nadine

Sorry you are having such a hard time. Do you have any other support from other renters in the building to push the a/c issue? Well, I am not sure what the housing situation is there, but I am sure it is like most areas in that it is difficult to find an affordable place in a good location. Would it be possible for you to relocate to another building on a lower level? I understand that it would be a nightmare to think of moving, but if this situation continues to be a problem for your health, maybe that would be helpful? Good luck to you.

Mornings are worse for me as well, not that any part of the day is good. It takes much longer to get going this past year and very very stiff in the morning. When I was able to work,I was up at 6am no problem and couldn't imagine that now. I am not sure if my muscle stiffness,pain and fatigue is the POTS of FM/CFIDS. Still trying to sort it all out.

I have had presyncopal episodes when driving, that really scared me. They started a couple years ago and were infrequent, but I would stop pull over and literally called my husband one time to speak with him on cell phone to try to help me stay calm. Def. was not anxiety attack. I have also had him come get me before. I now have not driven for a year, as not stable enough currently. My syptoms were not quite the same, felt all the reg. presyncopal symptoms. In regards to your comment about relation to menses, I have gone through menapause at an early age and the odd thing is, I thought a lot of my symptoms developed then.

You are helping him in your own way-just by asking for prayers and being there. Another set of prayers and wishes sent- take care

Thank you- it was just what I needed. They are more than willing and seem to enjoy it as much as I do. You should suggest it to your friends and see if they are willing. Sometimes they bring food, this time we ordered out and had delivered to my home-wonderful!!

Thanks Kate, we did have our get together and I did make it though with a little more medication. I did have to lay on my bed in the living room,after about an hour and a half of trying to sit and they just moved with me. We had a delightful time, many laughs with six wonderful friends. I am now exhausted, but it was worth it.

Seems like you two are wonderful people and have an incredible outlook on life. I send prayers your way and wish you a special day together for your birthday. Cry when you need to, it releases the stress on the body- and it's needed at times-then move on to laughter!

I have worked with a naturopathic physician a couple of dift. times in my life. I found them to be helpful for me with co-management, not leaving my traditional physician, and more open minded. Actually, my reg. MD advised it. "someone to look outside the box" I haven't gone for recent treatment for POTS,NCS, but am considering. I always look for good referrals from pts. who have gone to these physicians and check the training. Some therapy is a little too alternative for me, but like to have options. I have seen one who was a former MD that worked at my former employer, so I knew him well and he later went into more holistic health care. I have also tried some accupuncture and chirop. therapy. Good luck to you.

I just wanted to share, that when I woke up this morning I felt horrible and my friends have planned a social gathering at my house, pizza and movie- or just gossip. God Love them. I had emailed them all and told them it was a rather bad day, more than usual as it feels like I am developing a cold and the vertigo is kicking in a bit- but we are still on at my request. I got my butt up and trying to sit and hydrate and still feel lousy, but I can't get the smile off my face knowing they are coming!! I can always lay down if need be and I will take the social interaction when I can get it. So positive thinking and having this event is helping me get through so far- we will see when 5 pm gets here-LOL. Oh well they have seen me at my worse. Hope you all have a good day today- for the days I don't get to see friends, finding this place has been a delight. Thank you:D

I agree that for me symptoms are very dift. but anxiety kicks in once my other symptoms are in full flare up. Medication has helped as well as relaxation tapes, anything to distract me!!

Charmin, what a great idea- if you are able. I was wondering, without you having to say exact price, are they expensive?? I will have to look into that, don't think I am ready yet though- just working on walking!

You just gave me goosebumps, what a wonderful man. HAPPY BIRTHDAY!!!!!!!

yup, I have this all the time and can't understand it, then other times will sweat with any little movement. Ariella thanks for your comment, interesting and makes sense.

