Been Ill For 35 Years.............

[willows]

Hello I'm new here today , thank god I've found a forum that deals with my condition!

I think I've had Autonomic Nerve Dysfunction since I was just 15 , the problem is that all those years ago I was treated like a silly school kid who wanted attention, when in fact I was in pain, sweating and passing out most of the time .

I was first seen in London at the National Hospital in Queens Square when I was just 16 , they knew I was ill but just couldnt figure it out.

Now at 50 years old I've been to **** and back with this condition.

In England its not called by loads of different names just A.N.D. and I was only really diagnosed in 2003..........yes .....3 years ago after all those years of misdiagnosis.

I now have the following problems to deal with each and every day ;

Acute sweats at all times of the day or night, these have been going on before I started the menopause ( just to add more problems to the list ) I must have been sweating myself silly now for 10 years ! ( menopause 6 months ) if a dog barks , I eat food, smell food, drink, laughing , car back firing..........you name it and I sweat , not just a little moist mind you ! like a boxer who has done six rounds for a heavyweight fight , its horrendous to say the least and I soak everything and anything !

I have pain down the right side of my face including, eye, ear ( like pressure/running water) nose, teeth, jaw, chin, neck and glands.

I have pain in my neck and shoulders which is so bad at times it makes me cry out when I move.

I have lower back pain that gets so bad I cannot walk and it goes into my hips/legs/thighs. knees/ ankles and feet .

My arms ,wrists and fingers are all swollen and so stiff I can no longer close them ( I do have arthritis as well)

I get tumours 'popping up all over me' some the size of tennis balls others smaller ( 12 taken out at this time)

I have night blindness and problems with blurred vision, plus two small tumours growing on my eyes.

The headaches I get............... they are so bad when I lay down ( over the top of my head and down my face ) that I cannot stand the pain, yet ...........then I stand up they go 'instantly' !!! then I start to vomit and vomit and vomit ( how nice)

I get chest pains ( like angina ) in which my heart beat drops to below 40 beats a minute and I go grey/blue and my oxygen level drops out. My heart beat is only average 50 normal now , but when I go to bed or lay down it lowers even more. if I get really stressed I can push it u to a whole 60 beats ( whoopee)

I have problems with swallowing food at times , its like someone has there hands around my throat and are squeezing it so I choke .

My intestines are the pits and I get contractions like childbirth, I have problems going to the loo ranging between diarrhoea to chronic constipation. I am also getting incontinent at times now.

I dont sleep much because of the pain , so I am completely whacked all day long, fatigue is so bad that I feel like someone has pulled 'the plug' on me at times and I go white as a sheet and almost pass out.

My blood pressure is so low all the time that I have to be careful I dont stand still for more than a minute or so or I'm liable to fall down ( embarrassing or what ) its abut 50/80 most days now. I have Raynaud's as well in my hands, feet and nose so going out in the winter is horrible and I suffer terrible pain from the cold. But I also cannot stand the heat and get short breathed and get really tired quickly .....so I cant win !

So have you any more symptoms to add ?

Is this the lot for me ? I am getting worse each day as I get older, but will not give up!

I take so many tablets I rattle , but still life is good, I have my children and my grandchild and even though I'm disabled I'm a crazy granny.

I'd love to hear from anyone who has the same sort of problems as myself and will reply to all...............I'm a writer by trade so this is an enjoyment for me.

Love to all and keep smiling ..............Willows

[Guest tearose]

Welcome dear Willows!

You are among many with your symptoms and although each of us has a different story, there is usually a common thread...so know you are not alone!

I think the fact you have come this far is a credit to your personal strength and survival spirit!!!

Keep that!

I went from 1991-2003 until I had a complete dx. Once I had the dx though, I was able to try things that made a big difference. For me, compression and electrolytes are a key to my daily survival and endurance.

Take some time and read through old posts cause there is a wealth of good threads there!!!

For example you will find discussions on profuse sweating and menopause...Hormone fluctuations will make things worse so until you are done with the changes, you will probably keep having more sweats. With summer coming, you may want to get some cooling garment you can put on your neck.

take care, tearose

[mom4cem]

Welcome Willows,

That is a long time to deal with issues without any diagnosis but you are proof that one can deal with it for years, live life the best they can and still have a sense of humor.!

Reynauds, I have had that since I was about 9-10, hurts like the dickens in the winter for me. I cry being outside for more than a 1/2 hr,,even with layers of gloves, socks,,my fingers and toes hurt, turn blue and purple,,my nose too. I feel one step shy of frostbite in the winter, even in the house. In the summer if they are not cold then the heat makes my hands and feet swell and get white dots on the palms of my hands.

