Jump to content

New Member....


Recommended Posts

Hi everyone,

I would like to introduce myself as i have been reading all your topics for over a year now but due to my lack of computer knowledge i have only just become a member so bear with me because i am a novice at this.

My name is Maggy, i am 37, married with 4 teenage children, i was diagnosed with POTS,C.F.S and progressive Autonomic Neuropathy about 18 months ago.

This forum was a lifesaver because it certainly helped me sit back and relax a little bit more about my illness, it just helped me to know that i was not going crazy and that i wasn't alone having these wierd things happening to my body.

As you are all aware the illness seems to change your whole lifestyle, it has definatly been a big struggle getting through these last few months for the whole family, for the last year or so we feel like we are having to fight all the way just to get the basic help and support that everyone should be entitled to, it just seems twice as hard because there is so little known about the illness.

There is one good thing about having this illness................................. at least you never get bored as there seems to be a new symptom popping up every other week or so!!!!!!!!!!!!

On a more serious note i have got to the point where most of my life is spent in a wheelchair, lying down or in a hospital instead of doing the things that i want to do and i know that many of you out there have similar stories, but this forum has been the most helpful thing that has got me through some tough times and i feel proud to be part of it.

Hope you are all keeping well and i hope to be in touch soon.

Link to comment
Share on other sites

WELCOME MAGGY!!! I am so glad you have found us. You will find this is a very compassionate and informative group.


Link to comment
Share on other sites

Hi Maggie,

welcome to the group. I'm in the UK too and there are several other UK based members here too. Sorry to hear that you have been having such a tough time, I hope you find some advice on the website and board to help you deal with some of your symptoms. Please feel free to ask questions and come and tell us if you are having a hard time - getting replies from people who have experienced what you are going through can be really encouraging.

take care,


Link to comment
Share on other sites

Welcome Maggy,

I'm glad you found us and like you I read for quite awhile before posting. I've been here for close to a year now and have learned more from this site, as well as all of the wonderful people on it, than I ever did from any of my doctors. There is a great support system here and it is truly the only place you can vent, talk, research or what ever else in total ease knowing that we all understand or have been there ourselves.

I hope you find the same support here as I have. I also am married and have 2 teenagers. Life is very hectic with teenagers. My oldest also has POTS along with many other health issues, so it's a double whammy with doctors, appointments and symptoms at my house. I wouldn't be able to manage with 4 kids...LOL :lol:

I look forward to seeing your posts.


Link to comment
Share on other sites

Hello Maggy and welcome,this is a comforting place,where you will find people with similiar stories and experiences. It really helps to know we are not alone,so again welcome, Pat

Link to comment
Share on other sites

Welcome aboard, Maggy! We're glad you found us. At the same time, we wish you didn't have to!

I'm new too, and I agree: This board is wonderful.

I am new to this kind of communication and have never yet spoke to anyone else with POTS - but i am so glad to have found somewhere with information that is helpful.

My brief story: I was diagnosed with POTS officially 12 months ago (Idiopathoic kind) by Professor Mathias who my local neurologist referred me to.

Without boring anyone too much i would very much like to ask a couple of questions without boring anyone too much.

I have probably had this most of my life - as my blood pressure has always been on the low side. I had suffered with dry eyes even pancreatic insufficiency which required supplements to help me digest my food. My blood pressure always seems to be on the low side and am taking Fludrocortisone at the moment.

Is it quite norma to have extreme stiffness - i suffer a great deal with stiffness in the neck area with what appears like muscle spasms, even moving my arm out to the side sometimes causes terrible pain. There always seems to be a constant burning in my shoulders. Has anyone suffered this kind of thing. Pressure also on my ears. This has all been getting worse over the last few years.

It would be great to here others views on these issues.

My user name came from my lovely british blue cat by the way.

So happy to be here at last!!!!


Link to comment
Share on other sites

Hi Valentine

Nice to speak to you.

I also see Prof Mathias. He asked me when I went to see him the first time if I had any shoulder and neck stiffness/pain (which I do) He felt around my neck and shoulders, then referred me to his collegue, a rhumatologist called Prof Grahame.

I saw Prof Graham at UCLH, and he diagnosed me with Ehlers-Danlos Syndrome and cervical sponylosis. I had a few weeks of consentrated physio to relieve my neck pain and stiffness. It's still very much there, but not half as bad. I don't know if it's a POTS thing, or an EDS thing.

I have bought a memory foam pillow which works wonders. It supports my neck in all the right places. The shoulder/neck stiffness/pain is constant which I think is why I am always getting headaches... or maybe the POTS gives me headaches, or the low blood pressure....sorry, not much help. But I just wanted to say that you are not on your own with these symptoms.

Funny you mention about pressure on the ears, I get this a lot, mainly when I get up, I always thought it was to do with low blood pressure? as the more I feel the pressure on my eardrums, the more faint I feel.


Link to comment
Share on other sites

Oh my gosh!

My neck hurts most of the time. By the end of the day I have burning between my shoulder blades, knee ache, hip aches, and jaw aches. You mean this is all a part of the syndrome too?

I have not been diagnosed with EDS, just POTS, NCS, MVP, and dysautonomia - oh yeah: hypoglycemia and hyopthyroid.

Joint pain and headaches are a fairly new thing for me. I don't know what is going on. I'm surprised to read it might be another fascinating manifestation of the joy of dysautonomia.

I'm curious. Can someone say more about this?

Link to comment
Share on other sites

Hello again and thank you for the nice welcome,

Just interested in your post Nolie you mentioned you had a 16 year old Daughter with POTS, my Daughter has just turned 16 and has just this week been told she has POTS although we have suspected it for a while.

Have you been informed about it being genetic?

Does anyone have any info on how common this is to be passed from mother to daughter? or sons????

Is there any specific Auto immune disease that any one knows of that can cause this?

As for the neck and shoulder pain i also suffer from that, it can be so bad sometimes that i use the cool patches that are meant for headaches and plaster them all over my shoulders and neck, it ends up costing a fortune because you use so many.........but at least it brings temporary relief! .

Once again it is so nice to be a member here and be able to get helpful tips and just know we are not alone.

Take care.

Maggy x

Link to comment
Share on other sites


So sorry to hear that your daughter has pots as well. It is very hard for my daughter to deal with her pots. She wants to just be a normal teenager and not stand out as well as be very active. She works very hard at it. All of her friends know just in case she would faint, but otherwise she does whatever she wants pretty much. It doesn't come without a cost though. She will play sports all weekend and then sleep most of the week. Now that school is back in she knows she will have to pace herself better. Anna as pots as well as EDS and Von Willebrand. A very bad combination as EDS causes your connective tissues to be weak, and she could bleed. Her Von Willebrand is type 1 which is the better of all of them. She is only a mild bleeder, but dangerous none the less. I hope your daughter can continue to do her own things and that her symptoms are not bad.

As for genetic I've never been told anything until Anna was dx. I was the first to be dx then my mother who is 71 and then Anna. Her doctor said it runs in families some times. But I have not done any research on it yet. We have just been dealing with day to day and getting Anna straightened out. She has had a long hard road of it and is finally starting to see some improvements. Now we are just trying to get her GI problems under control.

For a relief from the cool patches you should try what Anna and I do. We bought a ice/heat pack from our local drug store. It can be put in the microwave or freezer. It is a gel pack that stays soft and we keep it in the freezer and use it when we need some relief from headaches, cramps or muscle spasms. Just a thought. I think I paid about $12.00 for it and we have been using it now for over 6 months.

Again, glad you found us and I hope you can find a lot of your answers here.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...