dancer65

I had started on a diet very similar to that three months agoand I started working with a herbalist a month ago who believes most of my issues come from my gut and adrenals, also CFS/ME badht it was interesting what you posted I have just had salvia tests which came back with canadia, strep infection Epstein barr and I was horrified when he said ascens parasites! All these things point to auto immunity and I have several diseases, I really feel for the first time I am addressing the causes rather than the symptoms. He has told me this is a long healing process although I should start to see results within a couple of months. I love cooking when I have the energy and yes this sort of diet takes a while to adjust too as you seem to spend ages checking every label in the supermarket! I am also gluten and sugar free.However once you get to know the products that are ok and find a good source of organic veg it actually gets less time consuming. I am lucky our local butcher has grass fed meat, more expensive but more tasty too!

So my dia BP has been in the 50-65 for a few days today it has dropped as low as 49 today, I am feeling really off! Trying not to sit down for too long but it doesn't seem to be helping. drunk loads of water and electrolytes Is there any way to get this up as I am sure that's why I feel so yuk

I just started treatment with a herbalist he did a saliva test and staph infection, parasites came back positive, I have sore throats on and off a lot. I have a number of auto immune problems already, I am on Florinef as well and I teach children so this term I have caught numerous viruses which I think may be down to my immune issues which are made worse by the Florinef. It too has helped with my BP and HR but not as much as the Dr hoped when I saw him last week. Hope you get some good advice at your appointment

Me too! I am forever making mistakes on the comp, not much better at communicating verbally either!

My husband is an angel in my eyes ! He reads the signs when I am not well and just takes over the chores and gives me a hug when I need it most! My son has moved away but visits regularly and calls all the time My parents were always supportive, my dad passed away some ten years ago I still miss him, my Mum is now 80 and needs minimal support but she is still my confidant and best friend. Without their constant reassurance that beauty is from within I don't believe I would have delt with my alopecia so well

Hi Libby I have terrible pains after exercise especially in my upper arms and thighs. I also experience fatigue during exercise, my muscles feel like lead and I feel nauseated. I don't just find this after exercise but housework too. I am a ballet teacher so these symptoms very challenging! I can demonstrate slow controlled movements but anything that requires jumping or exertion is impossible, thankfully I have some lovely older pupils who are helping me. After teaching I massage myself with a little oil and take a warm bath and then stretch, it doesn't take all the pain away but it does help enough that I can get to sleep.

Hi sorry to hear of your health problems I hope you get some answers at your appointments. Good luck!

I now avoid bending down and dropping my head! I have a table where I put my clothes basket as I hang the washing, I have also reorganised my kitchen with the help of my hubby

So sorry to hear of the loss of your beloved dog, they are wonderful at knowing when you are ill and staying by your side. big hugs

I use a small massage device called a nova sonic which breaks down the knots in the muscle. Its great as it doesn't leave the sore feeling that happens after massage. I warm the area first with hot water bottle for 10 mins . One of my best investments !

Sarah thank you for your welcome! I have only been her a short time but the info I have found has been invaluable. Katy once again thank you

Chaos thank you for posting these links they are really interesting to me.

Like many of you here I am trying to put the puzzle together concerning my health issues, I believe you have to be your own advocate when it comes to treatment and finding the cause. I am convinced my immune problems were triggered by antibiotics and adrenal problems but also hereditary I just wondered if anyone else here has alopecia ? I developed alopecia at the age of 12 ( now 50) which continued over a period of four months to loose all my hair everywhere, AU. It has been a rollercoaster journey but I am ok with the deal these days, at least I don't have to shave my legs Since starting Florinef my eyelashes are growing back as are some of my eyebrows ( but not where I want them!). Obviously the Florinef is helping the immune system in some way I just wondered if any one else here has noticed an improvement in alopecia whilst on steroids or if they understand why ? Thank you in advance

I use oranges, lemons, limes in a juicer and coconut or spring water, bit of salt. I make a batch for a day but it will keep for a couple in the fridge

Thank you for your encouraging words Maggie I know you understand the frustration, still haven't be able to do a full weeks work in 8 months, I am self employed so its a bit of a problem! Spoke with my Dr yesterday he was concerned about HR so I see him Monday, nice to know he is taking an interest

Hi Kate On the whole Florinef has helped improve most of my symptons although my HR has remained high and continues to be my most difficult problem. Sadly I don't have HR numbers to compare with from before I started Florinef, sorry I cant be of more help.

I noticed a small improvement in the first week but it took me about a month before I started seeing a significant difference. My brain fog and memory improved as well as the dizziness. I too was very thirsty and I found drinking electrolytes helped enormously with the tremors and the constant leg pain (I make my own electrolyte drinks and add salt and water as I avoid sugar)

I too would like to say thank you to all those that frequent here, this forum has not only been very resourceful and has put my mind at ease I am not just imagining things! Also thank you to all the Dinet admin

I am new to this diagnosis although had milder symptons for a long time before it really hit me I. I started Florinef six months ago and it has helped with my blood volume, I still get dizzy but at least it is much better than it was and I have stopped falling over, that's a bonus! I also notice I am not visiting the bathroom every 15 minutes so I presume it is doing its job on helping me to retain fluid. I hope it all works out for you

Thanks to all of you for replying, it is very comforting to hear others experiences! Walking up the stairs seems to get my heart racing the most at the moment. Maggie thanks for your input I will give that a try next time I go swimming, back to feeling really off this week, even gentle stretching and exercise iare leaving my arms and legs with severe pains which are waking me in the night.....sigh. At least my face muscles don't ache so I keep trying to smile

Hi everyone welcome, I am new here too, learning a lot!

Katy that interesting, I have found out the hard way long naps make me feel worse, also even though I feel exhausted it also makes trying to go to sleep at night impossible. I found for me sitting down for an evening leaves me with terrible arm, leg and coat hanger pain, just getting up every half hour and walking about seems to help but it is a big effort when I feel so fatigued.

Hope for me means acceptance, the ability to find inner peace with what and who I am. It helps me to stay positive despite the challenges life throws at me and finding the best solution to still be able to enjoy and embrace friends, family and the good things in my life. It helps me to take each day as a new challenge

I am hoping that someone can share their experience on exercising and heart rate. A brief back ground, I crashed last August and was not able to do even menial tasks because of the tychardia and dizziness along with all the other POTS symptons. It has been a slow progress but I am slowly improving in some areas, I have been stretching, doing yoga and floor strengthening exercises so last week I decided to start swimming. I am not a good swimmer so I gently pootled up the pool about 20 metres, my heart rate was at 168 and my100 max should be 170. I did continue to swim with lots of resting in between lengths and was pleased to swim 18 lengths in all, although it took me forever and a lot of determimation! During this time my HR stayed pretty much the same. So my question is, is this normal in POTS patients to reach max HR even doing gentle exercise and by pushing through do you see an improvement. I would like to add I am in the UK, I had poor man TTT for my diagnoises , my Dr had ordered a TTT to confirm, but waiting list here is about 9 months, I feel pretty much alone trying to research how to help myself,this forum has been so helpful Sorry for the long post , thank you in advance

Thank you for posting this!