If you're reading this, probably the title got your attention. Truth be told, I'm 62 and haven't worn a bikini since 19**!
The reason for the strange title is my new symptom. My body cannot seem to regulate temperature. As I sit in my comfy living room recliner, it's 72* and I'm in my long, winter robe, socks, slippers and a wonderful, furry blanket. Yet I am freezing.
At some point I am suddenly way too warm for comfort. Often times I've stripped down to my skin (I know, TMI! I live alone except for my cats!) and still felt too warm.
This cycle has been driving me more batty than usual these past few days. It's disturbing when I'm in bed trying to sleep. I've had to move to the other side of the bed and another pillow due to perspiring.
Oh the joys of yet another symptom. Can anyone relate? Any suggestions?
Often times suggestions are to call your neurologist. I live in Central WI and have been through 4 of them and can't seem to find one who will take me seriously. One dismissed my concerns by telling me, "You are a low maintenance patient." Huh? So I have to be high maintenance? What exactly does that mean anyway? LOL!
Happy Thanksgiving to all of you! I am so very thankful for this site where we can all be real. Prayers for all of us who live with challenges.
Hi, MarciaD, if I remember correctly, you lost a good amount of weight. Congrats on that again!!
I've always suffered with heat extremes since MS. (My husband walks around in his winter cap and coat while I wear next to nothing and complain about the heat.) But I've noticed over the past few years I've developed an intolerance to cold extremes. My neuro attributes this to autonomic system involvement. It regulates your body's thermostat. Have you had your thyroid checked? That can affect that as well. I also attribute it to age. I'm just a couple years behind you.
I'm sorry about the lack of good neurologists near you. Maybe finding a better one would be worth the drive? Mine is over 2 hours away.
I hope you get the answers and care you need...from your 👙 clad sister. 💕
Ah, Tutu . . . thanks for the giggle! Love the bikini emoji!
I have not had my thyroid checked in a couple of years. Probably not a bad idea to ask again.
As for traveling 2 hours to see your neuro. Does someone take you or do you spend the night in a hotel? I suppose it wouldn't kill me if I had to. Maybe I can call it a road trip and live it up!
I drive myself. I just plan on it being an all day affair. My neuro will also schedule my MRI (if needed) a couple hours before my appt with her so I'm getting everything done on one day.
She is at an MS Clinic and, to me, seeing her is well worth the exhausting day. I just make sure I have nothing planned the following day or two.
When I have an appt. We get up at 3:00am and hubby drives the 90+ miles to San Francisco.. just to be ahead of the commute traffic. We have breakfast there and get into their parking area early. We just wait for the appt or check in and walk a little bit. The MS Clinic is close to the bay and allot going on to watch.. definitely a long day and always so good to get back home.. I take a pillow and blanket just in case I need to rest or wrap my feet which always feel cold. Just glad to have a dedicated hubby and Neuro.
Good for you, Tutu. Just thinking about a full day like that gives me anxiety. Maybe the connection you have with your doctor is what gives you that ability. One day I want to share a similar story with you!
You certainly don't want to add anxiety to everything else, Marcia. But if you find anxiety mounting due to your dissatisfaction with your doctor, it might be worth the switch for you. I like your idea of making an outing of it and staying overnight. If my husband didn't balk at that, I would do the same. But now that he's retired, I'm pretty sure he'll accompany me to my next appt and probably do most, if not all, of the driving.
Since my cats are my only 'significant others' and they're not allowed in doctor offices, maybe I'll invite a girlfriend along. I miss the days of having my husband come along to remember what I didn't. Although I scribble myself notes at every appointment, they don't often mean what they were supposed to when I read them back!
I do understand the temperature issues you're having. Mine aren't as extreme as yours, but aside from the usual post-menopausal hot flashes, there is definitely something different for me, too. I have to have a heating pad warm up the foot of my bed or I can't sleep because my feet are freezing. I know I'm less active than I used to be, and wondered if that was why I always seemed to be much colder since my symptoms started in August. My thyroid is fine. Maybe we will have to do the layering thing all year. I feel like a lasagna sometimes with all my layers! I can't undress as far as you can; my dog wouldn't mind much, but my son might be a little shocked.
