Does this sound like CFS to you?
Moderator: talkhealth
Does this sound like CFS to you?
I was diagnosed with CFS in 2000, and recovered completely in 2001 after giving up gluten. I was never diagnosed as coeliac as I had been off gluten for several months before approaching the GP and was so much better that I was unwilling to eat it again for the sake of testing.
In 2006 I started to suffer with bouts of illness which occurred around the time of my period. The illness would begin several days before the period and was characterised by numbness and tingling down one side of my body, a stumbling gait, neck and shoulder pain, loss of coordination, cognitive impairment and a general feeling of being wiped out. This would last for around 3 days and in between I would be perfectly well. An MRI scan was done and no abnormalities were found and the neurologist diagnosed migraine. I never followed this up as I have occasional migraine-with-aura and this felt like something very different.
In 2007 I became ill very after a period of extreme stress accompanied by a number of viral illness. I have no doubt that I had CFS and Fibromyalgia at that point - I had pretty much every symptom on the list - but over the next few years many of the symptoms resolved and by 2010 I was no longer suffering from FM, my sleep patterns had returned to normal and post exertional pain was no longer a problem.
However, my return to complete health has been constantly hampered by frequent flares of a nature that do not seem consistent with CFS/ME. They are a development of the monthly flares that were diagnosed as migraine, though they are not now linked to periods as I am through the menopause.
Each flare is preceded by between one and four tiny but intensely painful, red raised pimples on the left (usually) scalp and temple. They appear on various points on a particular line. A day later I get a strange empty stomach feeling like a queasy, insatiable hunger. The following day I wake with a headache and nausea, eye pain and blurred vision on the affected side, general body aches on the affected side, 'the staggers' (last year I fell and broke a shoulder at this point), extreme pallor, fever and an intense fatigue. I can manage to get up and dress, but spend the day dozing on the couch and sleep very heavily the first night, despite drenching night sweats. On the second day I feel a little less fluey, but there is a high degree of fatigue and cognitive impairment so I am unable to work or study. My appetite is diminished and my whole digestive tract feels very inflamed. Urination is frequent and copious, there is also a lack of muscle tone causing some incontinence (not a problem outside flares). There is also constipation (again, never a problem outside flares). Around day 3 my gums swell up on the affected side (which is usually the left, but very occasionally the right) and a little later I get a very distinctive rash all over my trunk. As soon as I get the rash I start to feel better, but it takes me from 10 to 20 days to recover completely from the fatigue, joint pains and balance problems depending on the severity of the flare.
The gaps between flares vary between 1 week and - very occasionally - 3 months. On the rare occasions I get a long gap between flares I can achieve normal levels of daily activity including cycling, hiking and doing daily power yoga sessions and have no symptoms of illness whatsoever.
The flares seem to be triggered by anything which causes inflammation, such as insect bites, hayfever, common colds, strains and sprains, tooth abscesses, even heat waves can set them off. But sometimes they appear out of the blue and I have no idea what has triggered them. I lead a very happy, secure and balanced life so I am certain there is no mood disorder involved.
My GP is not sure what is going on. He is very sympathetic and has seen the rashes and admits they are puzzling, but he believes that everything else is consistent with CFS. I was referred to a haemotologist to rule out mastocytosis a few years ago. All the blood results were in the normal range, but a bone marrow test was not performed.
Do you think there is any point my asking for another referral to some other specialism? I have followed all the instructions of the Worcestershire multidisciplinary team to the letter, and have a good quality of life, am living out a lifelong dream as a full-time art student and have a positive and hopeful approach to my illness, but I am at a loss as to what I can do about these flares that propel me back to square one every few weeks.
Back in the 1980s I lived in West Africa and the Caribbean and I often wonder whether I picked something up there - certainly had one or two odd acute illnesses - as you do!
In 2006 I started to suffer with bouts of illness which occurred around the time of my period. The illness would begin several days before the period and was characterised by numbness and tingling down one side of my body, a stumbling gait, neck and shoulder pain, loss of coordination, cognitive impairment and a general feeling of being wiped out. This would last for around 3 days and in between I would be perfectly well. An MRI scan was done and no abnormalities were found and the neurologist diagnosed migraine. I never followed this up as I have occasional migraine-with-aura and this felt like something very different.
In 2007 I became ill very after a period of extreme stress accompanied by a number of viral illness. I have no doubt that I had CFS and Fibromyalgia at that point - I had pretty much every symptom on the list - but over the next few years many of the symptoms resolved and by 2010 I was no longer suffering from FM, my sleep patterns had returned to normal and post exertional pain was no longer a problem.
However, my return to complete health has been constantly hampered by frequent flares of a nature that do not seem consistent with CFS/ME. They are a development of the monthly flares that were diagnosed as migraine, though they are not now linked to periods as I am through the menopause.
