Sunflower & Jo,
It might be worth looking into about the dysautonomia. I have been trying to research it some and I have found that there is a link between dysautonomia and fibro. Dysautonomia is, very basically, when your autonomic nervous system, which controls the stuff you don’t think about like breathing, heart rate, blood pressure, doesn’t work correctly. It is hard to find a whole lot of info on it but try this website:
http://www.dinet.org/. Gentle hugs. MB
Another link on an article about fibro and dysautonomia. Pretty interesting reading.
Aww thank you. I have reeached the web a bit and see the link to fibro. Does it include seizures as these started at the same time? I have seen it mentioned in one place but not another. Otherwise I'm a triple blessed. lol
Hugs
Jo
I had two seizure back when I was first diagnosed and was told they could be related as no other cause was found for the seizures. Another question for the specialist. I just wish I didn’t have to wait two more months to see him.
Are you near any of the Olympic sites? I bet it is madness over there.
Hugs
Mary Beth
I am with you Teresa, all the way. You've got it!
Thanks for the info again; maybe they are related then.
I'm about 150 miles away from London, on the south west coast. A load of the staff at the airports are/were on strikes and I bet its chaos in London.
I know I am new too, and just out of curiosity can some one tell me how many of US are there on this site?
Love Silent
I think SK said it's around 800. That's a lot of fibro people!
you r not alone. i have the same problems. it can b very tough when u dont have support from your family.
i can also b very tough when u r up all night and end up sleepimg all day. i really hope that somehow u can get back to where u r sleeping during the night. i know that being alone all night can b very hard. i hope you can get the support the you need from your family. i am confindent you will find support on this site. dont give up on your family it can take some time to convince them.
If you want to know how many members there are on this fibro site, just go to the Main Page and on the left side scroll down till you see pictures of members. Under the pictures are the words View All. Click on View All and a new page will open and you will see some featured members at the top and under that will be pictures of the most recent members. Just above these pictures you will see the number of members.
Yes I understand. I have been unsuccessful with meds in general. I take herbs and minerals daily but only have benadryl when necessary. Sometimes that means I need none for weeks and then I may need it twice in one day or a few days in a row. But it's such a low dose that I have few side effects from it. I wish I had other suggestions but nerve calming herbs, minerals and mast cell stabilizers are the only things that I have found helpful. Vitamin C may be helpful too and quercetin but they don't have quick noticable results right away. I would like to try gastrocrom (cromolyn sodium). my doctor said maybe we'll try that next. It's expensive so they aren't quick to prescribe it. I thought about trying diamox but I don't do well with sulfa drugs and I don't think it would be right for me anyway.
I understand - if the side effects are worse than the original problem you really aren't getting anywhere huh! do they stop the dysautonomia or POTS though? That would let you know if it is a histamine based problem or not - used as kind of a diagnostic tool. If it doesn't help at all, then that isn't your cause of pain and problems.
Do nerve calmers (like chamomile and passion flower) help you at all? They make a big difference for me too - at least the two I mentioned earlier do.
Don’t think themes help the dysautonomia and the meds I take for that specifically don’t seem to help. I took (what I now know) was a hig dose (4 mg a night for sleep) of klonopin for many years until a doc and a pharmacist told me I was on way too much ( the original doc who prescribed it said it was a low dose) and started tapering me off. Well, six months later I was off it but it seemed that I started having much worse symptoms with the fibro and dysautonomia when I got off it. All my docs said there was no relationship between being on, or off, the klonopin and the fibro and dysautonomia but that seems like a big coincidence. Another question for the specialist in September.
The peppermint oil really worked well when massaged into my knotted areas. I bought it on Amazon. It lasted for a long while, and I was able to fall asleep. I am a believer at least for this week. Have a good Sunday.
Peppermint oil even sounds yummy and soothing! Mmmmm...
The smell opened my head also. It was nice.
Thank you so much
Thanks Rachel
Ok, I will try that
Yours Truly
I finally realize that I’m NOT alone in this & I appteciate all the kind words & support from you guys!!.. Yesbit is very tough to bevup at night alone then sleeping during the day makes people I’m lazy which I HATE!! but now I’m getting a little better with not caring what others think I know Im sick & thats all that matters!! Thank you for your kind comments they are greatly appreciated!!
Omg!? Really?? You rub it on you knotted areas?? I’m def going to have to try this,! Thais for the info! 