Hi everyone,
Tis is my first post here. I’m having a hard time as the em has spread within weeks for my feet, to my hands, to my ears, and now to my face. My flares are happening daily and my face flares are particularly concerning. I feel so overwhelmed and just devasted. How do you move past those feelings? What meds help with the flares? Has anyone tried the wahls diet? Thanks so much.
Hi Mindy I know a lot about feeling overwhelmed and devasted. Unfortunately I don’t have any great answers as I’m still grieving over the loss of my health… just want you to know you are not alone. Wishing you a peaceful night.
Mindy,
I know just how you feel, as I too suffer with facial flushing everyday. I am currently taking no meds, after trying many. I am also diagnosed with rosacea, which causes flushing too. I have not tried the Wahls diet, but I feel that eating carbs definitely increases my flushing. I am always reading and willing to try different approaches to get relief and I would give it a try.
Good Luck and take care.
Somebody on this forum left this link to Dr Cohen's article http://www.medicationsense.com/articles/2012/emsup.html
As my husband is in a constant flare with complications and has been housebound for the last 3 years, is on high doses of Meloxicam, low Aspirin, various opiods for pain, sleeping tablets for sleep, Effexor, Magnesium we are trying Dr Cohen's recommendations as he explains well why some of the sufferers should avoid some foods and it is mostly proteins.
Good luck, it is all experimenting as each and every case of EM is different
He was using Meloxicam for other reasons. He takes a break from it from time to time to give his stomach a rest (risk of ulcers and bleeding which he had a couple of years ago) and he noticed that his feet were much worse and when he went back to it they were a bit better. As there is no real cure for EM (yet I hope) his rheumatologist was happy to prescribe it to him. By the way every time we go for a visit to the specialist, she asks: any new suggestions? (!!!!!!!!)
Tizzy said:
Interesting that Meloxicam is a drug Maggibarb husbands uses as well.It doesnt seem that widely used for Em but I have found it very useful in controlling the ache and stiffness of hands and feet which in turn helps flares(they seem to be more frequent the more painful joints or tendons get.) If you don't want to use drugs that effect the CNS maybe this is a starting point .
Hello,
I placed some longer articles under natural treatments.
I am so very very sorry and am too facing at times shocks about my health. Thank goodness for this website!!
My two sisters have had EM for 20 yrs one and 8 yrs the other and my brother is starting. They have tried, and are still taking, all the meds that people in this site use. Undoubtably finding some releif now, on strong meds, is very important even if you want to look into wholistic solutions for long term.
I have been wrestling with EM for 7 yrs, since approx 2007, and for 1.5 yrs, back in 2011, I was winning the battle. I started a diet called METABOLIC BALANCE, in 2010. This cost me 1000$ as it involved a close doctors supervision and blood work that had to be done in Germany. IT WAS VERY STRICT, listed the right vegetables for me, limited to 4 rye bread boards per day, 5 hrs between meals, simple meals involving one animal protein souce, etc etc. Frankly I went from being on my feet only 30 mins per day before the acute pain and inflammation would start. (I started with platar facciitis and a inflammation in my feet that progressed worse and worse.) After 18 months on this diet on and off, I was able to be almost 6 hrs on my feet before having problems!!!!. I also took lots of pain killers given by my GP, for 10 yrs, that as of 2 months I have stopped. I stopped the diet because we were moved to France in a slightly unpleasant, very short notice, with teenage boys that were already tired of several moves. In France I need to get the courage to do that again and resist the temptations. I am very good at adapting, make networks easily by putting in hard work always at the start of my stays, but it is hard work. But we have been craving stability for 5 yrs now...
Since arriving in France I rested on my health aurels and enjoyed getting into some french ways, white bread, cream, cheese and croisants. The stress of my boys changing school systems plus the food, plus my weak immune system (I had no idea until recently, jan2014) meant that I broke out head to toe in EXCEMA, I was not happy to have to go back to the strict diet but I did for one month and it got me out of the woods. (Dairy for me is a bad trigger in all its forms, cream, cheese, milk.... hard as I LOVE dairy.) My symtoms that I totalkly ignored and thought was natural due to my high fibre diet, was loose stools that got worse in France.
Bad 18 months in France, The doctor thinking all "americans are over medicated", drastically reduced my thyroid dose, Dec 2012. I went into severe hypothyroidism for 6 months, (summer 2013), until he agreed that I was right about reducing too quickly the thyroid. We, after 6 more months are almost back to normal with that, I changed GP'sseveral times as I was still very tired and they were telling me I was "imagining it and that I was depressed due to adapting to France not any other reason october 2013. He (my second GP), said he saw no problem with my feet even though I clearly had EM badly in feet and hands. I showed him photos of the flares, he pressed my feet and said he saw no problem, said I was a hypocondriac!! I was so upset! . (In the mean time I had caught but did not realise), mononucleosis, and micoplasma pulmonaire, found in blood work in January 2014,). SOOOO now since 2 months I am finally seeing General practitioners that are also naturopathic doctors to help me out. It will take a few months but I am making a group of friends in similar situations and we are supporting each others efforts. One such doctor did the tests that showed me my immune system problem of too little friendly bacteria and to high anticorps for mono etc, She showed me in January 2014, that my fatigue was not imaginary, and although the illnesses were no longer in active stages they would make me tired a few more months.I am seeing in 2 weeks a naturopath that helps fix food intolerences, NAET method, wish me luck...
I am planning to get tested for Yeast Overgrowth, or Candidaisis, this is a yeast that if you do not have the good bacteria in sufficient doses, gets very volumnious in your stomach, and inhibits the good bacterias growing. This comes from yeast bread and beers. It can become very dangerous with time. This is thought to be very common in North America as we do not have many healthy ferments, (sourkraut or kimchi or doshia, or fermented picles, or raw cheeses or yogurt) enough in our diets that other civilisations may have.Yeast ferments are not healthy for us though. We can handle some yeast when the other beneficial bacteria gets in large enough quantities.
Forgot that I have had the months of January to march with no pain or needles in my feet. This was directly the result of the treatment by a shiatsu guy directing me to herbal/plant treatment for nerve stress. I followed this program with amazing results, look up "laboratoire Nutergia", I'm sure they would mail it anywhere.
Please note, one must go very slowly in trying new things or they will back fire on you!!! I have had to back off and introduce teaspoons at a time of fermented products.
Sorry I am so rambling ! I hope it helps someone,
Lorna Christina
(I am now realising that 7 yrs ago I had a terrible sinus infection and followed 5 different antibiotics for 4 months and had zero improvement, they were going to operate until an acupuncturist and shiatsu healers fixed me in 4 sessions.) Naturopaths are saying that this kind of thing, strong antibiotics and painkillers, will seriously weaken your immune system. I also did not take any probiotics until recently, to rebuild the immune system, as I didnt fully understand.)