dancer65

Psoriasis ? Often shows up on joints but not always I get in on my scalp as well . 

This sounds interesting how much do you plan on adding to your drink ? I would love to know if it helps please give us an update . 

She is lovely ! So pleased she is helping you . I no longer have dogs I do miss them, so loyal and always there for you .

Hi 

Can't help you with the medication as I don't take verapamil . I do however have IBS and had recent flare up constipation gas and pain, I found taking all insoluble fibre out of my diet really helpful after finding that lettuce was causing most of the issues, never bothered me before , just as you think you have got this figured out thing change so frustrating ! 

Hope others can help you more and you fell better soon 

Hi Emily 

Like M@T said there is POTS uk also STARS which I am a member of, they were very supportive to me when I was being diagnosed, they have a help line . 

I am actually going to Dr Gupta seminar in York at the end of April, he posted yesterday asking those who were going what they wanted him  to talk about , many requests regarding POTS so I am looking forward to it .

Hi 

Sorry to hear your daughter is having more problems , you just don't seem to get a break I don't take beta blockers just wanted to send my best wishes x

So hard not to overdo things as our tolerance varies daily however I am getting better at pacing myself than I use to be and on the whole it helps . I have a strict regime after lunch for rest meditation and breathing exercises  for an hour and half if I don't do it then I am too tired in the evening. Learning on a good  day to not get too enthusiastic with chores but also to do something I enjoy as well its good for the  soul !

Hope you all feel better soon !

I have CFS I get swollen glands in my neck lower abdominal and underarms as well as sore throat and low body temperature . Can't lift my arms above shoulder height for pins and needles and if I persist I faint . A general feeling of no energy avaiable in my limbs .High low BP and HR. Cold sweats migraines and bad sleep to name a few ! Sometimes it's hard to know what's POTS VVS or CFS !

No problem they have a Facebook page as well maybe check their e mail address on there . Hope you get it sorted !

Hi

I have seen people posting about them on pheonix rising ME CFS forum maybe you could ask there , just a thought 

Yes I have joint and muscle pain on a daily basis the severity varies each day though. When my POTS was at its worst I had burning pain in my feet and hands they would turn bright red and itch it then progressed to my shins , forearms and deltoid area. Since I started midrodine the burning pain has significantly reduced whether it was related to my low BP or not I really can't say.

I hope you can find a treatment that helps 

Dinet facebook have just posted a link to videos about badder problems may be interesting to you .

Hi everyone welcome 

I run water over my wrists and cold gel pack on my neck then drink a glass  of cold water when I get hot as it usually sets off an episode if I don't , 

I had full hysterectomy and was on hrt which did help with hot flushes a bit ,however had to stop due to breast  tissue changes as I am estrogen dominant 

Yes I have joint pain all the time  also muscle pain  not so severe in the summer months but still there , one of those symptoms when I complain about it that is ignored by Dr's .

Tried all sorts of remedies , soaking in Epsom salts and using essential oils gives a little relief but my nova sonic machine helps the most for me just another time and energy consuming self help thing to add to the daily list ! 

Hi and welcome everyone !

Sorry to hear through tumour hasn't shrunk  wishing you good luck that all turns out the best it can x

A number of years ago I watched a TV dovumentary on Dystonia. A woman on there had terrible muscle spasms all over her body  but when she picked up the violin and played they stopped it was quite astonishing . If I remember rightly they mentioned concentration helps the tremors, sorry I can't remember exactly the explanation to this response 

I hope you can make the connection so you can find some sort of treatment 

I too have to take it really easy after a flare . I find resting for and hour then getting up for 15 min's and doing something works for me  ,I then increase  the time up from there  . I will also do gentle mobility exercises and stretching to help with the joint and mucscle pain and core to keep the skeletal pump going !

Hope you feeling better!

Sorry to hear your daughter is still struggling .

I taught a child who had Dystonia mainly in her neck she received botox injections to relax the muscles she also wore a body brace . However she didn't have dysautomonic problems . 

I hope your daughters find some relief soon 

Garden girl an upside down house means we sleep downstairs living area/ kitchen /office upstairs. It actually works well here in uk as upatsirs is often warmer and the bedrooms are cool which helps with the heat intolerance ! The only issue i have is carrying shopping uostsirs but hubby is very good and he loves shopping unlike me ! It is a converted train station so very quirky , we downsized four years ago after kids left home ,  

I totaly agree chronic illness (and getting older ) changes the way you view life and i appreciate the little things these days. Along the way I have lost some friends but the very positive thing is  those who are still around are true friends and where as I was always so busy I now make sure I always have time to meet up. 

Winter snow sounds like you are achieving your sorting out really well ! I actually found it very therapeutic getting rid of stuff.

I love my steam cleaner saves all that scrubbing that I find so challenging these days, I  mostly use home made cleaners and essential oils to help cut down the chemicals . 

My favorite thing my kitchen windows that looks over the Welsh mountains ( live in an upside down house ) so easy to waste hours lost in the view especially watching those beautiful sunsets 

Some days I have awful pain after exercise some days it's ok but always leaves me fatigued to some extent ,I find an hour of slow stretching always helps to energise me and relieve the aches,  also massage myself after a shower and I  use a nova sonic regularly on my neck .to release the tension 

We spend many hours on self help no wonder we are so tired ! 

Thanks for sharing the link interesting ! Ilove seeing live performances so inspiring, lucky you !  

I am a great believer in body mind connection . I mainly teach classical ballet to kids and adults .I have to rest and  have had to adapt my teaching approach to keep running my school. I think it keeps me sane and the slow controled movement keeps me strong and centers me mentally and physically. My cardiologist thinks the ballet made my skeletal pump strong so I didnt faint as much as I should with my BP readings. It is much more stable now with midrodine and I very slowly being able to demonstrate more.

My syncope nurse recommended Autogenic breathing technique recently. She had just attended a conference and was told many POTS patients have seen improvements since practising this . I have only just started this but I have to say already I haven't got to the end of the first practice because I fall asleep . Great as I do get insomnia 

Please let me know how session went if you attend 

I have never done chair yoga but I teach chair exercise classes to disabled and mentally disabled clients, it's actually amazing how hard  and how many muscle groups work whilst seated ! I use quite a lot of different equipement to add a challenge and variety. Obviously the chair adds stability and that  sounds a great all round class I hope you give it a go and enjoy it !

I meditate and practice mindfulness it has helped me enormously this last 12 months  to help me deal with a lot of stress that's been going on in my personal life however not always been that easy to do !