BeforeTheMorning

I know that most of us are supposed to be wearing compression. I'm finding it hard to make myself do it, but I'm going to start trying to wear them more often, because you try anything to help, right? But I was wondering if there is any way you can make them less ugly. Has anyone tried dyeing them with fabric dye? Would that work at all, or would it damage the stockings?

I haven't posted on here for a while. But I guess I've found the cause of my PoTS now, I've been diagnosed with EDS3/BJHS. I saw a geneticist and a rheumatologist and the geneticist wrote EDS3 in the letter and the rheumatologist wrote BJHS, so I'm not really sure which it is or if there is any difference between them.

I'm going to be starting physical therapy beginning next year, so I'm hoping that will start to help with symptoms. I'm also hoping to get a referral to a gastroenterologist to help with the increase in nausea and abdominal pain that I've been having.

Hope everyone on here is doing as well as possible,

Lyla

Hi Friday7,

There is a link to her blog in her signature, down below her posts.

Welcome to the forum!

There are lots of people on here who can identify with what you are going through. I hope that your testing goes really well.

Best Wishes,

Lyla

I've always thought that my acrocyanosis is from blood pooling in my legs. If I stand still with one leg on the floor and one leg up on something, then only the leg down on the floor goes purple/grey. Also when I walk they go back to a more normal colour, and I assumed that was because the blood was being pumped back up due to activation of the calf muscles.

Welcome franziska! I know how you must be feeling, it seems like there are so many things to get sorted when you're newly diagnosed you just don't know where to start. Like the others have said, it's probably best to take one thing at a time. I would think you could start by definitely making sure you are drinking enough fluids every day. About changing your diet, maybe you could just start off by changing one meal every day to include less carbs, until you get the hang of it more. I found it really hard to decide what kind of exercise to do when I was diagnosed, but I started off just doing a little walk every day, like walking to the end of my road and back and gradually built up from there.

Thank you so much for sharing Freaked. I'm really glad you've made so much improvement! Can't wait to get there too!

I'm so sorry to hear that. I'll be praying it all goes well.

Wow, so sorry to hear that! I'll be thinking of you, and hope that the pain eases soon.

Best Wishes for a speedy recovery,

Lyla

Just bumping this up, to see if anyone has any more ideas.

I haven't had physical therapy yet, although I'm meant to be starting some in the near future. I just wanted to wish you the best with it, and hope it goes well.

I have quite a few breathing problems with my POTS and I see a Respiratory Physiotherapist who teaches me breathing exercises to help.

andybonse, could you provide us with information on how to find the course and team and who runs it?

Thanks for the input guys. Keep the info coming!

I hope Tyler keeps getting better and better when he goes back to 3 treatments a week. Thinking of you both.

Thanks so much for the information, Corina and Katybug. I will definitely have a look at Etsy and I look forward to hearing about the other things you have on your list Katybug.

Thanks so much everyone, it great to feel there are people who understand and care.

I managed to get to my appointment which was a good thing, but unfortunately the consultant I saw was SO unhelpful. She was really polite and friendly which is a plus, but the only thing she really seemed to want to tell me was that there was no cure or help for any of my symptoms because there haven't been enough studies done.

She also said that there are only two medications that can be used for POTS/EDS, and I'm sure that that is not true!

She wouldn't think of anything that would help my abdominal pain and nausea, she just seemed to think I should accept it as 'normal for me'. I do kind of think of it as normal for me but that doesn't mean I don't want something to help it.

She had absolutely no new ideas and didn't really tell me anything I didn't know already. Oh dear, I guess I'll have to wait and see if she will do anything about getting my other doctor to refer me to a gastroenterologist.

I guess I'll just have to try and remember the positives of the day, I managed to get to a take-away for a quick meal afterwards and I got some good information about something I was interested in from a member of staff I spoke to at the hospital. So it wasn't all a bad day, but I really wish that doctors would think about what they would like if it was them!

Thanks again for thoughts and prayers, and sorry for the little rant!

Lyla

I have a big appointment today, and I'm really quite bad symptom wise at the moment so I'm going to find it really hard travelling there and getting through an appointment and everything, so prayers/thoughts would be much appreciated.

Thanks

Lyla

Sorry you're feeling so bad. I know what you mean, it is SO frustrating to be doing all the right stuff and still be feeling awful. I'm pretty much going through that myself right now, and my thoughts are with you. I hope you feel better soon.

I think sometimes your body just doesn't feel good for a while after you change eating habits. I know when I went on the Atkins diet, for the first two weeks I felt absolutely awful. But by the third week I don't think I was really noticing any extra symptoms. Maybe it could just be that your body is taking a while to adjust?

Hi,

I was wondering if anyone has come up with any good ideas for how to earn some money while stuck at home feeling awful.

I am unable to go out and work right now, but I would like to try and find something that I could do a little of at home.

Any ideas at all are very much appreciated,

Thanks,

Lyla

Yes, last year I had this a LOT of the time, though it's not been so bad this year. It feels like the floor is moving up and down and around.

Sorry you are having to go through all this. But Welcome to the forum!

I hope you find answers soon,

Best Wishes,

Lyla

I had never heard of POTS and the first several doctors that I saw didn't know enough about it either. When I did find out about POTS it was amazing because it was the only thing I'd heard of that could tie all my symptoms together. I went to my GP and told him I thought it could be POTS and he had never heard of it, but fortunately for me he was open to the idea and he read up on it and referred me to my specialist of choice and after MANY tests I finally got my diagnosis last year.

That's amazing you're seeing some improvements however small. I'm so happy for you and Tyler and I hope he continues to improve!