Once again welcome

[Ernie]

HI,

I can relate to your situation. I was sick and going to doctors for 30 years before I was diagnosed. For all those years they thoughts I was a nut case. Now I have so many medical proof that something is wrong in my body that they can't say that anymore. They admit that they don't know what to do with me.

[willows]

Thank you all for your support it really does give me a boost. Just woken up from my afternoon sleep, I have to have a sleep every afternoon now or 'what comes around, goes around' and by tomorrow I would be in big trouble and not able to get out of bed ( how unusual)

Tearose; I stated my menopause in Jan 2006, they have been testing me every three months for years as they where convinced the sweats was the change of life , given that I'd had a hysterectomy and lost an ovary. But all was 100% until Jan when I went not onto premenopausal......full menopause in three months, I was so ill I didn't know what, who or where I was , now on HRT and feeling better.

Mom4cem; I have had raynaud's since I was about 10 also , sometimes when I go into the fridge , really quickly without my gloves ( slap my legs) just to get a carton of milk, well I'm sure you can guess! I end up dropping it with the pain. My nose goes very red then blue, and my Hubby ( also disabled ) who is a bit of a joker tells people 'its the gin' trouble is I'm te-total and most of my friends know it .

Eric; I can feel for you , I was admitted into a psychiatric unit for assessment in my twenty's as they felt I was made! and I was given antidepressants ...........( yuck) soon flushed those down the drain ! No I'm not mad or insane.............just a bit crazy , but then I do feel that this is what Has kept me going all this time , my crazy sense of humour!

When I've had a fall ( and there has been loads) I have to look on the funny side, I fell into a hole a couple of years ago and broke my ankle , the ambulance men couldnt believe my hubby and I as we where creased up when they arrived !

Well have you ever tried getting your wife out of a hole covered in cement ( hubby was cementing a deck pole in) when you are just as bad as she is pain wise??? Talk about the blind leading the blind

Kind Regards to all............Willows XXX

Here's what I take every day to survive;

Frusemide . oxycodone . zopiclone . prochlorperazine . climaval . diazepam . mebeverine. clonidine . nortriptyline. domperidone . maxalt melts . metrocarbamol. transtec buprenorphine. Laxoberal . multivitamins. And I eat a very good diet of loads of fruit, veggies, water, wholemeal breads, pastas and lean meats & fish.

[Sunfish]

hi willows -

just wanted to add my welcome. i'm sorry that you have reason to be here but glad you found us. there's tons of info on the forum & on the site itself & great support as well....

melissa

[bttrflyamby1981]

Hi Willows,

I was so glad when I found this forum a couple of months ago!

I want to welcome you and wish you the best.

I have not been dx yet and am waiting (very impatently I might add) untill I do. I believe that I have had these problems since I was 13 but am just now dealing with them on a daily basis for the past 3 years now.

I live a pretty normal life but I crash a lot when I over do it. I have to slow down (a big struggle for me) to have a normal day but I have them if I'm careful. I used to run track and was just a real active person. I still have a pretty active live, it's just not what it used to be. I get tierd very easy and some days I have no choice but to take a nap. I'm 25 years old though and I feel guilty and angry at the same time. My body should be able to handle more, it just doesn't know that I guess. I feel dizzy all the time, sometimes I feel faint as well. I have not fainted though...just come close. It's more of a colaps then a faint. My body just gives out and I go limp. I stay awake though and I'm able to move but it feels like I am being restrained and it takes about 20min to regain my strength. Not very fun but I don't have it happen all the time.

I find a lot of support with this forum and I hope you get out of it what I do. Take care.

~Amber~

[willows]

Thanks to both sunfish and Amby for you posts.

I haven't been up long as I had a Yuck, Yuck and more Yuck night..............spent most of the time watching rubbish on TV and drinking , so thirsty again all night, leg pains ............well dont even go there !

So here I am this morning looking like I've been crying my eyes out all night, bright red ( the whites ) and puffy.

Does anyone else get this ? they feel like I have been drinking gin all night , yet I'm tee-total so thats not an option, I hate having to wear dark glasses for two days to 'cover this up' as people do think I've been crying over something and you cant get it over to them that your not upset !!!

Sunfish whats the goofy skin stuff? I have these strange big brown patches at the base of my spine , sort of scaly ( probably going to turn into a lizard ) and they will not go away whatever I use.

Oh Amby, I used to feel so terrible guilty about feeling 'unplugged' you know the feeling ...........there you are as right as rain doing shopping or eating a meal or just being you ........all of a sudden ' WHACK' and you just want to lay down and go to bed NOW .

I dont feel guilty anymore because one day I tried to carry on and I passed out in town in the main high street. The ambulance men thought I was having a coronary as my heartbeat was so low , I was grey, sweating , they couldnt find my pulse and it was horrendous. My GP when she found out ( bless her ) read me the riot act!!! Although she only knows about AND from things I have collected for her from the net , she knew enough to really lay the law down............so guilty is not a word I use now, and you should write it out of your vocabulary as well...........

