Hello all - My story

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Hello all - My story

Postby herbenny » Fri Jul 18, 2014 2:08 pm

Hello all...
I apologise if this goes on a little ..its quite a relief to put it all down.

I am approaching my seventh year living with this but have not had any diagnosis as yet. In fact I have only just managed to get my doctor to make a referral to a rhumertologist. (sorry for the spelling).

Anyway I was a very nervous and timid child with lots of problems with ears nose and throat. Constant ear infections where normal from such a young age. As I got older I was noise and light sensitive even to this day I like to shower in the dark.
Anyway at the age of 16 I damaged my coccyx and then eventually broke it at the age of 18 where I ended up in hospital.

I went on to marry a wonderful man and had two kids who have grown up. I was active always on the go out and about doing things and this is how life 'WAS' . I held down a stressful job which and was juggling family life and to be honest I was doing just fine.

Then seven years ago I woke up one morning with blisters all over the palms of my hands and the soles of my feet. They were so itchy and sore that they constantly wept. The more they wept the worse it was. I was sent to a dermatologist who said it was 'Pompholyx exzma'. It took about six months to heal as I had a secondary infection.

Not long after this and after a traumatic time in my life I developed a pain in my left neck and shoulder to the point where I couldn't move. I could lift my arms up and I couldn't lie down. The pain was so intense everythime I breathed. My doctor was at a loss and prescribed numerous antibiotic/ painkillers etc. In sheer desperation I went to an osteopath who diagnosed 'Tietze syndrome' and apparently can be brought o by stress.

I had always suffered with IBS but it became quite bad and they run test which found polyps on my colon. So this was the start of it all...but certainly by no means the end of it.

Last year I went on holiday with my husband and one day he noticed I had a bite on my chest. I said that I hadn't noticed and the next morning I could not wake up. Bein a poor sleeper I am normally up very early but on this day I simply turned over. I stayed there all day I couldn't move. I went back to work on the Monday and I suddenly developed Flu like symptoms ..it literally hit me so fast.
I went home and went to bed thinkin I could sleep it off. The next morning I was paralysed ....my hands, my legs and my everythin simply did not respond to anything I was tryin to force myself to do. I had a rash all over my leg and was still sensitive to the light.
Paramedics where called to rule out menangitus and I was told I had developed artharitus over nite REALLY ??

Anyway last that week my husband had to take our dog to the vet to have a huge tick removed. Our vet was expainin about Lymes disease when my husband said he could not believe what the vet had told him because it was the exact same symptoms I had in the week before. Back to the doctors again who simply laughed at me and told me that Lymes disease is so rare in this country but she would in fact give me antibiotics.

So to this day I am still no better.......my brain feels like it has candy floss in it. I am so tired all the time...some nihts I sleep 12 hours other nites I lie awake with the restless leg. Some days are better than others. I just had a recent flare up of my wrist. I suddenly could lift my are and even holdin a toothbrush was excrutiatin. My tongue is sore and swollen and I feel so down. My brain wants to do things but my body is tired. Makin a phonecall can make me feel overwhelmed.

My doctor has beenawful through this and has tried to suggest I need anti depressants ...I have told him I am not depressed !!!!. He is sayin all the sypmtoms I have are all unrelated and is makin me feel that I am bein a nuicanse. I have walked out of my surgery twice not in floods of tears because they wont listen.

I am finally seein a rumertologist at the hospital and I hope and pray I have answers ..

sorry for waffling on ... :oops: :oops: oh and about my spellin I am too tired to change it lol xxx
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Re: Hello all - My story

Postby denys » Fri Jul 18, 2014 2:23 pm

Dont worry about the spelling we all seem to be able to work out what you are saying, anyway :welcome: to the forum I hope we can offer you support when you need it. Have you thought about changing your docs or is there another more sensitive one in your surgery that you could see :?: :?: :?: :?: :?:

I hope you get some answers soon :fingerscrossed: :fingerscrossed: :fingerscrossed:

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Re: Hello all - My story

Postby ..:: lisa ::.. » Fri Jul 18, 2014 3:03 pm

Hello and welcome, I'm quite new here too and can tell you no one will mind about your spelling as everyone is friendly and helpful.

My Dr laughed at lyme disease too, I had the classic bullseye bit on my knee around 4 weeks before I started getting distortions in my smell and taste.
I wish I had taken a picture of it but hindsight eh!

Good luck with your appointment and hope you get some answers soon xxx
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: Hello all - My story

Postby FluppyPuffy » Fri Jul 18, 2014 3:19 pm

:cow-wave: :cow-wave: and :welcome: to our little escape from it all :cow-wave: :cow-wave:

Sorry to hear how things have been for you, sadly there are still far too many people having similar experiences to yours, when all they want are answers to what is making them feel as they do :( :( :( :(

Wrt to your GP suggesting anti~depressants, there are some anti~ds that have been found to help with sleep and pain issues as well as depression. These include Amitriptyline, Nortriptyline, and more recently, Duloxetine. Maybe next time it is mentioned, ask him which one he is thinking would be suitable and see what is said as the right one for you could help make a difference.

Hopefully it isn't too long for your appt with the Rheumy :fingerscrossed: :fingerscrossed: :fingerscrossed: While you're waiting for appt day to come round, have a bit of a looky and a read around the place. The boards are full of info and advice, and in amongst it all there may be some useful suggestions for you to try out to see if you can make yourself a little more comfortable.
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Re: Hello all - My story

Postby TeejThorne » Tue Jul 22, 2014 9:25 am

hey hunnie

HUGS for you, it feels awful when doctors dont listen to you, mine did that to me my wrists have been painful since i was 19 and everytime i went to the docs they told me it was in my head, i gave up asking using pain relaif cream (which worked for a while) tablets and heat methods, i finally gave in as i changed my doctors after they failed to diagnose my diabetis for 10 years.

My new doctor listened to me as i am always so tired and sometimes my legs and arms feel so heavy i cant move them. I sleep more than im awake, she did lots of test to eliminate other problems like arthritus etc, she said that I have got FM which was most probably brought on by my diabetis as I have very poor control since i lost my brother a few years back, although better now im still struggling. I have been on antidepressants for 20 odd years so she is trying differnet pain supressors.

I agree with Fluffy if your not happy change doctors it was the best thing that I ever did, I am no way cured but i dont feel a nuisance to my doctors anymore as i can have phone consultations etc it makes life so much easier will be happier when we find a med that works only time will tell.

We are all here for you and I hope your appointment gives you the answers you need. xxxx
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Re: Hello all - My story

Postby herbenny » Wed Jul 23, 2014 6:39 am

Thank you all for you kind and supportive replies.

I am in the process of putting in a formal complaint with my doctors and I am movin to another surgery as I now realise that I am really not being listened to.

I have no idea why I had to fight so hard to be referred to a consultant when all my symptoms surely point to FM and yet they are treatin it all as individual symptoms with no connection whatsoever !!

I had never even heard of FM until last year when one of the doctors mentioned it and yet still nothing was ever investigated. I feel, like many of us I have had to bang on doors (no wonder I have a painful wrist :-P ).

It means so much that there are people out there that understand and are sadly
going through the same thing.
I wish you all well :-D
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