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Original poster

Fibromyalgia and Lupus

30 replies

justsotired · 06/02/2010 21:23

Can anyone tell me what the main differences are between Fibromyaligia and Lupus? How does a doctor make a diagnosis either way?

OP posts:
alypaly · 07/02/2010 01:05

lupus can be diagnosed with blood tests, and is an autoimmune disease.

fibromyalgia is pain occuring in many parts of the body,muscular,headaches,ibs,neuropathic pain...but normally there is no known cause and no posive blood test.

Has doc been doing blood tests to eliminate lupus.

what symptoms do you have?

Highlander · 07/02/2010 10:59

fibromyalgia - nutters disease. You'll be given this diagnosis for vague aches and pains that no test can diagnose.

EcoMouse · 07/02/2010 12:16

Nutters disease?

heQet · 07/02/2010 12:21

nutters disease? I don't bloody think so!

VAGUE aches and pains? Erm. trying bloody AGONY! Try yelping if the cat jumps on you, yelling "ELBOWS ELBOWS" if the kids come near you, crying out if your husband touches you in one of your sore spots. Try rubbing the spot for a good 5 minutes after it's been touched because it hurts so much.

Try not being able to get out of bed when you wake up because you are so stiff

Try not being able to WIPE YOUR OWN ARSE IN THE MORNING because you are so stiff you can't reach round.

Try not being able to remember random words, or where you put something, or what someone's name is.

Try total, cotton wool brain feeling of confusion

Try not being able to lift a full kettle, having numb hands and arms, dropping things,

I refuse to allow this condition to be dismissed as a 'nutters disease'

It is REAL and it is PAINFUL.

heQet · 07/02/2010 13:20

Oh, and having an adapted car with hand controls because you can't use foot pedals due to the pain.

nutter's disease. I am SO angry.

Still.

Eurostar · 07/02/2010 13:27

Lupus can be very dangerous can't it? The body attacks itself and sometimes it attacks the organs? There will be abnormalities in blood tests with lupus I think.

EcoMouse · 07/02/2010 14:22

HeQet, understandably so!

I have an as yet undefined condition (tests ongoing) but Fibromyalgia hasn't been discounted.

Whether it's Fibro' or not, I currently have similar symptoms and my heart goes out to others coping with this and other debilitating conditions.

To hear it referred to as 'nutters disease' was astounding and I'd been hoping Highlander would come back to expand on her statement.

Highlander · 07/02/2010 16:44

sorry, been away. According to doc friends, female patients with fibromyalgia are nutters

EcoMouse · 07/02/2010 17:20

Ah. The caring profession. Very pleasant.

herbietea · 07/02/2010 17:29

This reply has been deleted

Message withdrawn

heQet · 07/02/2010 21:59

I'm a nutter too, herbietea.

My husband will be pleased to learn that I am having him help me with things just for the heck of it. And I drive a car with hand controls because I'm bonkers. Oh yes indeedy.

gibber gibber. gibber gibber.

Original poster
justsotired · 07/02/2010 22:48

Not sure I want to be diagnosed with "nutters disease" but doctor is doing blood tests next week. I have some of the symptoms of fibromyalgia but not all (no IBS for example). But I do have very sensitive skin and have had a rash on my cheeks and nose for the last couple of years (my red nose is the source of many jokes at home!).

Googling hasn't reassured me because lupus symptoms include skin problems - but the illness seems to be more complicated than what I am experiencing.

Maybe I'm just designed to be a red-nose mummy!!

OP posts:
WidowWadman · 07/02/2010 22:55

Fibromyalgia means "I've no idea what you have, but it sure hurts, here's a greek word for it to make you feel better".

I've been diagnosed with Fibromyalgia a few years ago. It does bloody hurt, there is no organic cause they can find, but a label helps some people coping. Sadly not me.

sb6699 · 07/02/2010 23:50

My mum has recently been diagnosed with Lupus. She was told it takes many forms and not all sufferers have all the symptoms hence why it is so difficult to diagnose.

Nutters disease indeed

LowLevelWhingeing · 07/02/2010 23:57

Highlander. Your doc friends are straight from the 19th century when women in distress were dismissed as suffering from hysteria. Your friends can fuck off.

AntirrhinumMajus · 08/02/2010 00:10

Exactly LowLevelWhingeing & people like me with ME/CFS are obviously the same

alypaly · 08/02/2010 00:32

its doctors likehighlanders friends that that caused me 3 years of battling with serious illness to try and get a diagnosis of a disease that caused me chronic problems with bowel pain,facial rashes,itchy hot scalp,sore knee,wrist ankle and finger joints,dry eyes,fibromyalgia,exhaustion. They just poo pooed it and gave up.(typical) Luckily i didnt give up and after doing my own research,(and a positive blood test which should have been done by the oh so caring medical profession)i found out that i had chronic parvo virus which had given me CFS and ME. It took 3 years of my life away from me and has made me very angry (and cynical)

Luckily a good doctor in Manchester spotted my blood test in the lab(and was doing research into parvo virus/slapped cheek syndrome and took me into hospital for a week of intravenous immunoglobulins which are one of the newer treatments for ME,fibromyalgia. Guess what?????

