Hi recently been diagnosed by rheumatology and gp has having fibro, after many years of pain across the body and very painful periods etc. I recently had surgery just in april this year to remove the left ovary around 50 large cysts all begnin thankfully the larlargest being 15cm. I took a very long time to recover and the pain i have is all over body. And i have started with being unable to regulate my body temperature at first kept being told it was the extraordinary whether we had and the when weather changed the gp suspected early menopause all the test came back normal and now been told tbis is to do with fibro, is there any tips for this and how to regulate body temperature as its preventing me to be able to daily basics as i become too hot im taking duloxetine for fibro
Allopurinol for gout
Paracetamol for pain as my gp dont believe in anything else though paracetamol not helping
I have now also been diagnosed today with osteoarthritis and it seems since january everything going from good to bad
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TheOwl89
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you have been through the mill. I layer my clothes for regulating my body temperature and sleep with a sheet under the duvet so when I get very hot I can throw the duvet off but still be covered. My feet are freezing cold and I wear 2 pairs of socks. I try to avoid the freezer aisle in the supermarket because I go ridiculously cold then boiling hot when I warm up. I have gotten used to it but when first diagnosed it was hard to deal with especially at work. I still think it’s a strange symptom
I get ridiculously hot that comes in waves, but I always have freezing cold feet, I’m taking 90mg Duloxetine, 30mg Mirtazapine, 100mg of Tramadol sr and Paracetamol, I’m forever flinging my clothes and bedclothes off; it’s something I’ve got used to, it’s not very nice at all sweat drips down my face and into my eyes 🤦🏼♀️. I don’t have to do anything in particular get hot and sweaty, it’s very embarrassing 😳 I’m not sure what’s exactly causing it but I tolerate it because without medication I wouldn’t cope mentally or physically. Really hope you can find what’s causing your temperature problems, so you can get some level of comfort. Xx
Hi, i decline to take Duloxetine anymore , make me feel dizzy, confused and sleepy. All this is come on other symptoms of fibro. I make some research on my own and i make some change in my life . I drink 5% of my weight only purified water. According to Robert Morse -The detox miracle sourceboock a pure water wash the toxins from our cells. I free of pain and free of any tablets in only 2 weeks. I'm careful what i'm eat , i use noninflammatory food and drinks and i'm very well, full of energy back to a normal life . I'm was in point to leave my job.I mention that i used a filter jug for water. At first point could appear a expensive chose but trust me , we pay anyway for tablets , and being free from pain worst all money.
hi, I get stupidly hot, or stupidly cold! Feet are always cold 🤔; I have fibro, RA, OA and underactive thyroid. I take meds for the thyroid and RA. But take Only pain relief for fibro & OA because all the meds I tried didnt suit me! I’ve read a book called the Pain Free Mindset which has helped enormously - I’ve altered my diet to ditch inflammatory foods, drink more fluids, go to toning tables for help with getting more joint movement; try to walk more regularly out in the fresh air; the book has also helped me to understand the relationship between pain and the mind and provided tips for better sleep, and mindfulness. All in all, I feel generally much better than I did previously - that’s not to say that I’m not in any pain, just that I feel more able to cope with it.
Thank you for your information funnily enough i have been diagnosed with Hypermobilty in my joints, OA and possible RA in my hands and fluid around my knees too and a shortening in my lower spine also instead of a usal curve to the spine mine is completely straight. I will uave a look for the book
Unfortunately, Fibro , and many other Chronic conditions cause a certain amount of Autonomic Nervous System dysfunction ( Dysautonomia) but very few doctors or consultants , even Neurologists, know anything about it let alone how to treat it as one particular condition or syndrome .
Your Autonomic Nervous System is in charge of all your involuntary body jobs like ' Fight or Flight' , ' Rest and Digest' so when it functions less well , or is imbalanced , it causes palpitations, breathlessness, feelings of Anxiety with no apparent cause, loss of balance, dizziness, insomnia or fatigue , digestive problems , nausea, memory loss and poor temperature control.
Either because of the impact a chronic illness has on how well our whole body can function , or because of the side effects of medication most people with a chronic condition seem to have some Autonomic Dysfunction , some , or all , of the time but no research seems to be addressing it.
Long Covid is really an acute form of Dysautonomia, so my hope is that while medics try to find ways to treat this effectively there will finally be some help for people like us whom have been suffering with it for years with one symptom or another being poorly treated individually or ignored as though it is just what happens and we should just deal with it.
I have Chronic Dysautonomia in the form of a Tachycardia Syndrome ( similar to POTS ) , its lifelong with no current cure and disabling and there is little help out there for people like me at the moment but some of the tricks Dysautonomia sufferers use might help you.
First , it might help to get some blood tests , especially if you also have any of the other symptoms mentioned above as well.
Ask the GP to check your kidney function , iron , folates , Vitamin B12 , Vitamin D and thyroid panel.
Often too much or too little sodium can cause sweating or chills. If you are too low you may need to increase your salt intake. If too high reduce sodium , use a potassium salt alternative and avoid processed foods. Vitamin and mineral deficiency and anaemia or thyroid issues can also cause bad Autonomic Nervous System function so getting help for these can help your symptoms and often also the level of fibro pain you have.
