for what I need. This is not my first rodeo...when I was diagnosed with my first auto immune condition 20 plus years ago I ended up on total disability for almost 7 years. I fought my way back through very non traditional medicine. I look at medicine and treatment much like the philosophy of many recovery programs, "take what you like and leave the rest". No one knows your body like you do. Not all things are good for all people and vice versa. I know I have just gone on a tirade but if someone tells me to stop something I believe to be good for me they better have a darn good reason backed up by something besides "in my medical opinion". There, I will get off my soapbox. If you find out why I would be interested to know as probiotics support healthy gut function. Not all strains are good for all people, but you know the story about the baby and the bath water. All the best to you.

Sachin1234 profile image
Sachin1234 in reply to DianaCoats

My problem is I don't hesitate taking medicine.lol. If something happen to me I wait very last time to go dr because I fear of bad news.😔😔

When I had a abnormal hepatic panel took me 4 months to go to dr.😁

Now,I'm also thinking it is urso making my body hot even I only take 500mg twice a day! I take all my supplements and medicines together I wonder that might be a problem 🤔

I do take Kroger version cheap probiotics twice a day as well..

My latest problem is hemorrhoid? It is bothering me a lot even after good fibrous diet. I dont know just keep it and continue eating good or remove the hell out of it..

58goose profile image
58goose

Just a thought - I also suffer from 'hot flushes' (not menopause, gone past that!) but I take meds for an underactive thyroid (as well as for PBC) and that is one of the side effects of that particular medication. Double check side effects of any meds you take just in case. Best wishes x

Sachin1234 profile image
Sachin1234 in reply to 58goose

I take synthetic thyroxine for hypothyroid.. is that what causing me hot flashes like 😲

Sachin1234 profile image
Sachin1234 in reply to 58goose

I will check my med side effects tonight

bobbycat profile image
bobbycat

Yes..boiling hot sometimes..and very cold other times...I have PBC and fibromyalgia.

Sachin1234 profile image
Sachin1234

You should have told me you are in Tennessee I could have invited you in Kentucky..have you meet any pbcer I haven't

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