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.

You know alypaly , your description sounds just like how Ive been for months.

Im Scared to ask what the heavy treatment was ,but may be I shudnt know until I know what Ive got!!!

I went to see the gastro on Monday very late and hes not yet convinced it is all Erythema nodosum , as some look very much like it and some dont.

He did say its obviously some form of auto immune disease (short for reactionary virus), and has mentioned colitis & IBS. Im booked in for a colonoscopy in a few weeks when this has calmed down a bit and then he will get a definite picture of whats happening with me and why I may be reacting to things the way I am. & loosing so much rapid weight. He was very honest with me like the docs at local hospital and said that he really didnt know yet, so hes done loads of bloods and booked me in today to see a dermatologist and a rheumatologist to help build a better picture of whats going on.

He gave me a sheet on what not to eat for IBS and suggested I have a very gentle diet for now.

Im just shattered all the time and its so hard to eat as I have them in them all over my mouth also. I couldn't stop balling yesterday, I'm turning into my 6yr old daughter!!( I think Im mourning the possibility of no more buffalo hot wings lol).

I suppose its the thought that I may have some life changing condition which will lead to a life changing diet as Ive never until now had a problem with any foods.Its quuite hard when its all so new, as Im finding it hard to not have food go straight through me,hence the weight loss. Rice cooked in marigold veg stock was the 1st thing in days yesterday that didnt seem to create a reaction.

Ive started a food diary chart to see what & if I get an immediate reaction too.

was just reading your posts again..im not a doctor( just a mere pharmacy dispenser) with a great interest in medicine...(probably frustrated doctor)
Was looking through all my dermatology books and you do have a lot of symptoms of sarcoidosis. Dont be alarmed....it is common and not life threatening. sent you a link.have a read and see what you think? ... ? arthritis az list ? sarcoidosis index

I was terrified when i felt so ill..i really thought i had cancer that noone had spotted...i was so depressed as i woke up feeling ill every day for 3 yeras.

I eventually backtracked mine to my sons parvo virus and got a test.
Can you back track your to anything...antibiotics,tyreatment,food, bedding..anything?

My heavy treatment was a really painful course of intravenous immunoglobulins for one week in hospital. It was like injecting syrup into your veins ,it was so painful.
But 10 days later ,i was transformed into a new person and now have all my vitality back.
Parvo affected my auto immune system and it was basically destroying itself. I almost ended up with full blown ME..wasnt hungry,didnt eat,and yes sore eyes that felt like a had rubbed chillies in them. My face used to flush for no reason,hot sweats,total malaise....i had the lot.
I do hope you get sorted....life gets so miserable when you feel there is no end to it.
I almost gave up...but decide to do my own research which paid off for me. If i can help dont hesitate to ask!

try eating beef consomme when you are hungry and eat things that are not complex proteins to begin with...see if that helps.

what no hot buffalo wings...life wouldnt be the same,would it life without spicey food is not a life

MY other thought was actually crohns disease with you having uveitis and bowel problems.

Did you have a virus in the few weeks prior to this or has DD had slapped cheek at school. she is the right age to catch it. She may have just been off colour with no real symptoms. Some kids are ill ,some arent. But it might be a long shot.....but ask GP for a Parvo B19 test and see if its that...there is nothing to loose

have you got a picture of your rash as i used to work in dermatology.

wow thank you for all your comments alypaly and suggestions. It does very much seem I have several of the sarcoidosis symptoms.

However I saw the dermatologist today , who in his opinion, says I have cutaneous Vasculitis, which could or not be caused by a bowel problem. I had more bloods taken and a biopsy done on some of the blotches. He wants to see whether my anti bodies are fighting my blood, or something like that.

I was in the hospital for for quite a few hours today and am getting really tired from it all! I now have to go back in an hour for an appointment with a rheumatologist & it all feels quite overwhelming. Although on the positive side , at least its all being dealt with as urgent & Im very lucky to be covered for it.

Ive got to think what to eat for dinner , as last nights experiment with veg stock poached chicken and sweet potato mash didn't go down to well with this very confused body of mine! Im getting very hungry on only porridge,(I think its the milk making me feel nauseous) and rice!

When you say complex proteins are you meaning animal ones?

Ive put some rather flattering photos of me legs et al on my profile (for now!).

