nadine

What a terrible experience for your family, glad that no one was harmed. We all like to think we are safe in our homes.

Just thinking of your husband and wondering how things are going for your family?

I had my only daughter ,who is now going to be 21, two years before I was became ill with CFIDS. It was the greatest joy of my life,as we had conceived with the help of fertility drugs. The most difficult times regarding parenting with CFIDS, was sending my then 2 year old to a babysitter everyday, because I was not able to care for her alone due to the illness. It broke my heart, but I had no choice. I then was well again until she entered first grade and again was down for 6 months. She was older and could so some things for herself, but I still had someone come every morning to get her to school and care for her while my husband worked and I ended up hospitalized for 5 weeks. It was difficult for the entire family, but I was thankful to have the support system I had. We later debated for years regarding trying for another child, for fear of another relapse. We decided to try without fertility drugs and whatever happened would happen. I had many with CFIDS tell me they felt better during pregnancy, my fear was the drain after. Well there was never another child, but the one we have is an amazing young woman, who also has been diagnosed with CFIDS. She was a blessing and it is difficult to see her struggling with the same health problems. She has improved,but made many adjustments in her life and she is now caring for me, 15 years after my last illness. I guess we go through that cycle as parents and children- caring for each at various stages in our lives. The positive is we are extremely close and we understand exactly what the other one is going through. Just wish she had her dad's immune system and health rather than mine.

My comments would be most like mom4cem- especially the end comment.

Pilates seems to be too much for me. I do some very simple yoga stretches when I can. Trying to just walk is as much as I can handle right now. Do some leg exercises when I am having a better day.

I am sure there are many individuals who have experience with this and I am just new here, but have already had a negative work experience. My employer of 20+ years was very accomadating, holding my job for a year and stated they were willing to be extremely flexible with attempt to come back-working limited hours at desk, being close to entrance of building, bathroom nearby, no stairs and wouldn't have to be scheduled for patients right away-but all that changed when a new supervisor decided that if I couldn't do pt. care, there really was nothing for me to do!! Gone around and around on this as I know my job better than the supervisor, who works in a complete dift. facility!! However, after all the stress of this- I know that my health is so unstable at this point that I could not return for specific hours and days. I was hoping to go in a few hours a week on my better days, but I still can't even drive. My physician advised disability and I work with him. He knows my job. Good luck to you with your interviews and I am sure many will have experience with this.

I do have symptoms before fainting, which include nausea,being very lightheaded,sweating and always feeling need to use bathroom,urgently- urinate or loose bowels almost every time. I have presyncope episodes more often than actual fainting, but they are horrible and I can feel lousy for several hours. My heart will often start to race after the other symptoms appear. I will also have symptoms if I need to use bathroom,can't wait for any length of time and it is far more frequent trips than I ever had. I am never comfortable going far from home because of this. I have only driven three times in past year because of these symptoms.

A very warm day here today-went outside to try and give my dying flowers a drink ,which was a very short walk and instantly felt nausea, achey, horrible. Back inside to fans and water. AC not in yet, but this is something I have used far more than I would like. I prefer open windows, but doesn't cool me enough. I like all the tips that everyone has given. I also need cars cooled down and usually go out late afternoon or night. This makes life difficult to share with others, who enjoy the outdoors. It seems that the early spring months were the best for me as far as affects from weather, except when we had rain.

nice message and important-thanks for posting.

I have a bp monitor and find it very helpful. I notice that if my bp goes up to 130's over 80's or 90's -( which is about 20 points higher for me with meds) then I get headache, huge pupils,blurred vision and feel as lousy as when it is too low. This usually happens after I have been trying to do something, but not always. Sometimes wake up feeling that way. I don't usually have headache when bp is low, unless I have been in sun- then def. will bring on headache. I often have a hard time finding pulse, one of those that has to press hard to find it-so machine is helful.

I am a twitcher- all the time. It has been a major part of my symptoms. I was not sure if this was POTS related, or CFIDS or FM symptoms as I had in past, but not to this extreme. I get lots of spasms, weakness and stiffness in legs especially. Right eye spasms all the time, think that may be related somehow to my vestibular problem I had, which is when all this went downhill for me.

futurehope- I appreciate your input as I have also been wondering what people have found as helpful diets. I have not been able to eat large amounts of food at a time without symptoms and have managed to put on an additonal 20 pounds. I am sure that is partially due to being bedridden for so long. This has been very frustrating. Your routine and comments were helpful. I found it funny that I also start my day with two toaster waffles, everyday. Easy for me to make and has at least some nutrients.

I can certainly say that you are def. not alone. There are some things I can't think about either, like the fact that I may lose my job that I have loved for over 20 years, not able to go to out to socialize, get a haircut or do my own shopping. However, I tell myself I am not alone and try to keep busy-be it online, watching movies-as suggested, whatever will help pass the time. Even becoming a sports fan. The simple things now bring great joy- it is even a joy to say I was able to do the dishes, which I hate doing!! As far as missing all the things I love doing, it does make me sad,very sad, but I love to hear about friend's lives, trips-the latest gossip,etc, as it makes me feel like I am still part of their world. I also enjoy reading when I can, something I never had time for. Love to listen to uplifting, fun music. I also am fortunate to have a nice old porch to sit on and enjoy the wild turkeys and various other animals that visit daily. Again, something I rarely had time for. I have friends who arranged dinner party and lunch dates-they come with all the food and I have to just sit and enjoy their company, lay down if I have to. My hair dresser has also come to my home, which is great-just takes a little more to schedule. I have also become quite good at home shopping for most anything. There are still many depressing moments, but I have to believe this will get better. Some days are far worse than others. This forum has been a great comfort to me.

another set of prayers being sent to your family.