Each flare is preceded by between one and four tiny but intensely painful, red raised pimples on the left (usually) scalp and temple. They appear on various points on a particular line. A day later I get a strange empty stomach feeling like a queasy, insatiable hunger. The following day I wake with a headache and nausea, eye pain and blurred vision on the affected side, general body aches on the affected side, 'the staggers' (last year I fell and broke a shoulder at this point), extreme pallor, fever and an intense fatigue. I can manage to get up and dress, but spend the day dozing on the couch and sleep very heavily the first night, despite drenching night sweats. On the second day I feel a little less fluey, but there is a high degree of fatigue and cognitive impairment so I am unable to work or study. My appetite is diminished and my whole digestive tract feels very inflamed. Urination is frequent and copious, there is also a lack of muscle tone causing some incontinence (not a problem outside flares). There is also constipation (again, never a problem outside flares). Around day 3 my gums swell up on the affected side (which is usually the left, but very occasionally the right) and a little later I get a very distinctive rash all over my trunk. As soon as I get the rash I start to feel better, but it takes me from 10 to 20 days to recover completely from the fatigue, joint pains and balance problems depending on the severity of the flare.
The gaps between flares vary between 1 week and - very occasionally - 3 months. On the rare occasions I get a long gap between flares I can achieve normal levels of daily activity including cycling, hiking and doing daily power yoga sessions and have no symptoms of illness whatsoever.
The flares seem to be triggered by anything which causes inflammation, such as insect bites, hayfever, common colds, strains and sprains, tooth abscesses, even heat waves can set them off. But sometimes they appear out of the blue and I have no idea what has triggered them. I lead a very happy, secure and balanced life so I am certain there is no mood disorder involved.
My GP is not sure what is going on. He is very sympathetic and has seen the rashes and admits they are puzzling, but he believes that everything else is consistent with CFS. I was referred to a haemotologist to rule out mastocytosis a few years ago. All the blood results were in the normal range, but a bone marrow test was not performed.
Do you think there is any point my asking for another referral to some other specialism? I have followed all the instructions of the Worcestershire multidisciplinary team to the letter, and have a good quality of life, am living out a lifelong dream as a full-time art student and have a positive and hopeful approach to my illness, but I am at a loss as to what I can do about these flares that propel me back to square one every few weeks.
Back in the 1980s I lived in West Africa and the Caribbean and I often wonder whether I picked something up there - certainly had one or two odd acute illnesses - as you do!
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Dr Charles Shepherd
- Posts: 215
- Joined: Wed Aug 07, 2013 11:30 am
Re: Does this sound like CFS to you?
This is clearly quite a complex history and from what you say I think you ought to be re-assesed in relation to:
1 The possibility of coeliac disease - because there is quite a lot of overlap between coelic disease and ME/CFS and it's not unknown for people with fatigue + irritable bowel type symptoms and/or self-diagnosed 'wheat sensitivity' to be diagnosed as having ME/CFS or IBS when they do, in fact, have adult onset coeliac disease. Worth noting that coeliac disease can also cause neurological symptoms/complications.
The overlap and diagnosis of coeliac disease is covered in more detail in the clinical assessment section of the MEA purple booklet
2 Foreign travel - I take the view that a recent history of foreign travel outside places like Europe and North America is a 'red flag' indicator when a diagnosis is being considered and means that a very careful history needs to be taken in relation to infections from abroad which could be causing an ME/CFS like illness (eg Dengue fever; Ross river virus in Australia). If necessary, this could involve referral to a hospital that specialises in tropical diseases for more detailed assessment.
As you are already under the care of a hospital based service it might be worth asking if you could have an appointment with one of the doctors to discuss some of the very valid points you are making
MEA website and pdf literature form: http://www.meassociation.org.uk
1 The possibility of coeliac disease - because there is quite a lot of overlap between coelic disease and ME/CFS and it's not unknown for people with fatigue + irritable bowel type symptoms and/or self-diagnosed 'wheat sensitivity' to be diagnosed as having ME/CFS or IBS when they do, in fact, have adult onset coeliac disease. Worth noting that coeliac disease can also cause neurological symptoms/complications.
The overlap and diagnosis of coeliac disease is covered in more detail in the clinical assessment section of the MEA purple booklet
2 Foreign travel - I take the view that a recent history of foreign travel outside places like Europe and North America is a 'red flag' indicator when a diagnosis is being considered and means that a very careful history needs to be taken in relation to infections from abroad which could be causing an ME/CFS like illness (eg Dengue fever; Ross river virus in Australia). If necessary, this could involve referral to a hospital that specialises in tropical diseases for more detailed assessment.
As you are already under the care of a hospital based service it might be worth asking if you could have an appointment with one of the doctors to discuss some of the very valid points you are making
MEA website and pdf literature form: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association
MB BS, Honorary Medical Adviser, ME Association
Re: Does this sound like CFS to you?
Dr Shepherd, thank you so much for your time and your advice. I am very grateful indeed, and I will make an appointment tomorrow to discuss your comments with my GP.
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