And cold? I find myself suddenly feeling as if I will spontaneously combust from heat, and the temp in the room can be in the 60's! Yet I feel like I shall burst into flames!
Cold weather used to make my muscles tighten up so hard that only a muscle relaxer could fix this. But no longer.
Also, anyone have vitamin D deficiency with fibro?
Thank you all in advance,
Fibromyalgia (again!!), anyone with the dreaded fibro have sensitivity to heat?
And cold? I find myself suddenly feeling as if I will spontaneously combust from heat, and the temp in the room can be in the 60's! Yet I feel like I shall burst into flames!
Hiya there sweets,
Sorry to hear you are still suffering from the dreaded fibro,you sure are havin a rough time lately!!
I'm suffering the last few months with pains in my joints(funny places,like bone in wrist or finger or bone in ankles),it flares up now and again,and often has me close to tears.Whats with that do you know?I duno what the full extent of fibro is,I'm ignorant to it! Dont mean to answer your q by asking a q!!
I cannot answer your q,as you can see,but I'm sure you'll get more ans along the way!
Hugs to you
Hi Lara, Fibro can be so painful being a suffer too. Normally the combination of medications I am on deals with things ok, but increasingly I seem to notice more and more symptoms of pain and I am feeling what else is going to hurt today. I try to not dwell on the pain to much and try to block it out, easier said then done!!! I tend to one moment be really hot and flushed to a bright pink, when you touch my skin it can feel very hot. Then when you take my temp it is normal, or other days I can be having the chills. I will be at home with layers of clothes on, a heated blanket and still be cold, whilst my husband is in the home with a t-shirt on saying he is too warm.
I don't know if your the same but as I have got older, the fibro has got a lot worse. I am sure I didn't notice it so much before, that is not the case now. I have been taking Vit D for a while now, when I am going through a flare with the MS my levels seem to go down enough that I will have to be on a high dose for a while (50,000), but on a normal day I take 4,000. once a day. This is just a thought but, has anyone also been suffering from low potassium. I have been getting readings of 2.9 to 3.4, just wondering if both go hand in hand. Not sure if any of this helps you Lara, but I am interested to see if these two (vitamin D & Potassium) are both low in Fibro patients. Take care, Liz.
Oh, sweets! Yet again, you are not reading as I suggested! Yes heat & or cold will effect every thing from your skin to your muscles dear. I will put the heating pad on my back & then after a few, throw it across the damn room! The cold penetrates my every fiber,(may not put up with it much longer), but as soon as I come inside, the warmth, just aggravates me too! Can't please a fbro patient no matter what. I am adjusting our automatic thermostat to my own liking. If I'm cold it goes up, then I am opening windows! Pain, pain, pain! Why the heck can't they come up with a cure for this dreaded disease! I did not take my Lyrica (down to one at bedtime) because I look like the Pillsbury Dough Boy & have about 8 lbs. of excess fluid on me from it I guessed. Oh, the pain! I can hardley type this AM, so I cannot answer your question, well guess I did, but have no cure for you or me! Upped my oxy too to no avail. Grrrr.
I need a cure too! The Lupus is in full effect too. My face which isn't round looks like a bulldog! Jowls & all! Go soak is a hot tub of water, & rinse off in cold! That'll confuzzle the whole mess wouldn't it? Your Vitamin D level needs to be addressed immediately for you to make new bone. No sunshine up there? Gary's was so low they put him on prescription of 50,000 units a week! I take 2,000 mg a day anyway,& mine are fine. You should take a good supplement. My flour canister has not flour in it, just bottles of supplements! You need to take calcium too about at least 1,000mg a day. If your D is low so will your calcium as they work together to make your bones strong. (On this I can advise)Don't ever let this happen again or you will be like me giving yourself shots every day! Your RA isn't helping you either. I don't know how you can type so much. Without my beloved Lyrica, I can't hardley move my fingers this morning. Of course they are like the Pillsbury Dough Boys too, & I think he only has 3 fingers. About the same as I when it comes to typing! At least he can use his thumbs. We shall persavere. Hang in there girl, & together we shall overcome... Love ya Sis, Mar
Well our 'symptoms' just never end, do they!!!
I haven't taken the time to read all the responses you've gotten (sorry--just NO time!!), but I have a couple of questions for you--and they may be way off base in your Fibro situation, but here goes:
a) are you hot ALL the time, or does the feeling come and go?
I am hot ALL the time--it feels like my interior body temp was raised by 10-15 degrees after my hysterectomy, and it just never goes away! (And yes, it can be 50 degrees out side and I am STILL hot!). I have NEVER had a hot flash, NEVER had night sweats, and I AM on HRT--so it does not appear to be a post-menopausal situation.
