Hi all,

My girl has had a rash on her body that is itchy...Haven't changed her meds, but did start using Gain laundry detergent instead of Tide. But we have used Gain in the past. Any thoughts on this?

Also, she had bloodwork the other day and actually passed out. She has never done this before, is usually fascinated with the blood draw. She wants to be a doctor so this stuff doesn't bother her. I have read about the autonomic nervous system going haywire sometimes. Any thoughts would be greatly appreciated.

I have you all in my thoughts and prayers.


Sandy

Hi Sandy,

Sorry to hear about what Lindsay is going through right now. I hope she feels better soon.

I have a rash over my body at the moment. It looks kinda like i've been bit by something but haven't. Not sure what it is but I do tend to get them a lot.

As far as the fainting, I have been collapsing for 3 months now on average 25 times a day. I can just be walking round and fall to the floor although it does happen more during sitting, hence why I haven't been on the forum much. It's been so bad that i've had to pack in my college course I was doing and have now developed RSD in my back from falling out of bed whilst collapsing! I was diagnosed with Reflex Syncope which is something up with the calf muscle that pumps oxygen to your brain and then told it was POTS (Postural orthostatic tachycardia syndrome) which is something wrong with the heart beating too quickly causing your blood pressure to drop at certain times.

I'm on the waiting list to see doctors that specialise in it but they are only at the adult hospitals over here so wont accept me until I am 16 which is another 5 months away !

My PM Doctor did say that RSD can cause your Blood Pressure to go either too low or too high and the POTS can be caused by Hypermobility so if Lindsay has that it might be worth getting it checked out. Mines believed to get worse when my pain spikes as a way of my body 'coping' so that could have been whats happened to Lindsay.

Please send her my love and if you ever want to talk i'm here!

Alison. x

Hi Sandy and Lindsey
I'm so sorry you passed out. RSD is an autonomic nervous system condition. Meaning the involuntary organs of the body are involved-body temperature, bodies regulary organs, and immune system. The sympathetic nervous system raises blood pressure and the parasympathetic nervous system lowers blood pressure-the low blood pressure causes passing out. I passed out one morning for at least an hour and half-paramedics said pressure was 60/40. I continue to have both high and low blood pressure.
I am allergic to dryer tissues for fabric softner and some soaps. I use Dove soap for bathing and tide for washing. Having scalp bumps-painful. Have had skin lesions and red dots, common with rsd. Have read on this site about this being related to rsd. I think there is some information on rsdrx.com puzzles list. It's a list of 150 question and answers by Dr. Hooshmand who practiced in Florida, specializing in rsd 40 years.
You are in our thoughts Sandy and Lindsey. Take care, loretta

Hi Alison, good to hear from you, but sorry about your additonal problems with low blood pressure. I've passed out from that, and it was very scary. I have continued to have periods of low blood pressure, but not pass out. It was 60/40 when I woke up after an hour and half out. My Dr. said it's because RSD is an autonomic condition, meaning involuntary organs are affected, like blood pressure, body temperature, immune system.
Hope you feel better and can get back to your classes. Take care, loretta

Hi Sandy...

I ma sorry I am at a loss as far as the rash that Lindsey is experiencing.. All I can surmise is the 4 headed ugly animal..RSD is up to something again..Possibly an internal thingie going on theat is expressing itself on the outside of her body.. maybe nerves...once again connected to RSD.. Possibly time to have her Dr. peak and then I'd love if you would share with us the results....

Sorry I can't be a better help to you...My best to Lindsey and hope soon you will have an answer...

Hugz...Kathy

Dear Sandy,

So sorry that Lindsay is having another symptom - I had some terrible itchy rashes earlier on in my RSD - mostly on my back. Some of my shirts are stained with dots of blood from where I scratched myself raw because of the itch. I found that the pasta grabber was the most effective tool for that!!

I remember some of my worst rashes appeared after a few of my blocks. But others were just random. And I'm sure it was the RSD, because I had never had had problems with them before and I was 47 or 48 years old at the time.

The rashes didn't last very long, I only had them off and on for about 4-6 months and then they just stopped. Hopefully Lindsay's rashes will do the same. Really hot showers helped reduce the itch somewhat. You could also try warm oatmeal baths.

Good luck to you -- Sandy

Hey Ali, I am so happy to see you back on this forum...I was worried about you. Lindsay does have POTS she was diagnosed with that when she was 11 years old. She is also hypermobile. I knew that was what is wrong with you they also call it Vasa Vagal with syncope...sorry for the spelling. Lindsay took medication for years until she had the ketamine infusions her blood pressure stabillized. I am wondering if that could be starting to rear it's ugly head again. Lindsay sees a wonderful cardiologist though
All Childrens Hospital here is Tampa, he is the top doctor dealing with POTS.

I hope you feel better sweetie, I know this has been a hard road for you
Keep your chin up and I will keep you in my prayers.

Love Sandy

Hi Loretta,

It is also good to see you back here on the forum as well. We have missed you. I just remember that we use Dove soap too, but I have been trying to cut corners in our budget, I am a teacher and we do not work in the summer, so I bought the generic brand of Dove soap. That could also have done it. But, as I mentioned to Ali, Lindsay does have POTS and has not had an issue since her Ketamine Infusions. Maybe it is starting to rear it's ugly head again. How is the new home???? I hope it is going well. I missed you too.

Soft hugs to you,
Sandy

Hi Sandy,

The oatmeal baths are a great idea. I can pick up the Aveno bath. That should help her. So am going to try that. How are you?

Sandy

Hi Sandy S, On your Gain box there is an 800 number for Proctor&Gamble. If you call them they will tell you if they have re-formulated the Gain recently or changed any of the materials in it. I am suspecting that it is probably the perfume that they add to the soap. Gain is being re-configured with stronger scent in it as the company wants it to appeal more to the Hispanic population (no offense intended to anyone). My dad retired from P&G from the plant that makes Gain (liquid) but the company is real good about keeping the people that retired in the loop. Also two of my cousins work at the same plant.

Even some of the so called scent free detergents have some scent in them, just in smaller amounts because without it, the soap really stinks. Hope that helps a little, Lisa

Sorry for all the mis-spells tonight, I am having a stupid finger day.