Today I Cried For The First Time In 35 Years .

[willows]

Crumbs Spike what do I say ...........thank you for your kind words and I'm rather overwhelmed by your reply to say the least.

I'm sure you will all agree that this site is one of the best to write on and to read, we all in our own special way try to help each other , be it with names and addresses, ideas to assist or just by being seen by posting replies as support and a comfort , and boy have you guys given me comfort the last few days ............thanks again..

I do try and not look at this site as a blank canvas waiting to be written on , but instead that YOU who read my posts are an old and trusted friend who is sitting here with me and we are nattering away over a cup of real coffee and a large home made chocolate cookie its the way I am and have always written to people, my husband calls it ' conversing to my invisible friends again ' when I sit and natter away to the computer as I write.

Today the jolly old feet are bad again, this time a large vein on my left foot has widened and loads of the spots are clustered around it ...........mmmmm thought I was slightly off last night , do you know its very strange but these nights when I just cannot sleep at all seem to coincide with something abnormal going on in my system and I can normally see something wrong by morning its only just occurred to me that !!!!

So 'troll feet 'here is now tired from her escapades on the WWW last night , never mind hubby's cooking supper tonight to help my feet and stop me burning, scolding, hitting, dropping , falling , tripping or stabbing myself ...........again!

Dont know what he means Willows ............wobbling about looking for the troll who's feet these belong to !

[LindaJoy]

Willows, my heart goes out to you. My doctors at home don't know what to do with me, either, so I can empathize. That's why I'm here at Mayo, although they don't know much, either.

I don't know what to tell you except that you have my arms wrapped around you in a very, very big hug. I know that doesn't help much. There comes a time when all of the hugs, kisses and comforts aren't really what we want--we want answers. I wish I had them for you.

Just know, as I know, that you are not alone and we're here for you.

Love, hugs, kisses, and best wishes,

LindaJoy

[sjprice23]

The 4th option did have another way of raising money , but hubby said 'considering the state of yourself , your heart and the pain selling your body for cash isn't an option dear' ......................OH ! what a cheeck men .

Okay, first of all, LOL!

My boyfriend and I have joked about this many times as a way to get money ~ so now, I've been trying to convince him to try this since my health is falling, but he keeps saying that our corner isn't busy enough to get enough money!

What I get is something very different , if you have this and have been diagnosed , let me know will you...........right I get two things sometime together , but sometime ( mostly ) completely separately and not linked ( one doesn't set the other off)

1. A head pain at the front ( above both eyes) and slightly over the head, with such banging pain in time to my heart beats, BUT only when I lay down OR sit down..........when I stand up I can count 1,2,3,4,5, seconds and ...........GONE.

I then start to move and I want to be sick, over and over again a bit like motion sickness.

Lay or sit down, 1,2,3,4,5, head pain is back again just as bad.

2. Face /neck/arm pain ,this takes in my right eye, ear ,nose, teeth, neck, jaw, and sometimes shoulder and arm. It can go on for hours and is horrible no pain killers help , nothing masks it , BUT a shot or two of GTN helps as does laying down to rest ( heart , I know dont even say it )

And secondly, I have almost to the tee, the exact same problem, but I do not know what it is either and all the docs are just beginning to look into it now, so I will let you know if I find anything out, if you would be so kind to do the same. Or anyone else on here as well!

I don't know if this is true for you or not as well, but the pain that I get in the front of my head, above my eyes and on up, that throbs like my heart beat feels like my head is being crushed by some sort of steel contraption; its that painful for me! Then, the face/neck/arm pain...the worst of it for me, where I first notice it is in the ears and teeth, then it travels to my shoulders/neck...And NO! No pain medicine I've tried so far helps it. I just have to suffer through it. And I've tried completely hydrating myself and upping the salt intake to make it stop like its something to do with POTS or being dehydrated, but nothing has even come close to getting rid of it or deafening it at least.

The best way I can describe the worst of it is just as I said, like my head is in some sort of steel contraption that you would see in a horror movie or something, that is just crushing your head causing your veins to beat, beat, beat like when you constrict circulation in your hand by wrapping your hand around your wrist tightly and the pulse feels like its going to jump out of your wrist...but with crazy pain!

So, anyone that gets this...please help willows and I out! It's not fun AT ALL!!!

[willows]

OMG Sjprice thats it a steel helmet with screws in the top getting tighter and tighter ..............

It is a pain that is hard to describe, but your near enough.

Do you know its very strange, we are all interlinked on this site , the whole lot of us , get something of each other symptoms , yet these symptoms cannot be diagnosed by doctors...........which is even stranger !!!

