I will try ANYTHING at this point, my friends! I will look into this chillow and thank you VERY much! :)
I had an appointment with my Primary doctor this morning and he put what felt like a vice grip on the toes of my feet, and all I could do was groan.. This was the first time he'd seen my feet since this all started and I understand, he had to test, but still..
Going to have to see if the hubby can help me with uploading some pics I took of my feet when he gets home.. I'm having a monster flare now.. Even my palms are tingly and red.. This is nuts.. I thought Superior Canal Dehiscence Syndrome was torture, but this.. WOW..
Oh, I was told today that it also looks like I might have a "thermoregulation issue" because I sweat constantly when in a room over 50 degrees now, so when we got home, the hubster turned on the summer air function in our furnace to try and help me stay cool.. I think he finally understands how uncomfortable this is for me.. I will take solace in that, at least..
What you describe about your head pulsing with the heat; I understand that, but sometimes if I don't start trying to cool myself off soon enough, it gets to the pounding.. It doesn't feel like a migraine to me, but it feels kind of like heat sickness, like you've been out in the sun too long.. Does that make sense?
Yeah, I have this too. I just guess it's restless leg syndrome. I've had this and EM since I was a kid. Learned to live with it. I have tried many meds through all of this, through the years. I'm of the belief, these meds are part of the problem. For the last 4 years, I haven't taken any meds. Tried one Dr Davis prescribed. But that lasted 3 days. I can't handle all the side effects. I'm just wondering if one day this puts me in a wheelchair. Whatever. I come on here sometimes and talk about it. But in the end, I find myself getting depressed at all the frustration, pain and sadness I find on here. And it's something I so understand. So I guess I try to maintain some frame of mind, of acceptance. Or whatever it's called. It's just sad to be stuck in this stupid body, when one's mind is healthy and wants so much more.
I absolutely get a deep penetrating heat along w the scalding surface burning and redness. It’s a very “lovely” feeling. 11 years for a diagnosis. My symptoms were very severe in the beginning, waned after many years, then back w a vengeance, but much worse and in the feet and also w small fiber neuropathy. I’m a PA, trained at a prestigious medical school and never learned about it… None of the drs I saw or ones I worked with knew what was going on with me! I saw 9 drs initially and all scratched their heads… Then I had a neuro surgeon say it was sympathetic over drive and would go away in a year… Man he missed that mark! I did find out on Monday why it is so often missed and it makes complete sense-at least for proViders here in the US…
God bless you all!
Thanks so much for the info about chillows which I had never heard of. Keeping my feet cool is the main thing I can do for myself to alleviate the symptoms, so I have sent away for one from Amazon - I use mail order a lot as I live in a very rural location here in the Scottish Borders. I know it can seem depressing reading everyone’s woes and suffering, but what helps me is how positive everyone is and how many good ideas we can share. Also it’s great to have a forum for a good moan on bad days. My husband is very supportive but in practical ways, he thinks talking about my aches and pains doesn’t help and is just giving in, so I can’t really tell him how bad I feel some days. This is a great place for all sorts of reasons!
Thank you for responding. I first experienced it about 12 years ago. I was diagnosed with it 8 years ago, so 'only' waited 4 years for diagnosis. Enough to send me crazy meanwhile. I'm sorry you get that deep penetrating heat feeling as well as the surface pain. Although I'm relieved to hear there are a few people out there that also get it and I'm not the only one -- docs tend to make me feel like that. Not all docs but some. I was told by a doctor that people get this and they had seen it last for anywhere from 2 weeks to 2 years maximum. Huh? Mine has waxed, waned etc but it's definitely been 'waxing' for past 3 plus years.
blue
Jenny Jones said:
I absolutely get a deep penetrating heat along w the scalding surface burning and redness. It's a very "lovely" feeling. 11 years for a diagnosis. My symptoms were very severe in the beginning, waned after many years, then back w a vengeance, but much worse and in the feet and also w small fiber neuropathy. I'm a PA, trained at a prestigious medical school and never learned about it.. None of the drs I saw or ones I worked with knew what was going on with me! I saw 9 drs initially and all scratched their heads.. Then I had a neuro surgeon say it was sympathetic over drive and would go away in a year.. Man he missed that mark! I did find out on Monday why it is so often missed and it makes complete sense-at least for proViders here in the US.. God bless you all!
