Getting worried something is really wrong - LUPUS UK

LUPUS UK

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Getting worried something is really wrong

13 Replies

HI I Might be being silly but I'm getting really worried over my list of symptoms, ill list them down here Some of them I know are common but I'm getting scared over the less complained about ones. Seeing my rheumatolgist tomoro but im finding it hard to walk about due to one of the more embarrassing ones and iv gotta take my son to nursery in 25 mins. Symptoms are: fatigue, drowsiness, insomnia, memory problems, high fever constantly, shaking, sweating, sickness, dry Ness "down there" causing a throbbing pain from friction, pressure on my head, confusion, bad thoughts, off my food, mood swings and stomach cramps with bloated tummy.

Please help i need Some advice on the down under pain especially

XX

13 Replies
serenigirl profile image
serenigirl

there is no cure i have found yet apart from the creams or jelly you use before sex to lubricate might help to ease it im not saying it will but its worth a try as for your other symptoms i can associate with them i have been unable to walk for the best part of a year and i find constipation is one of my biggest problems

I bought Some stuff today for women in menapause that the pharmacist said could help but gotta say the way you applicate it is making me cringe :/ they told me its really common to go a bit dry on lots of meds :( so embarrassing. The Horrible thoughts are really frightening ugh,I feel like Im losing my mind. It's disturbing. I literally shake my head to make them stop. Do you have this? What is it? Also I'm throwing up a lot and I don't want to eat anymore iv just no appetiete and have to force it down, I used to be anorexic and bullimic and I don't want to re lapse so I'm making sure I have enough food to keep it under control and if I do throw up I try to stop or eat after. It's really scary tho I have a young child and the way I'm feeling and How angry I'm getting I'm scared ill upset him by losing my temper, I'm a really relaxed person aswell so this last few months has been out of charecter x x

MandieR profile image
MandieR

ohhhhhhhhhh bless your heart! you sound as if you are really going through it at the moment.

For me, anyway, 90% of the list you mention I think we have all had or are all still having in varying degress, although the dryness isnt one that I have had personally, but all the others are a definite yes. IT IS HORRIBLE AND IT IS SCARY AND YES YOU DO GET SCARED WHEN YOU CAN FEEL ANGER BOILING UP INSIDE YOU.

The only thing I ask you is if you are on plaquenil? I found, even though I was only on them for a short tyime that my ager became uncontrollable, I said evil things to my partner and lashed out, something I have never done before, and also this overwhelming sense of impending doom. These two I definately put down to being a side effect of these drugs and have now stopped them,

Not sure if this helps but maybe could give you something to think about.

Also knowing the wonderful 'friends' I have on here I know it makes a world of difference to realise that there are other people who you can actually relate to, share with, makes a huge difference.

Keep your chin up huni xxxxx

I'm on hydroxycloroquine atm and other cocktails including morphine adalat and other blood thinning stuff. It's so frightening, I can't Tell my partner because he would really worry, I had severe depression problems and self harm when he met me and I don't want him getting scared I'm going hurtling back :( What can I do? xxx Xx

Sher78 profile image
Sher78

The dryness 'down there' could indicate sjogrens. They always mention u're eyes & mouth getting dry but they never tell u it affects the 'intimate areas' too :/ The only thing I can suggest is making sure u wear pure cotton knickers.

As 4 u're list of symptoms, they r all common with lupus, even the anger & agitation. I 4 1 have experienced every symptom u have mentioned my lovely x

Purpletop profile image
Purpletop

Sounds like you may be in a flare, just as well you're going to see the specialist tomorrow, tell him everything, including the bad thoughts and fear that you'll lose it. Keep strong till tomorrow!

Adamine profile image
Adamine

Hi... It all sound horrid - ...

I have pastels to suck for dry mouth & gel and drops for my dry eyes... But they never mentioned dryness "down there" - so (I'm 52 & also on HRT) I use lube for sex, and have found that if my bits are a bit sore good old vasaline works...

Maybe you need some kind of antidepressant to level your mood, best to talk it through with yr Doctors - be honest and direct and makes sure he knows you EXPECT help... Be brave, your not alone. XX

Snm24771 profile image
Snm24771

Hey I thought HRT was a Definately NO No with lupus suffers?

What's hrt?

Nightjar profile image
Nightjar in reply to

Hrt stands for Hormone replacement treatment.

Nightjar profile image
Nightjar

Hi Loubielou, I too suffer from dryness. I'm dry 'everywhere' a lot of the time - but worse when feeling lupusy. I usually use Aloe Vera Gel (Holland & Barrett), as it is one of few things my body tolerates. I put the gel on my eyelids on going to bed and little dollops on lips and ulcers in nose and mouth as well as 'down below.' It may sting for a moment (not much) but heals redness, swelling and ulcers overnight. I also use the gel during the day - less amount but several times. Sometimes I use Organic Coconut Oil - may be better to use during the day. (Always buy the largest jar - food section for best price). Coconut oil is very soothing and doesn't soil sheets or clothes (as other oils do). You can eat it too. xxx :)

I shall make a trip to town then :) Thank you xxx

Suzie profile image
Suzie

Try using an aqueous cream to wash with 'down there' . No perfumed washes. When you have a flare up talk to you Gp and get a weak steroid cream to use sparingly. Do not wear trousers only skirts and they have to be cotton along with the next size up cotton pants. For some reason having a bath is helpful rather than a shower. But don't forget only use an unperfumed soap in the bath. Good luck I only get this for a few weeks a year now but I had it constantly for two years about 10 yrs ago and it nearly drove me insane!

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