Hi, CONFUSED here, Would like some help!

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Hi, CONFUSED here, Would like some help!

Postby FibroAng » Tue Apr 14, 2015 9:34 pm

Hi Guys, I have been registered on this site a while now and have read most post's and have found this site very helpful and glad I have found it.

This is my 1st post, so please bare with me, OK, I had a car accident back in Dec 2011, I was hit from behind whilst stationary, anyhow, had whiplash, painful neck, back etc, had to give up my school job due to panic attacks and the pain I was getting, got sent to physio up at the Hospital for six weeks, did the bikes, bed leg stretches, ball etc, but I could not understand why I was coming home and sleeping for like two days. Going food shopping was the same, it would knock me out for two days, as did hoovering and any type of chores I did, And suddenly I didn't like the phone, letters, noise, light, aftershave, could not find words no matter how hard I tied.

I spent a year in bed sleeping but still feeling exhausted and putting my feet on the floor to get out of bed was really painful, anyway, I gathered the strength (god knows how) to get to the Dr's as I wasn't getting any better, explained to him what I was feeling and had been going through, he was great, he told me all about his car accident etc and I felt he could understand, he told me I had M.E, although he did mention Fibro, but asked me if the Fatigue or pain was more prominent, I said Fatigue, so I went away with instructions to do G.E.T. I thought no way I am doing that, if I can't get out of bed, there is no way I can do these exercises!

I got a book from good old Amazon called beginners guide to M.E/CFS, tried to read it, but noting was going in, although I do remember it saying Rest, Rest, Rest, so this is what I did, then I started to get pains everywhere, neck (still) shoulders, back (still) knees, toes, feet, and I struggle up and down stairs, so back to Dr's, to cut a long story short, I saw about six different Dr's in the practice (as the one that Dx'ed me retired) I din't like getting fobbed off so many trips for this and that, Dr's gave AntiD's, Amytript, Antihistamine (Sinus drip) etc, but none of the Dr's said anything about Fibro or Rheymatologist having to Dx me and so was left since 2012 thinking I got M.E.

Well now I have a very nice lady Dr who sent me for x-ray to find out I had chest infection, has done yet more blood as she suspects Fibro, all normal except for high liver, she isn't worried repeat bloods in two months, she did the Fibro point test but just sort of tapped me, no pain there, so she sending me to Rhemy for formal I suppose Dx finally. It's been a long slog!

So now am confused as to what I have and what rmy will do, and of course give me yet more medication that gives me the hangover the next day! I hope this makes scene and thanks in advance for your input.
FibroAng
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Re: Hi, CONFUSED here, Would like some help!

Postby claudine1288 » Tue Apr 14, 2015 10:19 pm

Dear Confused,
How I feel for you, and how familiar this all sounds. Doctors are still, after all this time, flailing about when it comes to fibro which, it seems to me, you suffer from (maybe along with CFS). Bloods don't always show it, and the last lady doctor who tapped you without eliciting pain probably didn't find the right spots. Fibro often becomes manifest after a virus or an accident (which you had), and fatigue is one of the two disabling features (though with time, and for each person, that can vary). I've had it for over thirty years, and it morphed into different symptoms.
You'll have to try different meds to see which help, and be ready to switch treatment if it is no longer useful. I too avoid exercise as I feel worse when I do it, though it isn't good to stay in bed and not move. You might also get migraines, be sensitive to cold or heat, to excessive light, to loud sounds. The most important thing is to seek friendly company, to be understood by those who live with you, even though it isn't always easy for them to understand how you can look well and feel miserable.
Don't lose faith: there are better moments, it doesn't remain this bad all the time, and with time, you end up becoming familiar with the symptoms. It is essential, however, to have an intelligent doctor who understands that fibro and CFS are complex illnesses.

Feel free to ask specific questions and write whenever you feel like it.
My thoughts are with you,

Claudine
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Re: Hi, CONFUSED here, Would like some help!

Postby natmac73 » Tue Apr 14, 2015 10:33 pm

Thanks for posting this!.....and your reply Claudine
I've been suffering with M E for a year now and Fibromyalgia for a few months or so...
I'm still coming to terms with it all and learning sooo much on this forum!
Stay strong everyone! Hugs x Natalie
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Re: Hi, CONFUSED here, Would like some help!

Postby FibroAng » Wed Apr 15, 2015 3:00 am

Hi, Claudine, Thank you so much for your reply, I guess I will have to come to terms with it all and once seen rheumy hopefully get answers, just about got there with accepting the M.E after all this time and I got my PIP assessment at end of this month so god knows what will happen there, although lady Dr is doing me a letter, so fingers crossed. What is worrying me is Just dealing with all this extra stress is going to make me worse! Hugs to you and Natalie. x
FibroAng
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Re: Hi, CONFUSED here, Would like some help!

Postby juliem » Thu Apr 16, 2015 9:35 am

I think many health professionals just lump ME/CFS/Fibro together. I was very upset a couple of years back. Was being tested for MS.... (fortunately negative) but the neurologist seemed very dismissive of Fibro. In fact only time a doctor has made me cry as I felt he didn't believe in it as he kept bracketing it with the other two. Actually when he wrote his final report he obviously did take Fibro seriously but for him the impact for his field was the same when investigating MS so that is why he was so dismissive in my mind. He said symptoms of Fibro etc are overlapping to those of MS and what he was saying was my problem was that, not MS. He really said if I'd been diagnosed with Fibro then Fibro causing issues but could be CFS.

For me in is frustrating as there are differences.

I hope you have some joy getting help and a diagnosis.x
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Re: Hi, CONFUSED here, Would like some help!

Postby FibroAng » Thu Apr 16, 2015 6:06 pm

Hi Juliem, Thanks for reply, yes, the health professionals really need waking up, it has taken me over two years to get to this point and ONLY by harassing Dr's nearly every week. To be honest I don't care what they call it right now, for me is more important to get the referral, and to be taken serious well that also is great. Now the worry is regarding the PIP assessment. We all know what ATOS are like!!!
Big hugs.
FibroAng
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Re: Hi, CONFUSED here, Would like some help!

Postby cdcrossy » Thu Apr 16, 2015 8:13 pm

my doctors favourite saying is sorry sir its to do with your fibromyalgia i think he just doesn't have a clue or want one
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