I'm at a point now where I just try to shut up about my physical stuff when around my husband. I can see it frustrates and disappoints him. He'd rather I not talk about. After 12 years of this stuff I honestly don't blame him. I have found it hard to live with myself, let alone expect someone else to do it. I was upset the night before last -- my skin was in a flare, other symptoms I have from another illness are giving me a hard itme -- and my emotions regarding my illness just leaked out of me. I'd been trying to damn them for at least some months, keeping as much of this as I could to myself. But ultimately I was unsuccessful. I am exploring the idea of seeing a psychologist who specializes in people with chronic illness. Part of me thinks, 'not another doctor' and 'how am I going to have the energy to get there' but another part of me is thinking that my approach mentally hasn't served me well at all and there must be a better way than getting upset, damning my feelings up for as long as I can, then emotions overflow and I'm back to 'upset' and distressed.
blue
Stardust67 said:
Thanks so much for the info about chillows which I had never heard of. Keeping my feet cool is the main thing I can do for myself to alleviate the symptoms, so I have sent away for one from Amazon - I use mail order a lot as I live in a very rural location here in the Scottish Borders. I know it can seem depressing reading everyone's woes and suffering, but what helps me is how positive everyone is and how many good ideas we can share. Also it's great to have a forum for a good moan on bad days. My husband is very supportive but in practical ways, he thinks talking about my aches and pains doesn't help and is just giving in, so I can't really tell him how bad I feel some days. This is a great place for all sorts of reasons!
I had a dr recognize my problem, but not diagnose it exactly-no specific name just a neurogenic rash… He also said it would never last more than 18 months.
Blue is not alone in hearing this!
dkel9307 said:
Hi Blue
My experiences - personally and with others - is that a good psychologist can really help. They are good listeners and can provide tools to help us coach…especially knowing what our derailers are and how to recognise them early.
Also, better to “vent” in our community that to our partners! (Within reason, that is…:-))
I had a thought when on waking up for the 4th time last night. Last night I did not have the skin burning feeling at all but I did feel like I was very hot internally. Each time I woke up, I got up and went to the bathroom or got a glass of water and the internal feeling cooled. I was sitting up on top of my covers with window near me open to cool down until I was a bit too cool for our almost-winter-time in Australia.
l then lie down each time feeling cooler before falling asleep. Only to wake up each time feeling very overheated inside.
Then I had a thought! I know, they come rarely for me. LOL. Anyway, I wondered if it was my mattress? About 4 years ago, at the start of winter I bought a new pillow top mattress. I'd never had one before. I was very impressed at how comfortable it was. But, looking back I can see that at some point after buying it, I experienced waking feeling too hot internally much more often than I was used to at that point. At the time I blamed menopause. But menopause had started 4 years before and now after 8 years I just don't believe it is menopause, anymore.
Although I experience feelings of internal heat during the day these feelings occur much more frequently at night. Completely disrupting my sleep. So I got onto the internet and did some research on pillow top mattresses and found that so many people find them too hot.
Okay, I thought. So I flipped my mattress. Only to find it was a 'one sided mattress' (never heard of them until I looked it up on the net -- I thought the other side would just be a normal mattress like I used to sleep on - silly me). The other side of the mattress is impossibly hard and not made for sleeping on. So I had to flip it back over. (My back is now killing me! -- this has an upside, I cannot feel EM symptoms at this time and I guess it's because the pain in myI bad.)
Anyway, I'm wondering if this pillow soft mattress has contributed to that internal heat feeling I get.
I'm wondering if anyone else has wondered about these pillow top mattresses and heat?