I used to think I was the strange one, as do some of the consultants in the hospital I attend , they just wouldn't believe anyone can get such strange pains In such strange places and at such strange times..............well they will jolly well believe me now as most of the 'abnormal ' things I've posted on here , you guys have in one form or another or 'spot on'

This makes me feel much better because I feel ' normal ' , well you know what I mean I'm ..................normal in the condition we have .

Willows.

[wibbleway]

Willows.

My post was "Bad Days are so Depressing" so I understand how you are feeling. Just know that we are all here to support and encourage each other. My doctors have also said, "There is nothing more we can do." It is hard to adjust to that when inside you want to do so much but your body can't. Like others have told me just hang in there and keep in touch with all of us. Support from others is a life-line.

Cathy

[kholdefer]

I'm sorry you're having a hard time. If this helps, I was diagnosed with ITP when I was a sophmore in high school. Did they test your iron as well? Have they tested your platelets? Because I had such low platelets, I also had, like, no iron in my blood which made me extremely exhausted. They had me on the prednisone for a year and finally decided to try removing my spleen (they thought my spleen was overreacting and killing platelets instead of bacteria). I have had normal patelet counts ever since. They should probably do a bone marrow test too, if it comes back that your platelets are low. I used to be covered with petechia (sp?). The weird thing is that a few months ago, I had an outbreak of petechia on my face and wasn't sure why. Maybe it is associated with your other stuff somehow.

Its hard when doctors don't know what to do, but I think it is awsome the your doctor admitted that they didn't know what to do, instead of just telling you some bogus answer, or that nothing was really going on.

Best Wishes

Kady

[willows]

Hello Kady hope you are enjoying yourself on the site and getting some help .

Thank you for your reply , I have Petechia half way up my legs now the doctors are sending me to see a Coagulation Clinic to check my clotting factor and other things, as i recently remembered my mother was a haemophiliac .

They did pick up I was lacking in iron some time ago , and very so often I do go anaemic , but without cause or reason as I dont have monthlies ( total hysterectomy 15 years ago) why I keep doing this they dont know , I take vitamins, minerals , iron .........almost the kitchen sink as well

I am begining to think that as I get older my Pots is getting worse , I have so many things wrong with me now and there's nothing I can do to help myself stop getting others.

But life's OK now and I can cope again, thank goodness.

Willows.

[heiseygirl]

Oh Willows!!

I wish I could help.

I can tell you a bit about the petechiae and how it applies to me. I don't know if it is applicable to you or not but maybe something in it might help......

I have an undiagnosed autoimmune disorder (which probably caused my dysautonomia issues).

Many years ago, before they knew it was autoimmune, I had ITP (idiopathic thrombocytopenia purpurea) which is a drop in platelets. One of the symptoms is petechiae. (platelets help clot the blood to stop bleeding) I saw a top hematologist in Toronto who could not figure out my platelet problem. (Lupus-an autoimmune disease was also ruled out at this time). Even though my platelets came back up to within normal levels, I still continued to have outbreaks in petechiae (along with bleeding problems)

About three years ago, after a bout of rectal bleeding (and my platelets remaining in the normal range) I was tested for Von Willebrand's disease. Now, this is a hereditary disease and I have no family history of this but rarely it can be 'aquired'. You can 'google' it under 'Aquired Von Willebrand' This has to do with clotting factors or lack of. I have too much (again very rare) of factor X1, which disrupts the clotting cascade. (Hemaphelia is lack of factor V111) My doctors believe my problem is caused by the autoimmune disorder which is disrupting the clotting factors. Hence the petechiae.

Most days, I have no problems with it. But if my autoimmune problem is active (and I can tell by the petechiae) I have to be more careful - not a good day to get run over by a bus...... Cuts bleed for longer periods of time and even having blood drawn can leave a bit of a mess if constant pressure is not applied.

Willows, I have no idea if this applies to you or not, but, if your doctor is stumped and looking for suggestions.....he/she might want to look into the autoimmune angle and test your clotting factors. Oh, and just to make it more interesting, clotting factors can be in the normal range but not be working properly (I think this applies to factor V111 - but I am not sure.)

The only medication I know of that helps is prednisone for when the autoimmune issue is active. I haven't taken any in years though because I don't like the side effects. The petechiae and bleeding is just something I put up with. Pain in the behind but so is everything else about this disorder.......

Maybe worth a shot to ask your doctor about?????

Good luck and please keep us updated

Maggs

[willows]

Hello Heiseygirl............I'm somewhat mystified as to why you have printed back to me Maggs post of 7th September ?????

This has already been dealt with by my GP, who is sending me for clotting checks at the specialist blood unit .

Is there anything you wanted to add to the post ?

Willows.