all4family

Hi firewoman, good thing we have this place so we don't feel so alone with these crazy things huh? Let me know if you find out any useful information from your doctor! (I can't seem to keep a good one, I think I scare them!!) Hi Mellisa, ouch! Do you feel the pain later? I hate when I burn my mouth! Thank you for sharing that. Suzy

Hi AJW, Thank you. Sorry I didn't reply sooner...computer problems. I did have an episiotomy, on one birth, and tore on the other. I am going to see doctors this next month, and I will ask them who I can see about this. Thanks for your help. Suzy

Hi, sorry it took me so long to reply. I had one computer in getting fixed, then my other one started breaking down so I couldn't use it. AJW, yes temperature sensation sounds like exactly what it is. I did have the QSART, and they didn't say there was anything wrong, so I guess that test was fine. This symptom seems to come and go in intensity (like all the other symptoms) All I can say about the nail is OUCH! I am so glad you had your tetnus shot. Yes I feel that safety is the biggest issue here. I have burnt myself on my heating pad twice, and I didn't even feel it untill the skin was already falling off, and hanging. Jump, I really get what you are saying about the difference between being hot an feeling hot. When I get warm like what you are descrbing with your mittens I love it too. I also get the "normal" feeling sometimes, so it is weird and I never know what to expect. But I am usually freakishly cold like you describe. When I get warm enough to enjoy it I am usually feeling sick from the heat ! Thank you for sharing that. firewoman, that is exactly what I mean! The waxing and waining, and sometimes being too sensitive!! I am so glad I am not alone with that. Thanks for sharing that. Hi Mae, well if your not making sense, then I have no sense, because I understand perfectly. And what your saying makes perfect sense to me! Because I do eventually feel it. Maybe when it is no sensitivity it is a delayed response, and when it is too sensitive it is a hyper response....just to add to your thoughts. Thanks for sharing that. It helps a lot. Hi broken shell, thank you for sharing that!! When I was doing Easter eggs with my kids I was reaching in the water, to get eggs, and one of my kids went to do the same thing and they said ouch mom thats hot. How can you touch that. Can't tell you how relieving it is just to know that this isn't just a weird me thing! Thank you all for sharing....it sure does help with this crazy disease that they really don't know the answers to! Suzy

YAY!!! I am so happy for you! I'm sorry you had such a hard time there at first, but what a great turn out!!!! I hope you get some really good answers!! So, can you share who and where these doctors are?? I would love to find a doctor that knew about both. I am already considering traveling far right now. So happy for you! Suzy

Hi Liz, I'm so sorry you got this news. I am sure you are scared. I know I would be. And if your feeling sorry for yourself, then you have every right to. I know I have felt sorry for myself for much less. I don't know anything about this disease, so I can't offer any advice, but I wanted to say I'm sorry for what you are going through. You will be in Me and my families prayers, for answers and comfort. I do wonder if maybe the reason you have the low blood pressure is because of the small blood vessels. (but this is just my thinking. I am no doctor.) Please take care, and keep us posted. If you want to talk to someone feel free to PM me. Healing Hugs Suzy

Hi Jana, Yes it is quite a strange little cycle. I'm always cold too. And want to warm up too. And like you said I just can't seem to warm up. But then when I do I end up feeling worse! Half the time I have the heaters running, and the windows open!! What a nut! That's so funny that you mention that about somewhere to live that's always around 80 degrees. I lived in Hawaii for 3 years, and they were 3 wonderful years! (except my fear of flying, and being on an island I can only fly off of, with a hurricane coming, but we won't open that ugly bag of worms!!) I wasn't "sick" sick then, but I had had strange symptoms on and off my whole life that I can now look back on, and the funny thing is that I don't remember having many of those problems there. Sooooo...if you want a place like that, and you don't mind being on an island 44 miles long and 30 miles wide, (Oahu) and when the hurricane warnings hit you read all about it, and it says to go 50 miles inland Oh and milk when I was there was 8.00 a gallon, and this was before 2001. then pack your boxes, and Aloha!!! But maybe California!!! Ha Ha Ha !! Thanks for sharing that. Oh...and just wanted to add in to scoot over, because I live in a colder part of AZ, and would like to warm up a bit!!! Till I get sick that is!! Suzy

