What is Fibromyalgia? And Lupus?

[quetiapina]

I stopped working for 3 years and went back to work in 2005. I'm a stubborn cow though and force myself to. It's blummin hard sometimes, and I can only manage part time. I'm lucky in that my employer allows me to work from home when I need to and I have flexible working hours. There are days when I really have to force myself to go to the office but so far it's working for me. We are all different though and that is not a judgement on anyone who doesn't work. I get DLA etc and the other benefits of being registered disabled but even so I couldn't afford to not work these days.

Yes, it's hard financially hard isn't it. I was lucky in that I had a job with a pension - my union managed to get my 11 years paying in doubled so I have enough to pay the mortgage.

 

[swizzlestick]

Hi there

Just wanted to say that they call lupus the disease of many faces as it is very complex and affects people in so many different ways. There are also different types of lupus. systemic, discoid, central nervous system lupus, sub cutaneous lupus. It is very common for lupus sufferers to be underweight or suffer drastic weightloss when in a flare. Evidentally, I am not one of those people.

I was dx in 2002 after almost dying with lung complications. I, like at least 50% of sufferers do not have the 'butterfly rash' but I do have peripheral neuropathy involvement and a bunch of other co-morbidities. I also have what they call lupus anticoagulant which is a clotting disorder.

I suffer chronic fatigue and brain fog which are helped by the plaquenil but unfortunately, it does little for the pain. there are a bunch of other meds I have to take too for different things.

It is because I have this and many other conditions that it has taken 2 years to be given the ok for wls. I have my respiritory testing on tuesday next week, then hopefully wait for the op appointment to come through.

 

[quetiapina]

Hi Swizzle, you have had a really rough time with your health and I think getting on with life as much as poss shows an incredible strength in you and everyone else with this nasty nasty condition. I really hope all your tests are completed and you get your WLS as soon as poss. Lots of luck to you for your respiratory tests.

 

[shelbell]

Swizzle is lupus anticoagulant the same as Anti-Phospholipid Syndrome/Hughes Syndrome?

 

[PinkyButtonz]

Forgot to add, I'm not aware of a link between stress and lupus, apart from the obvious that if you're stressed and it affects your sleep, that will make the chronic fatigue worse.

Oh and on chronic fatigue, a lot of people really misunderstand that. Mine has reduced since the op, but it used to drive me mad that I'd say to hubby that I was tired, and he'd say go to bed. Sounds obvious! The problem is that sleep doesn't make a jot of difference to chronic fatigue, you can sleep for 15 hours and wake up feeling just as exhausted as you did before. So if you friend says she's tired, don't tell her to go to sleep!

I was told there is a link between stress and Lupus.
My Lupus and been under control until I lost my dad in June 2007. If was about 6-8 week after the shock of losing him set in the I had to be put on meds for my Lupus.

How can I help myself?
Some of the factors which exacerbate lupus are stress, excessive sunlight and, occasionally, drug [COLOR=#737373! important][COLOR=#737373! important]allergies[/COLOR][/COLOR]

(especially to the antibiotic Septrin). Once the patient is treated there is every possibility of a normal lifestyle. Even those patients who are sensitive to ultraviolet light and develop skin rashes can, with normal commonsense protection against excess UV exposure, lead a reasonably normal lifestyle. There are no [COLOR=#737373! important][COLOR=#737373! important]diets[/COLOR][/COLOR] which have been found especially helpful in lupus though it must be said that some patients do appear to be allergic to certain foods and the only way to find this out is by trial and error.

 

[swizzlestick]

Hi Shel

Yes Lupus anticoagulant is the antiphospolipid syndrome or Hughes Syndrome. Professor Hughes who discovered the condition was my doctor at the Lupus clinic I am under until he retired a couple of years ago. He was a lovely man. It's also called sticky blood.

 

[shelbell]

never heard it called that before, ooh I have a new syndrome His book on lupus was amazing, the one with Triona Holden, it taught me so much about lupus and hughes. The combination gives me an 80% chance of miscarriage with any pregnancy

 

[PinkyButtonz]

never heard it called that before, ooh I have a new syndrome His book on lupus was amazing, the one with Triona Holden, it taught me so much about lupus and hughes. The combination gives me an 80% chance of miscarriage with any pregnancy

I no its hard but try not to worry Shell.
I had symptoms of Lupus before I had my daughter. I wasn't diagnosed till years after she was born and she is now 19 years old.

My GP thought I was work shy and basically thought there wasn't anything wrong with me.
I was referred to Dr D'Cruz and he diagnose Lupus and Hughes Syndrome. He later went on to work with Dr Hughes at St Thomas Hospital.

I was taking Warfrin, but now take Aspirin.
Do you take anything for your Hughes syndrome?

 

[Snowcrystal]

My GP thought I was work shy and basically thought there wasn't anything wrong with me.
I was referred to Dr D'Cruz and he diagnose Lupus and Hughes Syndrome. He later went on to work with Dr Hughes at St Thomas Hospital.

