Covered in about 30+ insect bites since Friday & have severe aches & pains in whole body

[melsy]

Could this be related or do I have some strange virus? I also have a headache and feel nauseous, but dont have a cold or cough. All I could do yesterday was sleep on and off all day. Some of the discomfort was alleviated by nurofen and an anti histamine.

never heard of a general steroid injection being given....i always thought they were used for localised inflammation???? hey ho...im learning new things.

Hope you have a better weekend and it helps with the pain melsy

how are the 'bites' melsy,have they stopped multiplying.

spots seems to have stopped today I think, although another one came up in my mouth yesterday, fippin painful!

Dh keeps going on about M.E now! Arghhhhhhhhhh , like I need more conditions to worry about!

Like a very good friend said earlier , no need to get stressed , as many consultants talk out loud when discussing things and I may not need to worry, yet!!

auto immune diseases are weird..i used to feel ok at times and feel like whizzing round and doing everything and by tea time i was ready to collapse. I just used to feel totally burnt out after a short period of activity. I used to try to play badminton but my joints and fingers,knuckles and feet used to feel like swollen sausages. And in the morning i would wake up and feel as though i had got hot socks and gloves on..it was horrible.

how are you today melsy.
Just asking,where you had you blood saples taken,have you had a reaction to the sterile needles.
Just asking...please dont worry. Really concerned as you really dont sound very well

BTW i would just do what your body is telling you,despite how frustrating it is. Try and de-stress if you can.

aww bless you for checking on me alypaly, very thoughtful.

Im just drained, nauseous, achy and fatigued mostly & its taking very little to make me stressed. I dont know if Im dehydrated or not , but was quite headachey yesterday. Although I did have 4-5 cups of drink, some herbal with maple syrup in.

Yesterday I was not a good way in the lower regions & Im trying to work out what set me off. I did have some Rachels live yogurt the day before, so it could have been that? I just dont know.

Ive felt really down since late yesterday. All morning Ive been quite upset about the potential huge change to my life & diet. Im getting increasingly frustrated and confused about what to eat, what to buy and how to cook. DH says its too much for him and is angry that this will change our lifestyle and ruin everything!!

The only thing I can notice in my veins where they took samples is a slght swelling of the vein and yellow brusing.

Everyone is saying dont get upset until I have a dagnoses, but I go to the fridge and all I see is potentially toxic foods, I look in the mirror and see a tired gaunt face and I look at the blotches all over my body and feel self concious. I dont feel like me at all.

sorry feeling v sorry for self ,its not a good look! Need to get it out and deal with it.

Keep it simple

Dont stand at fridge feeling overwhelmed

Fook the cookbooks on your shelf

Keep it simple

Drink 10 glasses of H2O a DAY

You need basics, so keep it SIMPLE

You will get stressed and worse. Clear you head, stay sane, BREATH, listen to your breath

Have a simple mantra, write it on your wrist, look at it if you start getting het up, Like:

Breath
Relax
Drink

or

Paps says Do AS YOUR TOLD

Your dh says its too much for him "THATS A BIG SIGNAL"

Its not about making RADICAL CHANGES

He does not have to change his lifestyle AT ALL!!!! thats a relief eh!!! Nothing to ruin.

KEEP it SIMPLE

it's interesting because I thought they were bites at first too

no, they are none the wiser. I've stopped going to the doctor as they couldn't find out what it was and seemed to be annoyed that I kept going back

the doc thought the lumps were erythema nodosum - I get outbreaks of whatever it is. I thought it was a hypersensitivity to my own menstrual cycle as it seemed to be chiming in with a certain stage but it doesn't always and I ALWAYS know when it's coming as my joints hurt first then the rash comes out.