Looking good Marcia, well done with your weight loss. I am 60 and haven't worn a bikini in as many years as you. I too get so hot I cannot stand being downstairs with the heating on. I find it very anti social this ms. Wearing t shirts at this time of year, when it's 3* outside. Also I find having a hot meal or a hot drink it really sets me off, I go all weak. Anyway if anyone knows why please share, thanks Jimeka
Anti-social indeed! I'm dreading letting my family know I will not be making the trip in for Thanksgiving this year. Argh. I know they don't understand, but I get snarky when they make comments like, 'oh, once you get here you'll be fine'. Then I remember that they say those things cuz they WANT me there! Duh!!! How many people say that to me??? LOL!
I went through the hot flash phase and that wasn't fun. This back and forth thing sucks the little bit of energy that I have left right out of me.
Would it be wrong to streak down the driveway of my complex? Yeah, never mind. I just scared (and scarred) myself!!!
I have some body temp regulation symptoms. I've never been good with cold and now with cooler weather, the cold makes things worse.. I have what i call hot flashes frequently and just try to stand in the doorway to the garage and cooler air. wear lighter clothing etc. I've taken to washing my face and arms with a cool wet washcloth before bed. I attribute the hot flashes to MS as I'm 68 and way too old to be having the other hot flashes.
I'm glad you've brought this up - I have been struggling immensely since relapse with my thermostat ! I seem to be set to sweat by default these days. Always prone to overheating/sweating before, it became ridiculous during relapse - soaking wet, literally running down arms from pits, more so the left one ( ? ) It has calmed a bit since then but still remains a big issue. I spend all my time going into bathroom to clean up/re apply roll on deodorant. I use anti bacterial soap in an attempt to control the odour but it doesn't last long. It ruins clothing rapidly. I have avoided social gatherings because of this : (
Interestingly, I had a few episodes of true hypothermia during relapse - freezing, mad shivering, shaking and extreme sweating. Lasted 20 to 30 mins. I took my temperature during one of these - 34.6 0c. My GP passed these off a a virus ( ! ? ! ) since I am not yet diagnosed. They have similarly put the overheating/sweating down to menopause, as I am 48. No help offered.
Since the weather turned colder here in the UK, I find my hands/feet freezing, my body shivering and setting off painful spasms but the sweating has gone into overdrive. My face/hair are now getting damp too. Of all the issues I am now dealing with, I do find this one rather distressing, very time consuming and socially limiting. I'm going to link to a couple of relevant websites below. I spent the warmer weather constantly wetting my vest and hair to help control heat exacerbation of symptoms. I am prone to eczema on my hips/ribs where I overheat. I have worked in a vest today in my private job, whilst my client was wrapped up warm ! I take roll on with me now so I can sneak into bathroom and clean up when possible !
Hi Marcia, Count me in with the temperature challenged. I have raynauds which leaves my hands and feet freezing but at the same time my core is melting. My hands feet will be blue, purple or white and hurt! I went thru change long ago (64) so I think this is MonSter related.
Me too! Except to bikini part...never worn one. Can't stand the heat or the cold. Use a cooling vest and lots of air conditioning all summer. My body won't sweat at all so I get really hot. Freeze in the winter and wear layers and hang out under blankets. Then to top it off all year I die of heat when trying to sleep. Go figure. In fact that's why I'm responding at three in the morning. Waiting for the bed to cool off again. No wonder I have fatigue.
Oh Stacy, I experienced the bed part you write about last night. I sleep alone in a Queen size bed with 2 pillows and yet there wasn't a dry spot left. Not to mention . . . phew!!! So not fresh! As soon as I find some spunk, the bedding needs to be washed.
I'm laughing to myself as I think about an apartment with multiple bedrooms so that I can always find a fresh place to sleep. I know . . . not funny! My brain is so warped that I find humor in really goofy things! And so it is . . .
Well look at you Hidden You go girl! You look amazing. l haven't worn a bikini since l was a teenager and when l had my gall bladder out, my gradma made me promise never to tan my stomach again? Donno why, but her wish is my comand ♡
I'm having a heck of a time trying to regulate my internal heat. I'm either freezing or sweating. But my hands are like ice. To the point that it hurts to touch them sometimes.
Been 4 yrs since l started menopause, so think that's over, Idk lol. So l think it's MS heat that kills me, and l just step on the porch for a bit. It's only 27° out there.
Time for you to become high maintenance my friend lol and get a new neuro. Mine is 2 hrs away also. It's an all day deal, with mri's done the same day.
Thank you, jesmcd2! Grandma must have been very special to you! Awesome!
There was a time when high maintenance was a bad thing. Maybe it's time for me to get bad! Thanks for the advice!
