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Mysterious illness - help me :( chronic fatigue, pain and skin problems

(33 Posts)
Holly94 Wed 21-Aug-13 08:05:59

In January a couple of months after my 18th birthday I developed constant tiredness and headaches. I was always really cold, and the doctors put it down to a virus. My tiredness was extreme. I was falling asleep very early but struggling to sleep through the entire night, waking up several times and I wasn't able to concentrate on my A-Levels the next day. I couldn't go out with any of my friends, I was in bed for 9 pm most nights.
The headaches were just constant. It was a shock to not have one! I was tested for iron, thyroid etc repeatedly - all fine.
In March I started bruising really badly for no reason, especially on my legs and my eczema came back. It's awful - the rashes cover my arms, I get blotches all over my torso and chest, I have eczema on my fingers, dry skin all over my legs and its all over my face. Nothing seems to shift it.
I get pinprick bruising and ended up being blue-lighted hospital in April with suspected meningitis as the bruising was presenting as a meningitis rash. The blood tests showed no meningitis but my white blood cell count was off the charts. The doctor put this down to me fighting some infection.
Around this time I started developing awful morning stiffness in my joints and I'm frequently in pain throughout the day in random places in my body - it's been like this for months. I'm 17 weeks pregnant now and the doctors are putting my aches and constant exhaustion and brain fog down to pregnancy but I felt like this a long time before I got pregnant. I've gone through everything - lupus, fibromyalgia, and I just keep getting sent away from the doctors. It's like no one believes me that I'm constantly in pain and exhausted. I'm always cold. They can't explain my bruising or bleeding under the skin - I get told 'some people are just like that'. Someone help!!! Any ideas? Could it be missed dx of fibro?

Icantstopeatinglol Fri 23-Aug-13 14:19:28

Pigonstilts, I have psoriasis and I get it on my knees and elbows...pretty much everywhere. The morning stiffness in hand and feet sounds like psa, I take strong anti inflammatries and methotrexate now so fingers crossed they help soon! It's not nice at all.

PigOnStilts Fri 23-Aug-13 18:09:40

Can'tstopeating, have you tried stopping eating?! I did a juice fast for five weeks, and it cleared from 95% to about 5%... Only came back after I had my baby, so I was virtually clear for over a year..,having said that its v hard to do and you basically have to be desperate!

Hope e methoxetrate does its stuff soon!

Rockinhippy Sat 24-Aug-13 14:40:07

You might also want to look into Ehlers Danlos Syndrome, there are several different types & bar genetic testing, which sont have been done, it won't show in blood tests.

I've been through similar to yourself, years if it ended with my getting a Fibromyalgia & then M.E. as I kept in complaining if unrelated. Symptoms to my GP - a few more years down the line I gathered a few more diagnosis hmm but I now realise they are all symptoms of EDS - ironically my young DD also had similar problems & years of my fighting to be heard for her sake too, even told by GP not to transfer my health problems onto her - it's growing pains & ibs etc etc hmm

We eventually after my insisting & then starting copying the "minutes" of every GP appointment & then putting a copy of my understanding of the outcome of the last appointment in writing for the GPs attention, that & taking DH along as witness - showed I meant business & wasn't going to be fobbed off -

it took my going that far to finally get a rheumatology appointment for my DD, even though by that time, thanks to information passed on by a friend with the condition, we knew exactly what it was & it linked all her symptoms together as one complaint

DD was diagnosed instantly with 7 out of the 9 diagnostic joints affected - & now has good medical & school back up - I thought at first she might have fibromyalgia too - turned out fibromyalgia is actually a symptom of EDS & I too actually have the same condition, the list of other diagnosis all being symptoms of it too. It's also affected by hormones.

You need to see a GOOD Rheumatologist, one who will listens to YOU not your GP - ask around local support groups for Rheumatic conditions for advice on who is good in your area

Good luck

wrenster Sat 24-Aug-13 19:43:56

Sorry to post and run but look up bechets disease its an auto immune disease

I have PsA and have only recently noticed that a load of other health problems I have point to EDS. i will come back later and write a proper post, in a rush now smile

My sister also has a load of seemingly unconnected issues that point to EDS, including chronic coldness and easy bruising.

GraceAndVirtue Sun 25-Aug-13 20:55:13

Definitely see a rheumatologist. My DM had similar symptoms and was eventually diagnosed with dermatomyositis.

Icantstopeatinglol Sat 31-Aug-13 23:40:20

Pigonstilts, sorry only just picked this up now!
I did try fasting but couldn't hack it, I was basically eating nothing (which wasn't ideal!). I'm currently going through light therapy and I would say 90-95% clear do over the moon! Joints aren't great though but one fight at a time! smile

LilyAmaryllis Sat 31-Aug-13 23:55:46

I was also going to say Dermatomyositis (which I have, but in a relatively mild form, your symptoms don't sound mild). Its on the same spectrum as Lupus, they say. I went to see a dermatologist (who diagnosed this, FINALLY, after a year of symptoms) so its good you are due to see one in September.

The symptoms of dermatomyositis are fatigue, muscle pain, skin rashes, particularly on upper body, face and hands, hair loss.

I suspect it won't affect your baby at all, but you might have to give birth before you can start the treatment, unless they have an alternative medication to the one I'm on.

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