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Everything posted by dancer65

  1. Hi I had knee surgery last Thursday under general anaesthetic, like you I was so nervous as I was very ill after my hysterectomy, at that time I was undiagnosed but very symptomatic. My anaesthesiologist didnt know about POTS. Due to lack of fluids I arrived at hospital with a full blown migraine. The staff were amazing and listened to my husbands explanation of POTS and it’s management resulting in me being taken to the ward and being given fluids before my op. I had to walk to theatre so by time I got there I was in excruciating pain from the migraine. They asked for my hand and said pain killers going in and the next thing I awoke in the recovery room! I have a history of panic and hitting out as I come out of anaesthetic so I had forewarned them, my first words were did I hit anyone and the nurses laughed no we left you to come around on your own ! I made them aware of my high adrenaline so pain and nausea could be a problem . My Bp also crashes. I woke up without any pain, no nausea, no panic and feeling like I had just been asleep. I do think that anaesthetic has really improved.i went to theatre at 1.45 pm and was on my way home by 6 pm. Interestingly my HR was normal upon standing for two days after surgery I am sure that was due to fluids. The staff were just amazingly kind and listened to what would help so I have written to thank each department . Hope this helps x
  2. You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog . I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend !
  3. I feel for you trying to get out of area funding it’s so hard to fight when you are not well ! It’s exhausting I always find you never have the right phone number and get passed around departments ! I know someone who had a cfs leak I think she was treated in Birmingham she is back to work as a carer for a disabled client . I just hope you get this sorted ASAP !
  4. Really pleased you have at last found some answers I hope all goes well for you from now on !
  5. Radom symptom man have you thought about keeping a dairy ? I logged everything and found this very useful over time, I started to see pattens That triggered symptoms, syncope, PEM, and it helped me remember meds and to drink. It was also helpful reference for notes to make when I attended appointments as brain fog often made me forget important information.
  6. I agree with Pistol it’s about how you feeling it’s easy to get to checking vitals all the time . My consultant told me not to rely on the numbers but to listen to my body .
  7. I have been complaining about symptoms for years but after fainting numerous times my own GP suspects POTS. I waited almost two years before I was seen at a syncope clinic . I’m in UK . I couldn’t afford to go privately because here if you do you have to pay for all the tests and any medication prescribed., l also wasn’t working . I know it seems like every day is an eternity .
  8. Yep me too hate confrontation and stressful situations . Sweat, shake, can’t sleep, heart rate soars in seconds and I usually run away ! Sitting for too long can have exact same effect on me . Made the choice this year to remove all people who stress me out of my life, drastic I know but what a difference it has made . meditating daily has helped as I overthink things way too much . I also over react so learnt to control my emotions better . Welcome by the way !
  9. I don’t take anything for my autoimmune diseases as they only work when taking them and I can only have short courses but they have made me feel better In myself , at the time I was undiagnosed with POTS and was labelled a hypochondriac, so when I said I felt better I was told it was just coincidence! Sorry you are suffering again so frustrating, so not fair ! Hope you can get sorted with new meds soon and things improve
  10. I take chlorphenamine at bed time ,h1 blocker. I have been tested so I know what most of my allergies are which has been really helpful. I use air filters and I have decided to look into pollen screens for the windows thought it might also keep out those pesky mosquitoes! Sorry it’s put you in a flare x
  11. I smiled when I read you do passe releve whilst waiting for lunch , obviously you trained in ballet ! Due to an injury I can't dance properly at the moment it's had a huge impact on my POTS. Can't wait to be able to put on my music and do barre in the studio, find the music so soothing as well always, feel calm afterwards
  12. I don't knit or crotchet but I use to sew for myself a lot , now it's always costumes for my ballet kids! There are some great tutorials on line and so many talented people with creative ideas for all sorts of crafts.
  13. These made me smile !
  14. Thanks random sympton man I used to get burning pain in my hands and feet now it's moved ! Been easier today the burning sensation is bearable . Its one of those symptoms I mention at appointments thst gets brushed aside so obviously they don't know whars causing it .
  15. Me too I hate shopping ! My husband does most of the shopping these days but sometimes he's too busy with work. I have passed out in tesco so many times at the check out they know my name ! I can go to customer services and they pack my shopping etc , so i can sit down , really excellent staff. I notice the change in temperature in the store around the fridges, then hot around the bakery area but it's the waiting in the queue that really sets me off . I too have low BP . I agree lights are a problem especially florescent,.
  16. Thanks Pistol, no I havent strained the muscles, been feeling really bad last two days , heart rate spiking to 140 in the night with night sweats .BP is low and high. Rhymatologist did think I had fibro but not sure if this is related. Feels as though the heat is coming from inside muscles. Have just used ice pack which has taken off the edge a bit but the itching is driving me insane ! Will try a Epsom bath cool of course just need to muster up the energy!
  17. My arm muscles are buning like crazy and the skin is so itchy, no redness or rash . Tried antihistamines, aloe Vera gel, anti inflammatory pain killers, no relief , any suggestions of what this might be or what would help greatly appreciated.
  18. Hope you are still improving today. It's great you have seen improvements and are able to do more it's very rewarding to be able to help the family . I am very fortunate that I have returned to work but it comes with a price tag , I really don't have any energy to socialise.
  19. Hi pistol So sorry you crashed after having a nice time so incredibly frustrating .I really hope you recover quickly . This is the problem though we look well and on a good day act normal what people don't see is the aftermath of having a good time. Big hugs x
  20. I use to go really dizzy when I bent over when I was at my worst. I used to sit on my bum and scoot around the floor! I understand your frustration it's awful not being able to do what you want, it's even worse when someone else made the mess! I use to feel exhausted just getting up so seeing chores that needed doing use to make my heart sink. I am so grateful i am no longer like this most days . I really think it's hard for others to really appreciate how hard simple things can be for us. Could you not make chores list for each child/ teenager . I use to reward mine for helping eg pocket money, choosing what we did at the weekend, choosing a movie .
  21. MY husband picked these tablets up for me from tk max after seeing a recommendation on a pots site he joined . They really made a difference to me on the recent hot weekend and actually taste good ! SIS HYDRO, they are in a siver tube with green and red labelling £4.99
  22. Thank you so much for all your kind words you have all being supportive to me over the years I have been here.I send I virtual hug back to each of you strong ladies ☺ Dizzy girls I am so sorry it back fired on your parents too, it certainly leaves you in shock . Love to all xx
  23. Hi Kim I am a ballet teacher so yes barre work is great as a work out and using your own body resistance can really tone . I don't know what your looking at buying but I would recommend Karen voight dvd around 20 dollars. She is a trained dancer, award winning fitness teacher.some of her dvds have been around for a long time but her programmes are effective and very clear instructions to help you exercise safely. She includes hard and easy versions of many exercises and some of her workout are only 35 min's long . She has a ballet barre and many sculpt dvd .
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