Well I am hesitant to post this because my experience was very negative, but I know that I have read a lot of postings on Cymbalta board and other people love it. My experience was - I was given the lowest dose of 20 mg. due to medication sensitivities for nerve, muscle pain and I took it one day. I developed nausea within an hour or two, but was managing. When I went to lay down in bed for night, had a pressure headache. Next morning I woke up to use bathroom, as always, and got up slowly drank my water and suddenly had the most awful feeling, vision dimming out, sweating, body felt like it was going to collapse. I called my husband on our phone system to come downstairs to try and help me to the bathroom after sitting a minute-made it to the door and was gone for about 15 secs. Not for me. I called my physicians and they had me stop it. It was about 5 days until I was back to my usual cruddy self. Just keep in mind that I am extremely sensitive to these meds. Look up on internet, Cymbalta- there is a board they people post on. REMEMBER every one is dift and it may be worth a try for you. We are all dift. and on dift meds. Good luck!

Well it sure seems that we all relate to this topic and I did read former thread. I think some of the tips mentioned here were helpful as well. Guess the most important is communication with our partners. For those who don't have as supportive partners, I agree that counseling or education, sharing that other people are experiencing the same exact feelings may be helpful.

Hello and welcome. Good luck with your TTT and I hope you get some answers.

Jaime, I am wishing you some much cooler days- I am so amazed by your ability to make the day in 100 degree weather!!! Hope you have your fluids going constantly!! Take care

So glad that they are having such a wonderful time!!! My goodness- what a blessing for the two of them, your daughter will have such fantastic memories. All things considered, he is doing better than one would have thought. Hope their trip continues, if not they have done some wonderful things already!! Glad your also able to get some "you" time. Best wishes!

Hi Jacquie- yup tried that. Was in rehab for a couple months with vestibular specialist, some help-limited. I still try to do some of the exercises. I at least can move my head now, but the walking is still an ongoing issue. I did the specialists, etc. Seems like more than one thing going on in my body for sure- Hope you get another movie night soon.

I tried Meclizine with numerous other meds and passed out with most of them. I was hospitalized twice because things were so bad. Just extremely sensitive to meds at such low doses, that amaze the physicians. I haven't tried the stool, so I don't know if it would bother me or not. I was unsuccessful with my very and I mean very limited PT for balance. I felt worse for days, so they discharged me. I just keep trying. The vertigo itself is better than it was, but balance still off and varies.

dizzydame- thanks for the idea of the stool. I also have balance problems, which makes it difficult to carry things, but I am working on it. Some days a little better than others-

For the well being of this daughter, both parents need to be involved. I know this can be very difficult, but communication is essential. It would be helpful to speak with the daughter about her understandings regarding her illness as well. If you are not able to meet with physician together, which would be ideal -all hearing info at same time, could you phone conference with physician? It sounds like both have parental rights. I would hope that if mom wants best for daughter, she would want dad to hear the information directly. Daughter's illness should not be put in middle of other issues. Educate as much as you can. Good luck!!

Wishing you continued progress! You are entitled to a celebration dance, family may not get it, but we do.

I was surprised and thrilled to see your posting regarding intimacy. This really hit home for me as I was in one of my doctor's offices yesterday( a female one) in tears about this. I have many symptoms and many of them are nerve related. I was thrilled that she was amazingly understanding and she was very glad that I brought it up. She advised me that I should not be embarassed by it,as it is a quality of life issue. In my usual profession I would not have been embarassed by this, but boy did the tears flow yesterday. Basically there were no majic wands. We discussed that there are dift. ways to show intimacy and we do try our best. I have been sleeping downstairs in a bed in our living room for a year due to mobility issues and need to be close to bathroom, etc. My husband has been very supportive, but the reality is you know there must be frustration for them as there is for us. Long story short, my husband and I were discussing my apt. and I told him that I brought this topic up with physician and how emotional I was. I like many have lost my job, mobility, ability to get out when I want, not driving and you have all the added stress on your family. Intimacy with your partner is important, in whatever shape or form, on whatever level. I think he was shocked and suprised to know that I discussed it and that it was just as important to me. She did give me some pain patches and we are trying a return to another med, seems all trial and error. The apt. was great for my spirits as she was so understanding. She also stated that it was important in regards to my disability claim for documentation-not that I want my personal life documented in chart, but understand her point about that. So my husband and I had a good night last night, just sharing that. Thanks for your topic. There are many ways to show love and compassion. I am right there with Lauren's comments- we have a private joke about calling 911- but fortunately haven't had to yet. I will check out the link as well.

Just thinking of you and wondering if you have been in contact with husband and daughter-wondering how things are going on the trip?