Anyone else having a difficult time regulating their body temperature? I seem to be cold all the time lately. I showered yesterday morning and was cold all day long and am still cold. I haven't been able to get warm again since then. Also, I just went through a nasty bout of trigeminal neuralgia this past week....anyone else here have that?
I am always hot and get funny looks with no coat on in cold weather lol …
No TN but the constant cold is soooo frustrating and uncomfortable. The only things that help are getting ( and staying) under a hot shower, getting under a thermal blanket, lying on a mattress warmer, wearing warm gloves ----- but none of the above last very long before recurring! When I mention this to the Dr., I get that blank stare and a change of subjects. I'd rather he tell me he had no answer or that I was nuts but being ignored just heightens my anxiety level and therefore my symptoms! I have tried Benadryl and found it to be @50-60% helpful if I kept the dose below 50mg. (sleepy) Mode of action ??? Worth a try?
If you find an answer, let me know and I will be grateful.
I find trouble with keeping my knees warm,the house is warm,but I sit with a blanket over my knees,I also wear a layer of thermal underwear which helps with the rest of the body,it’s like an inner cold,I mentioned it to the Nerve Speacilist,he said he wasn,t surprized as my nerves are slow,that’s the nearest that I came to a sensable answer.
I haven't had the Trigeminal Neuralgia, but I do find myself getting uncharacteristically cold on occasion. I used to be known as a human oven, basically heating the room just from my body's thermal radiation (yes, I exaggerate). But for the past two winters I occasionally find myself freezing and buried under piles of blankets while my sweetie sits there feeling fine.
My head down to my shoulders can break out into a dripping sweat, quite often when i am sitting or laying down. The outside of my left upper arm is constantly cold and freezing. the small of my back in the evenings now becomes freezing cold, to the extent that I will qrap several layers around that body section.
As for my feet, they constantly feel like they have frost bite :(
LoL !
Once again we get snowflake answers :D Everyone different
RE:"Anyone else having a difficult time regulating their body temperature? "
Yes, Escential oils (Pumkinf Fax and Primrose) have improved my capiary flow.
Have you had a compete panel for your throid check TSH T3 and Iodine??
My husband suffers from hot flashes from his CIDP and his hands and feet are constantly swollen. Nothing in particular triggers it, it just comes and goes. If anyone has any suggestions to help alleviate these symptoms, we would be so grateful.
I am always cold - have had my thyroid functions tested many times and always normal. With the cold winter lately, I have been using a heated throw to cover up whenever I am sitting down. I've noticed an odd thing - while under a heated throw, I will get a shiver that goes down my entire body, like from my brain stem all the way to the ends of the nerves. It's like an internal shiver. Has anyone else ever felt something like that?
I had Raynauds where my finger tips wuld turn white and when I got frozen food out of the freezer it was painful.
It starting spreading to other fingers until I used cold press (without solvent) Oils like Flax-Primrose and Pumpkin Seed...
It will not recify invivo like fish oil
I am newly diagnosed, but find that my biggest issue is my hands. During the onset, my hands would be cold and swollen/red, and sweat. Then, they just were cold constantly, sometimes freezing. Before my loading dose (Ivig), I had gloves on all the time and ordered dragon naturally speaking to help out with typing. After this loading dose, the old symptoms seemed to come back where the cold sensations comes and goes and sometimes w/ swelling.
I also have issue with warm water, my body gets all red and weak. In the onset, I would feel like I was frostbit from a mild heat. I even went into a steam room a few times before I realized what was going on, thinking I was releasing toxins that were causing my symptoms (pre- diagnosis)- very bad idea for me:) It's too bad, because that used to be a huge stress relief.
I don’t feel cold. I always sweat. My hands an feet are numb . Hot water in the shower is soothing. Hands shake joints are always swollen and painful.
Thanks DazedandConfused. I will mention this to my MD - currently being worked up by neuromuscular specialist for muscle problems vs. nerve problems. It is interesting to note that when the EMG was done by neurologists, they diagnosed a nerve condition, when done by this neuromuscular person, she diagnosed a muscle problem!! Anyway, I'm now awaiting results of a muscle biopsy.
