Newly Diagnosed

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Newly Diagnosed

Postby Kriistiee » Tue Oct 20, 2015 9:02 pm

Hello everybody,

my name is Kristie and I'm 23. I've been having pain symptoms for around 4 years now and have been back and forth to the doctors. It was only today that a new doctor considered that I may have Fibromyalgia. I've been googling my symptoms for ages and thought I may have Fibromyalgia but now it's been spoken of. I'm in pain every day, in my arms legs and neck (to start). I've never met anyone with this condition and basically was hoping to connect with likeminded people who know what I'm going through. How were you diagnosed? How do you cope with day to day life? What Are your symptoms? Thanks for reading
Kriistiee
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Re: Newly Diagnosed

Postby Garyl » Tue Oct 20, 2015 9:22 pm

I was diagnosed quite a few years ago now by a specialist in arthritis, and has progressively got worse effecting my hands more and more , since i was in hospital recently for nearly six weeks i have been given a cocktail of pain relief that does help, But i found you hve to try and cope
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Re: Newly Diagnosed

Postby jargirls » Tue Oct 20, 2015 9:35 pm

I'm 38 and was diagnosed two months ago. I'm on antidepressants for the pain, I still work full time, at first I was in a lot of pain after work but most days I can get on with looking after my three children after work. Luckily they are 9, 10, 14 and now have to help clean at the weekend.

I was diagnosed after having heart palpitations which gave me a heart attack. I was lucky really my heart attack was march and because I was feeling worse not better I was referred to a rheumatologist and was diagnosed in July.

My body started feeling pain and I have trouble with brain fog, not saying the right words, spacial awareness and problems regulating my temperature. I get very tired but have insomnia most nights. When the pain is bad I take codeine.

I have never met anyone with this condition and online those I have spoken too aren't working.

Ive found heat really helps and I sleep with a hot water bottle on my chest and have a hot bath sometimes twice a day.
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Re: Newly Diagnosed

Postby Kriistiee » Tue Oct 20, 2015 9:50 pm

Thanks for your replies. I've been battling for years now. When I first recognised the pain doctors thought I had arthritis. I couldn't walk and my ankles were swollen. The pain then went to my knees and elbows. I suffer from headaches and tingling limbs but I never connected the symptoms. After loads of tests in went back to the doctor and he said "oh, it's just general wear and tear. There's nothing wrong". I went home frustrated and for tso more years resigned myself to the fact that the pain was all in my head and I was just being silly. At times I would sit on the sofa and wake up 2 hours later not knowing what happened. Finally I went back to a new doctor and she seems to be really taking me seriously. I have great difficulty remembering things, I'm constantly tired and have no real motivation to do anything (on my days off). This has caused a huge rift between me and my partner as he says "the doctor said there's nothing wrong so there clearly isnt". I hope this will give me a chance to prove to people that I'm not lazy and I haven't been faking the pain. I look forward to reading more posts :)
Kriistiee
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Re: Newly Diagnosed

Postby Butterfly8588 » Tue Oct 20, 2015 10:04 pm

Hi Kristie,
I can really relate to you, I'm only 27 and have had Fibro for over 6 years, although only diagnosed in 2012 (i think). My journey to being diagnosed was a really long one. I saw 2 neurologists, had 2 MRI scans and countless drs before being diagnosed. I was even on the cusp of having brain surgery after being diagnosed with something else first. I'm so glad i said no!

I suffer from a whole range of symptoms: pain, fatigue, sleep issues, memory/concentration issues, excessive clumsiness, costochondritis (although that's never been definitively diagnosed) the list goes on. I found a list once of fibro symptoms and was completely overwhelmed how many of what i considered my little quirks have been reported in other fibromyalgia patients.

How do i cope? Well it's probably not the best time for me to be giving advice at the moment, I'm having a flare up and am struggling to cope myself. However ordinarily i just try to do things at my own pace, i rest when i need to and try to muddle through as best as i can. I know it sounds silly but you can learn to live with the 'everyday' pain. Flares are harder to manage and, as some people have told me before and i struggle with, you have to be selfish and learn when to say no. After all these years i still struggle with that.

How did yours start? Mine was literally out of the blue, i woke up one day with terrible pain in my face (of all places) and it went from there really. I had had a bought of Bells Palsy 18 months before though so i think it was just a weak spot for me. My legs are the worst place now! Talk about travelling pain.

I don't really take any pain killers anymore, just some Naproxen when i can't stand it because i found none of them made any difference whatsoever and the side effects i had were horrific. Even the Naproxen doesn't always take the edge off and sometimes makes me ill. What medication are you on?

If you ever want to PM me for a chat, feel free to. I hope you manage to find some relief soon.

Gentle Hugs xx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Newly Diagnosed

Postby migrembe » Wed Oct 21, 2015 11:09 am

I was diagnosed at 48 after a fall downstairs, I had had ongoing worsening symptoms for 7 years before that. I am now 52. Because of the fall and the impact that the Fibro and chronic fatigue has on my life i have had retire from my nursing job. I am also hypersensitive to most of the prescribed medication, so I can't take them.

This is the advice I would give to you. Try and keep working, even if it is only part time. Forget about mad exercise routines and take a walk every day. Get out of bed and stay out of bed for as long as you can each day, but if you need a nap take a short one. Learn to meditate and listen to your body.

The pain comes and goes. The more body stress you experience the worse it seem to become. So if you go to a friend's party one evening, expect to be in bed the following day. It is not going away, none of it although you may experience periods of easing, if you do too much it will all come back twice as bad. Take pills only when you need then. Try different ones out slowly, and unless you have a severe reaction to something try and take it for at least 6 weeks - that's medical advice for you!

Now someone said it to you may experience a period of grief, your life is not the same any more and it takes time to accept the change. Read, learn, ask questions of those who already have it and then work through all that information to find what works for you. Try the quack pills and potions and diets if you want, they don't particularly work, but they probably won't harm you. Unless you know for certain you are sensitive or allergic to a certain foods i wouldn't cut them out of your diet, but i would watch out for artificial sweeteners, such as aspartame found in no-sugar drinks and foods and soya.

I hope that it useful. Come back here often, at least in the beginning. People generally want to be kind to you here because they understand. expect your GP not to have clue, but try and see the wise one as much as you can, at least they seem to understand what may be going on.

One last thing, before you say 'you have it' wait for the diagnosis.

Take care :hugs: Beverley x
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Re: Newly Diagnosed

Postby Kriistiee » Wed Oct 21, 2015 9:01 pm

It came on suddenly,

We end away for the weekend and the day we got back I had a twinge in my ankle like I'd twisted it. The only possible cause I thought was jumping off the train too quickly. It then accelerated to not being able to walk, relying on my daughters pushchair as a crutch and not being able to bend my elbows to brush my hair. I'm ok now, the pain is a constant but some days are ok. (I didn't fill my pain diary in last weekend!!) today I'm having a bad day. I wanted to nap but I ended up shopping with family, I'm really feeling it now. Everywhere hurts and I feel exhausted. It's difficult for me not to work full time as I have a family to provide for (my partner is a stay at home Dad). I work day and night shifts too which my body struggles to deal with. Thanks for posting :-)
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