A Weighty Issue

[rach73]

Hi,

I am new here and this topic may have been covered before. I have seen a couple of posts that have sparked an interest in me.

I am just starting out on this crazy journey, it has been this forum which has lead me to believe that I have dysautonomia.

I am overweight, I put on 3 and a half stone whilst on steroids in 2008. I have now lost that weight and hope to go on and lose more. Im not dieting I have just lost my appetite, I always feel like Ive eaten and when I do eat I get full quickly. I have another 3 stone to lose to get to a healthy BMI.

My weight has crept up steadily due to being so incapacitated before I was placed on steroids, I suffer with terrible fatigue and feel unwell on standing. I get light headed and a pressure feeling in my head. I have a low BP, which rises on standing as does my heart rate. I have dips in blood pressure after eating and I have to lay down.

Do Drs believe that only thin people can have dysautonomia? How many of you on here are overweight? Did being over weight hinder your diagnosis? Were Drs less sympathetic?

Im really curious as I am going to be speaking to my GP next week and broaching the subject with him for the first time.

Thanks

Rach

[miranda]

I am confirmed with dysautonomia , OH & NMH.

I have never been a very skinny person and was slightly overweight in the beginning.

The meds they put me on made me gain more weight until I was nearly obese.

I am now slowly loosing the weight and have about 25lb to loose.

A friend of mine has dysautonomia and she has a weight problem , so I think anyone any size can have this.

[rach73]

Thanks Mirry,

I was getting concerned with seeing Drs - I have been treated dreadfully in the last few years, telling me its all in my head. I was worried that they would think that because I'm overweight I couldn't possibly have this.

I used to be so fit, I walked for miles with my dogs. We worked out I was probably walking in excess of twenty miles a week. Obviously when this stopped the weight went on. I took steroids in 2007 also just for a week and managed to pile on a load of weight. It was like the steroids had turned something on in my head and I was permenantly hungry. Then in 2008 I was on them again, a much larger dose and the same thing happened. I had to eat every couple of hours day or night. I was never satisfied. I hate being this big, but I hated being 3 and a half stone bigger more!

I did think I saw something yesterday about dysautonomia on the Internet that it can go both ways with food, people can lose their appetite or it can substantially increase. Couldn't tell you where I saw it though.

Thanks

Rach

[kayjay]

Hi... I was really thin when I first got sick.... Stayed thin for years. Now I am getting chunky... I think the sleeping, medication and lack of exercise can really make weight control hard. Also before I was diagnosed I could eat anything I wanted and not gain weight.

[issie]

I've had a weight problem --all my life. I think I've had POTS since I was a child and am just getting the proper diagnosis at age 50. I've been on the search for sooooooo long. I feel that not being as active as I would LOVE to be, is the reason for the weight. I've tried keeping food diaries and even my husband says its not what I eat. So, the only other explanation is lack of movement. I also have Ehlers Danlos which is hyper-flexibility and it causes allot of pain in the muscles with spasams. They say I have Fibromyligia too. So exercise is nearly impossible. I'm doing good to still be walking. My pluse rates are in the 100 just sitting still. Of course, on the flip, being unconditioned can make the POTS worse too. So, it's a vicious circle. I recently broke my foot off my leg and am dreading rehab. We'll see how that goes. Before I finally got my POTS diagnosis, I was treated for Parkinsons for a year and a half. That's not what it was. The meds made me worse. Then they thought I had multiple system atrophy. Hoping for that not to be true, I went to Mayo and got the POTS diagnosis. It makes more sense than anything else. Just starting on the journey to find help. SOOOO, to answer your question -- you can be fluffy, or even more than fluffy and have POTS.

[Noreen]

Hi issie-

Welcome. I can certainly relate to the roller coaster you have been on the past few years with the docs giving you so many dxs.

You have found the right place for information and support. The people on this forum are absolutely the best and the volunteer administrators are angels for their work in making this available to us.

