What is Fibromyalgia? And Lupus?

[quetiapina]

Excuse my ignorance but I would really like to know what this is and how it affects people. A few people here refer to it. Does it go along with Lupus or is that separate?

Also, what exactly happens with Lupus, we are having a friend of my OH to stay and she is disabled by it but I know so little about the disease and what her needs will be

 

[BlueDiamond]

What is fibromyalgia?

Fibromyalgia is a chronic condition causing pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, fatigue, anxiety, depression, and disturbances in bowel function. Fibromyalgia was formerly known as fibrositis.
While fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown. The painful tissues involved are not accompanied by tissue inflammation. Therefore, despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs. Therefore, fibromyalgia is different from many other rheumatic conditions (such as rheumatoid arthritis, systemic lupus, and polymyositis). In those diseases, tissue inflammation is the major cause of pain, stiffness, and tenderness of the joints, tendons and muscles, and it can lead to joint deformity and damage to the internal organs or muscles.

 

[BlueDiamond]

Systemic Lupus Erythematosus (Lupus) is a presently incurable illness of the immune system, a condition in which the body’s defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.

Discoid Lupus is usually a condition of the skin alone although the joints can also often be affected. A very few patients may go on to develop systemic Lupus.

Lupus may be triggered by various means and can present in a bewildering number of ways, even to the extent of mimicking other illness such as Rheumatoid Arthritis or Multiple Sclerosis.

The cause of Lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses.

The majority of Lupus patients are young women of childbearing age (15-55) but men and even young children can be affected. It is estimated that 1 in 750 women suffer from Lupus in the UK with the ratio of women to men being 9:1. Lupus is a worldwide disease more common in some races than others. The incidence in white women is 1 in 1000 compared with that in black women of 1 in 250 and Asian races also have a higher tendency to Lupus. Only 10% of Lupus patients are male.

With its many symptoms, Lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and limit potential damage to the kidneys, heart, lungs or brain.

Those diagnosed usually remain in medical care and receive ongoing treatment. Many symptoms will have less impact but there may be side effects. Lupus can adversely affect the lives of sufferers and their families and influence relationships with friends and business colleagues.
​

​

LUPUS IS NEITHER CONTAGIOUS OR INFECTIOUS

 

[halve me]

how long have you got?!!! i have fibromyalgia (fm) and have been diagnosed for 4 years the easiest way to explain what it is is a chronic fatigue and chronic pain problem. here is a simple explaination about it from a webiste i reg visit,
Fibromyalgia is a chronic illness that causes immense physical pain and debilitating fatigue. Classified as a syndrome, fibromyalgia is not a disease. Instead it is a condition that causes many different symptoms. These symptoms affect all systems in the body. Fibromyalgia plagues up to 5% of the population, with 6 million sufferers in the United States alone. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as tendons and ligaments), "my" meaning muscles, and "algia" meaning pain.

Fibromyalgia's main symptom is widespread musculoskeletal pain. This pain affects the ligaments, tendons, and muscles throughout the body. Ligaments are made of tough tissues which attach to the bones in your body. Tendons help to attach muscles to your bones. Muscles allow you to stretch and flex various body parts.
Fibromyalgia patients often feel like they are aching all over; muscles feel sore, stiff, and overworked. Muscle twitches are also common in fibromyalgia, adding to the pain of the illness. Sometimes muscles can even feel like they are burning.

Fibromyalgia is a chronic disorder, which means that pain can continue for months and even years. Unfortunately, fibromyalgia treatment is often difficult to come by and many people must suffer in silence.
Though pain is the foremost symptom of fibromyaliga, it is by no means the only symptom. Among other symptoms, fibromyalgia sufferers often experience:

• sleep disorders
• fatigue
• morning stiffness
• irritable bowel syndrome

Many Sufferers
Fibromyaliga syndrome has many sufferers of all ages and backgrounds. Fibromyalgia does seem to affect women more than men, especially during the childbearing years. Children and the elderly can can also be affected.
Showing Some Compassion
Fibromyalgia syndrome is a very frustrating illness to have. This is because so few people truly understand the condition. It may be difficult for you to relate your pain to your friends and family. To help them understand, ask them to think back to when they last had a bad bout with the flu. The memories of constant aches, pains, and fatigue may help them to understand what you are facing.