Ive mentioned having antibiotics to the gastro and the fact I realised I was allergic to them. This was about 5wks back. Ive also told them all that I had a chest infection for the said anti biotics.

Im trying to think back and see if either if them had something that made their faces flushed. Both of them have had infections ,dd2 had ear infection 3-4 wks ago & may have had reddish cheeks. I cant quite recall.

melsy...i have to apologise i got my sarcoidosis and carcinoid mixed up...
It was carcinoid that the docs were looking at for me...which was the potentially fatal one.
Sarcoid is not dangerous it is just a nuisance so dont worry about looking on the info.
I have had so many investigations over the last 6 years for gut and skin problems that all the names have started to roll into one.
But please be reassures that if it is sarcoidosis...you will be fine...SO Sorry.

sarcoid and carcinoid do sound similar but believe me they are not!

melsy.....the rheumatologist is definitely the right route to go down. He will test all your IGg and IGm and CRP ,Latex and ESR and from that he can get a clearer picture of whats going on. Did they take quite alot of blood samples. It was my rheumatologist the got me the immunoglobulin treatment.

I think overall theyve taken about 10 vials of my red stuff!!

erghhhhh my word that carcanoid is worrying! Cant look!!

Can I say that Im feeling pretty rubbish today!! Sorry to have a moan , but I musnt dismiss it otherwise it just makes my tension inside become unbearable.

Im so hungry , it looks like stock boiled rice again! Do you think tuna in spring water will be too rich?

you havent got carcinoid.....that was me..and i didnt have it thankfully. It was parvo.
I was one of 3 lucky people that my rheumatologist put on a clinical trial with a clinician taking all the bloods. 2 out of 3 of us were virtually cured.

I still think yours sounds like sarcoid or chrohns... What are you tummy symptoms or all of them if you want to offload.

Whereabouts are you in the country..if you are anywhere near Manchester the MRI is where i got my treatment. Rheumatology were brilliant and as i was already suffering from Chronic fatigue with it ,i was scared of getting full blown ME. I was absolutely knackered for those 3 horrible years.

You are aloud to moan BTW.

How long have you had the bowel problems for and how long for the skin.
Wish i could help you

I had Erythema Nodosum last summer - ended up with very swollen ankles after having 'insect bites'. Went into all of my joints and could hardly move. GP was useless - went private and was diagnosed within hours with sarcoidosis.

Your symptoms sound very similar to mine. I could have slept constantly - had a baby and 2 other dc at the time and I would fall asleep on the floor while changing nappies! Had to get up in the middle of the night to take nurofen so that I could get out of bed in the morning!

After the sarcoid diagnosis I was put on a dose of steriods (for about 3 months) - these were amazing within 2 days I was almost back to normal. The tiredness took quite a lot longer to go but was told that this is just the body recovering.

Private doctor gave me lots of info - if it is sarcoid come back on and I'll send/link you to all that I have. Blood tests will confirm it if they look for the right things. Sarcoid has 2 forms Cronic (ongoing with lots of related issues) and accute - I was told the Erythema Nodosum normally is linked with this sort that has less complecations and normally burns itself out.

Will stop going on and hope that you get to find out what is wrong with you.

Spelling very poor there - hope it makes sense!

now that i have seen your photos and you say you have bowel problems.....a calculated guess would be that you have crohns disease which is causing the erythema nododum to manifest itself

erythema nodosum often occurs as a result of other underlying problems and it may be your stomach problems that are causing this. let me know what your bowel problems are. Doctors take years with some people to diagnose crohns disease...my friend has got it and it took docs 5 years to get her sorted.
I do hope doc can get to the bottom of it for you...i know how you feel. Its really frightening NOT knowing and unfortunately it plays on your mind when you lie in bed awake.

BTW like your cake did you make it...i make cakes too...on my profile

why dont you try a soya milk or go to a chinese or indian supermarket and have a look at rice milk as a substitute

have they scanned you for gallstones to rule it out....my gp told me i had ibs before i had gall bladder out and i had a really bad bout of gastritis too

Well I saw the rhuematoligst last night and she is quite concerned. My combination of bloods together (think they tested about 30), dont quite add up , my CRP is showing signs of inflammation , but only the start. She does feel i have some kind of auto immune disease , but shes not sure yet what it is.

