Please help :(

I have Pots/dysautonomia along with Me/cfs. It took along time to diagnose the pots becuz noone knew about it. Id have tachycardia when i stood up from laying down and they told me it was a panic attack. My main symptom that helped diagnose me was/is heart pain. Its like my heart struggles to pump the blood that pools in my legs. So i am on midodrine 5 mgs 3 xs a day to help, plus i wear compression socks and tight leggings to help heart and becuz i still need to lay down thru out the day. 10 mgs 3xs a day is the actual dose but youre not supposed to lay down as it raises your blood pressure. But i NEED to lay down . So im constantly monitoring what my heart needs. More salt? More leg lifts to strengthen leg muscles? There's also floranef u can take which supposedly increases blood volume. I haven't tried it tho as i already hate having to take this medicine.

I am always in that constant dreamlike state myself which is why i definitely think its ME. My illness started with a bad virus and i never completely recovered. 28yrs later! Ugh. A cardiologist should be able to help u with Pots. And this diagnosis will definitely help you get disability if needed. No way can i work with this illness but i am a little reassured with this diagnosis. 20% of me still thinks that the postEBV migrates to different areas of my body and lands in my heart, causing that dreaded heart pain, but we will see what happens as i am doing everything now that im supposed to be doing to prevent it. I carry a bottle of frankincense essential oils also and just breath it in for healing relief. Love it. Plus i take Epsom salt baths once a week for the magnesium. Helps alot. And yes! Eat right! Minimize wheat, dairy and sugar. Best of luck to you!!

Hi!  I hve had CFS/ME since 1989 and I live in France, where wehave a NHS which doesn't believe the disease exists.  They're NOW doing research at the Institut Pasteur and in Neurology at the Salpitrière, but approx 99% of all doctors dismiss it as "one of those women's things" or as part of a neurosis.  Thanks, guys...

I do not have the words to describe the awfulness that I have suffered with this disease (I also have Emphysema, Auricular Fibrillation (many small and two enormous strokes) and "chronic depression" (diagnosed at the Salpitrière as manic-depression --wish I could be so lucky to have an "up" day.

All I can say to you today, is that you must ACCEPT that this is a physiological disease for which there is no test and no treatment.  THEN you have to start working on ways to maximize the very small time that you have actually "awake" (even if foggy):  I have between 6-8 hours per day, depending.  And practically no muscular force.

  My husband died recently andhe did EVERYTHING for me - now I'm completely lost and trying to deal with all sorts of problems by myself.

Do you have a partner?  Family?  Friends?  My only real friend left alive (the many others mostly dead of cancer) lives in Paris whereas I live in Brittany  - at least we're both in France.

Try to form a support group of family and friends around you if you can - I wish I had one but this site is only for UK people.

wishing and praying for the best for you,

constance

Hi Cath

im sorry you are feeling the way you do, the way so many of us are or have been left feeling for so long without being heard. Ihave ME and also  have Dysautonomia, I have the same symptoms you describe and often get episodes very similar to panic attacks indeed they did turn into panic attacks I dealt with them for so long with my GP telling me it was all anxiety.....and of course the lethargy was depression! (I actually have Bipolar Disorder so it was even easier for my GP to dismiss the whole thing as episodes of anxiety and depression) I ended up agoraphobic I had so many episodes outdoors I began to feel less and less safe to the point my fears blew into irrational thinking - I lost years of my life trapped indoors terrified.... I gave up too, I stopped fighting with Drs and just lived with these horrific symptoms and agrophobia. Eventually I saw a Consultant who my Gastroenterologist referred me to because he could see something was wrong. I was diagnosed after a tilt table test which showed that my autonomic nervous system isn’t working, I fainted after a few minutes upright on the table. I take a drug called Fludrocortisone which helps lift my blood pressure, I have to drink around 3 litres of water a day and still things aren’t good but much better - I’m soon starting Midodrine too and hope this will improve things more... The ME still pervades my life but these symptoms which can have some treatment are now being addressed. My p is still vague and idiotic about it though! Just wanted you to know you are not alone and if you want to ask anything or need any help just shout. I hope you feel better soon. All the very best to you 💟

i am 38 and have been having extreme fatigue for last few years, however over the last year this has become much worse. heart palpitations, very sensitive eyes and ears, feeling so poorly but nothing showing in my bloods i feel like going mad.

the latest thing is the dizziness that is on and off for no reason even when i am resting. i do have b12 deficiency and get injections every 3 months. getting a diagnosis is so difficult and i feel like i am having to fight back with the doctors to not just accept its anxiety. i believe anxiety is a symptom but not the cause! help!

Yes, i suffer with this for about 3 years now plus 100 other symptoms and im close to having a breakdown. 珞 hang on in there. there must be a solution for us