What can i do but deal with it . Its a silent hell

[Angel1966]

Ive always had good skin and tried to look after myself but about a year and a half ago i started getting dark lines on my cheeks and leassions would break out that burned like a hot poker to the face .

They would split open and there would be strange almost silicone looking strands and small little pod like things that would come from them .

I know that picking and sqeezing is something that you should not do but these things would burn like hell till they were removed and the wound would not close up till removed . The strands inside would sometimes feel like a tight hair stretched tight inside and would be like plucking at guitar strings before being able to get them out .

I thought may be as i was then 51 and having hormone change that it could be a possible cause and the doctor treated me with antibiotics for acne .That did nothing to help . Lack of sleep with the pain was making me irritable and on top of that i was now becoming very bloated and had a very noisy tummy and i noticed a stool change .

I returned to the doctors and doctor after doctor my story continues with seeing dermatolagists a tropical desease doctor many tests that come back negative for parasites and fungus even a biopsy that came back mostly normal but they found a substance that was not known to any doctors present in my sample taken by them .

Ive been passed on to different dermatolagist at different hospitals still no diagnostic of what it is , only that now labelled delussional and the only reason i see for that is that like anyone you start to look for answers on the net so start asking questions of possabilaties and they are stumpt and can not find the answers themselves so its an easy cop out to put down as there opinion and pass on to someone else .

Very stupidly i took samples thinking it may help but that makes matters worse as i then become obsessive about it to them .

Now suffering depression and anxiety but finding ways to cover up with make up to continue to work and face people .try and ignore the strange looking things that come out of my nose and ears and skin let alone my stools and the itching and burning the terrible headaches . Its a living hell that i rarely try and talk about as people are either fed up with hearing about it or think im a nut case as it truly is a story of what seems a far fetched story from the horror channel .

[Ell17]

Hi Angel1966,

Has anyone mentioned Morgellons Syndrome? Your symptoms sound very similar. The bad news is that not much is really known about it and there isn't really much in the way of treatment, from what I have read. You could do some research and see if your symptoms fit. I feel for you because from the little I know, it sounds like pure hell.

There are many people that suffer from it. Maybe you can find a Morgellons online forum and converse with others that are having similar experiences.

I hope you can find some answers and relief very soon.

Take care.😊

[Angel1966 in reply to Ell17]

Morgellons is it seems a condition that doctors say does not exsist still although there are thousands of people with the same symptoms .

May be due to not having the answers of what it is as all tests being negative to all tests known to date that doctors are forced to give a diagnossis of the patient being delussional .

Barts hospital is my last hope as the clinic there are looking into the morgellons syndrome which says to me that they must at least think there may be a possibility of this being a real desease .

It is something that i have very much looked into and all of my symptoms do point to this being a possibility of what i could have .

[Ell17 in reply to Angel1966]

Well, all medically accepted disorders today didn't start out that way....but, if we are going to develop one, we certainly want it to have been on the radar for a long time, with hopefully quite a few treatment options. No one wants to end up with one of the newly emerging outliers, that's for sure.

Also, in this day and age, it's still not unusual at all for women particularly to get an "it's all in your head" diagnosis when they are indeed suffering from long established, diagnosable conditions. I don't put much stock in doctors' naysaying.

These symptoms you're experiencing, many of which are visible, do exist and they are very real to the sufferers, and appear to be occurring more often across the population. Once the numbers of people affected grow large enough, maybe the incentive will be there for research/treatment. But, until then, gaslighting patients is one area where the medical community truly excels:/

That is why I mentioned trying to find a Morgellons forum where people are suffering the same symptoms as you are and pick their brains for info.

Whether the medical community chooses to recognize this as a true medical disorder or not is anyone's guess. As with other established disorders, like the thyroid, that are not mental health related (but, are often stilI treated as such) where people are regularly misdiagnosed or undertreated; you may be on your own in trying to figure out, research, and self treat. It's unfortunate, to say the least, that any one should be put in that situation, but it's now becoming commonplace.

I hope the hospital you mention can give you the answers you need and that you're on the road to recovery soon.😊

[Zeusdog1]

I have the exact same things ALL OVER ME. 12 years now. Horrible pain, weakness, brain fog, crazy things seem to happen to me and surroundings. Anemic, diabetic, lost teeth, a lot of my eyesight, horrible "shedding", itching, soars and more. Docs r clueless or just don't care ..