She says its very possible I have a mild form of lupus,(my great aunt had this), looking at the bloods, but it normally shows as having very low hemoglobin and mines at 13, but there are other factors involved. They re sending my water off for further culturing to help build more of the picture.

She did give me a steroid injection to see if I get some relief from the joint and muscle pain & if I do it points more to auto immune problems.

I didnt remmber to mention sarcoidosis.

Thank you for telling me your story lolar , you didnt go on , its very helpful information.

ok onto the bowel thing for alpaly. Thank you for your help here , its good to know I have someone to talk too.

Basically I can go from being totally blocked up and not go at all to completely the opposite when I do go. If I eat rich foods or pasta then my stomach bloats and is uncomfortable and I get a sicky weird feeling and a pain basically in me backside! I then may be go twice. I can go up to 4 times a day.

your description is definitely pointing to crohns for me with the erythema nodosum.Both are auto immune and will respond to steroid injection. That will help with all the inflammation and give you a feeling of well being, but they need to get to the underlying cause. Have they suggested a colonoscopy yet?
You can get pain in your colon as it becomes very inflammed during an acute attack. Have you ever passed blood in your stools?

if this thread disappears,dont mind you stalking me.....doctors do frustarate me at times and you start to feel a bit desperate and scared. Sometimes its just nice to know someone is there ti talk to
Auto immune diseases are difficult to diagnose as alot of the symptoms overlap in each disease so its a process of elimination. HOpe you havent got lupus

Yes blood in stools but do have piles also! I have a colonoscopy booked for mid dec , as they dont want to do one right now with me being in pain & also the prep is rather revolting & as Ive lost weight and feeling rubbish they want me to stabilise a bit 1st. They said theyd inject my hems to sort that out at the same time!

I have had blood and protein in my water also.

I must say that apart from a bit of a back ache , my joints are feeling a bit less sore today, although my stomach hurts as I havent eaten anything yet & Im still wiped out! Ive just been tken to shops to get some appropriate cereals and snacks and some bits to make gentle soups etc. May be the cramps today are having too empty a stomach?

May be the steroids are helping already, although Ive read that it takes much longer for the tiredness to lift?

This all feels so surreal, Im telling people around me whats going on as simply as I can, as I have been cancelling play dates and get togethers and some are finding it difficult to know what to say to me .

I have exactly those lumps (mine always start on my elbows too) but nothing suspicious ever shows up in my bloods other than having low iron and slightly low B12.

I have just given up going to the doctor now. But I too get the sore joints and the lumps together!

and they tested my bowel (which I thought it would be as I get diarrheoa too) and there was nothing suspicious there that would point to Crohns/Coeliac

it is just so so annoying (I also get headaches with it)

I will be interested to hear what they say to you melsy!

as you say melsy lupus is in your family and it is familial.
the blood test would sow that up conclusively tho.

When they were testing me for lupus, crohns,RA and other auto immune things i think they did
CRP,Rheumatoid Factor, ESR,IGm and IGg and obviously all the full blood counts too.
My ESR was elevated which made them question things...but they never found the cause until i found it out myself.

I bet you are so nesr to tears with all this playing on your mind...i hopr you get some answers soon.
Where did they inject your steroid,into the joints or general.

I ended up using hypromellose and lubritears as my eyes felt as tho they were constant burning and sore...they did help.

Our bodies seem to do weird things to themselves hey foxinsocks! So you are also none the wiser? I dont know if theyve looked at my B12 levels.

I think they are waiting upon some of those further bloods for me. Id like to get a copy of the blood works list.

yer its the not knowing thats hard, your mind goes to all sorts of places. Once I know , I can learn about it and find ways to deal with things and learn to live again , properly. Although if they come up with nothing , then what? I am very lucky that I have 3 diff specialists working on it, they are all perplexed as yet.

Ive moved the colonoscopy nearer, typically it was booked same day as my daughters show at school where parents are invited and also , I just cant wait 4wks, the anxiety does me in!!

I did start feeling much better last night , but the tiredness and exhaustion is not shifting as yet, that takes more time as u say. Its that double edged sword though, if I am better on the steroids then its a sign of having an auto immune disease.

The steroid was just injected generally.