Look at it this way :

If you had a broken arm you wouldn't swing on a rope................would you ? .

If you broke you back you wouldn't lift a wardrobe......................would you ?

If you had a contagious disease you wouldn't sit in a cinema..........would you ?

You wouldn't jump into a swimming pool if you couldnt swim.........would you ?

So why feel guilty when you have to stop and rest having done to much with a medical condition that takes your energy?

Surely , if you would do none of the above and they are only 'temporary conditions' , then a long term disabling condition such as ours is not a thing to bear guilt over ?

Just because people cannot see whats wrong with us doesn't make it any less painful or hard to take each day ,and I for one will not be made to feel guilty because outsiders ( those who do not know you) do not see a bandage, a scar, a disfigurement or 'what they believe are sighs of an illness' that is for them to justify in there narrow minds , not for us to feel guilty or hurt over .

Sorry I've gone on about it , but I've had problems with people in this village over my husbands and my own illness.

Must go now as getting upset .........sorry Willows.

[willows]

Am I angry or what !!!!

Just been on the phone to my specialist as I hadn't heard from him since I had a 24 hour blood pressure test done in mid March ( this March)

Asked his secretary whats going on , she replies that a letter was sent to my GP asking them to arrange more heart tests for me , this letter arrived on the 22nd March at the doctors, so why didn't the hospital specialist arrange them ?

Nothing has been said to me, nothing has been done at all at my own G.P.'s.

I also asked the specialists secretary about a letter sent to the London hospital about a test they did that was a 'farce'..............believe it or not this London hospital did a sweat test on me while I was taking the highest dose of Clonidine ( an anti sweating drug) when the test was negative they then said 'ah....you dont have A.N.D.'

My blood boiled and I asked why they had done the test while I was taking drug? They claimed I wasn't taken it....................but you see there was TWO drug charts!!!! They shuffled about and refused to make any more comments about it and I came home really angry with there behavior.

Now local specialist has asked London professor about this test , the local specialist wants to know if taking the drug will make any difference t the test results !!!! Which makes me now wonder if this specialist is qualified !!!

So this London professor wont reply , probably to embarrassed to !

I spoke to the manufacturers of the drug who said to me ( and also in a letter to my G.P) 'this drug stops 99.9% of the sweats so giving her a sweat test on it is lunacy'............thank you drug company for backing me up.

So here I go again, specialists against specialists , doctors against doctors , when will they learn that lying to a patient is not the professional thing to do and they do get found out in the long run.

How I wish I lived in the USA and could get real help with this condition, not a load of doctors who are hit and miss and have an attitude of ' well she's still alive so why worry'

Willows...........angry, upset, tired and just plain fed -up .

[persephone]

I've had similar lack of response. I've had to fight hard to be at University- I have had no help from anyone.

6 months ago I went to London and was told I would be rushed through to a specialist in fatigue because my energy levels have been through the floor.

I have heard nothing since that day. Despite the fact I've had SEVEN hospital admissions since then.

[willows]

Hello Persephone...............I cant tell you how pleased I am to speak to another UK suffer.......you have made my year, I could cry with the sheer joy of having you reply to me. Thank you so much.

I have spent 35 years trying to find someone in the UK who has the same condition as myself and here you are brilliant ( no not the pain and all the rest ) its great speaking to you , nearly fell of the computer chair!!!!

Have you been to the national hospital in queens square yet?

you can ask your GP to send you to see a professor Mathias he may help, he may not!

When I went there I was given a sweat test, while on the highest dose of Clonidine you can possibly take as my sweats were out of control. As I didn't sweat they then claimed I didn't have AND !

Later that day I was going to have a MRI and I suddenly felt ' blar' head went funny ( you know what I mean) and I started to be sick and sick , asked for my anti-sickness drugs and the staff didn't want to know ! Porter came to take me down and I sicked on him , the floor , in the lift , at reception of MRI ...... you name it I sicked on it!

It was then they decided that may be I was ILL after all..................AAAAAAAHHHHHHHHH! my blood pressure was in my boots , my heartbeat was coming and going .yet guess what ?

They left the other patients in the ward ( an investigation ward ) to look after me.........honestly not a word of lie !

I called my husband who organised transport home for me within hours and I came home to recover from the neglect.

My own GP ( brilliant lady doctor) was waiting for me to arrive home , sorted me out and then called the hospital and 'let rip'

I'm finding it every hard to actually trust anyone by my own GP now, how about you ?

By the way I'm just on the outskirts of jolly old Plymouth, so not far from you ! well as the crow flies................best wishes Willows.