***I have been told by several medical people that the extreme body heat could be from inflammation--- that my body is trying to fight it off by raising my internal temperature, and, until or unless I am able to get ALL my hormones regulated and in balance (including the adrenal and thyroid), it will not go away.
b) have you had your thyroid checked? If you are hypothyroid, then all bets are off--- you need to be medicated with a thyroid replacement drug. I think I have mentioned here that I was originally mis-diagnosed with Fibro (and before that with CFS and Lyme's Disease) because I had EXTREME exhaustion (couldn't even get out of bed!), brain fog, and also EXTREME overall body pain: joints, tendons, ligaments and muscles. This went on for years--until I finally convinced a doctor to recheck by thyroid--- and to go beyond the primary TSH blood test and do several others also. My labs came back showing that I had almost NO thyroid function--although in all previous lab tests I had always come back in the 'low normal' range. This doc then put me on Armour thyroid (instead of the synthetic synthroid), and within one week ALL my body pain had gone away (except for that caused by my long term cervical stenosis).
c) if your thyroid is OK, then have them check your adrenal function. I have what is called Secondary Adrenal Insufficiency, which ALSO causes extremem exhaustion and overall body pain! My body does not make enough Cortisol, which is one of the adrenal hormones that you MUST have to stay alive. I am on a very low dose of cortisone steroids, and have been for close to 20 years now. It is called a 'therapeutic dose' as it is below the level where it could cause all the major complications normally associated with steroids. I take Hydrocortisone--- NOT Prednisone or Dexamethasone--as these are not only much more expensive, but totally synthetic--your body doesn't recognize them as an actual replacement for the missing Cortisol!
Hydrocortisone is as close as you can get to 'real' cortisol, and doesn't cause all the massive side effects of the synthetics (except for weight gain--which, if I remember correctly, would be a good thing, in your case... :).
d) the final thing I can suggest is an MRI of your Pituitary gland. I had this, as they thought I might have had a tumor there--which would have explained all the bizarre symptoms I was having. Luckily, they didn't find one, but they DID find that my Pit. gland was shrunken--which COULD mean that it is unable to put out all the hormones that I need. (The way it was explained to me is that everything comes from the Pit. gland, down thru the Hypothalmus and then on to the adrenals, thryoid, pancreas, etc., and if there is any breakdown along the pathways, it will then affect the various organs.) I am not a doctor, so I might not be explaining this correctly--but I hope you can get the general idea... )
I had many doctors try to medicate me with not only the Armour thyroid and Hydrocortisone, but also estrogen/progesterone/testosterone, DHEA, etc. None of it ever made me feel really normal again.
FINALLY, I found a doctor who practices FUNCTIONAL MEDICINE--which is an advanced degree, where the docs learn how to treat your WHOLE body--and the interactions between the various parts.
THIS doctor confirmed that I had been on too low a dose of thryoid meds for several years, and too high a dose of adrenal meds--PLUS, I was on the wrong type of estrogen replacement, AND, I needed to also be on progesterone replacement (even though all the prior docs had said there was no need for it). He prescribed bio-identical hormones and DHEA, and changed my thyroid med from Armour to just a natural T3/T4, without the pig thyroid included--as many people are very sensitive to this additive.
THIS ALL HAPPENED IN FEBRUARY/MARCH OF LAST YEAR, AND I TRULY BELIEVE THAT I WOULD NOT HAVE BEEN ABLE TO WITHSTAND THE RIGORS OF THE 24/7 LIFESTYLE I WAS THROWN INTO, AFTER JACK GOT OUT OF THE HOSPITAL! I was only averaging 2-3 hours of sleep a night and was under enormous stress, over a five month period--- which is deadly with low functioning adrenals!
I'm sorry I hi-jacked your question here by getting in my 'pulpit' to preach--- but, since this all happened to me, it might also be happening to others who think they have fibro but don't, and are suffering needlessly.
Dr. Oz had an entire program on Functional Medicine. If anyone is interested, it originally aired on 1/13/12, and you can go to his website and find out more info. Or, if you have DirecTV with a DVR, you can tape one of his current programs, then, when you bring it up on screen to watch it, you can go to VIEW UPCOMING and look for this title and record it--- as most of his programs seem to repeat multiple times).
It was a VERY interesting program-- it was titled 'The Fantastic Four', as he had four docs from various fields of medicine who all practice this way. One was Dr. Perlmutter from down here in Naples, FL. My husband and I had gone to him in the past--he is a wonderful doctor! He is a Neurologist, and says that you can reverse the early stages of Alzheimer's disease by changing your diet, etc. Another was a female gynecologist, who believes in natural, bio-id HRT, etc.
Again, Lara, please forgive me for going on and on--- but I 'lost' 19 years of my life to this, and don't want the same thing to happen to anyone else!
Much Love to you, as always,
Mary (the VERY madhatter!)
My ever so lovely brown haired sweet,
I have that problem, too. All of a sudden, I'll break out in a cold sweat, closely followed by an ungodly chill. I, personally, think my thermoregulation unit in my brainstem is the culprit. Everyone else in the family unit are fine ... it's a Mom kinda thing.
That's what I think and I'm sticking to it unless proven otherwise.
The Hottest, Coldest ,Smiling, Happier Hippie ...
