• 25 days ago

    Heightened Senses and heat/skin hypersensitivity

    I wanted to give a brief introduction about myself. My name is Mark. I am a 30 year old male living with fibromyalgia. So I feel the soreness and tender points related to this condition, however that is the least of my problems. What is most bothersome is the lack of compassion and understanding with the co-symptoms. Bright lights, loud noises (sirens, music volumes, people yelling, babies crying etc), and the intensity of smell causes severe discomfort. I live in New York and on one of the hottest days on the train i smelled at least 40-50 conflicting body odors at once and I thought I was gonna pass out. Summers are the worse. What people perceive as 90 degrees feels like 110 degrees to me; the pollen count is so high and dust tends to accumulate more in my room this season, if I brush up against dust welts form. I also go to massage school and I’ve learned it causes a wide spectrum of symptoms that can mimic other conditions. I’m also gay and men especially have no empathy regarding my condition. Because this mostly affects woman I haven’t met another gay male who suffers from this. I feel sad and lonely. I have lost almost all of my friends because they never listen when I tell them the symptoms I feel. They often forget, some have made jokes about it, one calling me a hypochondriac. So they will blast music, badger me into traveling to them on the most scorching days. In regards to the hypersensitive skin I layed on my friendship bed and got swollen landing in the ER. He also never bothered to visit me, even check up on me the day after. I told the remaining 2 people I know as a safety precaution because they are not good on the upkeep of their house, to visit me instead since my room has reduced lighting, white noise makers, and hypoallergenic linens. They have yet to even visit me. Doctors, also unkind. The day I was pale and swollen from the allergic reaction, knowing my diagnosis of fibromyalgia in the ER, were playing it off that i was hallucinating and I was healthy with my normal skin complexion. They said it’s all in my head and have me an outpatient referral to psyche. I had to pay out of pocket to see my family doctor who’s staff I’ve known my entire life to tell me. You look really really pale and unwell. I broke down and cried because i finally felt as peace knowing I was not crazy and the doctor who wasn’t treating me was just unkind. I just want to talk. I get lonely and I just want to know if any other patients get the irritation to heat, prone to allergens, absence heightened senses. This condition displays differently amongst each person regarding symptoms.

Responses

  • RE: Heightened Senses and heat/skin hypersensitivity

    I am so so sorry to hear that you have been treated so horribly wrong. I have had FM for over 40 years and it's sad to hear that the way we are treated doesn't seem to be getting any better. I have lived with it long enough and some friends have hung in there long enough to know that we are not faking this illness. Because we look "normal" it's hard for people to see that we are hurting. I am also extremely sensitive to sounds, smells, lights, touch as you are. Try and get some time for quiet meditation...I used to go sit in a library when I lived in a big city and didn't know what else to do. Meditation DOES help between the times we meditate too, because we can call upon that calm feeling. Please give it a try. And, yes, doctors can be just as insensitive as anyone else as far as reacting to our issues. Read everything you can on FM and try somethings to see what might help you. Sleep is so SO important, don't try to just get by with a few hours. Friends that are being jerks...get rid of them! They will either come back and try to understand and be of help or you don't need that kind of "friend." I told my doctor... in front of the people in the nurses station... that she was not helpful to me and in fact was belittling me and didn't know the current correct help for people with FM. I am looking for a new physician. Good luck to you!!!
  • 1 day ago

    RE: Heightened Senses and heat/skin hypersensitivity

    I had similar responses from doctors and friends. No one can ever understand unless they have lived it. I have been in a similar boat for 2 1/2 years and basically have no friends. Took a long time for me to find any empathy. I think it’s especially hard for someone so young and male to boot. Hard enough as a 47 year old female. Hope you found some people to help. I found support through chronic pain group.
  • 8 hours ago

    RE: Heightened Senses and heat/skin hypersensitivity

    Hello Mark, I read your post about two years after you wrote it, and I thought it would be helpful if I replied. I am a woman who is much older than you are, and I have had fibromyalgia probably since I'm in my twenties. It is surprising that not one person replied to you. On the other hand, how likely is it that people know about these posts? (I didn't know until today, when I came across it while looking for something else.) In any case, I empathize with you. You are not crazy at all. I experience the same things you have, and I am always very hot. Certain sounds as well as certain people's voices irritate me. Loud TVs, music, noisey public places are all triggers. Emotions flaring are triggers. Odors such as some foods, gasoline, moldy areas make me feel nauseous, and they affect body pain. I wake up during the night from the pain, and the areas of pain is so widespread now and constant, whereas, when I was younger, I'd get bouts of terrible muscle pain many times as reactions to stress or if I had a bad cold, flu, or another ailment. Oddly, staying in motion helps ease the pain (if you're not totally exhausted from the muscle weakness and pain). In recent years, I get exhausted from "doing nothing," and the overall feeling is like having the flu x 10. There are web sites about fibromyalgia that are helpful. "Fibromyalgia News" is one of them. In short, there is no doctor that I've seen yet who has clear answers. I've only recently started taking Gabapentin 100 mgs about a year ago, and I only take it when sleeping becomes a problem. (My doctor prescribed 3 a day, but I just can't because I'm already exhausted, and that tends to make you drowsy.) I take the Gabapentin so I can sleep, if I'm really desperate. If you're like me, you have a lot of nerve pain, so much so that just scratching your arm (or wherever) sets you reeling. I learned from one of the fibro web sites that feeling excessively hot is a symptom of fibromyalgia. It also seems to be related to Epstein Barr Virus and Chronic Fatigue Syndrome. No one really understands unless they have it or lives with someone who does. Years ago, a "specialist" prescribed 1800 mgs of magnesium, and that isn't a bad idea. However, I should have know to balance that with at least 3000 mgs of calcium. After 9 years of high doses of magnesium, I ended up with a leg fracture, which I learned is possible for people who treat fibro with high doses of magnesium.
    Mark, off the top of my head, my best advice is to eat well--natural foods and no junk foods that are loaded with chemicals, do a LOT of stretching to keep your muscles moving and loose (very important), drink water, meditate on good things (because stress is a trigger), get plenty of protein, and I recommend a good protein shake that suits your needs (carbs? no carbs?). I'm not sure if I can give you brand names here, but I'm sure a decent vitamin store employee can guide you. I drink "green drinks" and I take a teaspoon of amino acid powder, plus I take more supplements than I can write here. That's up to you. If possible, you might want to see a doctor of natural medicine (not covered by insurance in New York though) and even an acupuncturist (my next move). I hope there's something here that is helpful to you. It's comforting to get to speaking with others who have fibromyalgia, even on a blog. You are not alone! I hope you get the proper help and be the best you can be!