dancer65

Hi angie i teach an older 50 plus exercise class so the aerobic part is pretty easy and within minutes of starting the warm up I always feel hot nauseated then dizzy on a couple of occasions it has gone into full blown attack. embarrassing but my class are really great. My Dr thinks it's due to adrenalin rush, I found just exercising with in a very low range of effort keeps it from being full blown, sometimes I just have to stop and not demonfstrate DRs have not had any suggestions for me except they all insist I should not give up my job completely so I just keep pushing on doing the best I can for that day and have reduced my teaching hours i teach ballet most week days and I experience pain and fatigue in my muscles within the hour of finishing , an Epsom bath with massage and use of an infra red lamp helps relieve it a little bit i recently have started considering an imbalance of minerals or amino acids so I am trying to add more into my diet plus a few supplements , to early to say if this is going to help start slow, listen to your body, determination can go a long way ? I hope you can figure this out and good luck to you !

Hi I Agree with the others this is not all your head! I like many others here have been labelled neurotic etc in the past. I too think you should seek a second opinion and have a TTT. I have fought really hard to get referered to a POTS clinic in London after my TTT was positive, I recently attended and it really helped mentally to be acknowledged and I am hoping the new meds will make a difference to my daily function . I too have Cfs ME and it is common to have POTS as well I know it is exhausting to keep pushing to get a diagnosis but keep going as finding the right treatment can help and however small or slow the improvement is it is worth it in the end. Wishing you all the best

Bumping this thread up as I wanted to say I do have problems every evening and night with my legs . I always sit with my legs elevated at home to stop the pooling however they become unbearably uncomfortable, I need to move them , often I have to get up, that's helps for that time but sitting down again starts it all off . This feeling surges through out my whole body on some nights . bed time brings cramp, pins and needles and a feeling of been uncomfortable , I have mentioned this to Drs but usually get the um answer with no constructive explanation. I started magnesium some time ago but it's not helped yet so I was looking for suggestions and ideas when I found this thread

Pleased to hear all this got sorted and it has helped already look after yourself ?

Hi Tara thank you for your reply. No they don't offer fluids where I live the UK the way I was feeling last week I wish they did ! I spoke to syncope unit they have increased my midrodine as my low bp was causing an increase in symptons and they weren't happy with that. Day two of increased dose defiantly feeling more alert and less pre syncope episodes hope this improvement will continue ! The nurse was really helpful, asked me loads of questions of what was going on and gave me some very constructive advise. Going to make the most of pottering around at home with loads of rest breaks

Hoping everything goes well tomorrow and you get better really soon good luck

My fatigue and cognitive issues seem to go hand in hand so I can have some quite good times and then I completely malfunction! Children are very sensitive especially with their parents they instinctively know when you are not well . In my opinion cuddling up together on the couch maybe talking, reading a book or just having a love is something he will never forget and one of the best quality times with your child katy really sorry you are struggling with the migraines, hope your appointments go well and you feel better soon

Thanks to both of you for your replies, been a difficult week not be able to leave the house however seen a small improvement today and was able to do a few chores . I agree think my body didn't like bring off florinef so quickly seems to have found a better equalibrium today all week been taking on more salt and although I always drank about 2 litres I am at about 3, the increase in salt has made that easier I did e mail the syncope unit but they are on holiday until tomorrow hopefully they will reply

Welcome everyone ! i agree with every thing bigskyfam has said ! A wonderful community of support information and hope

Wishing you the best of luck for Tuesday and your recovery is fast !

I believe yeast infection can be affected by the corticosteroids ( I think your daughter is on florinef ?)and by rising levels of estogen that's why women can be more prone to infection before a period . Just throwing this out there but many foods have estogen in the like milk ( I was advised to go dairy free after a change was seen in ny mamo gramme ) i am sure you done all this but no underwear , avoiding soaps and douching as water makes the yeast increase. There are natural remidies such as using garlic cloves vinegar yogart I can't remember the others but I know they are on Google , not sure if they would help though as this seems to have got a hold

Thinking of you sending you all the best vibes I can ! Hope they can sort this out soon for you can't imagine what your going through hugs ?

Hi I have vassodepressor syncope Cfs and POTS and struggle with low bp. I do all the usual recommendations mentioned above and was on florinef for 18 months, it took a while to get the dose right to get bp up but didn't alliviate any other symptoms so I just been changed to midodrine on recommendation by my cardiologist, too soon to tell how its working out ! I have tingling, pain in my arms and hands. For the past ten years I have noticed a slow decline in my ability to do intricate things with my hands for any length of time Some days I can't take my arms above my shoulders even if moving through a range of movement because of the pain it causes, others days it's ok. I have been reading a lot of research about the mitrochondia , ATP not working properly and that causes a build of Latic acid, that seems to fit my symptons as I get the pain through my legs as well, the end result is that heavy feeling with the fatigue I can't move another step . Currently looking into adding more red meat into my diet for amino acids with other supplements, I feel anything is worth a try ! Fatigue is the sympton that bothers me most. It is really hard waiting for appointments when you feel so ill , I hope in the meantime you find some relief in your symptons.