Speaking of B12 levels, I had that checked about 2 years ago and the results were really high, like I thought maybe toxic levels. Theoretically, you can't have toxic levels of B12 because it is a water soluble vitamin and dumped by the kidneys when you have more than you need. So, I've had the niggling question in the back of my mind - is there such a thing as a B12 metabolism dysfunction? I do plan to ask my doctor at next visit but I think I know what the answer will be - one of those blank stares.
DazedandConfused said:
Dac,
Sorry...I missed one point in your post.
I also share the whole warm water thing, with sweating, weakness, etc.
My doctor tested me for "Autonomic neuropathy" using a tilt table, some electrodes that measure sweating, and a host of other things such as blood pressure, pulse, respiration, EKG, etc.
I tested 7 of 10 positive on what is called a CASS score (rating from 0 to 4 in each of three categories tested during the tilt table session).
When I asked my neurologist what's going on, because I started passing out from hot showers and having to lay down on towels for 1/2 hour afterward, due to the profuse sweating, he explained to me that getting hot (in CIDP with autonomic damage) causes blood to go to the extremities, which drops blood pressure, increases heart rate, etc.
The sweating is (in my case) from the autonomic neuropathy. Often times, people with autonomic damage have heat or cold intolerance, and along with that, they can have "hyperhydrosis", which is excessive sweating. They can also have a lack of sweating (or reduced sweating than normal) in nerve damaged areas, as well.
I feel like a broken record, but these are things your doctor REALLY needs to know about, and you can discuss these symptoms and maybe talk to your physician about undergoing an autonomic tilt table testing battery.
It's painless, though people have been known to pass out if they have bad enough autonomic nerve damage. The whole test takes about an hour, and most of that is lying down on a table, being asked to breathe fast, then slow, then to breathe into a tube which increases the force with which you have to exert when you exhale, etc. All throughout, your heart rate, pulse, blood oxygen, etc.. are being monitored. Then, after about 45 minutes, the testing staff wraps really wide velcro straps across your body to hold you on the table, and they tilt the table so you are "heads-up".
That's when the action happens quite often, because if your autonomic nervous system is damaged in certain ways, your blood pressure will drop more than 30 points from when you were laying down. Some people pass out, some get a migraine, some get "woozy" and feel faint. It's all about whether the body can recover your blood pressure in a timely manner, or blood oxygen levels, blood pressure, etc.. can drop significantly enough to cause black-outs, etc.
It is a very easy exam (I survived!) and it is (in my doctor's opinion) nearly "essential" (in his words) to determine if there is any autonomic damage.
From what I've learned, the autonomic nervous system is the part of your body you generally cannot control willingly...such as heart rate, blood pressure, sweating, etc. If there are damaged nerves interfering with the signals from your brain to your arms or legs, for example, then again, as my doctor put it "People with normal autonomic nervous systems get a signal from the brain at the end of a heartbeat, telling your body to unconsciously contract muscles that push blood back to your heart. In people with CIDP and other neuropathies, the nerves that carry that signal are damaged, and your arms, legs, or both do not get the signal, so you sometimes end up with low blood return to your heart, resulting in a partial heart-full of blood being sent out to your body. That's why you can feel dizzy, weak, get vertigo, feel nauseous, and a host of other symptoms from low oxygen to the brain".
Again, my doctor's words, but they stuck with me like glue, because they explained so much, especially after the autonomic testing turned out to be high on the "CASS" scale. The higher the CASS score, the worse the autonomic damage is.
So, enough about me and my doctor.
It's up to every person to decide what they will talk to their doctor about, but if you think you might have some autonomic dysfunction, then by all means, perhaps it's a good time to talk to your physician about the testing to verify or eliminate that potential condition.
Also, about nerve damage and CIDP....the sensory nerves do weird things. In my case, aside from sharing your "Frostbite" feeling, the tops of my feet feel wet nearly all of the time (plus numb with pins and needles sensation).
Again, according to my neurologist, the damage to the sensory nerves make them send random or "bad" signals to the brain. There are many kinds of sensory nerves. Ones that feel heat, cold, pressure, wetness, pain, etc.
When the sensory nerves get damaged, they often lose their "specialization" and just fire-off strange signals, so your brain does not know how to interpret them.