Laura w/o an appendage
Hi Sweet Lemon, so sorry you are not feeling well. I wish I had and answer for you, I am not familiar with fibro. I hope your find something to make your pain feel better. I do know that I also have a vitamin D deficiency and have started taking 4,000 mg of Vitamin D and it has helped a little with the depression. Dr. told me to take 5,000 but I am sticking to 4 and eating alot of calcium. I wish you can find an answer..have you tried a site for fibro pain..thinking of you and truly hope you are feeling better..you are always there to help everyone..Love Golda (grandma)
I have the same issue. Do not forget some of the medications we take can also be heat sensitive. Some of my bottles of medication mention this side effect. Some of these medications mess up our internal hormones. I have to have my TSH tested monthly. With frequent med changes and plain old menopause symptoms this is a very common feeling. Not very comfotable at all! Cold weather is one isse that causes fibro suffers to feel more pain. barametric pressure plays a huge part in out symptoms.
Vit D deficiency is very common in men and women. Almost everyone I know has been told they need more Vit D. I take 3000 units daily. Mine was so low when tested. Getting this into a normal ranged helped with being lethargic.
Though the weather has been warmer the up and down changes is not good for fibro.
Are you Vit D deficiente?
In addition to what others have said regarding Vitamin D and the
possibility of menopause I wanted to add another consideration.
I do not know what meds you are on, but I am on many, including
some heavy duty pain killers. The use of opioids has been found
to cause some people to have diaphoresis which is exactly the kind
of sweating you are referring to. It can get worse with activity or
increased environmental temperature. The situation can improve if
you are able to decrease your pain meds (assuming you are on them)
to whatever point it is that your body begins responding to the meds
by causing diaphoresis (the heavy perspiration). I was able to
decrease meds years ago, and it was an incredible relief to find I could
start functioning somewhat more predictably. Now, however, I have
found no other effective means of addressing fibromyalgia pain
other than the opioids. Hence, the diaphoresis is back in spades.
My rheumatologist prescribed a beta-blocker, Prazosin - also used
to decrease high blood pressure - to help manage the diaphoresis.
It helps tremendously, though the diaphoresis still exists to
varying degrees. Should you try this, please use the beta blocker
with care. Initially, it often causes orthostatic, or postural, hypotension
(low pressure upon standing), which can result in lightheadedness
and possible fainting. Usually you simply have to give your body
time to adjust and the lightheadedness eventually subsides.
I hope this is helpful. I totally relate to your frustration. Severe
diaphoresis can interfere with all regular activities, and you have
very little, if any, control over it. It would be much easier
if you were simply going through menopause.
Good luck... Deborah
it seems to me that all of them are saying the same thing,ultra sensitivity to hot as well as cold.some say they just deal with it as long as the pain is under control. If you have a pain free day enjoy it.my doc tells me he can help with pain,and maybe its the meds that makes people hot.its a small price to pay not to mention saves on oil.5 years ago most docs would have said its in your head.thank god for the research and doctors who finally realized its not.take care of yourself.your not alone... Pete
I'm back and forth with heat. But the crappiest one are the cold sweats. I have a pretty hefty sensitivity to the cold. I do take Vit D only because I got a letter from my dr saying that osteoporosis was found in my most recent hip xray (32yrsold btw), I normally take B12, without that I am junk and I take the Vit D. If your defficifcient you should def get on a supp. Vit D only helps set the bar so your body can absorb more calcium to replace old bone.
Dear Sweet Lemon:
Of what you mentioned I am the same way. I'm vitamin D definciency I don't know it is because of the fibromyalgia. What I experience with the fibro is, these prickling sensation on my forearms it is like under my skin. I have to wear a light jacket at all times even during the summertime.
I'm not sure about the menopause like the other members say - it can be anything, but it is definitely the fibromyalgia.
I wish you well.
RE: Mary, mad hatter!! You are so on the money!! I would love to find a functional doctor near me. Where do you look? And you are so lucky that your doctor recognizes Amour Thyroid, and coritsol insufficiency!! My endo doens't believe in that, even though my "allopathic" blood tests come out abnormal. He doesn't believe in the saliva test, so I have no one to order it. BUT, there is a website called Women to Women, started by Dr. Christine Northrup ( before she got famous) who do consultations and vitamin advice on the phone. They have all the natural supplements for cortisol insufficiency, and they have the supplements for balancing out your hormones. These aren't bio identical hormones, (at least I don't think they are), but supplements that help your body produce and balance the hormones. I use their better bones program, and my rheumatologist couldn't believe my last DEXA scan.
There is no trace of osteoporosis (except of course that I have major compression fractures), but my bones are fully intact again, without any sign of deterioration. I was on intravenous Boniva I had osteo so bad. So this place really knows what they are doing. Even my doctors have asked me for all the information so that they can send their other patients there. I mean, my bones look like I am in my 20's now!! They were looking like an 80 YO. The only problem is that it is not covered by insurance, so it has to come out of our pockets. I truly believe that if you have fibro, you have hormonal and cortisol problems. It just makes too much sense.
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