Hi Ami, That is such a funny story! Although the problem certainly is not. Yes I have trouble with my vision too. Especially standing. Weird things like things looking dark, and smeared. I do have a tendancy to sweat a lot I will soak my shirt from only a slight amount of exertion (under my breasts) but my armpits hardly ever sweat....go figure. I certainly don't sweat to the degree your describing.....that must be just awful. I'm so sorry....Maybe one day we can get all these strange little symptoms figured out. Thanks for sharing that. Suzy

Hi Candace, yes I have that in the shower too. Which is weird, because as much as I want to feel the heat a little I end up overheating myself. It's kind of scarey, because I don't want to cause damage to myself, but just don't really feel it for a while. Hi Brianala, I do that too. I take showers so hot and my skin ends up really red. The worse part is, is that I end up feeling sick from the shower. But I really don't think it's that hot when I am in it! Thank you guys for sharing. It sure helps to know I'm not the only one. Suzy

I am glad it has made so much of a difference for you! I'm sitting here laughing out loud. Litterally! I have a picture in my head of you and your husband like the little cartoon characatures. First with your backs turned to each other tapping your feet angrily, then add hormone, and walla....you got the little hearts floating over your heads!! I'm so happy you found something that helps so much. At least I will understand if I don't see you around as much!!!! ha ha! Suzy

I am so sorry to hear you are in so much pain. I also have symptoms worse on my left side, and one side will turn purple while the other doesn't. Sorry your co-workers were so insensitive to your pain, and what you are going through. It sure would be nice to have compasion instead of anger. I hope you find some relief real soon. understanding Hugs Suzy

Thank you Miriam, I will add that to my list of things to google today! Ha Ha!! Isn't the internet grand? Suzy

Yay!!! I'm so happy for you!!! But please tell me how did you get past the first part??? Congratulations Suzy

I also get a lot of pain at night when I am sleeping. And like you said it does seem worse if I sleep for longer. I get like a numb hevy chest, arms, stomach the whole lot. And when I wake up it takes me just a bit of laying there, then I can move, and stretch around before I can get up. I unfortunatly don't have any ideas for what to do about it, except that on nights that I wake up a lot to go to the bathroom I don't have the problem as much. I did post about this earlier. I think it was numbness when I sleep. So sorry you are going through this...hope your sleeping now. Take care, Suzy

I know that a lot of people have trouble with being too hot, but I seem to have a little less of a sense of hot. The first time I realised it was when I was being tested for dysautonomia, and the doctor put a thing on my foot, and said before he did this should feel hot. So he did my left foot, and I nodded my head in agreement, then he moved it to my left foot, and I began to nod my head as I was just expecting it to be hot, but I didn't feel anything. He had to keep it there for probably around 50 seconds before I even began to feel anything. I have also gotten 2 really bad burns from my heating pad, and I didn't even feel that it was burning until the skin was coming off. Then yesterday I was touching a pot, that was on the stove to see if it was getting hot yet, and I said no it's not ready, then my husband touched it and said thats hot, can't you feel that? Does anyone know is this a POTS thing? Suzy

Julie, I have pain in my upper abdomen, and between my shoulder blades. But the pain is on the left. I have had my gallbladder ultrasounded several times, but it is always ok. Didn't you say on another post that your gallbladder ultrasounds were all ok? And is the pain for gallbladder on the right? Thanks in advance. Suzy

I don't think I've had any of my hornones checked, but sure would like to find out if a hormone could make a difference. What hormones were you put on? Suzy

I was checked for hepatitis like 4 times due to high liver enzymes....I believe mine was related to the medictions I had taken as I don't metabolize them correctly. My billy tot and billy ruben were high, and my urine was a lovely shade of brown. Miriam what is NASH? Suzy

