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Thanks For Listening


Sandra
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Hi Everyone

I am feeling very fed-up at the moment, and just needed to 'talk' to someone, and I know you lot will listen.

I was diagnosted with POTS by Prof Mathias last summer, in October last year I was diagnosed with EDS (Ehlers-Danlos Syndrome) type3 by Prof Grahame. I have arthritis, I have also had Coeliac Disease for the past 8 years. I also suffer with IBS. Due to the Coeliac, I have Osteo-porosis.

At Christmas time, I was in a lot of neck pain, so bad I could barely move. My Rheumatologist diagnosed Cervical Spondylosis, so I have been having physio on my neck, which is easing the pain. The pain in my shoulders, well, all my muscles actually has been terrible. In Febuary, my Rheumy diagnosed me with Fibromyalgia. A week or so after, I broke down and cried in my GP's surgery... he diagnosed me with depression.

I am sat here at the moment feeling very fat and sorry for myself.

I am on Fludrocortisone and Sotalol & 75g Aspirin for the POTs, Etodolac for the arthritis, Colofac for the IBS, Actonel and Adcal D3 for the osteoporosis, and Omeprazole to protect my stomach from the tablets.

When my GP diagnosed depression, he put me on Amitriptyline 50g, as this is meant to help with the Fibromyalgia too. The pharmasist refused to dispense the Amitriptyline, as she said it interacts with the Sotalol. She rang my GP, who rang Prof Mathias. He said I can have both as long as I have regular ECG's to check my heart isn't being affected. I have them every two weeks.

Since Christmas, I have put on a stone and a half. I am usually a size 10 to 12, but know I'm having to buy a size 14 (I'm 5'2"). I can't exercise to get rid of it, I have a healthy diet anyway, due to me being Coeliac, I can't eat processed/junk food. I think it's the medication thats doing it.

The weather has been really nice over the Easter, and the past few days, so I put a pair of shorts on and sat in the garden. I was horrified over the sight of my legs, I haven't really seen then during winter, as I tend to wear jeans, I looked at them and started crying...again!

They go a horrible purple mottled colour, I have big reddy/purple swellings at the side of my ankles. I don't like to bother my GP with this, so I have been reading up on the internet. I think it's called Pooling. As I am wearing sandals with no socks, the blood must be sitting in my lower leg/ankle area.

Is this 'normal' for pots sufferers, do any of you wear skirts? Is there anything you can do to help it? I have been told to drink a lot, and have a lot of salt, which I do, but my legs still go purple.

Another thing that bothers me, is my memory. I forget the most stupid things, I couldn't remember what a spoon was called yesterday, I asked my daughter to bring a 'stirry thing' for my cup of tea!

Sorry to have a whinge, but as I said, I am feeling very fed up at the moment. I can't go to work anymore, I am not allowed to drive anymore (due to my fainting) I can't even go out for a walk, due to my blinky painful knees and hip's due to the EDS.

Apparently, life is meant to begin at 40. But that's when I started to go downhill (I'm 45 now). I am really lucky, in the respect I have a wonderful supportive husband, and three very helpful teenage children - one of which can drive.

It has taken me just over an hour to type this, as I keep pressing the wrong keys and typing gibberish!

Sorry to moan, I think I'm just having a bad day.

Thanks Everyone for listening.

Sandra X

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sorry hon.

I recommend acupunture for mucsle pain. I was in a car accident and develp\oped arthritus, had pain everyday for years. I went to acupunturist for something else. But while I was there, he did the neck. The results were AMAZING. He told me that I my mucscles got involved because I was favoring the neck because of arthritis. Unbeknowns to me , the majority of my pain was muscles.

I do not have EDS, so I'm talking about stiff or knotted muscles.

I would think compression stockings would be a good idea- re your ankles.

good luck!

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Sandra,

I'm so sorry your feeling so badly. We truly do understand. I really don't have any advice, just wanted to let you know another listening ear was here :)

- Tammy

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Thankyou for your lovely kind words, you all have cheered me up no end. It's a comfort to know that you people out there actually know how I am feeling.

The trouble with this condition is that it isn't visible. If you have a broken arm, you have a cast on it, and people can see the problem and sympathise. But when there is nothing to see, people tend to think there is nothing wrong with you.

I suppose compression hose is the answer, can you get them on prescription?

As I have the yearly pre-pay certificate. If I had to pay for every item I get per month which is between 18 and 25 items, (including all my gluten free bread etc) at ?6.65 an item I wouldn't be able to afford to be ill!

Thanks again

Sandra X

special thanks to you Pat X

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Hi Sandra (((((HUGS))))),

sorry to hear you're having such a rough time. I'm in the UK too and have just started wearing compression stockings. My cardiologist referred me to the stocking clinic at my local hospital where I had the doppler pressures in my legs checked and was measured. The clinic gave me 2 pairs of stockings that they ordered in for me.

Your GP can prescribe certain types on an FP10 prescription form but I think the stocking clinics can prescribe a wider range. I think the "allowance" is 2 pairs every 6 months so you have to wash them out daily. It is important to get measured properly. Don't bother with the "flight socks" that you can buy in the chemists - I had been diligently wearing these for 2 years but now realise that compared to medical compression stockings they do nothing at all.

At the moment I wear knee-high stockings, the clinic were reluctant to give me the 40mmHg ones that I requested but I have adapted to them very well. Next time I go I will ask to try some full leg ones to see if I can tolerate them.

