Feeling so low

[DaisyProudfoot]

I'm sorry to whine at you guys cos I know you all have your own problems but if I don't write this down somewhere I'm going to go scatty!

 

It's just ... I've been feeling so bl**dy low ... it's not AS-related, it's Lupus related (my own illness) which I know to many of you will mean nothing at all. Lupus in an incurable auto-immune disease which gives me problems with my joints, internal organs and cognitive functions as well as giving me a lot of fatigue (a bit like ME in that respect). I'm always in pain but it's controlled by medication and most of the time I get along fine.

 

But occasionally I get really bad flares when all the joints hurt like hell and I'm in pain 24/7 and it really gets me down

 

I'm at work ... as usual ... because I don't like the disability to run my life ... so here I sit doing nothing except surfing the net because I can't think because of the pain. My other choice is to go home to five kids on school break and the chaos of an autistic son .... choices, choices

 

I HATE BL**DY LUPUS, I REALLY, REALLY, REALLY HATE IT!

[Kathryn]

Daisy,

 

No need to apologise, a good rant about anything at all is what this forum is for.

 

I have no idea what this must be like for you. I can only send lots of these <'> <'> <'> <'> and hope and pray that this acute pain improves soon.

 

K xx

[oracle]

<'> <'> Daisy <'> <'>

 

Moan away hun and be reassured that even if we do not understand the condition then we do understand. I don't have lupus in fact I don't know what I have. Three years of tests have so far only given me information that I already have - that is I have a goitre. I have not slept in weeks now with my constant jerking, which they can find no reason for and I'm still waiting for a scan.

 

I think that every so often our bodies just say enough! It's as if our insides have taking such a pasting that they remind us that 'we' also have the odd problem or two to take care of. I wish we could set up a holiday home for stressed out parents. Do you think that we could raise the funding needed Of course it would have to be in the Caribbean or somewhere so that we could get the full benefit

 

Carole

[Suze]

Hi Daisy <'> <'> ..........we live in this strange twilight zone on the forum..........we all type messages to each other put smiley faces on and sometimes the reality is completely different. <'> <'> I had no idea you were suffering like this <'> <'> ........thankyou for sharing , your very strong..........just make sure you get some Daisy time <'> <'> .Hope this horrid pain gets better soon.How long do these attacks last?Suzex

[mossgrove]

<'> <'>

 

I know a little of what you are going through as for several years I lived next door to someone who had Lupus. Like you she was OK quite a lot of the time, but prone to bad flare-ups that could lay her very low indeed.

 

No need to apologise if you need to vent on here!

 

Simon

[Paula]

<'> <'> <'>

[Strange girl]

Wish I could help Life can be so unfair sometimes. Hope you get some let up soon. <'>

[DaisyProudfoot]

Awww thanks guys, I knew you would understand .... I wish you were all here with me so I could give you all some grateful <'> <'> <'> .

 

It's an invisible illness, in other words I look perfectly OK on the outside (bit like AS I suppose!) apart from my Lupus rash but people probably just think I've been on the sunbed too long or something. All the inflamation goes on underneath the skin so I can feign being well ... hubbs says my eyes always betray me though .. I guess you can't hide pain in the eyes.

 

Suze: you asked how long the flares can last: hours, days, weeks, months, years ... they're so variable. I can manage my life to some extent to stop the flares happening but sometimes ... they just come. Had this flare a week now. I'm just it passes soon, there's nothing worse than not knowing.

 

One of the girl's at work obviously spotted I wasn't disguising it very well this week because she asked how I was today. And how do I reply ... "oh, not too bad, been better."

 

People don't really want to know do they?

[lil_me]

Daisy you deserve a moan, I know of Lupus as a friends Mam has it, and I know she ends up in agony. Hope you are feeling better soon and the 'flare up' as she calls them doesn't last too long <'>

[LKS]

Daisy <'> <'> <'> from me as well. I have heard of this illness but did not know how it affects people. I hate to be ill and everything grinds to a halt if I am, it must be very very hard for you. Look after yourself

[smiley]

Daisy <'> <'>

 

And have another.... <'>

 

I can genuinely understand how you are feeling. I've had flare-ups since my early teens, joint pain, severe fatigue, rash across my face, problems with my immunity (body attacking itself, etc)...... Infact, everything 'Lupus'. Each time i have another bout, another fresh faced Dr says it must be Lupus and i get more tests, but it's always borderline - so they won't diagnose it as Lupus - at the moment my Drs call it ME... So frustrating.

 

I can totally sympathize with it being hidden - i'm a bubbly person, usually full of beans and bouncing about, but if i have a flare-up, the pain is horrid and i slow down and seize up. Apart from a slight rash on my face - everything looks 'normal'. It makes it hard to explain to friends and family.

 

Try to take it easy - don't push yourself hun.

