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Labile Blood Pressure


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#1 gemma

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Posted 02 April 2010 - 10:20 AM

Hello folks,

I would like to make a contribution on the above, otherwise known to me as see-sawing blood pressure. Have been browsing around tonight in the forums and read several posts with the same message - people whose BP was previously ok, who are undergoing treatment for sclero in some form or another, and who start having up and down readings, doctors often saying not the sclero, many people obviously on medication so it might be a side effect, lots of confusion on this topic.

I am an undiagnosed/untreated so far sufferer from sclero, and I can divide the whole ghastly experience into 3 distinct parts - part 1 is where I start having sudden onset extremely severe symptoms which subside almost completely and then return even worse over a period of 3 years. Despite investigations nobody including me has a clue as to why I should suddenly experience dizziness/swallowing /digestive/eye/mouth/spleen/bladder/skin problems. Add to those extreme anxiety when in the grip of a bad attack.

I have managed to be a lifetime low BP person well into middle age. End of phase 1 is where I have by sheer persistence finally got into the neurological hospital in London for outpatient tests on my muscle reactions - all fine of course, not a neuroligical illness - and the consultant finally sees me and tests my BP, but does it in the following manner - first lying down, then standing, and times it by his watch. Then he tells me that my BP has fallen 15 points in the 3 minutes he timed it. Doesn't sound like much but it was a breakthrough for me.

Part 2 now begins - I begin to realise that the mechanical basis of my agonies is probably circulatory.

Proceeding from that idea I arrive at the literature on POTS and disautonomia, and realise - correctly - that I haven't got that much blood going round in me, that the circulatory demands of digesting a decent meal are what give rise to some of the most unpleasant symptoms, ditto my temperature control problems, which are severe, and when I stand up/climb stairs or crouch down and gets madly dizzy its because of blood flow or the lack of it to the brain. But only at times. That's the puzzle. So by and large I make certain that I have simple ways of raising my BP when it starts to plunge, which it does when I am in a flare. Problem is when I develop tacchychardia in a particularly bad episode they take my BP and its sky high !!!!

No medication for that, next time its taken its low/normal again.

Part 3 of this most unpleasant odyssey has only just begun, since I developed sceleroderma on my fingers and arm for the first time unmistakably a few weeks ago, which brought me back to this site and the info on it. Given the nature of scleroderma inside you, how can the up down BP not be a sclero symptom? If the veins are affected then the circulatory system is affected, and will behave erratically it seems to me. I recommend any systemic sufferers if they have not already done so to look at the POTS/DYSAUTONOMIA websites and info - it helped me to understand, and however feebly, to take some effective action. They are long words but they only mean your automatic whole body functioning has got out of kilter and it can be for a variety of reasons, in the case of myself and others here, that would be some form of scleroderma.

Love and hope to all, no matter how dark it seems, believe in the light.

#2 Jeannie McClelland

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Posted 02 April 2010 - 10:55 AM

For those who don't know the abbreviation, POTS is Postural Orthostatic Tachycardia Syndrome. Dysautonomia means dysregulation of the autonomic nervous system and can affect much more than the blood pressure. Diagnosis of these conditions is usually done by a neurologist, sometimes in conjunction with a cardiologist.

Severe swings in blood pressure should always be thoroughly investigated by your doctor, as they can be caused by many things. Both very high and very low blood pressure can be dangerous, not to mention alarming and very uncomfortable. :wacko:

As always, when surfing the web for health/medical information, be sure the sites are reliable.

Best wishes,

Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Shelley Ensz

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Posted 02 April 2010 - 12:14 PM

Hi Gemma,

Even more importantly than the blood pressure issues, have you been to the doctor, dermatologist, or rheumatologist to confirm that your skin changes are due to scleroderma?

Your dermatologist could probably do a skin biopsy to confirm. Since there are many scleroderma-like ailments (some of which are much more treatable), it is important to get examined soon and referred to a scleroderma expert, if need be. For example, sometimes diabetes, heart disease or hypothyroidism (not to mention the scleroderma-spectrum diseases), can induce very similar-looking skin effects.

I hope you get some answers soon!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.