merkat30 Posted January 26, 2021 Report Share Posted January 26, 2021 Hi everyone does anyone else get hhorrid leg bone pain or feeling like someone trying pull ya veins out of both,? It just horridous feeling hard to explain keep getting worse I have dysautonmia and mast cell I not long come of clonidine for dysautonmia hyper pots in December due to horrid reactions.side effects generally made me more unwell . Now nothing doctors can try as try them all so feeling little left on my own. Bad morning. Blood pressure from high to low low high heart rate see this morning generally feeling really unwell still waiting on help for my seizures aswell . Also to see mast cell activation syndrome doctor in june as that deffo getting worse . Quote Link to comment Share on other sites More sharing options...
cmep37 Posted January 27, 2021 Report Share Posted January 27, 2021 I get that pain you are experiencing too Merkat - usually when I'm in a flare and haven't been able to do enough exercise. I've had it every night this week as I haven't walked further than bed to loo to sofa in about a month although I am still doing stretches and physio exercises. I always thought it was coming from hEDS rather than dysautonomia but maybe I'm wrong. I feel like you do with consultants and doctors in the UK - if you are hard to manage they tell you to learn to live with it - I'd like to see them deal with what we do every day for a week and then still tell us that! That is why I'm saving up to have a virtual appointment with a consultant in New York who specialises in complex cases of POTS. If I see her and she agrees there is nothing more that I can do, then I'll accept it but I can't help feeling like there is more than can be done if I could only find it! Until then big hugs - I am thinking of you xxx Quote Link to comment Share on other sites More sharing options...
merkat30 Posted January 27, 2021 Author Report Share Posted January 27, 2021 I get it in my hands to it terrible today 😪my bp went from 76/46 to 155 /172 my heartrate keep going really low 45 then shooting up to 160s today . I rang doctors ask if I have been referred again the secretary said "it says here u may need see a neurologist " I answer back politely put phone down just cryed feel like non them really care so alone in it all that 2 gp Male 🙄ovs that haven't done as spos to my usual doctor of unwell knee op for months now 😪all this with mast cell flares up and trying get two children to do work youngest needs paper work so needs help .oldest on teams lesson online every lesson he miss I get phone call of them whining at me he really trying to lot more than he would at school getting good Mark's doing any work he missed.my husbands on redoing kitchen he not good all that school stuff so i have been somehow getting up making it to sofa to dea withl all this I just am at my Witt end today sorry for the rant . I didnt no u could do that online appointment how would there treatment be paid for like medicine wise like would go though a request on NHS do u think or private prescription? That is a option I'm very interested in how u get on with that .I am sorry u have to go though the same it just horrid that they expect us to just live with it I am 30 i feel i will not make it to my children weddings etc at this rate !! I try stay postive but some days it very hard to isn't it . One day at time my new moto I trying add in things look forward to I didnt go out much before odd doctor appointment but now with the covid I dont at all .think was October I went out !! My mum comes to see us though so people about . Quote Link to comment Share on other sites More sharing options...
Crazy Tired Posted January 28, 2021 Report Share Posted January 28, 2021 There's something called Bakers that can cause leg pain. Ask dr Quote Link to comment Share on other sites More sharing options...
cmep37 Posted January 28, 2021 Report Share Posted January 28, 2021 On 1/27/2021 at 3:50 PM, merkat30 said: I didnt no u could do that online appointment how would there treatment be paid for like medicine wise like would go though a request on NHS do u think or private prescription? I spoke to my GP about it and she said that as long as I could prove the person I was seeing was an expert in POTS (she is, she has written books and speaks at conferences on dysautonomia which my GP said would more than qualify as an expert) then she could prescribe anything suggested that was a drug recognised in the UK ie it couldn't just be experimental. She was happy to prescribe drugs even if UK consultants wouldn't usually prescribe them for POTS on a trial basis and if they helped me then she would carry on prescribing them. We talked about IV saline which given Pistol's experiences I'd love to try and she said that she just couldn't see a way to get me them - district nurses can't do it, A&E wouldn't do it on a regular basis and to get them in hospital I'd need a UK consultant to order them. It was actually my GP who encouraged me to look outside the UK - being in Northern Ireland there often aren't experts in rarer conditions and so she is familiar with patients seeing consultants in the Republic of Ireland or Germany although I'll be the first seeing a consultant in America. PM me if you want to know more about who I'm planning to see, prices etc Quote Link to comment Share on other sites More sharing options...
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