dancer65

Nice link thank you.

I find putting ice or cold water over the insides of my wrists cools me down when I am over heated, I also use an umbrella. Have a lovely day!

thank you

Hi everyone Finally I have got my TTT on Tuesday today will be by first day without my Florinef, yikes! I am getting very anxious that I will not react on the day and will continue not to know what is going on with me as although I still have all the symptons they are less severe compared to when my GP diagnoised me by Poor mans TTT last year. Silly I know as what will be will be! Anyhow I am going to make a list of questions I think I should ask. the consultant and any thoughts would be greatly appreciated. I have spent a long time on here reading as much as I can such a wonderful source of information so a thank you to all who put in so much time to share. Wishing all of you the best

Hi everyone and welcome!

I find a bowl of hot water with vic in and inhale with a towel over my head helps. Also washing the sinus out. I use a syringe with cooled boiled water take it through your nose and let it go down your throat and spit it out, it is pretty disgusting to do but I had to do this daily when I had my nose reconstruction and was advise to this when I have sinusitis, I find it releases that sinus pressure. Hope you feel better soon

thanks for posting Katie, very interesting!

So pleased you are seeing positive signs of improvement, wonderful news!

Hi Sarah Thank you for your reply I am still waiting to see a consultant, the waiting list here in UK is about 9 months I have been informed I wont get to see anyone until , at the earliest August. Because my Dr has diagnoised me with Poor mans tilt table test, my HR increased and BP dropped to the recommended POTS numbers on each visit. He is only willing to give me Florinef at present, which I totally understand he cant prescribe drugs without understanding my issues, however that really only helped me to get out off the sofa! I should think by the time I get a proper TTT I wont reach the criteria anymore! My herbalist is trying to tackle my CFS and auto immune problems, One of the reasons I like him is he wants me to stay on the Florinef for adrenal support, I know I cant function at all without this, as on occasion when I have forgotton it (brain fog!) I have paid heavily. This week I have seen a huge improvement in my skin my excema and very dry skin has cleared up. also I am waking up feeling like I have had a good nights sleep as the nightmares have disappeared this last few weeks. I am due to see my Dr in two weeks, I have also been dropped from the dermatologist for my Alopecia as I am told I am a " lost cause" that annoyed me as recent research has progressed for the causes of this disease. It is the frustration of both waiting and feeling a lack of support that has led me down the path of seeking help elsewhere so far I am glad I did! My hubby was very skeptical about alternative medicine, even he cant believe the improvements in me.

Katy I cant offer any advice but sorry to hear this has happened and wish you the best of luck in finding the right treatment for your circumstances.

At my worst I had pain in my arms, legs and head I couldn't seem to lift any part of my body at this time as it felt so heavy, I also experience severe chest pain, I am pleased to say this has subsided to just aching muscles in recent months. I also get very red burning palms which itch, it also affects the crown of my head which also feels very bruised to even the lightest touch, although that has been like that since I had alopecia I think this may be inflammation

Ginsing I quit 6 weeks ago with the help of e cigarettes, it hasnt been easy but I felt in the right frame of mind, unlike other times where I have I have tried and failed. I am now trying to reduce the strength of the e cigarette. Personally I wouldn't recommend taking up smoking, besides all the chemicals in them that are so bad for health if you get addicted it is a nightmare to give up

Blurry vision is one of my worst symptons which I struggle with daily, I find using the comp can aggreviate it considerably. It also is worse when I am tired. If I look at the sun or bright lights I can actually loose my vision for a few hours, the first time this happened about 10 years ago was pretty scary and I was sent to the eye hospital, the specialist told me this can be eye migraine.I now am very careful when out and about!

Hi and welcome!

Thank you so much ladies for your kind words. and support. I sincerely hope that everyone gets to the bottom of their problems, it is exhausting at times especially when you feel you are fighting the medical profession but there is always someone somewhere interested in your case, it may just take a long time to find them!

I have been working with a herbalist now for a few months and following a strict diet. It has been a bit of a roller coaster with lots of days spent in bed feeling dreadful, but this week I have seen a vast improvement in my BP, HR, brain fog and although I still feel very tired it is not that accompanied by that desperate feeling! I have actually managed 4 full days work in a row, that the first time in 9 months. I am still struggling with blurry vision, although all my floaters have disappeared, headaches are still a problem as is the exercise intolerance. This time of year normally sees my allergies at their worst and I always get a huge swelling under my left eye that looks like an egg, so far not even itchy eyes or a runny nose. What has shocked me the most is the amount of parasites I have got rid of in the last ten days it has been gross! Apparently they are quite common with auto immune issues, the reason I have POTS I am sure. I am really hopeful that I have actually found someone to work with, although I understand this is going to be a long haul I feel positive for the first time since my problems started with auto immune issues 37 years ago, we should never give up hope or stop searching for answers. I want to thank everyone here for sharing their experiences and knowledge it helped me understand what was happening to me and research ways to self help Best wishes to you all

Sending warm wishes your way, hope you get to the bottom of the pronlem

Congratulations and good luck

I believe swimming has a compression effect on the body, cant remember where I read that though!

Yes I find straight after exercise I struggle to have a conversation as I cant find the right words, also my vision seems to get very blurry. However swimming doesn't seem to affect me the same

Hi everyone welcome!

I only experience back pain during the early hours of every morning, but once I am up and about it disappears, I do wonder if it related to my kidney or adrenals.

Thanks for taking the time to reply it is very much appreciated, I am sorry to hear your hypotension has caused you so many problems I hope the droxidopa helps you I have only just got a BP monitor and have started a dairy to try work out what affects me. I doubt very much that I would get IV saline here. I do take salt water as it helps the arm and leg pains so I will try increases it and see if that helps. Thanks

I will do! I will be happy if I can just get things under control. I just wanted to add I have not just looked at my diet but my whole lifestyle, What I now believe to be the triggers to my auto immune problems and I am addressing these as well. btw I had put on weight with the florinef and this last couple of weeks I have dropped 5 pounds and my clothes fit better again! I have IBS and it took a few weeks to settle down but I haven't had constipation, bloating, cramp the last month Any one who is thinking of doing this I would just advice you to find recipes to make yourself snacks/treats, so that when a craving appears you don't grab something your not allowed! I did a kitchen cleanse so there was no temptation! This is not the first time I have tried diet to solve my issues. I did a very similar diet two years after loosing all my hair to alopecia. During this two years I had no sign of regrowth and no conventional treatments worked so I turned to holistic remedies in desperation. The diet did produce results I have a good amount of regrowth, but when I returned to school after the summer holidays it all fell out. In hind sight I believe my lifestyle at school, I was training to be a classical dancer so the mental and physical demands were huge. My asthma, excema and allergies did improved on this diet.This was 38 years ago so there is so much more info available now, At the time I just decided to wear wigs and get on with my life and to stop obsessing trying to cure myself! I hope it is ok to post my experience,

Thanks everyone for the advice, I think I will try the compression stockings when I feel up to going out Katy I am on Florinef 0.2 at the moment, saw my GP last week and he wasn't very happy with my BP but cant prescribe anything else until I see the consultant. I rang the hospital today to find out when that was as I have been on waiting list for 4 months already, not going to get to see her until August at the earliest, all very frustrating. I am in UK so we don't have the choice which hospital we go to. Sorry to vent just feeling very deflated today!