Does anyone have POTS?

[vickylou01]

My cardiologist has said this is a possibility with some of my symptoms. Do people with fibromyalgia often develop POTS?

[JOSANA]

What are pots

[lou60]

Just had a look around on google, I wouldn't be surprised if others on this forum have this. Sounds very debilitating, sorry I can't be of any help, I had heard of it but had no idea what it was until I looked it up. Hope you are as well as possible. Lou xx

[Ozzygirl64]

From what I know of postural orthostatic tachycardia syndrome, it can apply to quite a few illnesses. But I think what you have to be aware of with a patient who has the label Fibromyalgia is that docotrs will inadvertantly look into possibilities that it is all down to the fibro rather that rule out what else it could be, I had this possibility until I pushed it, see my post on things go from bad to worse, for some time I was told 'oh its all down to fibro pain'. Fibro is a huge umbrella for things we have wrong, genuinely wrong, but no one listens, because you have fibro, or you are in the wrong age group and so on. So far I have had three serious illnesses, each one a killer in its own right, put under the fibro label, not happy about it but hey ho, it happens, I hope it can all be sortedout for you xxxx

[stumpedok in reply to Ozzygirl64]

Uummm....In my case, I hold my hand up that it was frequently me, rather than 'doctors' who brushed all sorts of things aside as 'oh that's just part of my Fibro'.......'doctor bashing ' is a frequent occurrence on this site and whilst I accept it is on occasion fully justified, I do wonder if we Fibros are shooting ourselves in the foot so to speak by being so negative about 'doctors'?......perhaps if we looked at how we can improve /create a good relationship with 'doctors' especially our GPs we might in general get a better response from them. Whatever the situation, in all walks of life, if we go in negative and hostile to the person we will be dealing with, the chances are that that encounter will not end positively. We are all human, including doctors, and so respond better to some approaches rather than others ........it's in our own interest to have a good working relationship with those who try to help and treat us......so maybe sometimes we need to look to ourselves and our attitudes and behaviour first before 'bashing/complaining' about 'others' ....perhaps an uncomfortable thought for some but that is no reason to throw out the idea!

[vickylou01]

Thank you, my cardiologist does not know about the fibromyalgia as it has only just been diagnosed and I had the 24 hour ecg done a month ago and have just got the results. I have not had any extra tests done apart from an echocardiogram which was normal. Fingers crossed these symptoms are not part of the fibromyalgia and are something that can be treated!

[TheAuthor]

Hi vickylou01

I am so sorry to read that you have POTS, and I genuinely hope that you can find some resolution and relief to this issue. I do not have this myself but I wanted to wish you all the best of luck.

All my hopes and dreams for you

Ken x

[niretro]

Yes I have Fibromyalgia and POTS. The POTS diagnosis came long after the FM one - mainly because it had been misdiagnosed as being part of FM (overlapping symptoms) and as anxiety. Anxiety/Panic Attacks is a VERY common misdiagnosis for POTS, and a very frustrating misdiagnosis to have!

I'm not sure which came first for me - the FM or the POTS...but symptoms of both have been around for a similar length of time. From what I understand, POTS can be a primary illness or is triggered by another condition (EDS, Raynauld's, CFS, pregnancy, thyroid etc etc). If POTS is secondary and the triggering illness can be treated, then there is a good prognosis for recovery from POTS. So, It's good to work out if the POTS is primary or secondary. I'm not 100% sure of Fibromyalgia being a trigger for POTS. But FM is sometimes a misdiagnosis, when it could really be EDS or Joint Hypermobility Syndrome (& both those illnesses go hand in hand with POTS).

Lately there is research suggesting that CFS / POTS / FM are all part of a central sensitization syndrome.