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The UKFibromyalgia Forums • View topic - Newly Diagnosed & More than a little confused?



Newly Diagnosed & More than a little confused?

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Newly Diagnosed & More than a little confused?

Postby mrshitch » Mon Aug 08, 2011 11:01 am

Hello All ... I'm new to the forum and to Fibromyalgia. I will briefly introduce myself, explain my diagnosis story, then I have a few questions that I hope others are able to advise me with!! Sorry if its long winded, seems the only way I can expain things lol!

I am 25 years old, female, mother to three young children (ages 8, 4 and 3) and I usually work 16 hours per week in a retail clothing shop. At the beginning of July I got married to my partner of 7 years and we had a wonderful honeymoon/first holiday away.

Upon my return to work after 2 blissful weeks off - I found myself in agony after the first 4 hour shift back. Not overly unusual as I have had recurring problems with my back since a minor RTA in Sept 2007. I carried on like this for about 5/6 shifts, by which point I was pretty much dead on my feet. I was needing to rest in the day (never done this before, ever!) and found myself falling asleep for a couple of hours each afternoon that my children were in childcare, and embarrassingly, sometimes when they weren't.
I called in sick to work when upon waking in the morning I found it took me over an hour to 'unstiffen' myself to get out of bed, by which time I was exhausted and already in agony (about 8.30am).
By my 3rd day off work I called the doctors to make an appointment - this was triggered by being so wiped out from cooking dinner the previous evening and then from loading the dishwasher that morning, it had gone beyond a joke and I felt pathetic being unable to do these things without needing to rest afterwards.

I had a rather fast appointment with my GP (it was during the Sit and Wait Surgery) I explained all my feelings and symptoms from a list/diary I had written (which hurt my wrist and hand to write). The doctor was quick to diagnose Fibromyalgia, after questioning me about depression etc. He diagnosed the SSRI Citalopram 1 x 20mg per day and said to continue on with taking my Tramadol as and when needed for pain relief. He also signed me off of work for a week. And wanted to see me in 10 days time.

Today is the day that I have returned to the Dr for my follow up appointment - he had hoped that I would have been slightly improved since my last visit however my symptoms have stayed pretty much the same, sometimes worse than before. He has decided that I should now take the Citalopram twice a day instead of once. And to continue taking the Tramadol at night (it helps me have a deeper sleep, but doesn't take the edge off the pain in the daytime, so it seemed a waste to take it). He wants to see me again in another 2 weeks time and has signed me off for this time as well. Whilst there I expressed my concerns about Fibromyalgia being incurable, as I have read this in every document I have seen about the condition. He responded that he believes it can be cured, and that only one of his patients has had it long-term. He believes that with the aid of medication for 3-6 months I should be feeling much better.

So, now I am utterly confused. I trust my GP, as he has been my doctor for an awfully long time, and he has helped me with any problem I have had. I also felt lucky to have a doctor that diagnosed FM and believes in it - as I have read the horror stories some people have had trying to get a solid diagnosis. So ... has anyone out there ever been cured of their FM? Or had a Dr that believes it is possible? Its a wonderful thought, as only weeks in from starting to feel this way, I can't imagine having this forever. But I just don't know what to think?
Any responses welcome ... would like to hear other peoples early days stories too, as I feel this came on soo suddenly with no real explanation or obvious reason - it's kind of taken me by surprise!
Thanks for reading my first post/essay! :)
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Re: Newly Diagnosed & More than a little confused?

Postby shazq » Mon Aug 08, 2011 11:33 am

Hello :welcome: to the forum :wave:

Fibro can be controlled by a combo of meds but there is no cure for it. :(

It will take you some time to get your head around it, i still cant fully accept it after almost 3yrs diagnosed.
you go through different stages of anger, frustration, its like grieving for your old life.

The best thing to do is to read up on as much info as you can on fibro so you know what you are up against.

Any questions just ask. :wave:
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Re: Newly Diagnosed & More than a little confused?

Postby mrshitch » Mon Aug 08, 2011 11:39 am

Thank you for your reply ... what you have said makes sense from all that I have read - I just can't understand why my doctor, as a medical professional doesn't accept this.

