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Jcarson Message
22 Dec 2019, 11:47 PM

It has become apparent over the time with this condition, that thermo-regulation is one of my problems.   My core temp in hospital is regularly 34 C or thereabouts.  I frequently have to dress warmer or cooler.  This fits with autonomic dysfunction.  My lowest core temp was 32.4 C on my initial presentation.   Is this the case with others?

Rita Wood Message
23 Dec 2019, 09:35 PM

I run around 97.6 or 36.4 celicius. I don’t take my temperature often but I am sure it is lower at time.

stedrick Message
6 Jan 2020, 12:15 PM

Good Morning,

Autonomic dysfunction has been an issue since I began the SCLS journey. I am very cold-sensitive, I have a drop-rate pacemaker and my respiratory rate slows for no reason other than physicial or emotional stress.

My lowest body has been 95.2 F. It can be 80 F and I may inexplicably have sudden goose bumps.

Hope this helps in some way,



stedrick Message
6 Jan 2020, 12:18 PM

PS The autonomic dysfunction often occurs with fatigue as well.

Annmarie Message
9 Jan 2020, 03:20 AM

Hi all,

I also have considerable Autonomic dysfunction. I have low core temperature approx 35.5c, I do not cope with rising or falling temperatures, I do not tolerate being in the sun, I get heat rash very easily, and feel weak,  my body can't regulate my fluid levels, hence a mild but chronic capillary leak. My blood pressure is unstable between lying, sitting and standing. Someimes there is a major rise or fall of either systolic or dyastolic or heart rate, sometimes by 50 points within a minute. This can make me weak and faint, create brain fog etc. I regually vomit before completing a meal, for no reason other than the autonomic system inappropiatly thinks there is some danger, and I have gastroporisis and severe constipation / impaction for months at a time every year or so. The autonimic system stops telling the stomach and bowel to contract. 

I have a Gastroentologist, who thinks that this autonomic dystfunction goes hand in hand with Mast Cell dysregulation and  connective tissue Issues, both of which I seam to have. Going forward in the next few months are appointments with Cardiologist, Immunologist, and Rhematologist, and probable treatments for BP issues ( Mestinion) and stablising Mast cells with Sodium Cromoglycate, and inhibiting the relase of Proteases, Leukotrienes, and Cytokines, which will hopefully reduce vascular permability. I have started on Singulair (Leukotriene antagonist), which has helped fluid isses somewhat and GI issues hugely. 

It is interesting that other members have these autonomic issues. Are there any members with Mast cell or connective tissue issues or perhaps maybe all 3?


WazzaACT Message
24 Jan 2020, 07:24 AM

Hi All. I usually run a low core temperature of around 35.5 also but as long as temperatures are warm I am OK.

Jcarson Message
8 Feb 2020, 08:18 AM

Hello all

i have fortnightly ivig, and the nurses take my temp routinely.  Last time the ambient temp was 22 C and my temp was 34.6.   I am sure this has some bearing


leilasmom31 Message
18 Feb 2020, 07:38 AM

Annmarie - my daughter who is now 14 , suffers from SCLS. She also has Mast cell activation ( chronically high blood tryptase ) andnis on Gastrocrom. She also has a form of autonomic dysfunction called POTS. She first showed signs of pots after her second and most severe episode of SCLS . We ( myself and my daughter ) also has Ehlers Danlos type H.  And it is quite common for people with EDS to have mast cell activation and also Pots . My daughter suffers a lot with infusion related side effects from Scig , but is overall doing very well and is actually a very healthy young lady . She does have a lot of trouble with eating , but we are working on that . ( 2 acid reducer  medications and the Cromlyn ). Hope this helps you . please feel free to message me if needed .

Best wishes ,