Check out the information and links on the DINET homepage. I am sure you will find it invaluable.

Hope today is a good day,

Noreen

[Simmy]

I was always thin, 5'10" and 140lbs (10 stone) and could eat anything and everything and never gain weight (which always pissed off my wife). Since POTS started about two years ago I've gained about 25lbs and now, although I've lost my appetite and have to force myself to eat, every little thing I eat goes right to my belly and it bloats, while my weight increases.

In the old days, if I went a day without eating I'd lose an easy two or three pounds and I ate about 3,500 calories a day just to keep from losing weight, now I eat less than 1,500 calories a day with a far healthier diet than ever before, and it's a struggle to stay below 165lbs.

I'm sure it's due to both meds and lifestyle, along with whatever POTS has done to me. There's nothing I can do about the meds I need to regulate my hr and bp, but I still try to walk on the treadmill for a few minutes at a time, a few times a day, which of course is nothing compared to the enormous daily calorie burn in my former life in the construction field. Then again, my heart gets a fantastic daily cardio workout, shouldn't that count for something?

[rach73]

Thanks for all your replies. Its interesting to see that its not just a thin persons disease.

I've struggled to maintain a healthy weight all my life. As soon as I left home the weight slowly crept on and its been a battle to get in control of it ever since. I was always reasonably fit as I have three dogs and used to walk the legs off them! Now with limited mobility and even though I hardly eat anything compared to what I used to, Im still overweight.

Thanks again

Rach

[anna]

I was 5' 8'' (lost about 1 1/2 ''!!) and never went much over 130 I ate big portions of food, more like my male friends! All my friends always commented on the amount I would eat, but I got shaky etc. if I did not eat enough and I did not put weight on so there must have been a reason behind it. Any way now after 3 children and going into early menopause I became very over weight, with no signs of it shifting I might add. This happened to my mum and my gran.

The odd thing is I am diagnosed with EDS my geneticist believes that my mum and gran most likely had HEDS as well, my mum has some odd ANS stuff going on and always has, as did my gran. To add to this my dad?s side of my family the geneticist said most definably had CEDS, they all were so thin when young but at around 40 put on lots of weight, males and females. Also they all had odd ANS things going on from young too. I think there is a link with all this, may be something going on, on micro vascular level.

The funny thing is when I was finally referred to a cardiologist I was told all my problems were due to me being overweight even though my GP had put me on meds for very high BP swings arthmyia, angina type pain, etc, when I was around 130 pounds. Oh yes,! and my kids have been diagnosed ANS dysfunction and are ravenous sticks on legs (when not having GI problems) as well.

[Guest tearose]

I have always been in the normal weight range but could eat hardy and seemed to burn it all off. I keep good muscle tone usually too, unless in a relapse. I think that is when the muscles turn to fat. I don't know which weighs more but I try to not loose muscle to fat!

[rach73]

Thanks for your replies.

I'm 5ft 9 thankfully, otherwise I would have been quite rotund!

My sister has ME and I believe she has a lot of dysautonomia symptoms also. She has problems with her heart going too slow, then her heart racing. She has worn a holter monitor and they have recorded that. I think many of her symptoms are related to low blood pressure as well. We are like chalk and cheese, she has always been able to eat what she wants and is underweight shes 5ft 8 and about 130lbs max, where as I take after my grandparents and only have to look at food to put on weight!

Thankfully I am at the lightest I have been since 2007, but thats not down to dieting its mainly due to nausea and vomiting. But as the Drs say they can't see I have lost weight, despite the fact its heading towards 4 stone now, and they have weighed me reasonably regularly over the last year with 6 hospital admissions, they don't seem to believe me.

Thanks

Rach

[mountain girl]

I have been quite frustrated with the weight gain since having pots. Have gained 10 pounds and just do not seem to be able to lose it. Trying to walk more and watch what I eat, but it seems so hard.