dancer65

Thanks for sharing . After reading this I reallly would like to buy one of these to try , maybe once we get some normality back from this pandemic and our lockdowns and when I am working again . I did look up for practitioners offering treatment but they are all 3 hour drive away couldn’t cope with that once a week !

Hi I am sorry this has left you in a flare low bp is so horrible ! Really appreciate you sharing your story, wishing you and your family a speedy recovery . xx

Love this community ! Have a lovely Christmas everyone stay safe 💗

Hi pistol I love gardening it keeps me sane, I really miss it in the winter months it’s too wet and cold here in Wales to do much through dec to March . The start of the season this year was really good here but the lack of sunshine from August on wards left me loads of unripe tomatoes so most friends are getting chutney for Christmas along with homemade mint jelly made from windfall apples . Would you mind sharing your favourite tincture recipe for bites etc ? I would like to have a go at making some next year . Thank you 😀

Sounds like peaceful bliss !

😀👍

Pistol glad it helped ! potsius , if you are young and not tight in that area you may not feel the stretch that much , however it is a maintaince stretch for most people meaning it helps to retain a normal range of movement , for those who can feel a pulling it is then a developmental stretch which should with practice become a maintaince stretch . I hope that makes sense ! Just a thought as you responding to masssge if you put a tennis ball between your shoulders whist standing against a wall and move up and down it would massage the trapezius muscle as impossible to do that area yourself with hands !!!! good stretch for trapezius is the cat stretch ,. Kneeling on all fours suck in belly and curl whole of back towards the ceiling. for upper trapezius whilst sitting tilt the head to one side so the ear is going to the shoulder, by adding the hand on the ear it will deepen the stretch ( same arm as the way you tilting the head Still sitting turn head a quarter turn them put chin towards chest , should stretch upper neck adding hand on head should add more weight to deepen stretch Happy massaging 😀

I believe some auto immune connective tissue disease like lupus rheumatoid arthritis have respiratory problems where the immune system causes inflammation Asthma often induce by allergens and involves mast cells and cytokines. thats what I understand but I may not be right !

Right now, I would love to be sitting in sun ,( of course not too hot ) On a white Sandy beach listening to the waves with my hubby

I have seen a therapist in the past, (not POTS related ) and found it helpful to talk without feeling judge , also helped with ideas how to cope and gave me a different perspective on the situation. I know here in uk some of them are doing zoom . I think Pistol has some excellent suggestions . We have been told we are going into another full lockdown on 28th December with no end date set , so I am making sure I get everything bought that i need to be able to tackle some projects I want to do ! What helps me when I feel down is listening to my favourite music and singing along, however I only do this when no one can hear as I can’t sing to save my life ! keep safe sending hugs x

You may find that it is your pectoral major muscle that inserts onto the sternum is tight hence while massage helps . Both the pectoral muscles can be trigger points that cause chest pain there is a condition called False Cardialgia . You should stretch out the muscles gently after massaging . Placing both hands on your bum and pulling shoulder blades together at the back gently is a good stretch and opens up the chest . Can be done either seated or standing just check your standing or sitting strsight . It’s great the massage is helping you !

I believe asthma is classed as small airway disease due to the inflammation of the small airways . I do find breathing problems are worse when in a flare , also I get tight chested when I lay down which is accompanied by hot flushes every night . it is thought to be autoimmune and that’s supported by the response to immunosuppressive drugs . I have had asthma all my life but pretty well controlled . not sure that answers your question though !

Oh I am pleased I sounded positive , I suppose three months of lockdown forced us to evaluate every part of how we live and what is really important to us as a family thank you for sharing article interesting reading ! stay safe too ! X

It’s been a terrible time especially for those who have lost loved ones and affected us all in different ways . It’s a mixed bag for me ! On a financial side it’s been worrying as I have had to shut my dance school since March and I can’t see it opening any time soon due to restrictions .But I still have part time work when we are not in lockdown. However not working so much has left me time and energy to take care of me and I have managed to take another step forward to small improvements in my health. I am being very careful about mixing so I have not caught the usual viruses that are going around at this time of year, especially amongst my pupils I love being at home more, I am quiet happy with my own company , cooking, gardening and doing all the things I never have the energy to do. My husband is liking it too he doesn’t have to anything in the house any more ! Exercise wise I have done a lot less than I would when teaching and I feel much better for it , I no longer have the weekend on the sofa recovering because I am so exhausted . I think this pandemic will end up with my husband and I changing things in the future.

Yes I have decided I will have it . We live in rural area , the first wave we had very few cases but even after a lockdown cases have surged here in our part of Wales . Chest infections /colds often result in me being sent to hospital to be put on a nebuliser and flares my symptoms for months , like Pistol really don’t want to go back to being bed bound .

Thanks for sharing good to read

Pleased this all worked out for you , hope you manage to get things more under control . X

If I remember correctly taking them together can cause gastric inflammation .

I have POTS and VVS and if I’m stressed physically or emotionally my HR goes high and the addrellin give me the shakes . I find deep breathing and meditation helps in these situations but it can be hard to concentrate when I feel like that ! If you are unsure about medication I would explain to Dr you would like a bit more information . Medication often is trail and error for each patient reacts differently. I started on florinef which helped only a bit but when they changed me to midodrine the improvement was significant. i hope all goes well for you keep us posted x

Oh sorry if I made it unclear I was trying to say how highly people speak of Dr Gupta! I know going privately can add up quickly if you have to pay for tests etc, one reason I went NHS myself

I agree with Pistol having the correct diagnosis is very important to get the best treatment. I hope your consultant is willing to discuss this with you but if not I would go back to GP to discuss your concerns and if needs be ask for a referral for second opinion.

You should be able to be referred via NHS to a POTS consultant , I was referred from Wales to London But of course it’s down to your GP. I only waited 3 months to see my consultant but I had already had my diagnosis Dr Gupta is a lovely man I have been to some of his seminars in York on POTS and other health issues. I am a member of another POTS group and everyone who has him as their consultant speaks highly of him .

Hi I am in Uk. Have you looked at STARS website, they are a charity for syncope and POTS as well as other cardio conditions . They have amazing staff who you can speak to for help, support and advice . I ended up joining £15 for the year for their newsletter and their literature which is useful for giving out to those who don’t know about dysautonomia. They helped me find a consultant who my GP referred me to in London, the syncope unit at Royal Brompton. The other website is POTS uk who have info and lists of consultants.

Well done great achievement! I grew up in a coastal town I love that sea air and I could listen to the waves for hours

Hi Pistol The swelling on my eyes are very slowly going but still burning and itching , my thighs are covered in blisters which are slowly drying up but I think the heat exasperates the itching and it’s now two weeks today since I laid the bark ! Feel better pots wise this morning spent a few days doing not much at all ! I could truly kick myself for being so careless I should know better . The reaction took 24 hours of laying the bark so it took me a few days to work out what had caused it . yes I too react badly to bites I suppose that will be the next problem to overcome ! I had a new inhaler off the nurse which has really helped with the tree pollen this year . hope you are ok at the moment and coping during the pandemic . Xx