 

Have a bloomin' good moan if you need to <'> and if you need a shoulder - mine are waterproof

 

xxxxxxx

[DaisyProudfoot]

Smiley, hope you're going through a good patch at the moment <'>

 

Next time you're feeling bad ask to be referred to a rheumatologist. My bloods have always come back ANA negative (which is not unusual in Lupus but they're more often positive) but the doc was so convinced going by my past medical history that I was sent for X-Rays which revealed the inflamation deep down within the joints and suddenly I was under one of the top Lupus consultants at the Freeman. I'm on plaquenil, anti-inflams and painkillers which usually help me cope with what life throws at me.

 

Did you hear the article on Radio 4 last week - Lupus sufferers have 50% higher chance of heart failure, shocking isn't it - made me sit up and think!

 

Thanks again for listening folks, I'm feeling lighter already. Good job I've got a specially adapted chair at work because I reckon I'm going to be online all day!

[phasmid]

Hi Daisy,

 

You know I can understand how rotten you must be feeling, you have my sympathy and I hope thta it is a short lived flare. Rest up, drink plenty and don't over do things.

 

<'> <'>

 

 

Phas

[oracle]

It would be interesting to know just how many parents of autistic children have auto-immune conditions. It is so common that there has to be a link?

 

Carole

[Nemesis]

Hi Daisy,

My DD developed Kawasaki disease when she was younger - it's auto-immune but self limiting and she's fine now. However, it was awful while it lasted so I do have some idea how you feel.

Hope this flare up doesn't last much longer. You are amazing to cope with everything you do and still go out to work.

Nemesis.

[DaisyProudfoot]

Carole,

 

This is what some people think:

 

http://autism.about.com/library/weekly/aa092602a.htm

 

Then there's this:

 

http://www.healingtides.net/autism_link.htm

 

and the good old BBC says this:

 

http://news.bbc.co.uk/1/hi/health/382321.stm

[hev]

hello daisy,sorry to hear you feeling so low,i know nothing about lupus but i really hope it gets better for you soon,i do know that you have made me laugh lots of times in the batcave,i do think you are a strong person,moan away,we all need a good moan

[oracle]

VERY Interesting Daisy thanks.

 

I just read about many of my symptoms on the second link and I'm also three years down the line now. I already know that I have thyroid problems but I have been assured that NONE of my symptoms are connected to this. It certainly does make you wonder?

 

Carole

[phasmid]

Mrs P was told that multiple births can be one trigger for Lupus. It is very difficult to dx as it hides itself behind other illnesses. If a flare ocurs at the same time as something else the 'something else' normally gets cited as the problem. It is only when a flare up occurrs without another problem AND the decide to run a blood test that they can pinpoint it. It's a very good at camoflage is Lupus!

[DaisyProudfoot]

I didn't know about the multiple births thing Phas.

 

My Lupus was finally diagnosed when I went to the doctor (she was a locum) with severe chest pains, turned out I had inflamation in my breast bone and all the ribs linking to it. She read my medical history and referred me to the rheumy. I hadn't even heard of Lupus until I came out of my first appointment with the rheumy and even then all I was given was an ARC leaflet and the telephone number of a support nurse. But I know about it now

 

Thanks for your support today everyone, it's good to have you there. I'll be up late no doubt. I hate going to bed when I have flares because I never know what the following day will bring. Hopefully a bit better

 

Trying to decide whether to make another docs appointment to bring forward next rheumy appointment cos the inflamation in my neck has trapped my ulna nerve and I'm getting severe pain down my left arm. Rheumy said (last November) if it was still continuing may have to have neck operation which I don't want to. Oh what to do

[Brook]

Daisy, <'> <'>

 

I hope this recent flare up passes soon. <'>

 

Brook

[asereht]

Daisy <'> <'> <'>

Edited February 24, 2006 by asereht

[UltraMum]

<'> Daisy <'>

 

My best friend's husband has Lupus - I know how much it affects their lives

He is also a bit of an oddity as the occurance rate is 10:1, women:men - makes the support group meetings interesting - or so he says

[Suze]

Hi Daisy hope your feeling better today, and if not today hope it,s soon.It sounds an awful condition to suffer,thinking of you poppit <'>

[DaisyProudfoot]

Taking it easy today ... spent a good chunk of it watching that Teachers TV - the SEN stuff, very enlightening.

[baddad]

taking it easy - good for you, hun...

Hope you can find plenty of time for more of the same tomorrow... <'> <'> <'>

BD

 

(PS: Go put some clothes on - it's cold tonight...)

[DaisyProudfoot]

DARN ... didn't know you could see Badders ... must turn that webcam off

[justamom]

Good job you have not lost your sense of humor Daisy,can't say that i have much experience with Lupus but son has colitic arthritis and during his flare-ups he is the same as you in constant pain with his joints.