This is one of the symptoms that scares me the most at times, like you just can't get your breath. For me it will often be associated with abdominal bloating, for no real reason. Sometimes I have had something to eat and drink and sometimes, just happens. Sometimes I wake up feeling like this. It is interesting that when this happens during the day, I will also test myself and do crazy things like try to get up and putter around house or vaccum to just see if I will be ok and distract myself. That's if I am able to walk at all that day.The vaccum deal is a riot, if I am able to do it -it is holding on to walls and sitting on couches, etc. I hope you feel better. I understand the PCP thing- everytime I go in they state -"oh your lungs sound great,oxygen level is fine"- just can't get them to understand. It usually passes within a few minutes, until the next time. Seems to come and go. Still living on my first floor for a year because of the stress it seems to cause on my body doing the stairs on any regular basis.

Sorry to hear all that your family is going through. It really seems that he should be hospitalized for observation and testing. I agree that his weight loss would be of great concern to me. I know you state that the next big hospital is 4 hours away, but could you possibly call a cardiologist there? I would def. be pushing the PCP to do more. I am fortunate to live in area where I have several hospital options, including some of the best in Boston and still have run into physicians who weren't worth the months of waiting to see them. You have to just keep trying. There are some amazing ones. I hope you get some answers and help soon.

I am glad to know this is not unusual. I have had this several times, very dift than panic attack,also very sensitive to noise.

So happy for you that you have been able to work things out and your dad is going with you. Congrats and enjoy!!! I am sure you will meet some wonderful people!

Just wondering if you have a cardiologist? I would think an echocardiagram would tell you this. I know I have had several and also very high tech nuclear imaging test done of my heart. I did not have to do any exercise for either of these. You may want to discuss with your doctor.

I feel your sadness, pain and frustration. It is so difficult to explain how we feel to even our family ,which makes it hard for them to understand our concerns about going places and feeling well enough to do anything. I think if you are able to attend any of it you would feel a great accomplishment, but I certainly understand the many concerns of travel, being more run down and cost. I have barely left my house in a year, except for apts. and I am forcing myself to go out more on better days and whatever happens, happens- I have little control over it. At least I feel some joy in attempting to do normal things occasionally. I haven't made any lengthy rides and certainly not alone and still unable to drive. Miss the independence and work like crazy. I feel for you as we just want life to be normal and to go on with our goals. Good luck with whatever you decide. Not sure how long your conference is, how far you would have to travel,could you allow for extra time to travel and rest? I hope you are able to go.

Welcome from another newbie! I am learning more every day here-

Hope you are feeling better. Sometimes my heart rate goes up and sometimes it goes down. It used to always race when I was feeling faint, but now it sometimes seems slowe. Take care.

I have also recently been denied and will need to appeal. I had no desire to apply for this, as I never thought I would be out of work for a year. My long term insurance company through my employer is covering me currently, but requires that you apply for SSD and appeal denials. I can understand this, just don't know that I have the strength to get through it all. I would often help clients complete these forms as part of my occupation and never thought I would be doing the same at this point in my life. Wondering if most people have consulted attorneys or represented themselves? My physician is encouraging the appeal and feels I should have been approved. Has the experience been positive for people if your physician supported application? I have seen some clients passed with no questions and some who were waiting and appealing forever with very serious illness. I am thankful that I have some current income, although very overwhelmed at the thought of not returning to work and going through not only the physical battle with my body, but the stress of appeal with SS. Not sure I could deal with attorney meetings to have representation. They state that friends and family can testify or assist with appeal-has it been helpful for anyone to have family at these appeals to validate the impact of daily life for not only the individual but entire family? I am just wondering how much family testimony would be considered, althought they are the ones that know exactly what we live through every day. Good luck Lisa- I will be thinking of you as I also go through all this and try to get through the process

I recently tried Cymbalta for one day at 20 mg and had horrible reaction. Had nausea the entire first day, real bad headache that night, then next day passed out cold after trying to get up-even though usual steps of getting up slowly and drinking water,etc. felt myself sweating and blacking out, body felt numb everywhere. Felt HORRIBLE for several days, couldn't sit up without feeling like I would black out,now on day 4 off medication and getting back to the usaul lousy feeling. Was hoping it would help with nerve and muscle pain-big mistake for me. I am sensitive to many medications. Glad I only took it one day- a very scary experience.

Hello Holly- I am also new to this forum, but am so thankful to have found it. I have finally found a place where not only can I find information, but people who are supportive and willing to share their experience and knowledge. My daughter is 20 and also has CFS, she was diagnosed in 9th grade and it has been very difficult for her. We apparently have similar immune systems. She found it very hard to explain this illness to her peers, teachers and now professors. She has made many adjustments in her life and gets rather down about it at times,as she is not able to do everything her friends can do. However, some of her adjustments have paid off to be great rewards for her. She did graduate in the top third of her class with extra credits, she did compete in sports and she went away to school one year. She is now living at home, going to school part time at night -when she feels better and has found a part time job that she loves and has been able to function a lot better. She actually gave a speech on CFS in her public speaking class and was overwhelmed by the interest of her classmates. Her professor later told her his wife had it and he really knew what my daughter was experiencing. A small world!! I have been living with CFIDS for 20 years and was doing really well for 15 years, until just recently when I developed NCS and ?POTS, balance disorder after an apparent vestibular problem. I will consider this another challenge and bump in the road and with support from others I know I will get through this. I am just learning about the POTS myself and find it very interesting that there is such a connection to so many with CFIDS. Welcome.