[MelissaLJ]

I am just wondering if anyone else gets incredibly intense "hot flushes"? Not really a hot flush (I know them well from IVF drugs), but such a heat it feels like you are on fire from within? It makes me break out into a major sweat, saturating clothing or the bedding. Happens a lot at night. However, no fever.

I know they say Lupus causes fevers, but I never get fevers, i cannot remember in my life having fevers. My entire life have had incredibly sensitive glands, that would swell profusely with only a minor illness or general unwell feeling, but my temps tend to be typically lower than normal...

Also, anyone else have the major hair loss within a short time? Does it ever grow back?

Sorry, just rambling, but was wondering if anyone else experiences this. I have SO many questions, but I feel crazy writing them all at once, so maybe a few every few days? lol

Thanks again

Melissa

 

[Lily]

Hi Melissa,

Prior to my diagnosis and subsequent treatment I was absolutely burning up so badly I thought I would spontaneously combust at any moment :lol:

They weren't hot flushes although several docs tried to tell me they probably were They werent like a flush they lasted a long time and my skin was hot to touch all over my body. At one stage they were so bad my son said he could feel the heat coming off me standing some distance away (that sure reassured me I wasnt going crazy!). If anyone hugged me they said how hot I was. Yet I didnt have a temperature at those times.

At night I would have night sweats so badly I soaked the sheets and it went off and on all night every night. Exhausting. My lupie doc explained that it was the out of control inflammation causing this to happen when I finally got to see someone who knew that they were talking about.

I havent had great wads of hair falling out, just mainly the breakage around the hairline with short bits growing there once I felt a little better. I think most of the ladies here with lots of hair loss found theirs grew back once they started on treatment and their lupus was controlled. It's a little different when someone has discoid lupus though, there is scarring and the hair tends not to grow back in those scarred areas on their scalp.

I believe Nioxin is one hair care product that some have tried with success, so that's worth looking into, but hopefully once you see the doc you can get started on some meds to help the disease process damp down and that will solve these problems for you.

sending hugs,

love
Lily

 

[eagle55]

sweating

Hi Mellisa, yes that has happento me also lucky not to often.and it does happen when i am flaring. as far as hair loss yes when i got sck i had long hair and it fell out quickly. i one point i wore atlot of different ball caps. but mine did grow back it is not long but atleast i have some. the product Lily memtioned worked real well for me . but if it makes your hair dry stop it for awhile. so maybe you need to ajust your meds. sometimes it is one of the lovely thing about lupus we get to live with. i know alot of lupies that there hair has grown back. meanwhile there are alot of cool hats and scrafs out there. take care sue

 

[Katharine]

Hi Melissa,

Yes, I used to get this a lot. It has improved since being on medication and it is pretty rare for me to get those night sweats now.

I do still get periods of feeling extremey hot. It happened to me again yesterday - as you can see we're in Belgium, it's not exactly summer here, we have snow at the moment I was doing nothing, just waiting at the bank and I got so hot that when I got home I had to have a shower (and this was with no jacket on).

I also used to think that I had never had a fever in my life, as I truly believed the last time must have been as a child. I have since discovered that what I didn't rate as a fever is actually a low grade fever. I don't always have it at the same time as that feeling of being hot but quite often and it does tend to tie in with flares (at least if I also feel tired - as in that wall of tiredness and legs weighing a ton - and my muscles ache etc.).

I believe this can also happen from thryroid problems. I have hashimotos underactive thyroid but it is well regulated so I think it's generally not that causing the problem.

Katharine

 

[sobo02]

Yes Melissa, I do get the hot flushes. I just went to see my Gyno a few weeks ago and she told me I'm probably still having hot flashes from having my hysterectomy in 2005. But now I'm not so sure. Once I got on my meds for Lupus, they almost completely stopped. But for the last few months they have been horrid. They are all day and all night. I have had a fan blowing on my side of the bed for the last few months now. Its still cold here, my poor husband is thinking of sleeping in the spare room, LOL... As far as losing hair, yes. My hair is falling out. But not real bad. I've been using the nioxin shampoo and conditioner. Seems to help.