Hi,
I’m struggling so badly. I’m Michelle, 55, and live in Australia, but I’m finding it hard to find people in the same country as me. I do still love hearing from everyone and all different countries but, I would like to maybe have a friend from Australia too.
We are in spring now which I love, but the slightest warmth puts me in pain. Are there others who are like this also? I’m dreading summer as it gets very hot, and even though I have air conditioning and a fan, it doesn’t stop the burning. I have a servere case of EM. I also have raynards as well. I take painkillers, but it’s hit and miss with them. Is there anything that anyone does that helps to stop the burning or the pain? My doctor said I’ve tried all medications. I know we don’t have some meds you do in America and other countries. Is there a 24/7 company that I can call 24/7? Sometimes like now at 4:49 am I could call. It drives me crazy that sometimes the fan or air conditioning doesn’t. I’m needing to make friends who I can talk to regularly. Thank you again Kate . Oh. I find it hard to navigate the website on my iPhone, I don’t know if having a computer makes it easier or not. I’ve got to keep my feet up, so that’s why my phone is easier for me.
God bless,
Michelle
Hey @Michelle55 ,
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends. I’m in rural SA, not too far from the Barossa. I have a little nasty growing in my head, which has required multiple neurosurgeries (6 so far) with more to come or so I’ve been told. Although I have not been diagnosed with EM, the surgeries have damaged my hypothalamus, the brain’s temperature regulation zone. This has sent my body’s temperature regulation for a spin and trying to regulate temperature fluctuations has been a huge part of my management regime. I too hate summer (and winter for that matter), the extremes of both seasons are just awful. I have what I call ‘My Goldilocks Zone’ ie not too hot, but not too cold, but just right. Trying to maintain that ‘Goldilocks Zone’ is not an easy thing.
Medications can be very “hit’n’miss”. Because, for each of us, our internal biology can play a big role in the interactions of some medications, trying to find what may benefit you individually can take a lot of trial and error. A medication that may work wonders for one person can be like eating a TicTac for another. For some people nerve pain medications can work wonders, for others the side effects of some of these meds can be worse than the symptoms they’re trying to manage. Others have reported benefits from a low dose tricyclic antidepressant, for others anti-seizure medications can modify electrical signalling reducing the frequency and duration of symptoms. There can be many variations not only in the types of medications, but also their dosages. So, don’t give up hope.
Sometimes, when it comes to rare conditions, our GP’s knowledge of these conditions can be somewhat limited. Here in Australia, we have GP’s, then we have physicians, then we have specialists. GP’s can be fairly good for your more common run-of-the-mill/normal conditions. If they can make a clear diagnosis they can refer you straight to a specialist, but when it comes to the rare conditions their knowledge can be somewhat lacking. This is where a physician can be useful. A physician’s role is more that of a medical investigator. They can send us for tests, scans and request medical reports, then collate all of the relevant information to come up with a more refined diagnosis and possibly a more refined treatment plan.
None of this is easy to navigate through and although some people make out that they know all about it, they don’t. We know this because we live it too, so come talk to us.
Merl from the Modsupport Team
Hi Merl,
I’m in Victoria. I’m 55 and going through hell.
Hey @Michelle55 ,
Other than your GP, have you seen any other medicos in regard to your EM?
You state that you’re in Victoria, are you rural or closer to Melbourne? I ask this as the metro areas have a broader range of specialisations available. An example of this is rheumatologists. In rural areas there are very few such specialists.
Merl from the Modsupport Team
Hi merl,
I live in rural area. What about you? Even if I were to see someone, there’s nothing they can do to stop it or to stop the pain or the burning.
Michelle
Hey Michelle,
I’m about an hour from the city, but it’s rural. When I moved out here there were no neighbours around, that’s changed a bit as the city spreads out and more people wanting the rural/city life move out this way. The local council have now said ‘No more subdivisions’ out this way, so hopefully no more building works. But then knowing councils/govt… they’ll change their minds again.
There are some newer medications that some people have had some good results with for treating ‘Nerve Pain’, but again some people have not had the same results, so it’s no ‘magic bullet’. When having multiple conditions often treating one can trigger the another and trying to find that balance can be extremely difficult. I’ve been hunting for what I call my ‘Key’ for years. Just when I think '“Yes, I’ve got this thing beat…” it throws me a curve ball from left field, that knocks me off my feet and I’m back a zero again. It can be a real rollercoaster some days.
Merl from the Modsupport Team
Hi merl ,
My right foot is burning as we speak. It’s so painful. Today is a very hard day for me . I have no friends, I live alone . I have no one to talk to but my mum who’s not well. I don’t understand why God would give me this disease or why he would give anyone this disease??. I don’t know how I’m going to live the next 20 30 years like this? Now the warmer weather is making its way , I don’t know how to get through this excruciating pain from the heat. We need something to help us. I have no quality of life. I’m very severe with my EM . I’m so worried about the heat putting me in this excruciating pain. I don’t want to live like this. How do you get through the heat merl ?
Michelle