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Postby eggy » Sun Jul 13, 2008 6:10 pm

Hi all

I have just been diagnosed this week. I was told by a online friend that it sounded like I have M.E. and when she sent me the link to a site and after reading it I was inclined to agree with her. I took a trip to the doc's and left with the advice to take paracetamol and ibuprofen if needed, she also told me that on a bad day she could tick off alot of the symptoms I had highlighted that I had. She went on to say that she didnt want me to be putting in a claim! I left feeling let down and humilliated not to mention feeling like a hypocondriac AGAIN. I was told for 8 years that there was nothing wrong with me after countless times going to see her with all kinds of complaints.

Then one day I saw an article in a womens mag and after reading it I thought "thats me" I promptly took the article and myself to the doc's and told her "this is what is wrong with me!" She sent me for relevant blood tests which came back positive and then I had to go and have a Biopsy done, the results again came back positive. I was suffering from Coeliac Disease.

Over time I started to feel better but there was still something I felt wasn't right, 12 months after that diagnosis I was diagnosed as having an underactive thyroid, again given medication, this is going back around 7 years ago. Anyway after me having a bit of an early midlife crisis I ended the marriage I was in and decided I needed to be on my own to deal with some nasty stuff from my past, I was depressed and I always felt I couldnt cope, I turned into a PC potato and I went from day to day in a world of my own till eventually 2 and a half years ago I sought help to try to move my life forward. I was struggling with all things either through lack of energy or lack of interest, debts were in the background being ignored, I wouldnt answer the door and so on. I was helped by a local organisation and they filled in my forms to get DLA helped me to deal with my debts etc and things started to feel a tad better but again I still felt there was something not right.

My online friend pushed me to go back to the docs and to mention the fact that I think I have M.E. again which I did, she sent me off with a script for stronger pain killers and said see how i go on with them which I did. I made yet another visit saying again about M.E. my meds were fine tuned and at last I was being taken seriously. She refered me to the M.E. specialist and I received an appointment for Tuesday 8th. I went in to see the specialist expecting to come out with the diagnosis of having M.E. and I was. I also came out with the diagnosis of having FMS. In a way I was happy as I knew what was wrong with me at last but I am struggling to deal with it and I am finding out how other people react to it. I just feel so alone and like the people who should care and be interested are more concerned about how it will affect them and I think that is so selfish and cruel :roll:

I feel like screaming and stamping my feet. I'm not feeling sorry for myself, i'm just so unsure what the future holds for me :(


edited for clarity gillshutt
It's nice to finally be believed and understood. Diagnosis now given. Sigh of relief and knowing gives the ability to deal with and improve life & situation. I knew it wasn't all in my head :0)
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Postby anne1206 » Sun Jul 13, 2008 6:18 pm

HI, am sure we all felt like this at some point, as you say having a diagnosis seems to make it easier to cope with. just getting others to understand is another thing. LETER TO NORMALS on thi site is very good for making others understand, the main things seem to be to try an remain positive, come into the cafe for coffee and choc cake breaks the monotony and you meet some lovely people, I am fairly new to the site myself but finding it a great help in knowing I am not alone. Take care Anne
durate et vosmet rebus servate secundis///>Carry on and preserve yourselves for better times
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Postby princess » Sun Jul 13, 2008 7:06 pm

Dear Eggy,

I have M.E. and Fibro - if you have any questions you think i can help you with just ask?

I know there are others on the forum with both.

M.E. was not accepted by DLA for a long time, but Fibro is acceptable, as i have both i get DLA and have done for 13 years.

M.E. is more the exhaustion and
Fibro is more the pain.

Although the two overlap at times.

Some Drs think that M.E. or Post Viral Fatigue is just a dustbin for ailment or ailments that they dont know, or cant diagnose.

princess
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Postby eggy » Sun Jul 13, 2008 8:00 pm

Hi all

Thankyou Anne & Princess

I'm finding it hard to remain positive at the minute and probably because since my diagnosis i've been on a bit of a downer, I do feel shattered or maybe exhausted is a better word. I've been tearful to but also frustrated at my partners apparent dis-interest. He told me a couple of weeks ago that he thinks i'm just trying to convince myself I have M.E. so I guess he was surprized too when I told him I have FMS aswell. Aside from that we have been arguing, I feel he expects me to be able to keep pushing myself and when I say i'm knackered I mean that I am at the end of what i'm able to do,,, "ten minutes isn't going to make any difference" was his comment when I had already pushed myself more than I should of, I felt ready to pass out!

I can see I will just have to be very stubborn but I dont want to argue becaus I know that will make me worse, I wish he would realize the same!