I hope you feel better soon and I'll follow your story to see if I can pick up any hints!

melsy,dont jump the gun and feel that you have the worst thing...i know thats really hard,having been there. It will take its toll on you and it will make you feel very low,if not depressed,until you get a proper diagnosis
At the moment they have given you a very general diagnosis...vasculitis...which is just a general term...( a bit like saying you have rheumatism when you really have osteoarthritis IYGWIM) At the monemt they are giving it this blanket term until they can hopefully nail it down to a proper condition that is causing it.
I know how you feel,i used to live it,sleep it and breathe it because i was so frightened. I hope DP becomes a bit more supportive.And yes it is truly knackering having these autoimmune diseases. But i wouldnt start altering your diet as it may have nothing to do with it.

if its any help....i used to work in dermatology and have seen pictures and peoples skin,almost identical to yours for many years when i was with that company.They dont look like insect bites at all.....i am sure you will find that ulcers in mouth (apthous ulcers) and the skin/bowel are all connected...and then hopefully you will have peace of mind.

Paps , Im on my 4th glass of liquids (mainly water) for the day and thats alot for me! I dont do simple very well as you know lol!

So I gotta calm it down a notch eh!! I just find this a very very challenging place to be.

Trying to keep everything simple ,but just want to eat gaucamole & olives and butter ad finitum though lol. Mind you mouth cant take it!

You are right though alypaly , as Ive removed dairy & wheat for the last 9days and Im still experiencing symptoms, albeit lesser ones,so its possible that its nothing food can change right now. Its just that I see bright red streaks in my BM and wonder, is that rasberries or something else?!

May be part of the food thing is a way of making me feel like Im doing something to heal/control help whats going on?

My mil called today (not a great thing for me) & says shouldnt I be doing something to sort this? ehhh , isnt 3 different consultants and various pending tests something???? [confused emoticon]!!!

foxinsocks , sounds like you need someone new to look at you when in the throws of it all?

HI melsy.........Yeah i know its easy for others to say calm down....but unfortunately if it is an auto-immune disease,stress makes it worse...try not to let your mind do over time until its diagnosed.

I wouldnt remove two things at the same time as you have no way of knowing which one is ok and which one isnt.

If...and Im saying if you have Crohn's disease it's important that you eat a healthy, balanced diet with a high fibre content, unless you are prone to blockages. This is especially true when your symptoms flare up, as you will need to replace lost nutrients, although you may not feel like it. If you can eat a normal diet, you should continue to do so. However, you may find that certain foods disagree with you or that you need to eat more of particular types of food such as starchy carbohydrates (eg potatoes, bread and pasta).

You do seem to have alot of symptoms of crohns especially with the bleeding in bowel movements too,and the sore eyes(i remember them looking at crohns for me when i had these symptoms) Its so frustrating as all these tests take so long on the NHS.

These are typical symptoms of crohns
mouth ulcers
joint pain
eye inflammation
rashes
ulcers on your skin
and in an active phase it causes abdo pain and rectal bleeding.A common skin complaint is erythema nodosum which is globally called vasculitis when they havent a clue.
You need DP to give you a hug and some reassurance dont you.

Foxinsocks...have they stopped looking for a diagnosis for you. It is horrible when Gp's start getting annoyed..its cos they havent a bloody clue and they hate to admit it, but it makes you feel like a hyperchondriac doesnt it. I would insist on further tests...its your body not theirs.

Any news yet melsy? Are you feeling any better..how is the rash?

Hi alypaly , lovely you come and check.

Saw Rheumatologist this morning, who has now ruled out lupus , thank gawd, that was terrifying. Shes not convinced its crohns as my hemoglobin is normal & the steroids haven't prevented stomach problems, although it did get rid of the rash and the pain??? So its not yet ruled out and some further bloods have been taken today , to look at iron. Their also looking at my VB12 levels and some other vit/mineral levels.

They agree that the current diet is quite restricted & may not even be necessary, but as they are still testing , they want to keep my system as stable as possible, esp as some of them are quite invasive on the delicate area.

My system does seem to be better when I only eat plain soluble fiber foods like rice, but Im running out of ideas! Poached cod in rice dream and rice cooked in veg stock is waring thin!

The biggest problem is despite being more stable, Im loosing weight every 48hrs and this is not good , as my BMI is now below 18.5!

