dancer65

Yes I have this too. My muscles are weak and feel like they have no energy at all, mind is willing, body says no!

I always have a shower or bath before bed, it is the one thing that relieves the muscle pain and helps me relax.

Hi and welcome !

That is great news for you all! I have been taking Florinef since December and it has really has helped me, At first I experienced headaches soon after taking it and lower back pain in the night for a number months, however I stuck with it and saw improvements in the first few weeks. When I started it I was struggling to even stand up but slowly I began to feel less unsteady, dizzy and generally my functions improved, speech, brain fog, nausea, shaking heat intolerance.I still get all these things daily but they are less severe. It has helped with the fluid loss I spend less time going to the bathroom! My nightmares have disappeared as well. I was on 0.2 mg but since I my TTT I crashed so Dr put my dose up for a week to try to boost my energy. It has taken 6 days to see an improvement but yesterday was the first day I didnt have to go and lie down in the afternoon. I have been splitting my dose that prevents the banging headache and I find drinking two glasses of water straight down when I take a tablet helps too. I always eat when I take them to help with the stomach irritation. I have experience really bad bruising and my skin has deteriorated, I get excema and psoriasis and that has flared up. My Dr is monitoring my bloods each month. I have constant muscle pain and the down side is you cant take ibroprofen on Florinef . In my experience it takes time for your body to adjust and it is worth giving it a chance if the side effects are not too bad, for me it was a slow gradual improvement. I know it doesn't help everyone but I really hope that it helps your daughters. best of luck !

I am a ballet teacher but to a certain degree I am sure our challenges cross over. I teach from 3 year olds to adults. Although I love my job there are times I when I feel it is all getting too much for me I often feel older than my 50 years after an evening session! I try to make sure before I return for term I am as organised as I can be. All my lessons plans and all that relates to our show is organised before I start. I have lists for each week so I don't forget anything During term time I find energy for home life very limited so I plan menus and prepare frozen meals, clean my house thoroughly before term starts so during term I can rest a bit more on a sunday before the week starts. As for teaching I find a few minutes after taking the register to have a chat with the kids to tell me all their exciting news stops some of the chattering. I no longer shout over them to be quiet but raise my hand say thank you then I sit down until they are quiet! It took a few weeks and a lot of waiting to work but they soon responded, I find trying to shout over them totally exhausting! I wish you both luck in the new term

uncommon I know but I am good after first hour of being up in the morning till about 11 and then it all kicks off ! By 2 ish I need to lie down for an hour if I try to push through them I end up feeling dreadful for a few days. I am slowly getting to grips with a new routine around my work . Summer is always better for me as long as it is not too hot and humid. Sorry to hear not been so good for you this year

Thank you! I am sorry to read your daughter crashed I was warned it could make me feel ill for a few days so wasn't expecting it to be this long. Hope you find some thing that helps your daughter soon, wish you luck x

I agree with Katy it really is about finding out what works for you and what you are sensitive too. Sitting to prep food works for me on bad days I actually follow an anti inflammatory diet because of my immune issues. I make veggie juice and smoothies with berries and almond milk as extra nutrition as part of my daily grazing. I also make gluten sugar free snacks as I am gluten intolerant. I try to buy good quality produce. Lots of veg, fish and occasionally red meat and fermented produce I make a lot of salads and stir frys quick and easy. My favourite at the moment is buttersquash chips but hubby cuts that up as he doesn't trust me with the knife! I love cooking so does my husband so we work together, its a nice time to catch up on the days events and he takes over if I cant finish!

Yes I do. Sometimes it is just sharp stabbing pains other times it is accompanied with a sweating episode and pains in my arms. It can be very scary. I really hope your daughter feels better soon

I had a pro biotic made up by my herbalist I no longer have IBS, always had stomach ache, bloating, etc after eating for as long as I can remember I have also not had any really bad allergies this year so far, normally have reaction to pollen animals and dust mites. I usually get a lovely swollen lump under my eye, constant runny nose and asthma. I haven't use my inhalers in the last six months. I do get migraines but not all the time, I will have one after another then they disappear for a few months. I continue to eat fermented products daily.

Thanks you for your replies and well wishes it really does help! Yes Sarah I had blood tests for E&U last monday also blood count as I am bruising very easily on the florinef. I see my GP next week but wont be seeing the consultant again who did my test.

Thanks Sarah, trying to stay positive but I am really over emotional since my test, lol!

Hi I am just wondering how long it took you to recover after TTT? I had mine 21st July and two days later I had a big decline in myself, I still cant return to work I spending half a day in bed. I am back on florinef which was helping before the test and doing all the usual recommended things but I am not seeing any improvement. Hoping someone can tell me this is normal reaction and there is light at the end of the tunnel Many thanks

I take 0.2 florinef although it has helped with other things the brain fog is still a big issue!