Hi Sarah um not thought about the salt you may have a point there I have lost 5 kilo this week which I presume was fluid retention from the florinef I am going to the bathroom every half hour! I do drink salt water every morning and add loads of Salt to my food so I will try to add some more see if it helps thanks . tonight the sweats and that surging feeling throughout my body is unrelenting will hang in there as best as I can ? excuse any bad grammar really brain fogged and difficulty speaking ! Fortunately I am on the last week of Easter break so got another week to get my brain functioning before back teaching

So was advised to watch supine BP, I was suprised to see it sitting about 85/48 -95/52 hr 59 ish I am on 1 x2.5 Three times a day with the possibility of it being increased in the near future. During the day BP seems to be fluctuating when I have taken about 3times a day, but not that low although I almost fainted in the supermarket ( on the floor not able to speak or see you know the drill ! ) however this is not inusual for me but was hoping midodrine would help alleviate this problem hate these scenes !! I have only been on midodrine for a week so I know it's early days , just wondered if others experienced low supine BP and not really sure if I should let them know this now or in the two weeks I was advised to update them , feeling pretty yuk and sooo tired today

In the UK we have charities which help give advice on products and some even rent aids out don't know if you have that in the US but just a thought.

A bit late but hi ?

I always Wake during the night I always have water when I go to the bathroom! In the morning I get up earlier so I can sit for half an hour before I have to get going i always have a electrolyte drink which I prepare the night before using a juicer and then an hour later I have a smoothie , don't tolerate food first thing in the morning it makes me sooooo tired!

I have seen walking aids with arm rests for people with arthritis would that be any help ? Try googling Provo or troja forearm rollators they are made so you don't have to stoop

Thank you everyone for your kind words Sara

Hi like MG saidit is hard it is a long time since I was dating , now middle aged and married. Just my opinion but I feel trust, equality forgiveness and friendship are important . To trust that you will be there for each other whatever life throws at you and it can throw some nasty stuff ! Equality that one party does not feel superior/ inferior for any reason to forgive gracefully and ask for forgiveness friendship because the initial interst in sex eventually where's off ! Having fun together for us can be cuddled up on the couch watching a film, these days we seem to do that a lot! I really hope that things get better for you

So finally I got to see POTS cardiologist it has been a long hard struggle but I am so pleased I pushed to see him. He was interested in my AU ( total hair loss ) and my struggles with the progression of more auto immune diseases, he also thought the CFS I have had since I had ESB at 21 is the main reason. We also discussed the possibility of JHS although I never dislocate joints I have always been naturally flexible and I have tendonosis bursitis thin skin constant joint pain and muscle pain. Although I struggle daily to teach ballet and I have cut down my working hours he feels this is what has kept me on my feet, literally, due to the strength in my lower body. So the good news is he is writing to my GP to get a team of consultants to help me manage the symptons and look into other problems that I have.. I just hope that my GP will agree ! Fianally after 30 years I feel someone actually listened and took on board what I was saying. He also has two syncope nurses who you can contact for advise . I spoke to them about a number of issues that day they were really helpful He has taken me off florinef and started me on midrdine I have to speak to the nurses in two weeks to see how I am doing so I don't have to travel to London . It wasn't a long appointment , NHS so I am pleased I made comprehensive lists (more for my forgetfulness lol) which he asked to keep and I did mamage after 9 months to get graphs etc from my TTT last summer so apparently I have vasodepressor reflex syncope and POTS. Even better my husband and I spent a few leisurely days in London and we had some lovely quality time together I did miss having a glass of wine though! happy Easter to all of you and thank you to all of you who said keep going until you find the right DR !

Welcome everyone, this community has saved my sanity and I have had some excellent advice, wishing you all better days

Thank you Katy I will look into ordering it, reading the theory then a particle sounds perfect for me

I have just starting meditating and I am beginning to see the benefits (I think it's the meditation as that's the only thing that's new) I really have a hard time clearing my mind as I am a worrier. I use to have nightmares and would shout and scream according to my husband these have stopped and this week I have managed to fall asleep within an hour and have a full nights sleep. i know many of you meditate I can't afford a course as I am only working part time would love any recommendation of a book etc that you have found to be beneficial. I would partially like to work on dealing with stress hope you all have a good weekend many thanks