Ive tried to eat some normal bits , by adding eggs to gluten free pancake mix, peeled lightly fried courgettes,live yogurts, Gluten free mayo potatos and felt really sick and uncomfortable after.

Hopefully the colonoscopy on Tues will give some more answers , or may lead to further tests if they need to look at my small bowel which means swallowing the camera thing.

have you still got the ulcers in your mouth?

Yes the steroids will help with any rash or pain as they are a global anti-inflammatory. Unfortunately,diagnostically that is not a help,other than to say it has an inflammatory aspect to it.

See if doc will prescribe you some forti juice. Clear fruit juice with abotn 300 calories a bottle. You can get them on a prescription. I had them when i suffered with my gall bladder earlier this year,they were a life saver.

No ulcers now , they have almost all healed. Thank gawd, as now I can eat withought screaming in agony!

Will have to try and remember the clear juice suggestion , when I go in for my colonoscopy, will ask them.

My sisters friends suggests they look into over active thyroid/gravs disease. She has no thyroid & has medication daily, but she says my symptoms are very much like a thyroid problem.

Only 3 days till me big oop the bowtoom pipe test and hopefully all will be revealed!

Hoo hum , gotta just go and work out what I can eat for lunch now , hav not had a good morning tum wise. Checking on my food diary what I ate last night!!

Hope your ok Alypaly, thank you for talking with me, it makes a difference when you know you can discuss things with someone.

glad it makes a difference to talk,wish i had had someone when i was ill for three very long years.I had to go it alone.

Have you mentioned sarcoidosis and crohns to the doc.
I hope they give you some answers and then at least you will have peace of mind.
BTW Are your eyes still sore?

At least now your ulcers are healing you can have something spicy.

Mumsnets amazing hey when going through things.

Shame for you not having anyone at the time , must have been very tough for you, but youve come through to the other side and your experience has helped me and I sure many others.

I did mention sarcoidosis to the gastro , but he just laughed & said to mention it to the rhuemotilogist, Ive forgotten each time! I am seeing her in 2wks though.

They are still looking into possibilty of crohns.

My eyes seems fine for now , think it was more when the rash was at it worst.

Dont think my tum can take the spice , I dont dare right now! Ooooohh to eat some real flavour, rip chilli con carne, hot wings & tom yun goong!!!

i will think of you when i go out for my chinese tonight

I dont think the gastro should laugh at you mentioning that at all,it is quite feasible. I think it is all connnected. When i did dermatology one of the derms said that very often the skin reflects that something is going on internally. I dont think your gastro should be so dismissive.....they do make me cross sometimes. I think they hate the thought that you might get the correct diagnosis and proove them wrong.

Glad you are a bit better.

Guess its chillies for me tonight,with the sweet and sour of course.

popped in to see how things are going. You sound bit calmer

hope the camera thing goes well x

good luck melsy

I have had those tests (colonoscopy and endoscopy) and none the wiser

I have very similar symptoms and results to you so would be very interested to see where you land up as I might take the lead from you as I've given up!

I get mine in bouts...the gastro thinks they are not picking up what it is as every time I am tested, I am not having a bout! But who knows...

good luck...neither colonoscopy or endoscopy were half as bad as I thought

.

Hi Paps, Alypaly & foxinsocks.

Just preparing crapping myself for my 1st bottle of phospho at 6:35, yummm!! I have DVD's, books and newpapers all lined up for a long night ahead in my bathroom lol.OOoohh its sending shivers down me!

Ive pre warned my little dd's that mummy wont really be around to do much the next day or so!!

I'll look forward to breakfast of a 2nd bottle at 6am also!!

Although at 5:30 Im having my stitches out of my biopsy , so all in all a rather glamourous and exciting time to come!!

No food now till tommorow at may be 7pm! Just what I need at my weight!

May be by tommorow night i'll have some answers.

Like you said foxinsocks , these things often seem a lot worse in anticipation than they work out to be, especially after having a proper GA surgery a couple of years ago

jjust check that they dont use the one that used on the previous colonoscopy!!!!!!!!!!!! just joking....trying to keep you smiling.

how did it go melsy...are you off the loo yet