Princess, out of curiosity, was you awarded Mobility for your Probs and if so did you get the higher rate? (sorry if i'm putting you on the spot, please dont answer this if you don't wish to)

I already get middle rate care but no mobility as of yet. I have filled the forms in though ready to send to the specialist I saw as he wishes to add his bit onto them which should help. Do you also know if I get awarded the upper rate Mobility will I automatically get higher rate care?

Sometimes I really wish i'd never been born, I have other health problems aswell as the ones I have said ranging from asthma to skin problems. The specialist said that there was something showing up on my blood test results that indicated I have an allergy which will maybe explain the recent worsening of my eczema, and that there was something showing that indicated I might have an infection and also that I might not be benefiting as much from my thyroxine as I should be.

I think i'm still in a state of dis-belief. :cry:

Eggy
It's nice to finally be believed and understood. Diagnosis now given. Sigh of relief and knowing gives the ability to deal with and improve life & situation. I knew it wasn't all in my head :0)
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Postby MISS BUNNYPENNY » Sun Jul 13, 2008 10:16 pm

Hello eggy and welcome. treat this forum as a 'port in storm' reading peoples posts will help you and give you strength because your not alone you have us to turn to / to share the tears and to share a joke or 2
Get your partner to join in and asks questions to/or ask him to read some of the posts. You have been through alot and you sound exhausted as you know depression is part of fibro, When I'm stressed or depressed I try and take a step back and only think about the next hour and built from there/ I don't fight depression any more because I found It made me worse and more tired I accept it now for what it is/ If its really bad I say to my self ok you think you have won today fine have this day but you can't have tomorrow. and repeat It every day.

Even though your post sounds like your at your wits end. Think again reading between the lines you come across as a fighter never giving up and not accepting other peoples wrong opinons of you. You stuck at it through thick and thin. Most people would have given up a long time ago
you didn't you should be really proud of yourself I have always admired people like you. But remember to take a day off to recharge your batteries if it means curled up under the covers for a day or two so what you have earn it. don't feel guilty.

If your specialist is supporting your claim thats excellent that will have alot of influence on the outcome.
Unfortunatley, people are selfish and I have lost many so called friends
and family since my illness, they get scared that they might have to help you even though you were probably always there for them in the past/
It's not your fault and its not your problem its there guilt not yours you have done nothing wrong I know it hurts but try to let it go for your sake it nothing personal its just people being people.
coventry brittle kid
I LIKE WALKING IN THE RAIN -NO 1 SEES YOUR TEARS
LORD=keep your arm around my shoulder and your hand over my mouth....AMEN
Sarcasm-Its beats killing people/
Just when I was getting used to yesterday,along came today.
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Postby mistyblu » Mon Jul 14, 2008 3:07 pm

Hi Eggy
Try and keep positive, i think we all go through the 'why me' thing, i have had FMS for about 5 years not and i still ask 'why me'. I understood that the symptoms of FMS is widespread and Chronic fatigue although i know some on here say they have ME as well, i was told its all apart of FMS.

I see you are from Bolton, I used to live up there, i moved down here about 8 years ago.

Keep positive, there is always someone here to chat with

Regards
Valerie
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Postby princess » Mon Jul 14, 2008 6:29 pm

Dear Eggy

Beleive me we have all been where you are, its not a very nice place and can be quite dark, so you write anytime, anything and someone will be on to speak back to you.
Once you accept this illness, and that takes time, different times for us all, then you start to question, why, what can i do about it.
Depresssion/anxiety are all part of it im afraid, but your GP can help you if you get too down.
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Postby luuluu » Tue Jul 15, 2008 7:46 pm

Hi Eggy

Welcome to the forum :D

I know exactly how you feel about the diagnosis...its a relief to know your not going mad and there is something wrong with you but its scary to realise there is something wrong too. All I could see was a life of pain and not being able to do anything.

I was diagnosed in January and then experienced the biggest flare up ever. I was in denial and wouldnt accept that fibro was here to stay (I still live in hope that one day I will wake up and its gone :? ) and I ended up on the sick from work, having to be treated for anxiety and depression and then giving up my job, I was so low I could't see a way back up. :cry:

But....once I had the diagnosis my GP started taking me seriously and we got my meds sorted and I had some hydrotherapy which helped my mobility in just a few months I feel so much better. The pain is still there but I can cope with it (most of the time anyway :roll: ) and I have got myself a new job which I started this week and I feel like a relitively normal person again :lol: :lol: :lol: some would say I was never normal mind you :lol: :lol: :lol:

It takes time to come to terms with fibro, I still haven't 100% but I've learnt to pace myself and I have learnt how to deal with those who disbelieve in fibro and think I am just lazy :shock:

Take care

luuluu
xxxxx
what other people think of me is really none of my business
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