I was really embarrassed when I was having a EEG, and the tech asked me some questions to see how my brain waves were. Well she asked me who the president was, and I drew a blank. I was sitting therre for at least 3 minutes, and then I finally said happily....Bill Clinton!!!!! Red in the face, because I knew it was wrong! Well my EEG was abnormal anyways! Suzy

Hi Janie, I'm sorry I made you cry (I hope it was a good cry.), but thankyou so much for your kind words. I'm so glad your on this group too. Every time I see a post from you I can't wait to read it, because I know you will have some very kind and understanding words to say! Hi Erin, thanks for sharing that! That made me laugh what you said about running them over. My husband yelled really loud when 2 girls about 18 years old walked in front of me for the 3rd time, and the worse part was there wasn't a sole behind me. AND they cut me off so short by jumping in front of me that it was hard to get stopped, so he yelled just run them over if they do it again. They heard him! I love what you say about teaching them, but it is so true. I couldn't imagine if one of my kids acted that way. We have always taught them (way before I was in one) to hold doors for someone in a wheelchair, with a walker or a cane. We tell them they have a much harder time getting around then us so if we can help then that is one good thing we've done for the day. I also wonder if they don't see me. But I know that is not the case for all of them. I was in front of a store one day, and there was a lady campaigning for something, and every person that walked by her she said hi, how are you, sign my petition. She didn't let anyone WALK by without saying hi. She walked by me 3 times, and each time she did I would smile at her, but she never said a word to me. She stood not 10 ft away from me. I thought wow, am I invisible? I probably didn't want to sign her petition anyways! Anyways thanks for sharing. Suzy

Hi, My doctor said it would only be down there for about 5 minutes, if that helps. Good luck! Suzy

Hi jjb, That is such a relief to hear there are others here too. I had the qsart I think it was sweat test when they did my ttt, and they said it was normal, so yay I'm normal somewhere!! Yes! My eyes also feel like they are burning. I have to put a wet washcloth on them just to get some relief. I don't use tampons because after I had my second child, and had my first period, I used one, and then had a really high fever, and severe diareah, that landed me in bed for 4 days. I didn't know if that was why, but haven't used one since. I'm sure there are others who aren't bothered by them at all though. Thanks for that tip. Thank you Miriam...I will be looking further into it, as I put out other fires! Suzy

Hi Broken_shell, now I got the Cheers theme song running through my head! That is how I feel too. I come on here, and get at least peace of mind! And always support! And who can beat the electronic hugs! (I've never heard them called that. that is cute!) Chrissy I looked at that website, and it looks like a good place to start. I am going to start a letter as soon as I get my laptop back. Anyone esle planning on writing? I'm looking into something else too, but I'm sooooo slowwwwww....so when I get more information I will post it. Hope everyone has a nice symptom free (hey we can hope!) day! Suzy

Best wishes. I will be thinking of you. I also get sick when I fast even for a short time. In fact the first time I got really sick I had been on a 3 day fast. At least you will be at a good place. I agree with broken_shell....go slow.....at first! But once you feel better go for it!! Ha Ha!! Take care, and relax. Hugs Suzy

Hi Janie, I think that is great that you want to adopt. My kids have learned a lot through me being sick. Like compasion, and how to be considerate. I used to lose my voice, (but this stopped I don't know why) and they got a big kick out of calling me squeeky. But we would write notes, and they would tell people on the phone what I was trying to say. They know the look on my face when I am having problems, and usually they are pretty considerate, and let me rest. Not only that, but nothing speaks louder then a great big hug! I always have my husband trying to have conversations with me from another room! He always sits in the living room and yells at me to come out here and look at this. (always something I'm not really interested in looking at!) I have reminded him over and over, but I just can't seem to get him to figure this one out!!! How do you do it?! Oh well though. For all his positives this one I will just have to learn to deal with!! Suzy