I had started to try to understand Fibromyalgia, to be able to properly explain (lol, whatever that actually means) it to friends and family. I waited til I had read lots and lots of things, all pointing to pretty much the conclusion that you said.

Then the doctor goes and confuses me and tells me I could be better in 3-6 months - I just don't get his logic, why diagnose something as Fibro then tell me a recovery time, when ALL other info (including NHS CHoices - which was my first port of call) says otherwise!!

Arrrgh, this is winding me up and I wish I could stop thinking about it!
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Re: Newly Diagnosed & More than a little confused?

Postby shazq » Mon Aug 08, 2011 11:58 am

Hi
We agree, we get very :evil: when we hear doc`s who say that in 3 or 6 months time you will be ok :evil: when on HNS choices they even say there is NO cure. :facepalm: :facepalm:

You should print out that info and ask your go to read up on it. :clap: :clap: :facepalm:

It makes a big difference to have an understanding gp when you have fibro, as finding the right meds to suit you can take a while, you might find you will have to go through a couple before you find one or a combo that will suit you, we tend to be sensitive towards meds and always get the side effects first.
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Re: Newly Diagnosed & More than a little confused?

Postby denys » Mon Aug 08, 2011 6:27 pm

Hi Mrshitch and :welcome: to the forum I agree with Shaz and cant really add anything else to the advice she has given :fingerscrossed: :fingerscrossed: your doc realises his mistake :wave:
Denys

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Re: Newly Diagnosed & More than a little confused?

Postby mrshitch » Fri Aug 26, 2011 12:40 pm

FOLLOW UP APPOINTMENT
I have to say I am starting to doubt the entire diagnosis to be completely honest - Don't get me wrong, I feel no better and have definitely had new symptoms since last seeing the Dr one week ago.
I went to him as Tramadol has now become ineffective for me at night - so I am in pain day and night, struggling to sleep through the pain or to do anything at all.

I have also read up on diagnosing Fibro ... everywhere seems to say it's done by a process of elimination of other conditions with similar symptoms, blood tests, xrays, scans etc.
I requested some kind of test to check it was nothing else, mostly because all friends and family are saying ' Sounds like me when I was diagnosed MS/RA/ME and so on'. I figured it makes sense to rule out anything else.

So, upon requesting further testing, a pain med that may work and something like physio to assist me in doing correct stretches.
I got NONE of these. He refused to do blood tests as he is certain its Fibro ... and the others he kind of blathered over, took me off the Citalopram as it clearly isn't working for me (the miracle drug that was to cure me in 3-6months) and he send me on my merry way with a new prescription of 30mg of Seroxat a day.
Not sure about anyone else, but I seem to lose the fight and run out of words.
I have not had a tender points or any other physical examination either which frustrates me beyond comprehension.

A&E
My mum is convinced that taking me to A&E the next time I feel at my worst - she believes they will test thoroughly there before diagnosis and treatment. Sometimes this feels over dramatic to me, other times it seems perfectly reasonable. Alot of friends and family have suggested this path rather than fannying about with doctor after doctor.

SYMPTOMS
Further to 'typical' symptoms of pain in most of the body, constant exhaustion after little activity, headaches and restless nights of sleep; I am suffering with headaches, memory loss (whole conversations and words), numbness/tingling in my lower back, numbness/tingling in my upper left leg, excruciating/disabling pain in my left leg, extremely painful wrists, lack of concentration when driving (noticed I was paying more attention to pain than the road I was driving along) ... I cant think of everything but you get the jist.
This is so life changing and has not improved in over a month now - Coping is becoming more and more difficult.
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Re: Newly Diagnosed & More than a little confused?

Postby denys » Fri Aug 26, 2011 1:35 pm

So sorry to hear that you arent getting the help you need, have you thought of changing docs, you seem to have the opposite problem to some in that he is over keen to diagnose fibro.

Its your right to have physio, rhuemy etc. so as a last resort try A&E at least you may succeed in getting some of the tests needed :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: and :goodluck2: let us know what happens :hugs: :hugs: :hugs:
Denys

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