merkat30

Yes I feel I have be my own doctor most time my pots doctor told me cant do more so got no doctor for that mast cell activation syndrome doctor I haven't seen since march year ago  .yes like they no nout about our condition then appear to no everything even tho I think personally we more risk deffo . I waiting see if safe with my mast cell activation syndrome as I react to everything !! 

The red rash comes on all day on of thinking was of mast cell activation syndrome  but the the mottled I get I get shivers shakes with it usually low BP it horrible I cant get warm at all then suddenly after hours go burning hot !! . Yes cmep37 I also had that of my husband u look like corpse haha. 

Me I get this sooo horrible scare 💩out me it does !! Esp when got toothache and teeth clattering just evil . I agree with above weighted blanket doesn't take away but helps glad help you cmep37 . Also heat helps sometimes to or bag crisps 

My husband who not unwell got offered jab before me .... my sister who young 28 got offered nout up her my bro law who is also nothing wrong him also had it ...it joke I am housebound dysautonmia hyper pots mcas god no what else I haven't been offered it yet 

Any help would be great thank u 

Ooh I get that it just horrid all over 😪😪😪

Thanks cmep37 I will have look at ingredients online such horrid feeling it is isn't it 

this is normal thing for me that is just horrid I be sweating up soon I stand (hyper pots I have ) I took my temperature and it says am cold but I feel like i have a temperature I feel nauseated and shaking and generally really unwell just wondered if this is part of pots or my mast cell activation syndrome so hard to no which is culprit  though any ideas to help this would be helpful go though so much t shirts at moment .

So sorry for extremely late replys it never showed up was a reply .. yes I still same way and no further forward actually more unwell it really does sound like u have what I have goldfinch . That lovely to see u have a lovely helpful doctor soo rare Joseph 

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 .

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 . 

I have found I have put on lot weight inactivity deffo a culprit with all my illness getting worse. I have little foot pedal to try lose some sat down I love say I changed.my diet but I have very few staple foods am aloud with my mast cell I try to go for healthier versions made me lot more  unwell even no tasted alot better .

Arw no way that horrid poor love hope u all start feel normal ish soon .just so scary it is.esp with the news at moment in UK I had stop watch read it instead .hope u feel better soon xx

9 hours ago, Pistol said:

Another thought - has your doctor considered IST ( Inappropriate Sinus Tachycardia )? POTS and IST often get confused since both share tachycardia, but in IST the resting HR is usually high, whereas in POTS the resting HR is normal. 

I was going to mention this I deffo ask about this .

Also sound lot like fibromyalgia but am no doctor . Keep dairy of your symptoms and what u eat also any new products etc also take heart rate standing and sitting also your blood pressure.  There be several post on how do that on here .good luck .

Ooh u really don't sound like I having fun at all have u try antihistamines incase it a allergy reaction ? That might help also change your washing powder might make lil less irritant also some ppl find aspirin helps nerve pain . It horrible have all weird symptoms no relief I no believe me do u have dysautonmia pots  ?  Do hope u find relief. 

I know it was before but now it  so difficult. 

Well that something I guess 

Think she see loads ppl with allergy that to probably or she did say was going help bk in hstpl last march with covid mabye she did get called in the end .

At first the secretary said was no appointments then I said I was follow up I had appointment allready she looked was moved without telling me .it so long to wait even before the covid . 

Rang up see could get my dr croom appointment sooner they put it from march to april now to june 😪😪was only appointment gna help .

midodrine  fludrocortisone   pyridostigmine  clonidine  ivabradine beta blockers x3 cant rember names sodium cromglate  these just ones I can rember diorlyte daily electrolyte daily compression socks exercise pacing saline at hostpital for emergencys all these made me end up hostpital just torture feeling of hope then have such horrid reactions am still trying to get over clonidine. Salt tablets made me nauseated and stuck in bathroom they horrible hurt lining of my stomach. Compression seem set my heartrate up more .I know feeling as if u let doctor down it your fault it not worked same with family we can only try being gunnie pig sucks .

My pots doctor rang has told me there is nothing else they can offer me for my hyper pots we tried it all medication wise .So just emotional support all can give now she said. Feeling very crap about it and as am sure all u felt very alone . Hoping dr croom can help in april .

5 hours ago, Nin said:

When I got really bad last year the one thing I got was bladder problems. I have to say it was one of the worst out of everything! I could hardly walk as it felt like bone was rubbing on bone (it was really weird) i had 2 lots of antibiotics and it just got better. So yeah I really feel for you.

Bone bit sooo me it horridous isnt it .

Really does sound like u have some sort of mast cell activation issues like me nin sorry to hear you have had horrid week to with seizures and stupid toothpaste deffo can cause reactions .