Even with IVIG therapy for about 8 months, now, the nerves sensory nerves that have replaced some of the numbness in my feet actually feel painful...moreso than before. I've been told that when sensory fibers grow back, they are like shoots off the root of a tree...growing randomly. They are not specialized, either, so they just fire randomly, which the brain interprets as pain.
If you are a "Caddyshack" fan, as Bill Murray said (as "Carl, the greenskeeper's assistant) "So, I've got THAT going for me!"
Sorry for droning on and on, but I never realized how much "stuff" has been stuffed into my head about nerve cells, nerve damage, etc.. until it comes flooding back.
I, too, use Dragon Naturally Speaking, and it's fantastic, since I can no longer use a keyboard...one more reason (no excuses, but a reason) why some of my responses are so darned long. I just talk and the "Dragon" does the rest...so sometimes it's difficult to realize just how much has been "written" until I look back and say "You've just bored this person for 15 minutes!"
Thanks for listenening to me go on and on. Helping others is definitely therapeutic...I didn't mean for it to be at "your expense" by giving you eye strain!
Feel better!
dac1223 said:I am newly diagnosed, but find that my biggest issue is my hands. During the onset, my hands would be cold and swollen/red, and sweat. Then, they just were cold constantly, sometimes freezing. Before my loading dose (Ivig), I had gloves on all the time and ordered dragon naturally speaking to help out with typing. After this loading dose, the old symptoms seemed to come back where the cold sensations comes and goes and sometimes w/ swelling.
I also have issue with warm water, my body gets all red and weak. In the onset, I would feel like I was frostbit from a mild heat. I even went into a steam room a few times before I realized what was going on, thinking I was releasing toxins that were causing my symptoms (pre- diagnosis)- very bad idea for me:) It's too bad, because that used to be a huge stress relief.
I suffer from horrible hot flashes from my CIDP. I am only 50 years old. I have had CIDP for 4 years now (feels like a lifetime). Right after diagnosis I was thrown into full menopause even thought it seemed early for my family history to go into full menopause at age 46. My doctor said that it is not related to my CIDP. I beg to differ. Anyway, now I get these horrible hot flashes throughout the day and night that cause me to feel weak and I break out in a wet sweat all over my upper body. They only last a few seconds but happen almost once an hour. I have been waiting for them to diminish if is due to menopause since as most hot flashes due to menopause do diminish or lessen in severity after a year or two. This has been 4 years of constant hot flashes. They wake me from a deep sleep numerous times a night. I never get a good night sleep anymore. Nothing seems to trigger them they just come. I also get a horrible, anxious feeling just before the hot flash comes on. Can't explain this feeling I get but it is like the world is about to end and I feel it deep in the pit of my stomach. I have come to realize this is an aura and that a hot flash follows the anxiety feeling within seconds. I am so sick of being hot and sweaty all the time. Any suggestions?
Thanks DazedandConfused. I return to Cleveland next week, my first appt since diagnosis and loading dose. I will mention the heat sensitivity and inquire on the autonomic system. I will share any learnings.
Yes... My body Temp is nuts! Am it is not menopause. I get hot and cold, and hot and cold. My feet are always cold if the Temp outside is lower that about 75 degrees or so. So living in Northeast Michigan, proves to be a challenge. I'm sitting with my feet under a small electric blanket as I type this. I am sure this is part of the Sensory nerve damage. I have a lot of sensory damage according to the Neuros.
The one i've yet to hear anyone mention is the small of your spine, right where a belt crosses it. Freezing cold to the point of pain in the evenings, will last for an hour or three, then fade out.
Thank you again Dazed. Your information is very helpful.
Thank you for the good advice. I have talked to my physician and had thyrioid and hormone tests. My doctor said that it is menopause and that it will subside over time. She offered hormone replacement but I declined - enough drugs in my body. I am still convinced that this is somehow triggered by my CIDP. I was not in menopause until I got CIDP then I went into menopause within weeks. Seems fishy and not the norm for the women in my family. Usually late 50s not mid 40s. I just deal with fans and layered clothing for now. But was just wondering if anyone else with CIDP find a relation with hot flashes and getting diagnosed - that's all.