I am a newbie to the forum as 3 days ago I was diagnosed with Hughes Syndrome after having a bilateral PE last year (seven delightful clots found in my lungs) which came out of the blue. Whilst recovering from the PE I was on warfarin for 6 months and stopped last Oct so the Hematologist could test for sticky blood, as I was 37 years old and no history of clots or recent long haul flights. Only just got the results as I was only given a routine appointment to return afterwards, so back on the warfarin.
The question I have is that I am a marathon runner and even ventured in to 100km Ultra races and get what I thought was the usual runners fatigue during training which required me to have a post long run nap on a Saturday afternoon. Since being diagnosed with Hughes and discovering that fatigue is one of the symptoms, I am wondering if warfarin will help reduce the fatigue?
I am in the middle of marathon training again and will love to be able to run a marathon for The Hughes Foundation to aid their work.
Many thanks in advance
Del
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Marathon_Runner
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Welcome to the group, this illness can hit without any noice and can be a real pain!! Fatigue is a symptom one which a lot of people with APS suffer with and in the short term No there is no cure to completly remove the fatigue, but warfarin has been proven to help with fatigue as have Plaquinal has been shown to help as well.
The best advice is the beow which was taken for an article on fatigue
Treatments for Fatigue:
Obviously, the most effective treatment for fatigue is treating the root cause. However, there are a number of nutritional strategies, lifestyle changes and supplements that have proven effective in reviving energy and combating fatigue even in situations where the cause is chronic and can’t be immediately alleviated.
Because proper nutrition is so important to your body’s functioning, particularly when essential nutrients are being depleted by an illness, many doctors recommend a nutritional supplement that contains a full complement of B-complex vitamins (including folic acid, niacin and thiamine) to help your body deal with the added stresses.
Drink plenty of water. Marginal dehydration can cause fatigue as your body doesn’t have enough of one of its most essential nutrients.
Your body uses iron to create hemoglobin, needed to transport oxygen to all of your muscles and organs. Subclinical deficiencies of iron can result in nagging fatigue even when anemia has not been diagnosed. Many doctors recommend an iron supplement to combat and prevent fatigue.
Manganese is necessary for your body to properly use the iron you take in. In many cases of fatigue, there’s plenty of iron in the diet, but a manganese deficiency prevents the body from using it as needed.
Siberian ginseng is the one of the most commonly prescribed herbal supplements for increasing energy. Siberian ginseng stimulates the adrenal glands, resulting in an increase of stress-fighting and energizing hormones.
Bee Pollen and royal jelly, two bee products, have been used for centuries to boost energy and combat fatigue. Chemical analyses of bee pollen show that bee pollen contains all the essential nutrients to sustain human life.
Doctors often recommend a change in diet and lifestyle to help boost energy and combat fatigue. The sun, fresh air and a nutritionally sound diet can go a long way in alleviating fatigue, whether it is due to illness, treatment for another condition or depression.
The latest fad in combating daily fatigue is the co-called ‘high energy’ drinks that contain ginseng, B complex vitamins, green tea – and a lot of sugar. The practice is akin to grabbing a cup of coffee or a couple of caffeine tablets to get you through the mid-afternoon slump. While the short-term effect is a noticeable increase in energy levels, in the long term, the energy drinks will play havoc with your body’s natural response to fatigue. Instead, we recommend taking a daily supplement like Xtend-Life’s Natural Energy with New Zealand Bee Pollen to help maintain your levels of important hormones and enzymes consistently and stop fatigue before it starts rather than ‘boosting’ your body out of a fatigued state once those nutrients are depleted
Sorry also tjust to say to do a Marthon for HSF would be a fantatsic Idea and i know Kate would be happy that you consider fundrasing for them. If you would like to i can send a not to Kate to get in touch.?
Firstly many thanks for replying to my question with such detailed and helpful information. The fatigue problem has always been an issue well before any other problems arose.
I would be grateful if you could drop Kate a note about running a marathon for HSF, I always have a fe marathons planned.
No Problem Del in the mean time have a look at the Hughes Syndrome Foundation website hughes-syndrome.org It will give you information on getting started and Kate is away so it will be a few days before i get back to you but the website should give you enough information to start.
And glad to help this Fatigue is a real nightmare!
paddy
Hi Del
Our charity does have one place left for the Brighton marathon this year - it had been wanted by someone else but they have disappeared so it's on the market again.
If you'd like more details etc please drop me a line at kate.hindle@hughes-syndrome.org. It would be nice to have Team HSF made up of patients and their relatives this year
PS. Our one and only London marathon runner was a patient on warfarin too so she might have some good tips for training etc.
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