September 14, 2014 at 1:09 am #728chuckbillParticipant
so sorry if I posted wrong. I dont seem to be on the Mast Cell Activation Page, but I wasn’t sure how to post as I am new.
I have a 19 year old son who is in his second year of college. I thought he had EDS cause when he was little, he had sore knees and the md said he had growing pains. This went on for some time. When he was 13, he developed Viral Meningitis and spend a week in the hospital on high doses of Morphine. Since then, he has been on a steady downward spiral of joint and body pain, daily gastro intestinal cramping followed by diarreah (where there is no logial food source… seems to be random) chronic fatigue, brain fog, sensitivity to chemicals either on his skin (rash, itching, burning, red) or upper respiratory symptoms of stuffy nose, sneezing and post nasal drip, excema and he is always sick when he is in school. BUT!! we thought EDS cause he has stretchy skin on his face, neck and head. No hypermobility though. So, the geneticist we saw at Cedars, said no EDS, and she didnt know what was wrong with him.
Please give me your thoughts on what to do next!!! The stretchy skin throws me off, but he is really in constant pain… mostly his back hurts. Any ideas??October 1, 2014 at 12:30 pm #5048BarbaraParticipant
Some of this might help:-
COPING A – Z
Alternate sedentary tasks with manual tasks, to give the body chance for recovery in between;
Best to recruit ‘energy saving’ methods (i.e. delegate labour intensive tasks, or work ‘smarter’);
Cut down on stress (emotional, physical, financial – I know, it ain’t easy!) – avoid conflict;
Drink extra fluids between mouthfuls of food to try and alleviate constipation;
Eat small meals and often, to lessen the burden on the stomach, NEVER over-eat;
Forwards bending is bad, i.e. working with the body bent over, or with your head down (in flexion);
Get someone else to do it also, if any task means working with your hands above your heart;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
It’s essential that you have protein every day (meat, poultry, fish, or nuts) & Vitamin C, to make strong collagen;
Just 1 multivitamin a day can help, preferably with minerals too (e.g. Magnesium, Zinc, Selenium, Manganese, etc);
Keep your body warm when it’s cold (layers), or cool when it’s hot (fans, flannels, sprays);
Look at ways of doing your tasks sitting down (but sitting upright!), wherever possible, back posture is crucial;
Massage is a great way to disperse the lactic acid build up in the muscles, eases pain;
Neurotransmission and proper digestion needs SALT, you need a minimum of 2-3grams daily MAKE SURE YOU GET IT!
Only eat foods you know to be fresh, don’t risk the intake of mold, or a dose of ‘the runs’!;
Prioritise tasks and write ‘To Do’ lists, to avoid overcrowding your own memory;
Quell pain – keep pain as low as possible; i.e Vit D helps, also Magnesium (either Epsom Salt baths, or in a cream)
Recognise & deal early with physical stressors that make you sweat, i.e. full bladder/bowel, or being too hot, etc;
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Take extra care of skin, don’t allow any sores to become weeping or infected, use talc on sweaty areas;
Unstable Cranio-cervical joints need support – wear a Philadelphia collar;
Vibrating massage mat is best used at the first sign of leg discomfort (wiggling legs helps);
Wear full length ‘Support hose’ to aid leg circulation and try 2 eggs daily to alleviate oedema if you have it;
X = 10, 10 O’clock – bedtime, DON’T push yourself to stay up, it’s no good for the adrenals;
Your computer screen & your work need to be elevated, so you are looking straight forwards;
Zzzzzz – Sleeping sitting up, or with the head of the bed elevated, as it may lessen your symptoms;
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