Autoimmune - Dehydration or Overheating?

[steph723]

My son is 28, has rheumatoid arthritis, sjogren's syndrome, & Down Syndrome. His eyes & mouth are severely dry from the sjogren's. He is having a problem with what we believe is either dehydration or overheating when he does any activity that is cardio. He drinks a sports drink before, during, and after basketball or the treadmill. However, he still sweats heavily during the cardio and often (more frequently lately) collapses after about 15 minutes of cardio and sometimes has tremors in his legs and arms after collapsing. He comes around after 30 minutes of cooling & drinking liquids, but is usually very tired for several hours. Is this related to the sjogren's, and what is our best approach? Thank you.

[steph723]

It seems to me that it's important for all people who have Sjogren's to be seen at a Sjogren's clinic.  Sjogren's crosses so many medical specialities and body systems that it would be helpful to be seen at a clinic where all specialties are present and the docs can consult with each other.  When I ask my son's opthalmalogist (corneal specialist) a question, he often says, "What does the rheumatologist say?"  And when I ask the rheumatologist, he says, "What does the internist say?" or the dermatologist or the opthalmalogist and on and on.

I faxed a note to the new internist giving him a description of what is happening with the overheating/dehydration and sent a copy to the rheumatologist.  I thought we might get more from the exam if the internist can consult with the rheumy or give this whole thing some thought before he sees my son.  I will take your suggestion and push for a complete heart exam.
Many, many thanks
Sharon

[thyroidian]

Hi Steph.
Welcome to this brilliant forum, we have some great people on here, with some tremendous knowledge. and some very good doctors who give some great advice.

I would definately be asking the internist for some cardiac testing, including an echo scan, and a treadmill stress test, just so they can see for thereselves,what happens to your son when, exerted.

How daft is that, you have to be that dry to meet the criteria, to be accepted at a sjorgens clinic, how daft is that.
I thought once a diagnosis of Sjorgens, then you should have involement of help for the illness. Its a bugger when youre not dry enough, to get additional help, for a condition your are going to suffer with longterm.
Steph youve got me venting now, im sorry but i feel you should have access to the resources, by just having Sjorgens, and if his rheumy hasnt got a clue, then what hope have you got, for appropiate treatment, if needed.

I wish you and your son well.
Please keep me informed of the progress you get, and dont forget to push for the cardiac evaluation, as this i highly recommend, before further exercise to exertion.
Best wishes
Nicola

[steph723]

Thank you so much for your helpful comments.  I am a newbie to this forum, so I hope I am responding through the correct channels.  You are correct that many people who have DS also have heart and thyroid issues.  He has always checked out just fine in both areas and was wonderfully healthy until the RA and sjogren's began.  He is seeing a new internist next week, and I will add a question about more extensive heart testing at that point.  Until we know what's going on, he won't be doing any cardio.  Even his rheum specialist doesn't know that much about sjogren's, and we have been told that he doesn't meet the minimal dryness criteria to be accepted by one of the sjogren's clinics.  Wow!  I really empathize with the people who ARE dry enough to be accepted by the clincs!  And thank you for the finger-press test for dehydration.  I will definitely use it.  So easy to do wherever we are.  Many thanks to you both.

Sharon

[luppylupus]

Hi ..There is an easy way you can tell if your son needs more water. All you do is take a finger and gently press down on his arm, when you release it after just a couple seconds and it turns back to his normal skin color then he doesn't need water yet if it stays white then he needs water right away.

I also agree you need to make an appointment with a heart doctor.

Take Care
Cassie

[thyroidian]

Hi Steph.
Sjorgens affects usually dry eyes and mouth, but can also cause organ involvement.
Maybe this may be cardio related, and with your son being downs syndrome does he have an underlying heart condition, I only say this as i have a brother with Downs Syndrome, and i know heart conditions are very common with Downs Syndrome.

Maybe if he hasnt got an underlying heart condition, then you should ask for a referral to a cardiologist for a full evaluation.
I do know that sjorgens is an auto-immune disease, and can affect in some cases certain organs, which in your sons case may be his heart,
I would be having a full cardiac evaluation done with a cardiologist, before i put him back on the treadmill.

Also thyroid conditions can be common with Downs Syndrome, and if hes sweating  more often now, then maybe a thyroid blood profile should be considered.

I hope your son well, and i hope he gets better soon, im sure hes a ray of sunshine.
My loving brother has Downs Syndrome, and hes 27 years, but he doesnt sound as active as your son.
My brother has a heart condition, along with a thyroid condition, which when ive questioned the consultants, they say is very common with Downs.
I hope this as helped you, and please keep me posted .
Best wishes
Nicola