Many of you have responded that your Neuro is a distance away. I've made up my mind to make it my business to find the right doc. Any suggestions on an MS Neuro in the Green Bay, WI area? How about the Milwaukee, WI area? I'm broadening my horizons!
Hidden check out what John just posted and see what they can do for you. Finding the right neuro l think is priceless. I go to an MS clinic at an university hospital. I feel they will have the most up to date info. Not to mention lm proud to say that my clinic is part of MS PATHS. That with other world renowned MS centers and Biogen, that gathers patients info in 1 system so Dr's can use as research that could hopefully lead to new discoveries. ie: MS Connection fall '16
And my grandma was always my light in a very dark world growing up. I wear her ring on a chain at all times ♡ She is always with me.
I too have temperature regulation problems, have had to come in and take a cold shower, after working in the yard in hot weather or a hot shower after being out in the cold. I still have hot flashes and sweats due to hormones even though I went through menopause in my 40's (61 now). I find that drinking any alcohol will make me have way worse hot flashes.
Morilyn, you brought up an interesting point. Alcohol. A glass of red wine is my 'drug of choice'! It doesn't take many sips to experience bright red cheeks and total weakness of arms and legs. As I become one with my recliner and enjoy this treat, parts of me is super warm and yet I'm needing my blankie. Like a wine drinking toddler!!! OY . . . there's that wacko sense of humor again.
Oh drinking how l miss my tequila yum. And my schnapps *sigh* Man l could drink with the best of them. Lol l have 5 brothers, what do you expect lol. But since MS l cant even have 1 or lm sicker than a dog.
Just wanted to chime in to say thanks to Hidden for sharing all of your progress and for your Thanksgiving well-wishes to everyone on this platform...everyone at MSAA wishes you the same back for this week!
I see you've received some very helpful feedback from some of your fellow My MSAA Community followers. I would also like to recommend our Client Services staff here at MSAA's dedicated Helpline who may be able to give you some additional resources on neuros and other assistance in your area of Wisconsin:
MSAA’s Helpline may be reached several ways:
* Call (800) 532-7667, extension 154, Monday through Friday, 8:30 am to 5:00 pm, EST
* Email MSquestions@mymsaa.org
* Chat live via your computer through the online MS Chat feature
Hi Marcia and welcome to the group. Congratulations on your weight loss, this is a great accomplishment. I'm 52 and I struggle with heat and cold issues. I thought at first the heat issues and hot flashes were peri menopause related, but know it's my nerves being out of wack. I walked around sweating and feeling my scalp was on fire. I also noticed my feet and hands felt like they were burning. I also experience the cold intolerance and from the time it drops temperatures below 70 degrees in the suburb of Chicago I live in, I'm constantly walking around in my robe, fleece or down coat. I'll have neighbors come to my house and when I answer the door bundled up, they apologize for holding me up because they think I'm dressed up to leave somewhere. I have to explain its because I'm cold. Sometimes though, I get so cold, almost to the bone, I have to take a very warm shower to get my body temperature up. My sister also has MS and she is experiencing this too. I know you may not get any relief for your symptoms, but you'll find a supportive group of people here that are willing to listen. Good or bad. Judi 😊
Hidden I live in Sycamore which is right next to DeKalb, IL, home of the Northern Illinois Huskies. I'm very familiar with Schaumburg. I used to work out there and have relatives out that area. I haven't found anything as of yet because I am still in the process of being tested for different things. I haven't even posted here all that has been going on because I want a definite confirmation of my diagnosis. I have been diagnosed with early stages of MS, so sometimes I'm leary of posting because I haven't had this disease as long as some of you. Also I have a very hard time making the time to take care of me because both of my children have a lot going on with them, so I'm usually running them to doctors, school and work. Judi
Back in the day when my children were young, we used to go to Sycamore for the Pumpkinfest! We loved the parade and the little restaurant we stopped at! Great memories!
Although it is understandable that you focus on your children and their needs, don't let yourself get too far down your priority list. Hopefully that you are able to do so means that your symptoms are occasional and short lived.
Please keep this post as your 'go to' place. I'm just now allowing it to be mine. It feels good. So many amazing folks on here who really care.
As a mom, it's what we do. I understand. For me it was easier to deny what was going on within myself and focus on making sure everyone was ok. Not smart, but it's what it was.
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not even at Easter where it's always been tradition to take a shot of whiskey. Now it's a shot of apple juice 
SSI Hearing Scheduled!
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