Hi Pinky

There were conditions that were not considered as real before but are now finally being recognised as being a legitimate condition....So sad that anyone has to suffer the indignity of doctors who don't really listen and make assumptions like yours did.

xXx

 

[swizzlestick]

My sticky blood med is clopidogrel (plavix)/
Pinky, I think D'Cruz is still there (St Thomas), at least he was a couple of years ago. My doc there now is Khamasta. alhough at my last appointment there I saw a lovely lady called Davies.

Shel. I had a history of misscarriage prior to having my wonderful son in 92. I wasnt diagnosed with Lupus and the anticoagulant until 2002 ten years and numerous health scares later.

At St Thomas they have a special pregnancy unit for women with Lupus who are trying to conceive. At the Lupus Clinic itself there is a large notice board in the waiting area with hundreds of photos of babies born to mothers with Lupus at the special unit and equally as many thankyou cards.

I would suggest anyone, no matter what part of the country they live in to contact the Lupus unit at St Thomas if they are trying to conceive. There used to be a website where there was a lupus nurse from st thomas who would reply to emails I willt try and find it should you need it.

 

[shelbell]

I'm not on any treatment for either the lupus or the hughes. I was on hydroxycloroquine a few years ago but that's the only treatment I've ever been given for the hughes, and it reacted with another med so was stopped.

I'm not even monitored these days. Aside from through my GP. Lord help me when I next flare!

 

[PinkyButtonz]

I was on Hydroxycloroquine for years. Not that I felt it did any good, then suddenly had a reaction to it. I was in so much pain and had muscle weakness.

So suprise especially now your expecting that no one is monitering you.
Even at my quieter time I have regular appointments. I take Azathioprine because I've had reoccuring Scleritis, so have to have regular blood test.

 

[shelbell]

My obstetrician is monitoring me closely, but thats all. I was under a nephrologist for years but we disagreed on my treatment and monitoring. I'm under a rheumo but they have never done anything.

 

[ray]

hi my names rachel i had the band fitted on the the 24 march 09 2 days after u im only done 24lb. feeling worse now ive seen how much u lost thats great u must be thrilled. im feeling so lost like i cant shift the weight at all. how many fills have u had

 

[quetiapina]

hi my names rachel i had the band fitted on the the 24 march 09 2 days after u im only done 24lb. feeling worse now ive seen how much u lost thats great u must be thrilled. im feeling so lost like i cant shift the weight at all. how many fills have u had

Hi Rachel, I guess you are talking to me as the dates make sense.

Thankyou for saying I've done well. You have done really well too. that is 1 stone 10lbs in a few weeks. I think the reason I have lost more is probably because I might be a lot bigger than you. I am certainly on the large side of banders.

How are you getting on with the band? I have had one fill. How many have you had? I have 6 mils in a 14mil band. Have you had the xray and fill yet?

Please try not to worry, everyone is different. You will get a lot of advice here.

Love from Jenni

 

[swizzlestick]

Shel, perhaps you need to speak with your gp about taking blood thinners for the Hughes. 75mg a day of aspirin is what they recommend for most people with the condition. I don't want to sound alarmist at all but a very dear friend of mine also has the condition, she was diagnosed not long after me and she chose the alternative healthy eating/excercise route. She refused all the meds and as a result the sticky blood (hughes) has caused a brain disfunction which has permanently affected her speech and movement. it has left her unable to speak or write properly and she has great difficulty walking properly.

Also, the hydrochloraquinine, is an anti malarial which is prescribed more for the SLE (systemic Lupus) to slow down the progression of the disease. I am on this too, it is useless in terms of pain, well for me anyway, but I find it helps with the brain fog and also chronic fatigue.

here are a number of contra indications with most of my meds, it's a bit of a nightmare really, but tbh taking them makes the difference between me being able to lead a realtively normal life and not so we just monitor them closely.

I am fortunate that St Thomas Lupus Clinic is nearby, understanding of the condition is so 'hit and miss' with many docs and professionals.

 

[shelbell]

its more miss than hit up here. I'm on aspirin at the moment along with heparin cos of the pregnancy, but post bypass aspirin isn't ideal. After bubbs comes along will look into the chloroquine again as I'm not on the other med that it reacted with.

Wish we had a decent lupus professional up here

 

[swizzlestick]

Shel

Maybe you should ask about the clopidogrel 75mg after baby is here for the blood thinner for Hughes. It's meant to be gentler on stomache than aspirin, although I'm not sure if you can get it in liquid form, I will need to find that out for myself eek. Same for the hydrochloroquinine, I will need that in liquid form I guess.

 

[shelbell]

You only need liquids for the first month or so, then you can go back on to tablets.

 

[swizzlestick]

Ah thanks for that Shel, see you learn something new every day. I thought once you had surgery it had to be liquid meds from there on in DOH!