Having a daily vitamin and mineral supplement after your fattiest meal and increasing your water intake can help , especially if your nutrients are low from regular flares. Many people also take extra Vitamin D , B 12 and Magnesium and Omega 3 to help with metabolic symptoms. Keep away from Omega 6 it causes increased inflammation and temperature.
If you are able to take it with your own tolerances or medications Garlic capsules and Turmeric supplements can help as they improve circulation and in turn temperature control. If taking Turmeric I suggest using one capsule rather than two as is a usual recommended dose to reduce the chance of stomach cramp or digestion change which some people get at first.
Now, ways to reduce the swings in temperature. Cotton or natural fibre clothing in layers that can be put on/ off easily.
If you find in Winter that you begin to have chills instead of sweats compression footless tights and t shirts can help.
Drink cool water through the day, but in quick small sips if the sweats begin. Peppermints sucked also help.
Trick your nervous system. Keep a flannel or cloth in a plastic bag with you . When you begin to overheat put very cold water on it and place it on your neck . This instantly creates contact with your autonomic system and makes it react quicker to reduce the heat.
Having water in a little spray bottle to squirt on your ankles and wrists also speeds up the cool down.
Distract your system. As you sit with your cooling cloth , gently squeeze and release your ear lobe or tap rhythmically on your inner wrist or outer elbow and do some nice , slow relaxing breathing . The nervous system will begin to respond to the change in breath and the new stimuli reducing its over reaction to a change in temperature.
Oddly , a luke warm shower can often stop the symptoms if they are going on for a long time and other tricks have not worked.
Hope this is useful and you get the right help soon
Thanks for your very detailed reply, i have had all my iron, thyroid, hormones, menapuse blood tests etc even had the arthritis blood tests etc all my levels show normal though recently ive had mri which actually showed i had an issue which wasnt showing on the bloods. I will speak with the GP as the orthopedic dr is thinking i may have EDS
I have Classic Like ( Type 2) EDS , this has been at the core of my health problems for my whole life and caused my other health issues but I was only officially diagnosed this year at age 50!
I suggest you do what I did. Look up and print off the hypermobility EDS classification test sheet for professionals from the EDS Society website , and the pages on types of EDS which states the measurements to use for testing the stretch of your skin in the Classic description. Make a double GP appointment and ask them in that to get that test done and your diagnosis verified by giving them the question sheet that includes the Beighton test to do on it . My youngest daughter came in with me and she was diagnosed Classic straight off.
The problem is , even with Rheumatologists , that although this check is very easy to do and the rules to understand that none of them seem to know them or look this up. So many EDS sufferers have it for decades and never got tested for hypermobility or were tested wrong . Although having a Hypermobility Spectrum Disorder diagnosis us useful it isn't the same as knowing you have EDS and you don't get treated as seriously which I know from years if experience.
EDS is a Connective Tissue Disorder not just a Hypermobility condition. Connective Tissue is part of each part of the body and can therefore be at the heart of all the different health conditions you have , including Fibro but also Gynaecological issues, IBS , digestive issues, neurological problems , Mental Health issues , hypersensitivity , dental problems and on and on. By having that diagnosis you can be armed to get the right help in a surgery or hospital situation, specifically being able to remind them that certain other conditions can be linked to EDS and to treat all of your problems under one umbrella , and take greater care in your treatment.
Just wanted to add that I do sometimes use all other shower temperatures, but cold resets my 'thermostat' as well as things like pain, feverishness and often sleep best. In case of outside temperature plunges I heat myself up (heating or hot shower), then cold shower (for 15-20 seconds) before going outside.
thank you, I've tried the showers but finding it's not helping with my pains that I have but will continue to try the shower for the regulating of the body temperature
thank you for your question as you have just described me! Blearyeyed reply had every description of me. I am perimenopausal so hot flushes are coming thick and fast. but the fight & flight thing is with me all day. I am seeing a rheumatologist today (dont know who though which is adding to my anxiety) i am hoping he/she will listen to me and not talk over me . i also had covid this july which has affected my breathing xx
i have been tested for the menopause and perimenopause and all negative but, my argument it that since having my left fallopian tube and left ovary 1 large 15cm cyst and 49 smaller ones I have been getting the flushes and then sometimes I'm freezing cold. I keep just being told its something I will have to live with 😒
i too was tested for menopause via a blood test when i was 41, first two said yes then 3rd said no so doctor said " learn to live with it, we can't help you" i am now 50 and it has become worse the last five years. I wear black clothes to hide the wetness from sweat, so embarrassing. people at work are wearing layers and jackets yet i'm still in a t shirt! xx
I'm the same still having to walk around in a vest top and shorts as too hot to do anything ending up with chest infection after chest infection as I can't dress properly because if I try wear anything that covers my arms or legs I'm too hot and that effects my asthma so I can't win
And waking up 3 or 4 times a night because i am sweating and very hot. flipping the duvet off, fan on then cool down only to suddenly feel ice cold so have to pull duvet over me again xx
Hi worry for the late response the last couple of weeks I've managed to get some control of my body temperature instead, I have found that if I'm going in a warm place I must go in a sit down not doing anything then gradually once I feel OK I can start to do things but at a slow pace. I try to wear thin layers instead of my vest top now too and gradually increasing the thickness of the layers I hope this is some positive hope for you too
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Does anyone else suffer with extreme body temperatures, I go from burning up to freezing cold?
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Low temperature 
