I am from Destin, Florida, USA, I hope you don't mind that I am asking a question on your UK website? I do find BehcetsUK very informative and I visit nearly every day. I was diagnosed two years ago, although I have suffered with illness since 2000. It all started with Hashimoto's Thyroiditis, then pnemonia's which followed with a diagnoses of Interstitial Lung disease. My symptoms would ebb and flo until 2009 at which time I had to stop working and was in bed most of the time due to pnemonia, painful arthritis, ulcerations and extreme fatigue. A genital ulceration was found to be vasculitis. I am being treated with many medications but also constant antibiotics but still suffer with feverish episodes which is embarrassing and exhausting. My body feels like an oven when this happens, which is daily. Has anyone else had this problem? If so, has there been any medications that has helped?
When will the fevers stop?: I am from Destin... - Behçet's UK
Hello! Well, I haven't found a solution I'm afraid I too suffer from embarrassing sweats on a more or less daily basis when the sweat literally pours off my body. Not from just the 'normal' sweaty places either but from all over - legs, arms, back, tummy etc etc. My hair drips and my clothes soak through. Every now and then - as now - it disappears for a week or two and I think it's over forever. Nope, back it comes.
We're desperate to buy a new bed - but what's the point when I'll probably rot the mattress? And my pjs have to be washed and dried quickly (I have a dozen sets) so they all shrink in the tumble dryer!
What a sorry state of affairs - all I can offer is empathy I'm afraid.
Welcome to this site. We have people from all over the world that are regulars on here. I too suffer from bad sweats. I get them worst at night and feel like I have just got out the shower (absolutely dripping). I was told it was my medication but have had these since before my diagnosis. They tested me for early menopause but it wasn't that! I think this is just something that us BD sufferers have to put up with.
Hi Angela, Well, I have already gone through menopause, so I can tell you it is not that. I have noticed however, that my discomfort is increased if I drink just 1/2 glass of wine. I once spent a month traveling through Italy and never touched a drop in fear of the consequences, now that's sad. There is no upside to Behcet's. Thank you for your reply. Betty
Hi Betty Hun,
So nice to talk to new people, keeping reading and writing and eventually you will find things that really make a difference to you on here.
I sweat better than a pig in a boiler room next to an axe and a pack of sausage wrappings.
I have now adopted a stance of sitting at a 45 degree angle in bed so that I can breath and watch TV, use my system and most other things. I have a thick furry blanket on my lower half because my joints particularly in my knees and hips are very painful and warmth helps them. I just have pure cotton briefs on under that and occasionally wool bedsocks. (very fetching)
On top I have just a cotton tee shirt/nightie depending on what is washed and fresh from the laundry and have a full size fan working all the time on a setting that simulates real breezes.
( varying intervals and speed of air.)
I use the thickest memory foam matress for my joints but because this tends to be very hot if you sit or lay on it for any period of time I have one of those pads that is filled with water and used to cool parts of the body off under the cotton sheet and wrapped in a Egyptian cotton towel. ( you can see these for sale occasionally in leaflets or disability shops) This is also helpful as it is waterproof and at times I have sudden bouts of urinary incontinence that comes and goes with flares so it protect my bed against the initial sudden feeling of needing to go.
I lean against 3 expensive pillows that are made of washable solid foam (forget the brand but they don't ever change shape, just spring back) and one extremely expensive pillow that is soft and springy and puffs back up easily and doesn't ever flop. (QVC I think but was about £65 for the one pillow) and this one is the main one that touches my body because the filling reduces the sweating on my back. All these are in purest egyptian cotton pillowcases.
All these things combined make for a reasonably balanced environment where I sweat but it is minimised and everything is changed and repuffed up really quickly and all is washable of course.
I guess it's finding the right combinations of materials that help you best and getting enough of them around you to make you comfortable. I'm sorry to say that it turns out to be a very expensive learning curve with many things ending up in charity shops before you find the right combination for you. I think I am lucky to say that I have found the best ones for me that exist.
Good luck hun, hope you find some comfort soon.
Thank you for telling me what is working for you. Now that you mention it I believe I too do better with cottons, especially cotton tops. Thank you for bringing up fabric choices in bedding and how cotton plays a positive role for you. I will make some changes today and hopefully I can be more comfortable in bed too.
I too have these sweats and i am at times soaked from head to toe. It really is embarrassing and stops me doing alot of things. My hair looks like i have just washed it and there os nothing left dry. Like the lady above my legs arms tummy back etc it is awful. In bed sometimes i wake up and i have been sleeping on my side and a puddle of sweat has fillrd my earhole. Such a strange thing sensation when you are only sleeping. I have mentioned this at various meetings with my dr but nothing has been done. If i start moving to do anything it is worse than ever. I hate this symptom is it a symptom of behcets or all the medication??
I think it is the illness because mine started around the time I was becoming ill and before I was taking any medication. They may have slightly worsened but as I said above my GP thought I may be going through the menopause early but all tests were negative. I am sure it is the BD and nothing else. I too sometimes wake up with sweat in my earhole and agree it is a very strange sensation.
Anyway we are all strong people and I say lets sweat away!!! lol
Nobody explained this to me and the medics didn't seem bothered at all - then somebody on here (Suzanne from memory) said she had been told by her vasculitis consultant that these sweats are a common feature of autoimmune diseases. I remember being very angry that none of my medical team had explained this to me because I was really scared of what such sweating might signify. Nowadays, although it is one of my two most hated symptoms (the other is urethral pain), it doesn't scare me any more - it's just an embarrassing and unattractive fact of my life.
I am trying Clonadine 50mcg twice daily - not convinced there has been a significant change though.
I did ask the question on the fb site and had a few replies, one of which said that their seven year old with BD has the same issue. So age is ruled out!
Hello over there across the pond.
As Di (Devonshiredumpling) has already said, my consultant told me this was a common problem for people with autoimmune diseases such as BD, lupus, etc. Apparently our bodies cannot adjust to changes in temperatures as our overactive immune system blocks the signals from the brain! (I guess that means we still have brains!!!) The answer is cotton or natural fibre clothes and bedding.
Can you get largish gel filled cooler packs in the US? They are indispensible during the warmer months. I put one in the small of my back if I am over-heating in bed, so it cools me and doesn't upset my husband. As you live in Florida I suppose you have air conditioning in your bedroom, does that help much? I suffer from very cold feet though so sometimes I need a hot water bottle!!!
Your thyroid gland helps your body adapt to changes in temperature, and I had thyroiditis too, so now have only the smallest part of the gland left after surgery. Have you had your gland removed? If so ask your doctor if that might have some bearing on your problem.
All the very best, Suzanne
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