how do you explain this illness to family or friends ? Sometimes they will think you are hypochondriac. With me fatigue is the killer

[issa]

Its very depressing to write thesekind of things but the illness is taking all the strength. Is there any help with nhs for the psychological help with this ?

[UKADMIN Partner Behcet's Syndrome Society]

The Behcets Syndrome Society has leaflets available to help and also fact sheets on their website that may help with your explanation. We also hope to do some research into fatigue in the near future the comparison is made between Behcets and ME for severity and it is considered physiological. Our new centres of excellence will address this aspect of Behcets in a more structure way.

[Jaxxi in reply to UKADMIN]

Comparisons with the fatigue of ME might do more harm than good. The school of psychiatrists that drew down most of the funding for CFS/ME research from 1998-2010 argues that the fatigue of ME is in the main due to a combination of flawed perception and deconditioning, and can be fixed by graded exercise and cognitive behaviour therapy. This has led to an oversimplified general belief amongst many GPs, journalists and the public at large that CFS/ME is a psychosomatic illness.

I had a diagnosis of CFS/ME in 2000 and have spent a lot of time on ME forums. I am of the opinion that there are many subsets of people with ME, many with undiagnosed physiological illnesses. A close friend has just been diagnosed with MS 4 years after a diagnosis of CFS/ME - at the age of 28 that means she has 'lost' 4 valuable years of targeted treatment - and there are many with thyroid illness comorbid with their CFS/ME or fibromyalgia). And there are others whose illness is undoubtedly complicated or even caused by profound mental health problems. Hence, CFS/ME is a very complex and highly stigmatised illness ascribed to a very diverse bucketload of sick people with pain and fatigue as the ONLY symptoms common to all.

[John_Mills]

John Mills here from Vasculitis UK. Dr Andrew McClean at Birmingham University is currently carrying out a very well structured piece of research into "Fatigue in patients with ANCA associated vasculitis (AAV)". This includes most of the people with systemic vasculitis (although not Behcets). It compares people in remission with a matched cohort of healthy volunteers. So it is looking at the long term effects of the disease. Many people with AAV suffer the devastating fatigue that you mention, even after the disease is apparently fully under control. Each participant fills in a lengthy questionaire and is then subjected to a full day of investigations into their actual and perceived muscle strength and their actual and perceived stamina. They are also assessed for depression and their level of mental fatigue.

The project is less than half way through, but early results are very interesting and in some cases not what one would expect! One unsurprising result is that perceived fatigue in these patients is the same as for cancer patients. The theory, that may be proved by this research. is that cytokines, produced by the liver as a result of inflammatory response, do damage to certain centres in the brain and this is what produces the sense of fatigue. (It is known that the level of these particular cytokines often does not return to the "normal" levels of before the disease) This is "central" fatigue as opposed to "local" fatigue in the muscles and the research is designed to ascertain which part of the fatigue is actual and which is perceived. So whilst the fatigue might have its origins in the brain, it is a physiological problem not something "all in the mind" that you can "snap out of" ! A further extension of the research will be to see if a graduated exercise programme is beneficial in reducing fatigue.

In my opinion, the results of this research could also have major implications for those with fatigue associated illnesses such as ME & post viral syndrome where there are outward physical signs of disease. There is an article on this research in the Spring Vasculitis UK newsletter which should be available to read online on the Vuk website by the beginning of April - vasculitis.org.uk.

[Bethb in reply to John_Mills]

Hello Mr Mills. This is a very interesting post. I've recently been diagnosed with Behcets, but I think I was probably born with it. amongst other symptoms,I suffer from fatigue. I grew up doing a lot of sport, so I was very fit when I was younger. In more recent years, I gradually cut down the exercise, thinking I was doing too much for my age and thus causing the fatigue. I now think the exercise may have been keeping the fatigue at bay as I don't really exercise anymore and the fatigue is worse than ever.

I get lots of sleep, but I don't wake up feeling refreshed from it - I still feel tired. It feels, to me, as though the tired feeling is a signal that is coming from somewhere deep within my brain. Although I do get lots of aches and pains around my body, the fatigue does not feel like physical fatigue. It almost feels as though a big heavy knock and the head would kind of restart, or dislodge the signal and stop the feeling.

I have looked on the vasculitis website, but I cannot find the reseach you mentioned. Your post was 2 years ago, so I reckon the research may be completed by now. Is it possible for you to post a link to the paper ?

By the way, it feels comforting to know that this kind of reseach is going on. I feel very grateful towards you for your work etc. Good luck with it all.

[sweet1]

Hello Issa

Fatigue has played a huge role in the way my Behcet’s affects me. I have been diagnosed for 14 years and starting to show signs of having Behcet’s for over two decades. My Behcet’s has become systemic and I have vasculitis of the blood vessels due to having Behcet’s. For me my fatigue affects me both physically and mentally my muscles ache, I suffer vasculitis flare up in my legs, eyes and internal organs and cranial lining all of which take a toll on my body and brain. I understand how my Behcet’s affects me and as my mind is not separate from my body I become as mentally fatigued as I do physically fatigued.

I don't know if you have attended any of the Behcet’s Societies meetings for people with Behcet’s and spoken with others but the society normally tries to arrange for people to meet yearly. I have attended a couple in the past and my husband has come along with me. Some people go along with family members and other attend with the support of their friends. I found these meetings most valuable as I was able speak with people and relate to their difficulties and them to mine. My husband found the talks by the medical representatives very informative and this gave him a better understanding of Behcet’s and the individual Behcet’s sufferer.

I used to try and work aggressively through my periods of extreme fatigue and exhaustion thinking the more I did and the more hours I worked then this would make me better quicker, make the flare up's sub subside quicker and I even used to think it would restructure my immune system and Behcet’s would go away……. But it had the opposite effect Behcet’s took its toll on me quicker!

I understand how your fatigue takes a toil on a person and therefore understand how frustrating suffering from fatigue can be for you and those around you. Can I suggest that it is most important that you rest as much as you can when suffering fatigue at its height but when the fatigue is subsiding that you take controlled exercise in small amounts but try to remain as active as you possibly can. I eat a good fish based diet and try to eat oily fish about two or three times a week as oily fish appears to help my fatigue subside quicker and although I am never free from fatigue anymore I find small but regular amounts of exercise and balanced diet do help to some degree.

I do not know if psychological support helps with suffers of fatigue, but it appears to me that the effects of Behcet's on the body has a consequential effect on the brain. I can only speak from my own point of view but having never had depression but have suffered physical and mental fatigue for years due to Behcet’s it seems to me that as the body and brain are not separate a physical flare up of Behcet’s for me causes me physical fatigue, then the effects of Behcet’s on my body subsequently causes effects to my brain causing mental fatigue and exhaustion.

Behcet’s can be different in its affects and as individual as the person, so what works for me may not work for you and others and I understand this, but I can only talk for me and have had to try different things over the years until I have found a balance and learnt to understand my Behcet’s how it affects me and treat my body and mind with as much kindness as I can.

Be kind to yourself, pace yourself and I hope you find support and I hope you are able to find as much information as possible to help your family or/and friends understand your Behcet’s. I wish you all the vey best.