I have exact same problem, happens both day and night. In the day it usually when I am moving around, I find stopping and sitting quietly until it passes makes it pass quicker! I drive my hubby mad at night covers off and on haven't found anything that helps. I find I am worse when I am really tired. If the weather is hot and humid (doesn't happen that often in UK!) I find running my wrists under cool water helps too

Cant help but just hoping you feel better soon

I have not long being diagnosed but both myself and consultant believe I have had it since I was about 12. All through my childhood I was sick especially with strep and caught every thing that was going around. Recovery time was always slow, At 12 my immune system went totally out of whack and I started having boils, ulcers, stys excema and asthma attacks, dizzy spells, cramp, shaking, fainting, and exhaution then I started loosing my hair, within four months I had beome AU total hair loss. I fell asleep in lessons at school that wasn't very popular! Because of the alopecia I was told I was neurotic, depressed, panic attacks and I am afraid that stuck.! I never believed this diagnosis but there have been many times when I have doubted my sanity! Through out my life, I am 50, I have had a few spells of more reasonable health usually better in the summer months. Glandular fever at 18 took a severe toll on me as have my gynea problems, I eventually won the fight for a hysterectomy at 46. I have been at my worse since then when have more days and afternoons in bed than at work. Again I was told I was depressed ! A virus last year left me fainting and finally when I fell down the stairs a different Dr saw me and actually listened! He suspected POTS but ruled out addisons first. I was put on waiting list for TTT and had that last week.

Hi and welcome

Hi I am a ballet teacher too so I totally empathise with you. I have learnt to teach in a very different way so I no longer jump around, If I have to demonstrate a new step to the kids I use the barre for support and only do a couple, at least this stops the heart palpations getting out of control. I am very fortunate that some of my higher grade pupils help with my beginners classes. I find one of the most tiring things is talking over the kids chatter and music! I have low BP and high HR Florinef has helped me to be more active in the last couple of months. I drink tons of water and make my own electrolyte drinks which I sip through out classes. I always rest for at least an hour before teaching and warm up really well, I find this does help a bit, but I always feel like I have flu the next day.

Hi everyone Did anyone else feel really emotional a few days after their test? I have been really tearful the last three days amongst the usual brain fog, really blurry vision dizzy etc. I don't seem to be in control of these episodes of emotion and I also get palpatations when the tears start. Thank you

I get aching at the occipital bones, just by adding pressure with my fingers helps relieve it a bit. I think mine is muscular though maybe not the same as what you are experiencing Hope it gets better soon

Hi I agree its easy to feel overwhelmed especially as a wife and mother! I think it is about accepting how you feel each day may be different. As a very active person I found it hard not to get frustrated then upset at the lack of things I could achieve, I realised reacting in that way was actually making me worse. Once I accepted the situation and stopped beating myself up about it, I started to learn how to cope. It took months before I could manage menial tasks, slowly I have been improving and I now back to full time work. Here are just a few simple things that helped me with some things we did to help me with basic tasks, often I cant finish a job but I am more accepting about that these days. Important tasks are done at my best hours of the day,I have a must do list otherwise I forget My husband rearranged frequently used items in my kitchen so I didn't have to bend Resting places placed around the home for if I feel dizzy He put a table by the washing line and lowered the line as hanging washing gave me pains in my arms I have a steam press which means I can sit to do this (I tried to iron sat down but cant) I run the fan to cool me down as I get overheated! so I only do a little at a time As I have returned to work I have rest periods throughout the day, I don't eat big meals but graze which I have done for years Accepting that I have to delegate and in actual fact hubby is very good at house work! Never say no to an offer of help from family or friends, those who offer help really do care, there are precious Stay positive Learn to love yourself again! I hope these don't sound like silly suggestions but they helped me to feel useful again and gradually build up stamina. Please excuse any grammer or spelling mistakes feeling a bit off today after TTT .

Sarah thanks for posting this, it is of great interest me as I suffer with migraines frequently

Welcome everyone!

My consultant was a lovely, a true English gentleman! Every step of the test was explained with lots of questions. My appointment lasted 2 and half hours, he is convinced my immune issues are linked. There were constant fluctuations in BP, and the lowest my Blood pressure dropped was systolic 22, diastolic 15, HR increased 60bpm at this point I answering his questions how I felt then the fainting processed started then I was gone! He concluded from my background and todays data I have had probably had this for a very long time and said he believes I have learnt to cope with these episodes well as he said he had never seen someones BP go so long so low without fainting. Tonight I feel very calm and relieved, it has taken away the frustration of years of fighting for a medical person to listen to me. I feel now this diagnosis has been confirmed I can look positively at my future by me taking control of the POTS, not it controlling me, have spent hours questioning my sanity. For those struggling for a diagnosis please never give up your fight to find out what is wrong. Best wishes to all!