It worked and i have never looked back.
Its worth asking about if you suffer from ME or fibromyalgia

CarmenSanDiego · 08/02/2010 05:09

I think the problem with things like fibromyalgia is that they are very real and the symptoms are very real, but as doctors can't find a cause, there's not a lot they can do or say other than treat the symptoms. And if nothing can be picked up on tests, all they have to go on is your description/perception of the pain.

'Fibromyalgia' isn't really a diagnosis of a particular condition, it's really a description of a cluster of symptoms.

Sometimes we think doctors must be able to find the cause for everything but it seems that there are still SO many things that are just very poorly understood. So sorry for people suffering with illnesses like this and how frustrating it is

ArcticFox · 08/02/2010 05:50

One symptom of Lupus is dryness of the mouth, eyes, skin and other "wet bits". Often sufferers are prescribed artificial tears and saliva and special skin ointments to try to combat the symptoms.

I'm not sure if this also applies to sufferers of Fibromyalgia.

rockinghertosleep · 08/02/2010 10:47

If you want to learn more about lupus this website has very good information, including the 11 characteristics that rheumatologists look for in diagnosing lupus. One of the very difficult things about lupus is that it affects every sufferer differently - some endure kidney failure whilst others experience only mild joint pain and fatigue. The blood tests used to identify the "lupus anticoagulant" do not identify all individuals who have lupus as it is possible to have lupus without the specific blood marker. There are other markers such as the ANA which will appear elevated in all lupus patients, however this marker is also elevated in many other rheumatic/immune system conditions. Lupus is a difficult diagnosis to make, so please don't be surprised if it takes a few years of enduring blood tests/observations to be given a diagnosis.

The dryness ArticFox mentioned is generally only true of lupus patients who also have Sjogrens syndrome aka anti-Ro/anti-La antibodies present. Sjogrens is a separate immune system disorder and can be present on its own or in conjunction with Lupus/RA/Fibro etc.

Hth... And good luck!

alypaly · 08/02/2010 11:52

in manchester they are treating fibromyalgia with immunoglobulins as they believe it comes on post viral illness. They reckon it is because some of the virus gets into the bone marrow and replicates unbeknown to us,months after the illness and therefore we dont realte it to the initial illness IYGWIM

alypaly · 08/02/2010 11:52

relate

bacon · 08/02/2010 12:37

Typical GPs approach I went down like a sack of spuds over 11 years ago kept going to docs - usual "Virus" stuff it'll clear up. SO I did my own research and self diagnosed myself. Did get to see a super consultant but then it wasnt known so much, tried anti-depressant, excercise, blood tests etc but really all came back fine. I struggled to work full time and was so tired and felt in so much pain but I battled on. Do you struggle to put your arms lifting etc in the air and do moderate excercise? I was tired to a point of exhaustion.

Anyway, my marriage broke down as I became a depressive and struggled to keep a normal life...picked myself up found a new husband, had children and now a housewife feel 80% better so yes some people do recover but not to the same as before it started. I cant drink alcohol, party or over do it I also struggle with stress it seems to bring it back.

I didnt suffer from sickness and hardly ever ill so I dont agree its anything to do with post viral. I believe its in the genes, some form of stress weakness. ie most personalities are very similar, high acheivers, happy people and usually fit people. Mine came on all of a sudden after a fab active holiday and struggle to pin point it at all.

Lupus is very serious condition and as stated above can be blood tested.

I do beleive that if you could have fibro then you must address it straight away, change your lifestyle/job. I didnt join any of the groups/forums either as I was told not to get drawn into the "suffering group" but to stay with the usual friends.

Also I highly highly recommend you dont spend any money on any alternative medicines/acupunture etc I spent some money and really it didnt do a thing. The only money I spent was on fab Cognative therepy whcih helps you change your mind set worth every penny!

alypaly · 08/02/2010 12:45

bacon....i have found that too about the category of people with depression and fibromyalgia. I too have been a high achiever,play lots of sport....cant say i have been wildly happy on the inside,but dont show it on the exterior, probably perfectonist deep down. My good doc told me to try and achieve 80 % of what i want and to try and be happy with it...it eventually worked and now i can let things slide a bit more easily.

I wasnt ill with the actual slapped cheek that my son brought home. It was months afterwards,that i started with all these unrealted symptoms and couldnt tie it into anything. DS2 had the normal slapped cheek symptoms and i had nothing. But when they did the parvo B19 test 3 years after...it was positive. I dont do ill very well as i love my sport too.

Funny that,i cant drink very much now either.

Rowlshar · 16/02/2010 21:55

i was diagnosed with Fibromyalgia about 4 years ago and i have never felt so depressed. my head felt too heavy for my shoulders and i was in agony. i developed 'stress lumps' in my shoulders, bottom of neck etc and various pain similar to arthritis type pain. i had various stuff from holland and barrett as well as the cold and hot compreses, massages etc. i had to have physiotherapy and then onto laser treatment. it eventually wore off and i havent had 'an attack' for a while. i wouldnt wish it on anybody!