Though there is no cure, there are a wide number of treatments available for fibromyaliga. Medical treatments and drug therapies can help alleviate your pain. Alternative treatments are also widely popular.

hope that helps! x sorry dont know much about the lupus im sure someone else will be able to help you there!

 

[quetiapina]

God, what awful problems. How do people deal with this day to day? Are there any things that make it worse. Interestingly, our friend is mixed race black/asian. Can it be made worse by stress? Our friend doesn't like dogs maybe this would stress her - we have 2 (even though they would be out the back). Does it come in"attacks" or is there all the time?

 

[halve me]

fm tends to always be there but can have flare ups where pain increases and the lethargy is unbelievable i tend to get flare ups when i am stressed and can do very little, but again im unsure as to lupus if this is the same? but i do presume that as it sounds similar it may also be the same?

 

[shelbell]

Lupus is and auto-immune disease, fibro is not. They are not connected in any way as far as i know, I'm just odd having both. But then I have a whole list of other problems too.

Lupus comes in flares, when its inactive the main symptoms are fatigue and joint pain. When lupus flares it can affect people in so many ways, depending on what part of the body it is attacking. It can attack any organ or body part, and can attack neurologically as well. It can cause medical depression, and can be fatal. Lupus flares have a number of triggers, common ones are exposure to UV light, exposure to virus, post partum pregnany, or just spontaneous.

Being around someone with Lupus the important thing to remember is that they will not have the same energy levels as a normal person, and will tire quickly. Best thing is to let them lead you. Be honest and say that you don't know much about it and don't know how it affects her, and ask for guidance. Don't assume that she can't do certain things though, my hubby often tells me i can't manage doing x or y, which makes me do it and then suffer afterwards.

Being around someone with Fibro is similar, the main thing for me is don't poke/punch/touch me as it blummin well hurts! A gentle prod for someone with fibro feels like an almighty slap. Be patient, lots of sufferers get 'Fibro Fog' where the brain goes screwy. It can take longer to think and process conversation, and can be difficult to remember things. It is incredibly frustrating as you are very aware of it. As with lupus, let the sufferer guide you as to their abilities.

 

[Snowcrystal]

Would FB have any bearing on being over-weight at all?......I mean, would there be any relationship?

How would it get diagnosed?

xXx

 

[shelbell]

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!

 

[Snowcrystal]

Lupus is and auto-immune disease, fibro is not. They are not connected in any way as far as i know, I'm just odd having both. But then I have a whole list of other problems too.

Lupus comes in flares, when its inactive the main symptoms are fatigue and joint pain. When lupus flares it can affect people in so many ways, depending on what part of the body it is attacking. It can attack any organ or body part, and can attack neurologically as well. It can cause medical depression, and can be fatal. Lupus flares have a number of triggers, common ones are exposure to UV light, exposure to virus, post partum pregnany, or just spontaneous.

Being around someone with Lupus the important thing to remember is that they will not have the same energy levels as a normal person, and will tire quickly. Best thing is to let them lead you. Be honest and say that you don't know much about it and don't know how it affects her, and ask for guidance. Don't assume that she can't do certain things though, my hubby often tells me i can't manage doing x or y, which makes me do it and then suffer afterwards.

Being around someone with Fibro is similar, the main thing for me is don't poke/punch/touch me as it blummin well hurts! A gentle prod for someone with fibro feels like an almighty slap. Be patient, lots of sufferers get 'Fibro Fog' where the brain goes screwy. It can take longer to think and process conversation, and can be difficult to remember things. It is incredibly frustrating as you are very aware of it. As with lupus, let the sufferer guide you as to their abilities.

Shell....just wanted to say what a great foto...you look great...well done on the weight loss...you look sooo young.

xXx

 

[shelbell]

FB is diagnosed with the poke test lol. Basically, a pain specialist would apply pressure to certain points on your body, mostly around the joints, and gauge your response. That, combined with your history and symptoms is what they use to diagnose. When my specialist did it I couldn't understand why he was being so mean hurting me so much until he explained it was actually only very light pressure that a normal person would barely feel.

