Hi Everyone I'm new to this site

I was just reading some of the discussions. I notice that every time I start with a new pcp it's very hard to get your point across unless you have a good doctor that really listens to you. I was also reading about people who have hypersensitivity. I never thought about that before, but I've noticed through years I am very sensitive - whether it's pain, feelings or always feeling judged by others. This is a disease which everyone wants to work through and have a normal day and be a normal person. I haven't felt "normal" since 1995. Even though I have had this disease for years, it seems that I'm still in denial. I want to go back to work because I felt better contributing and working and I really need the extra money. Does anyone notice that the pain can really mess with your thoughts. I have tried to ignore the depression or feeling like the safest place is home. Inside I love people and I'm outgoing and want to do the things I used to do - but sometimes everyday is a struggle and sometimes one day is better than the next. Does anyone suffer like I do from feeling cold even when it's in the 90's outside? This is my first time in a support group setting and chatting. I appreciate what anyone has to say and I feel for everyone with this disease.

Welcome...However, I am sorry you are here. This is a horrible syndrome to have. I am just learning more about it.

I was diagnosed about a year ago, but feel like I may have had it much longer.

I, too, get cold at times and I live in Florida. Some days when I am alone in the house for long periods of time, I turn off the AC.

Also, I am very sensitive to temperature, light and sound.

I am very lucky that I have a Rheumatologist that is very knowledgeable about FM. I may also have Lupus but my doc is not 100% sure even though I take a Lupus med and it makes me feel better.

I wish I could be the person I really am as well. Some days I can but most days I just hurt.

I try to push through and do the daily activities that I need to do but on other days, I just sit with my heating pad.

I am a full time student ( online ) and with the "fibro fog" I have to read chapters 3-4 times to make sure I understand the information.

I have found a lot of support here and lots of understanding....

Please hang around and ask questions. I feel safe here talking about my illness and the complications it brings...

Gentle hugs to you!


Thank you Gemm for being so kind. You sound awfully young to have this disease. I contracted it in my late 30's and I'm now 53 - so I feel for you so much. I have Fibro Fog all the time. I've been trying to read this one book for months now and I have to go over it again and again. I know what you mean about the a/c. While other people think it's unbearably hot - I can't stand the cold or the air blowing on me. Cold is pain to me. I love walking too - but find that when I stop moving the pain sets in more. I don't know how or why people get this condition. I just moved from Phila. and I went to a Rheumatologist there whom I did not like. She was not compassionate at all and summarized Fibromyalgia as a catchall for what doctors could not figure out. My primary doctor there was so much better and could not believe that a doctor could tell me that. I admire for going to school online. My son will graduate in February from going to school online and I know that is the hardest thing to do. Without a teacher there to help you - you are basically doing all the work yourself. You should be proud of yourself for what you can accomplish everyday.

Hi Tina - thank you so much. It's so nice to talk to people who are going through the same thing. We all have to stay strong - I'm a Sagittarius and I was always on the go when I was young - wish I could get that back. I think we all have to have the willpower to get through everyday. I am in a better place now and trying to change my life for the better. It's nice to know we are not alone in our struggles to conquer something that is out of our control.

Welcome. I just found this website recently and it is a really nice place with nice people where you can learn, exchange information and ideas, support one another or just ventilate. Fibro is a life changing and debilitating condition. Anyone who has it knows what I'm talking about. I'd like to still be working and productive and feeling useful but after years of trying it became impossible and I ended up on disability. It still bothers me because I never pictured that for myself. Fibro does mess with your head because most sufferers actually look ok physically but no one can see or feel all the pain and fatigue that we live with each day. It hurtful when others look at you like your some lazy slob that doesn't want to do anything. Ironically, most of us who have fibro have been over-achievers and type A personalities in our lives. That just makes it hurt even more. I think, sometimes, maybe if I had been a lazier, laid back person, this wouldn't have happened to me. It does seem to be prevalent in those types of people.

You mentioned cold. I am very sensitive to any extreme temperature, hot or cold. Seems like our nervous systems over react to every kind of stimuli. Living in arizona, I don't have to deal with alot of severe cold temperatures but if I travel to other areas the cold just kills me. So does humidity and storms.

I stay home alot too. It's a shame because I love people and good conversation. I can relate to how you feel. I used to ashamed to ask the grocery boy to put something really heavy into my car. I would try to do it all myself. Later, I would be flaring up with pain for weeks afterward. Stupid. I got over that, now I ask for help. I think we get can get a little too self conscious about that stuff due to other's insenstive comments. I never realized how others' opinions affect how we see ourselves. Fibro has taught me alot, so that's a good thing.

take care,


Yes, I totally understand and I'm sure everyone on here experiences the same problems. I hate not working because it is my identity and I feel lost without it. I need purpose too and to get out of the house and out of a rut. Sometimes I feel better too and think for one minute that I am "normal" again, then over do it and back to square one. This can be extrememy depressing at times, but I try to learn what I can and can't get away with and make the most of my days, and live each day, and week, at a time. I too suffer extremely from the cold and still take a hot water bottle to bed every night, but then again I do live in england where the weather is so dsappointing atm.

Hi Helene and welcome! I'm sorry you have to be here but it's a great place to come to for support and information.

Oh, doctors! Either you have a really good, supportive one who tries to learn along with you...or else you have a clueless one who says stupid and sometimes seemingly careless and cruel things. The latter are the ones to ditch immediately, unless you have no other choices. Which would stink.

I go through denial every single day, to be honest. I have a physical job a few hours every day and try to tell myself I'm not sick because I can do it (so far.) I lie to myself on good days, saying "it's all over now, it's behind me." The only days I can't be in denial are the days that I'm in such bad pain that I can't ignore it.

Temperatures do affect me, and seem to affect most of us. Cold or rainy days are murder. Humid days are murder.

But we do have each other, and that's a real gift. Imagine going through life without having ANYONE who understands or believes you? Or having no one show you any compassion? Yes, this place is a gift.

Hi Helen,

I'm in on most of this, especially the COLD! I had a jacket on here on the East Coast today, must have been a frigid 88 degrees! I surely do have my sensitive days!

Oh my gosh! Poor SK! I can't imagine how awful the cold months must feel on you if even the summer months are painful. What a cruel and odd symptom. I don't know how you manage to hack it in the Northeast because so much of our weather is cold.

I am so bundled, I waddle! LOL!! Love my Cuddle Duds, should be getting them out again soon! HA!

Hi SK and I know what you mean by bundling up and being cold. I too think 88 degrees is frigid outside. I have Cuddle Duds too. I lived in Florida for 17 years and was used to summer weather all year long - even the change in climate in North Carolina affects me. The best remedy I found for me is anything that can be warmed in the microwave and put on the coldest parts of your body really help. There has to be something out there that can help which can make us feel that the cold is not inside our body and that we can control our own temperature - oh well maybe someday. I think the best doctors are us since we know our own symptoms so well. I only wish you the best and hope every day you feel better. Healing from the inside out.

Hi Petunia Girl - I guess you love petunias which are beautiful. Thank you for welcoming me. It's nice to know that other people suffer the same way I do. I wear jeans in the summer and I cannot take any kind of air blowing directly on me. I admire you for doing your job and I know how hard it is to get up and do something everyday when you know you will suffer the consequences later. Life goes on and we have to live so denial it is and payment for pain comes later. One of these days someone is going to find out why our nerves react to so many stimuli the wrong way and maybe we can live normal lives again. Thank you and everyone else for the privilege of having new friends and being able to talk.