 

I have just called the rheumy (as you put it) to get a earlier app because he is in so much pain..... His knees swell and he battles to walk. He also tries to hide the pain but I can tell (his eyes give it away too). Like the saying "Your eyes are like windows into the soul"...

 

Hope things get better for you ...

justamom

[redberry]

<'>

 

sorry to hear you are in pain Daisy. Hope you get better very quickly!

 

redberry

[DaisyProudfoot]

Decided not to go into work today ... they'll just have to do without me.

 

Just been to the doctors, lovely girl but about as much help as a chocolate fireguard bless her. (I never see the same GP twice, it's the nature of our surgery).

 

Anyway went along to see what she could suggest about making earlier appointment to see my rheumy because of arm and neck problems. She looks at my last letter from rheumy and says:

 

"Oh, yes, they are considering doing some connective nerve tests because of your arm problem."

 

"Yes, I KNOW THAT," thinks I

 

She then has a good feel of my arm, neck etc and says: "The problem is you have so many related illnesses it could be any one of these that's affecting the arm."

 

I also have Sjogrens, Reynards Disease and some other kind of undiagnosed Connective Tissue Disease as well as the Lupus

 

"Yes, I KNOW THAT too," I thinks.

 

So I then asked her whether she can bring forward my rheumy appointment.

 

"Oh, can't you just ring them?" she asked

 

Well, yes I can but you're supposed to get the GP to ring them.

 

"So, ring them and say your GP told you to ring them and get the appointment brought forward." she says.

 

"OK, I can do that," thinks I

 

"So," I added. "What would your advice be on taking St John's Wort for my depression, I don't really want to go down the Prozac route."

 

"Oh, I don't know, how will that affect your Lupus medication?" she says.

 

"THAT'S WHY I'M ASKING YOU!!! You daft bat, you're the flippin' GP."

 

"Well, when you ring them tell them I asked you to ask about that too."

 

With GP's like her... bless her she was very sweet though.

 

Anyway just tried to call my Connective Tissue Disease nurse at the hospital and she's on holiday SIGH!

[Guest hallyscomet]

Hi Daisy, <'> <'>

 

Sorry to hear you are in pain. Does Glucosamine work for this, have you tried it including the one that says Joint Formula.

 

I suffer from Osteoarthritis, right foot was crushed in a ridiculous accident, the pain I experienced was like someone had a fork and was stabbing my foot with it, unbearable. After taking the strongest Glucosamine I could find with the Joint formula for three weeks straight, I was pain free for the next twelve months. A first for me to be pain free since the accident in 1986, even went to the expense of getting Orthotics but no relief either.

 

I still take it but have breaks from it a few months at a time and everynow and then I go back on as the symptoms start to come back, but the relief is almost instant.

 

Just wondering if it could help with some of your symptoms.

 

Yes, I am also pleased to see that sense of humour sparkle through it all

 

Hailey <'>

[DaisyProudfoot]

Hi Hailey,

 

I haven't tried Glucosamine or Cod Liver Oil but I will ask rheumy about that too! I have to be careful with alternative treatments because of the amount of meds I'm on already

 

Osteoarthritis and Rheumatoid Arthritis (which is what Lupus has similarities to but without the nasty deformities) are actually quite different with different treatments.

 

I have mild Osteoarthrtis in my hips but if I ask my rheumatologist about it she looks fairly blank, the problem with specialisation I suppose.

 

Hope your foot's feeling OK, good job you don't live in this nasty cold damp country, plays hell with osteo-related stuff.

[DaisyProudfoot]

Anyway just tried to call my Connective Tissue Disease nurse at the hospital and she's on holiday SIGH!

 

Now the bloomin' rheumatologist is on hols for a fortnight too

Edited February 28, 2006 by DaisyProudfoot

[Malika]

Hi Daisy

 

Comming late to this thread I hope you are feeling better have plenty of those <'> <'> <'> <'> <'> <'> <'> <'> coping with lot of pain is very stressful hope it goes away soon.

 

I have heard a little about lupus and got some test done when I was 20 because my body was in a mess with articulation pain and swallen fingers as well as a complete erratic blood count, I eventualy ended up receiving gamaglobuline for nearly 6 month which was alot at first then spaced out. This just the year I was due to finish my study with penty final examination, just got them but with no extra while I had very good result for nearly 3 years.. then after a year I developed vitiligo ( destruction of the skin pigments by my immune systeme) which is not painful as far as my skin is not expose to sunlight if not it does burn deeply.

As far as the immune systeme is concerned my gran had Grave disease my mum has rhumathoid artheritis and my daughter has grave disease which she developed 2and 1/2 years ago.

 

Just went trough the links (thanks) about immune systeme and autism, I am one of the persone who is convince that there is a link and even there could be some attack from the mother immune systeme to the unborne baby which would explain insome cases a different brain structure in some autistic.

 

All the best and take care. <'>

 

Malika.