Fibro doesn't cause weight gain directly, and it isn't caused by weight gain. It can exascerbate a weight problem though as a sufferer will find exercise harder to do, and be more inactive than a normal person. Weight does seem to worsen symptoms, mine has certainly been less active since losing weight.

 

[quetiapina]

Thanks so much for info everyone. Thankyou Shelbell for your advice and insight on how to be with our friend when she visits. What terrible conditions and yet they don't seem to be known about by the majority of people (myself included until now). The women's mags I read often have health sections but I don't think I've ever read anything about these conditions (or my own Bipolar come to think of it). I wonder why this is.

 

[halve me]

the inabillity to move around as much when you have fm doesnt help the weight and especially if someone says do some more exercise it gets me mad! (as you can see im having a fibrofog day today so cant explain what i really mean...sorry!) i wish i could! also a lot of the medication used for fm can cause weight gain or an increased appitite. one med i was on made me never feel full

 

[shelbell]

I think some of it is because its not something you can see. Like with bipolar and other mental health issues. We can all pity things like cancer and leukemia because the side effects of treatment makes them visibly evident, and physical disabilities which are noticable.

These days I look healthy, unless you know what you're looking for, aside from the fact that i walk with a crutch or stick.

 

[quetiapina]

I think some of it is because its not something you can see. Like with bipolar and other mental health issues. We can all pity things like cancer and leukemia because the side effects of treatment makes them visibly evident, and physical disabilities which are noticable.

These days I look healthy, unless you know what you're looking for, aside from the fact that i walk with a crutch or stick.

Yes, that's true. I sometimes feel such a sham for being on a pension (I was retired from teaching at 35 due to my condition) and DLA when I don't appear to have anything wrong. I also have a free bus pass - as do all people on High Rate in our area and I'm v self conscious as I would hate to be thought of as (a big fat) cheat. I want to work again but any employer would be mad (no pun intended) to employ me - I'm well for a few months/weeks and then ill for a few months. I count my blessings though and am gradually learning to accept the condition and realise that the illness is separate to who I am as a person. Same as anyone with a permanent condition I guess. I just never really know what to say to people when they ask about work and then get embarrased when I tell them. A couple of members from my extended family avoid me like the plague at family do's ( I try to avoid family do's b'cos of this and also my weight). I'm pretty open about it to people I think will understand (eg on the forum) but I still get ashamed.:wave_cry: Oh God, look how I've turned the conversation around to me again!

 

[topsy]

Well i think it's all been extremely explained by Shel. halve me, snow crystal and snow diamond. I was diagnosed 2000 and i have had several severe flare up's. I am encouraged by those who have already had by-pass surgery to hear that they feel so much better than before. I am hoping i won't need my wheelchair anymore to go shopping it would be nice not to be in pain and feel totally exhausted. You do adapt you life and i have (for the main part) stayed positive and happy. The thing i hate most is that i can't do normal everyday situations and when i do do them i'm back to a total wreck and my OH and friends just shake their heads and tell me off!!!!!! Sorry for rambling

 

[quetiapina]

I really hope that your condition improves Topsy. Can't you have painkillers or do they not help?

 

[Snowcrystal]

Topsy...you ramble away....lol. I hope that your symptoms get less severe after your op.

I don't have it, but was interested in this thread because I have so many of the symptoms.

Food for thought.

xXx

 

[topsy]

I have 8 painkillers a day, 2 anti-inflammatory tablets and 1 pain inhibitor that i take at night to help me sleep (but as the said when you wake up your still knackered) and every 3mths i will take sleeping tablets for a few days to give me some respite and have a deeper sleep. Then we have 4 blood pressure tablets to control that - but on the whole i am great and i don't let it rule me. The main thing that it has robbed me is my job - i used to be a secondary school teacher and i LOVED IT but last year i had to take early retirement due to ill health, but alot of my students both past and present still keep in touch which is lovely lol

 

[shelbell]

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.