When you are sitting (especially outside) I'd advise you to sit with your feet elevated, if you can get your feet higher than your hips it will help blood to flow in the right direction.

Hope you're feeling a bit better soon,

Flop

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Hi Sandra, we share many diagnoses. Sorry you've joined our ranks but hope you can find help here.

Accupuncture didn't really help my pain--but massage really did, as did physical therapy and working out with a trainer at home, mostly with exercises that are done while i'm lying down.

Nina

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Hello Sandra,

Sorry you are having a bad spot at the moment, I agree with you that it is so good to find other folk that know how you feel and do not pass jugment on you, THANKS guys.

I noticed you are on small dose asprin for your POTS, this may NOT be of relevance but myself and my kids have EDS and some ANS dysfunction I have found I can not tolarate any asprin at all or other non steroidal anti-inflamateries(sp) it leads to more bleeding issuese that come along with my EDS I wonder if this might have anything to do with the swelling you have on your ankle. I know pooling is quite the norm with POTS and I know that some of us EDSers get some odd bleeding stuff going on, so i thought i would mention it.

Have you taken a look at www.ehlers-danlos.org forum might find some useful posts on there too.

Take care,

Anna

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That's a very intresting point you made Anna.

When I saw Prof Mathias on 20th Feb 07 for a clinic appointment, I asked him if I really need to take the Aspirin, as I am a Coeliac, and it can/does cause an upset stomach etc. He said I need to carry on with it, as I still have quite bad tachycardia, and it ensures that my blood is thin enough to cope (or words to that effect)

I take 40mg of Sotalol in the morning. I was on 40mg in the morning and 40mg in the evening, but I was getting so brachycardic, and feeling completley unwell, that he halved the dose. Now the Sotolol tends to wear off by about 8pm, and then I start to feel a bit tachy. I'm usually in bed by 9pm, so it's not too much of a problem.... until I get up in the morning!

Apparently this is 'normal' for people with my conditon, and I will just have to learn to live with it!!! He said try to get out of bed slowly!!.... is there any other way? I have arthritis and EDS, I don't exactly jump out of bed and jog down stairs! And if I feel dizzy, lightheaded or feel like I might faint, no matter where you are lay down.

This is ok in theory, but I was in the middle of Tesco with my husband doing the weekly shop, and people were panicking. My husband had to tell them not to get an ambulance, that I will be 'ok' in a few minutes. It's all very embarrassing.

Another thing I have noticed, I bruise really easy, I only have to brush up against something and I have a mark. I don't know if this is due to the aspirin? thin blood etc..... or could be EDS, or could be POTS.

Thanks again everyone with your words of support. and thanks for the EDs website link.

Sandra X

Karen, if you are reading this, I saw your message then it disappeared. I guessed it was the Amitriptyline causing the weight gain. I have gained 9lbs in 4 weeks!!........ I wonder if you lose weight that quickly when you come off it?!!

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Sandra, amitriptyline is notorious for weight gain, so my unprofessional guess would be that it's the culprit for your weight. I was also placed on it many years ago for fibro. I don't know how much a "stone" is, but I gained 40 pounds in about 2-3 months. I was taking three times the amount you are, but had to stop as it gave me tachycardia. DUH, but this was before POTS was rearing it's ugly head.

I'm sorry you are in so much discomfort. Times like this are so hard to get through, but we always seem to manage it. I hate that cliche...This too shall pass...but it does. I'm glad the doctors are at least addressing your problems and not just blowing you off. I hope things brighten up for you soon. If you find you are more tachycardic, I would suggest discussing whether the ami is worth taking.

good luck sweetie...morgan

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At my very worst moments I wanted to check into a hospital and say please fix me, I am broken. It is sad and it is okay to cry. When the tears stop, make a list of all the things you like about your body and what it CAN do for you. I remind myself that my body may be causing me lots of trouble but it also took me to amazing places before this began like over hurdles (literally I was a hurdler) and the maternity ward, and up mountains.... Now I am slow and a bti breatless, ever so forgetful and thick in the middle but I try to overlook all that!!!! Hang in there!

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The best way I found to cope with things I hate in my body (like the weakness and limitations) is to #1: don't look; and #2: don't think. I guess that sounds like the little kids who close their eyes and tell you that you cannot see them. But sometimes a little blindness is a good thing. Pretend. If you cannot change it, then pretend until you can. Like for me, when it's working well, I feel that my body is not me...it's attached to me and I carry it around and ppl see me through it...but it's not who or what I really am. I guess this is a bit philosophic...but I have to get out of my body to get my mind out of the disease. Think about the things that really make you you...it's not the purple legs or dizzy memory. What do you love? Why do you keep going? These are things that make you you...I believe.

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Thank you to everyone, such comforting words and great suggestions as how to cope.

My mind still thinks my body can do things it could do a few years ago, which is why I think I am so frustrated with myself all the time. Simple everyday household chores, are now such a challenge.

I think the reason I felt so down at the moment, is because I am finally accepting the inevitable, that I am not going to get better, and it's only just hit me.

Over the last couple of days I have decided I have to just accept it, my daughter took me out this morning and I bought three new summer tops in the next size up, a size 14. So from now on, it's think positive, and not to look back at what I used to be able to do.

Thanks again for your support, you lot are fantastic

Sandra X

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