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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?

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.

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

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

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

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.

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

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

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

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!

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 Wed 21-Aug-13 23:04:04

Where are your skin issues? If joints, then could be psoriasis, if inside joints eg behind elbows and knees then eczema

PigOnStilts Wed 21-Aug-13 23:01:58

Well they think I ave psa....wake up with stiff hands and fingers, sore feet in morning too. Improved an awful lot once that feckin heatwave broke.

Icantstopeatinglol Wed 21-Aug-13 23:00:00

Hi holly, I think you definately need to see a rheumatologist. Could your eczema possibly be psoriasis which could point to psoriatic arthritis but that wouldn't explain the bleeding under the skin though? If it is something like arthritis it is hard to diagnose through bloods etc. Definately push for a rheumatology appointment as you need to know what's going on as early diagnosis of things like inflammatory arthritis is important.

Holly94 Wed 21-Aug-13 22:48:03

Attila full blood count, iron check, etc. all the usual. My mum came with me a couple of days after I got discharged from the hospital after my meningitis scare and demanded they put me in touch with someone who knows what's going on. So doctor gave me a dermatology referral. She (mum) didn't really know what to ask for and neither did I.

kickassangel good suggestion smile I think I'll keep my diary up until I see the specialist and show him. Hopefully he'll know the right department to refer me onto.

PigOnStilts sorry you're feeling so rubbish. It's truly awful isn't it sad half the time I genuinely do wonder if its all in my head, but the visible symptoms like my bruising and rashes make me think I'm not just being stupid/a hypochondriac. I haven't had an ANA test. Apparently they're notoriously unreliable! I can't really say that my skin is worse after I've been in the sun - I spent a week in the Spanish sun and my rashes cleared up pretty good. Was lovely to have a week of glorious clear skin. I feel so ugly. I don't know it it's psoriasis or not. I've been told by one doctor it is, another told me its scabies, someone else told me its just eczema. WTF?! My maternal grandfather had psoriasis and my mum suffers from it though.

sophj100 Wed 21-Aug-13 21:59:14

Sorry - just re-read the last part of your thread. I have similar symptoms and wondered about Fibromyalgia but now feel that Candida is to blame and Fibromyalgia is just one of the symptoms of it. Google it and see if you can recognise any symptoms listed. x

sophj100 Wed 21-Aug-13 21:57:19

I would see your GP and get some blood tests done, just to elimnate the more common ailments, failing that see a nutritionists who might be able to establish if your diet is to blame. Allergies to foods or too high sugar levels can mean that even if you eat well, most of the time, your body is unable to get the right nutrients and minerals to help it work properly.

Further research is certainly needed. Don't have your GP fob you off, do the research first and be firm that you need action, letting them know just how you are struggling, to push them to do it sooner, rather than later.

Good luck.

PigOnStilts Wed 21-Aug-13 21:36:19

I have exactly the same and nobody really gives a shit, it's v disheartening. I made them refer to rheumatology, I also asked them for vitamin d test.

Two questions.
1. Did you get an ANA test! This measures antibody levels and can rule out or support other diagnoses. Mine pointed toward lupus....but the follow up tests were negative.
2. He are you in or after the sun.
3. Do you have psoriasis?

kickassangel Wed 21-Aug-13 21:32:19

Can you keep a list of symptoms each day, for a week or two before seeing the doctor? Surely if you have written down just how much you are putting up with, they will pay attention?

My sympathies, it sounds awful.

AttilaTheMeerkat Wed 21-Aug-13 21:20:56

What bloodwork does the midwife do?.

Can your Mum or Dad go with you to the GP next time around?. Someone like a parent could also speak up for you. I would say as well that if the GP practice is dismissive I would change GP practice (this is not an option for right now but longer term I would consider doing this).

I would certainly push for a referral to a rheumatologist, you are clearly unwell and you need to be listened to properly. You need a diagnosis first and foremost.

Holly94 Wed 21-Aug-13 15:42:41

Attila I just got told 'no problems'. I have frequent blood tests done by midwife and none of them ever show a problem either.
I keep going back and being sent away with creams for my eczema. It makes me want to scream. It's like no one is listening to me. I don't know if its because of my age but I know there is something not right and the doctors will not take any notice - it seems as long as my full blood count comes back clear, they think I'm fine.

BrigitBigKnickers Wed 21-Aug-13 13:04:21

My mum had similar symptoms and was diagnosed with a rare autoimmune condition- Wegeners Granulomatosis. Her main consultant was a Rheumatologist. It is diagnosed by was of a very specialised blood test.

Many sufferers spend years before they are diagnosed. I really would push for a rheumatology referral.

spiderlight Wed 21-Aug-13 12:58:58

Oh you poor thing - sounds utterly miserable. I have various autoimmune disoprders and it took me years to be diagnosed - it's amazing how ignorant some GPs are sad You really do need to see a rheumatologist.

AttilaTheMeerkat Wed 21-Aug-13 12:51:10

What did the blood tests with regards to your thyroid gland show?. Do you know the results or were you just told they were within normal ranges. These symptoms as well could point to a thyroid gland being underactive.

Something is wrong here, you cannot afford to be fobbed off. I would see if your parents can now pay for you to see someone privately, I would not be waiting until next month.

Holly94 Wed 21-Aug-13 12:17:57

Thanks to everyone replying. I have a dermatology appointment in September - my doctor gave me a referral for that because of my eczema. I think the eczema is the least of my problems but hopefully the dermatologist will be able to refer me onto someone who can help me.
My parents have offered to pay for me to go to private if we don't get anywhere next month.

StainlessSteelCat Wed 21-Aug-13 09:17:45

definitely ask for rheumatology referral. I had erythema nodosum in pregnancy, presented with bruising and aching joints. gp was stumped, rheumatologist knew instantly. I have if you have this, but coming from a family with many and varied rheumatological illnesses, including lupus, rheumatology sounds like the place to start. good luck, I hope you get somewhere quickly with this.

mankyscotslass Wed 21-Aug-13 09:01:27

You sound like you have many of the same symptoms as my mum, and she has Lupus. It was only diagnosed 7 years ago by a specialist rheumatologist after years of incorrect diagnosis and treatment.

TweenageAngst Wed 21-Aug-13 08:52:20

Ask for a referral to a rheumatologist. Sorry you are not well.

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